New too. RSD Boo! Nice to be with all of you!
 

Hi everyone. I was diagnosed with "it" 14 months ago but I am one of the fortunate ones . I started Nerve blocks right away and other than, burning, aching, stabbing pain and a little muscle waist, (oops it`s in my right arm from shoulder down,) I am still able to flip the "bird" to bad drivers! The pain does get pretty severe alot but looking at me, other than the goofy look I have on my face, you wouldn`t know I have it! I hide it pretty well but I can. I hope I made some of you laugh a little because this disease brings so much sadness to so many people! My love and support goes out to all of you and I hope if you want to talk I am here. I will need to talk to you guys too. It is just great to be able to "talk" to people who "know". Believe me I have had my times and have lots of fear but I try to keep some humor in life because some days it may be the ONLY thing that gets you through! I won1`t go into the long story of how I got it just now but I just wanted to say hi everyone. I hope sometimes I can make you smile.

RSD vs RND
 

I'm new to this site and still trying to find my way around. I need to understand - you all are writing about "RSD". My daughter was diagnosed last year with "RND" Reflexive Neurovascular Distrophy. It sounds similar, yet different from RSD. She's is in terrible pain and having trouble not giving up. Have her in theraphy and on antidepressants, but we're incredibly worried. I need to connect with people dealing with what she is dealing with.

RSD and RND are the same thing. I am guessing that your daughter received her diagnosis from Dr. Sherry, as that is what he calls it. My 17-year-old daughter was diagnosed 3-1/2 years ago, and I would be happy to share what we have learned along the way. You can send me a private message if you prefer to correspond that way. Wishing you and your daughter the very best!
Jeanne

New Member - My CRPS Story
 

Dear All
I am newbie on this site and have now done a little bit of posting on the site.

I was diagnosed with CRPS Type 1 in January 2008 year after a complete achilles rupture & repair surgery done last August/September. I have most of the typical symptoms that you are all familiar with. I have the "cold" type of CRPS where my affected leg is cold and mostly I have a deep, cold, aching somatic form of neuropathic pain rather than the burning pain that many folk have. I am starting to get burning pain and hot sensations more of the time these days - I've no idea whether it is my pain changing or not. I have to use crutches all of the time with the exception of sometimes in the house.

My leg was immobilised for 10 weeks after the surgery - in a series of casts and then a walking boot. Looking back I now realise that the kind of pain I had and the discolouration when I stood up were not normal. I didn't know any different having never had an injury like this one or any invasive surgery. I couldn't understand why the painkillers weren't working and why the pain was so bad weeks and weeks after the surgery - everyone just kept telling me "its a really painful injury".

I started my physio in mid-november and had no movement at all below my knee. I could barely wiggle four of my toes. I struggled to make any progress week after week and the pain was terrible. I couldn't make the transition from the boot into shoes nor could I get rid of the crutches. There were times the pain was so bad that I was physically sick. This went on until January and eventually after much backwards and forwards between the physio, the orthopaedic surgeon, my GP and the pain nurse, I saw a pain specialist and CRPS Type 1 was diagnosed at the end of January. I had a lumbar sympathetic block in February which wasn't terribly helpful so it was decided not to do any more. I have tried various meds and have settled on a set that make a reasonable difference to the pain and to the temperature and colour of my leg. Its bearable most of the time is the best I can say.

I started to get spasms and tremors in my affected leg in mid-March which spread over about 2 months to my whole body. The movement problems have continued to get worse - affecting more and more of my body, becoming more intense and more frequent. I have constant muscle spasms everywhere, sudden jerking, tremors, spastic posturing, weakness, dystonia, scissoring, slow twisting of my limbs and body plus I have stretch reflexes. I have mostly got flexor spasming but I get extensor spasms when I lie down. I find it virtually impossible to walk even with crutches because I can't make my legs move - they are rigid and I can only slowly drag them along with huge effort. I experience periods of paralysis where I can't move or stand up although I can feel my legs. I often can't make voluntary movements but my body is constantly moving in an involuntary way. Cold makes my muscles rigid and any touch on my legs (especially unexpected) makes them jerk and spasm uncontrollably. It is also worse if I am upset, worried or nervous. It continues to get worse virtually by the week.

I am going through various neurological tests to see if there can be another neurological explanation but I have been told by a couple of docs that CRPS can't cause such widespread movement disorders beyond the affected limb. My reading of the medical literature would suggest otherwise - I can accept that it might be very rare but it does seem possible.

I guess I have been lucky that as a bit of a gym junkie, I kept going through the whole time my leg was in plaster. After that I started swimming when the physio and ortho told me it was OK. It was absolute agony (which they couldn't understand until I got the CRPS diagnosis). I think they thought I was just feeble! I tried to walk and do the achilles rehab exercises in spite of the fact that I was in absolute agony and couldn't seem to progress. I think that sticking at these things because I was utterly terrified that people would think I wasn't trying hard enough probably prevented me getting a lot of the problems that are caused by not using a CRPS affected limb. I also kept working at getting a shoe and sock on so that probably helped to prevent the extreme hypersensitivity and allodynia reaching such a level that I couldn't bear anything to touch my skin.

I have kept up going to the gym all the way through even when I suffered from the inevitable bout of depression that followed the "high" of getting my diagnosis. It has helped pull me through in so many ways and I go 5 - 9 times a week. I swim (totally unable to use my legs since they are completely paralysed when I get in the water), sit on the bike (no resistance and very slow or the spasms become impossible) and do upper body weights. It keeps me sane(ish).

I have ordered a proper and very snazzy "active user" wheelchair and it should be arriving next week. Unlike some others here, I am really excited about taking the step of becoming a wheelchair user. It will give me a level of freedom and mobility that I've not had for a year. I have been utterly dependant on others and I need to reclaim some life. I have no prospect of any rehab or improvement while I have the movement problems so its a case of either embrace the assistive devices or go nowhere.

That's my story so far.

New Here, Fiance' Recently Diagnosed
 

Hi everyone.. I've just registered, at the request of my fiance', who was diagnosed with RSD last month following a crush injury to his left foot and ankle at work. His injury happened just over 2 months ago, and the RSD has already spread to his knee. He is experiencing tremors and "dancing legs" and has severe swelling and discoloration. Of course, he's dealing with constant pain, and taking 2 different meds at this time, without much relief.
We've seen the pain specialist once, and he has an appt. for a sympathetic lumbar block next month. The doctor says if it doesn't help, they will get "more aggressive". I'm really worried about this, and not sure how much more aggressive it can get! I've read that alot of people don't really get relief from the blocks, so I'm hoping it isn't in vain.
We had never even heard of RSD until he was diagnosed. We are both in desperate need of answers, and hope. We are both really glad to have found this forum, and others going through the same things.

Hi Franny and Welcome. My name is Loretta and I have had this 12 years following surgery. A sense of humor and gratitude is sooooo important to help us get thru this. The pain surely gives us enough negativity. I have both the burning and discoloration and also the cold clamly sweating. I used to have the daily shooting pain, spasms, uncontrolable jerking until I found the right Dr. and balanced my body with meds, anti-seizure med. It makes you tired and gain weight, but I was in constant jerking and electric jolts going thru my body and brain while sleeping and lifting my head off the pillow. I had to go up to 3200 mg of Neurotin for them to quit, and now I switched to the new drug Lyrica. It helps more with the pain. anti-depressants also work well with nerve pain. I also take an anti-anxiety med, because stress increases the symptons so much.I personally would rather take these meds and keep the opiates miminized. I take Vicodin. Hope we can be there for you too. In the city where I live, there is a monthly support meeting. You can go on line to national rsd orginization and put in your zip code and they can give you the closes one and a phone number to call. They have interesting speakers and talking to others who really understand is such a good thing. Hope today is a good day for you. Loretta

Hi Rita and Welcome, My name is Loretta and I have full body rsd. 12 years ago I had surgery and the next day my arm was swollen and then shoulder froze up and need lots of physcial Therapy. I was misdiagnosed and didn't really get diagnosed for 5-6 years. It only took the orthopedic surgeon less than a minute to diagnose rsd and confirm that with tests. You are in the very best situation to go into remission. The blocks work best if they are given with the first 6 months or even up to a year. I'm not a Dr. but this is common knowledge with this disorder. Sometimes it takes several blocks. An anetheologist usually gives the blocks. I would want the Dr. to have a lot of experience in this area. And Don't be in a hurry to let work comp. pressure you to sign off. This is a disorder that has no cure and best hope is to go in remission. I went in remission and then it came back with just a pull of a nerve in my hand while water skiing. It was after that, that I got a correct diagnosis. It spread from there to other hand and then both feet and legs, full body.I'm so sorry your fiance had this happen to him. My husband and married daughter have been so wonderful. I am going to soon apply for social security disability. I've waited as long as I can, this has totally disabled me from working in our business. My Dr. is supportive. My daughter is a court reporter so she gave me a name of an attorney that is good. It takes a long time to really see the consequences of the damage to your body. It's really more than that. Constant pain and the meds take their toll emotionally. So welcome to this forum- it's full of loving, compassionate women and men who have so much experience with this incredible disorder, there are a lot of Drs. that don't know much about rsd or have even heard of it. I have learned the most from this forum and my Dr.:) If your Dr. isn't experienced in the blocks, it's worth doing research and asking questions about their knowledge and experience. Hope all goes well with the block. Loretta

Hi

i am new to the site, but have been researching this new disease that i have since 11/07, and i had never heard of it.
i had a car accident, (was rear-ended) and the whiplash triggered the onset of symptoms from my degenerative disk disease...worse on the right side. my neck pain was always worse on the right, and so i had agreed to go through with steroid injections (ugh )...the second one damaged my spinal cord. since january i have had pain in my joints so bad i look like an old woman when i first get up from bed...the skin on my right hand looked like it was rotting, and was so dry my hand would bleed in several places. wounds take FOREVER to heal, and the pain i feel is excruciating, especially in places where i am hypersensitive (the inside of my right upper arm, it hurts so bad to be touched i see stars). i am trying to find some way to deal with it other than all the meds i am on, which have me feeling loopy and sleepy half the time. i had 2 stellate blocks, and am seeing a doc in a university hospital...maybe a spinal stimulator??
thanks to all, it is great reading your stories. when i tell people here what is wrong with me, they just stare at me (never heard of it)
my surgeon (have had many other issues along with the nerve stuff!) has told me that i am a walking symptom for RSD, he says it is very difficult to diagnose. great, right? !

[QUOTE=janesvett;358899]Hi

i am new to the site, but have been researching this new disease that i have since 11/07, and i had never heard of it.
i had a car accident, (was rear-ended) and the whiplash triggered the onset of symptoms from my degenerative disk disease...worse on the right side. my neck pain was always worse on the right, and so i had agreed to go through with steroid injections (ugh )...the second one damaged my spinal cord. since january i have had pain in my joints so bad i look like an old woman when i first get up from bed...the skin on my right hand looked like it was rotting, and was so dry my hand would bleed in several places. wounds take FOREVER to heal, and the pain i feel is excruciating, especially in places where i am hypersensitive (the inside of my right upper arm, it hurts so bad to be touched i see stars). i am trying to find some way to deal with it other than all the meds i am on, which have me feeling loopy and sleepy half the time. i had 2 stellate blocks, and am seeing a doc in a university hospital...maybe a spinal stimulator??
thanks to all, it is great reading your stories. when i tell people here what is wrong with me, they just stare at me (never heard of it)
my surgeon (have had many other issues along with the nerve stuff!) has told me that i am a walking symptom for RSD, he says it is very difficult to diagnose. great, right? !

Hi Janesvett, and welcome. so sorry you have rsd. Did the blocks help at all. That being done within 6-12 months is the best shot at remission. I was way to long getting diagnosed- like years. I have it full body now. Please don't tell us you have settled with the other cars' insurance company. This is a very long term expensive disorder.(my daughter is in the legal field.) What meds are you on? I'm very low energy from the meds and have gained a lot of weight. partly from the meds and partly because I can't play tennis every day and water ski and snow ski and aerobics and running and biking. Needless to say I had always been very active. Swimming when I can. I had never heard of RSD either. Actually was misdiagnosed and always sorry I didn't go after the Doc. My mother was misdiagnosed and died at 46, cancer. We sued and won a large settlement, not a easy thing to do. You can't always get justice in the court system, but sometimes. Some Drs. don't like to treat RSD patients, especially if they think a lawsuit is in the
wind. Hope you can get some pain relief. I haven't had a scs, had heard good and bad about them. I sure would check it out and the doc doing the procedure. Again welcome, Loretta

New here, not new to RSD...
 

Hi all, I've joined this forum because I am both a patient with RSD and neuralgia, as well as a professional who sees children who often have neurological issues (not RSD). Actually, the professional interest was what brought me to NeuroTalk initially, but I was delighted to see you also had support for me...

I have had RSD for about five years now. It started with nerve damage down my right leg due to a spinal issue (trapped nerve in my spine had to be stripped some during surgery when the surgeons tried to removed the bits and pieces of a mangled disc, and the nerve swelled etc--I wasn't moving for some weeks at that time and surgery was the only option left). I think they docs knew I'd have some nerve damage, but the hope was that I'd get more movement and at least be able to do a little better. Well, the surgery was a success on that end--I needed a lot of rehab, about a year, I think, going from barely weight bearing to a walker to crutches to one crutch to a cane (still using a cane some of the time), but I am walking again, and I can sit, and I can put on my own clothing (always nice to be able to pull on one's own underwear...after heathaides, friends, family, and pretty much just about anyone had to do that for me for a time...goodbye modesty...).
I have nerve damage going all down my right leg, with loss of sensation, loss of strenth, reduced range of movement (the nerve is trapped in the scar tissue from the surgery but they cannot go in to release it out of fear of making more scar tissue and because I had a reaction to the anesthesia which makes additional surgeries a problem unless they are for life-saving reasons only), etc. I also have neuralgia in that leg and less neuralgia in the 'good' leg (from pressure of the spine on other nerves where the other discs in my lumbar spine are messed up, but at least allowing me some functioning--and anyway, another surgery isn't an option now due to the anesthesia issue). I've developed RSD in my right foot pretty much after the surgery, but it took a while to realize what it was becasue of all the nerve swelling and other stuff.
I've been fortunate that my RSD isn't spreading much--it is pretty much relegated to my legs, worst at my right foot and affects both calves. It is not too bad on the bottom of the foot, thank goodness, so I can put weight on my leg, but it is very bad on the top of the foot and the ankle area. It got somewhat worse after I sprained my right ankle (the nerve gets pulled when I walk and then my leg falls asleep--how it can both hurt and fall asleep I am still wondering, but it is true, it does happen--and then I step on it funny) and tore ligaments in it which cannot really heal well and haven't fully healed a year and a half later.
I have a hard time tolerating ANYTHING touching my foot, but life being what it is, I have to (I'm sure you know the drill....). I found some socks (100% cotton, thick, no seams, cushy, extra softener in washing) that I can tolerate with the least pain, and shoes that open wide in the front and close with velcro but securely enough that they don't rub-around as I walk. I don't look like anything's wrong (sans cane, when I need it). I'm sure you know the drill of that, too.

I'm taking some medications to help with the results of the anesthesia affecting my autonomic nervous system (makes me lose conciousness without warning, basically, and affected my heart--something they couldn't have known beforehan, it wasn't really a malpractice or anything), and that condition also affects my choices as far as RSD treatment goes: I cannot get any of the injections or nerve blocks because they can aggravate the condition I have and throw it off balance again. It is not only that losing conciousness in the middle of the street is a little risky and that I have been to more ERs that one usually would see in a lifetime, but also every time I fall like that I mess up my already messed up spine more...and risk more RSD...so it is important to keep the relative status quo (read: me staying concious) that my cardiologist labored to achieve.
I took Mobic for about 3 years, but then got a recurrent gastric ulcer and had to stop that.
I was also on Neurontin for about 4 years but we recently tried to taper it down and realized it was no longer doing anything much (other than controlling some of the more annoying--vs. painful--neuralgia symptoms) so it wasn't worth it to keep taking it.
I'm taking Tramadol (helps a bit with the calf and back and hip pain)
And Morphine (does nothing for the RSD but helps with the calf-back-hip pain and therefore reduces my overall pain a bit to make it overall more manageable).

I don't know anything that actually helps the RSD directly, other than continuing to use my leg as much as I can, not letting myself develop too much avoidance around it (you know--not to keep it away from the water in the tub or from the sheets at night or socks and shoes etc or even the sand on the beach--though I will not do THAT again!!!). And learning to live with the pain and relegate it to some corner in my being so I can go on with my life the best I can.

It always helps to get support and hear from other people who have RSD, because it is a rather lonely disease, in the sense that one might not LOOK like one is in pain or anything is wrong, and therefore it is hard for people to relate to the fact that I am in constant pain (not that I need them to relate to it, but it does help if they understand it...).

Thats it. I probably wrote more than any of you ever wanted to know...
Looking forward to chatting with yas,
Annie

Hi Gymjunkie and Welcome to our group of compassionate and caring people.
I'm so sorry you have this RSD. I had not even heard of it 12 years ago. I had breast surgery-two benign tumors- I woke up next day with swollen arm. then my shoulder froze up. My Dr. sent me to Rehap Specialist. I had 100 treatments to get the use of my shoulder/arm back. Also had an hour of massage, that I paid for before the torture hour. Shortly after, the other shoulder froze up and again therapy. Then the left hand froze up while water skiing, no use of fingers at all. Was told I had rheumatoid arthritis. Flew from Arizona back to Oregon to a sports injury group. The Hand Dr. said RSD in 30 seconds. More therapy and desensitizing. It's amazing how many Drs. that have never heard of RSD. I, like yourself ,was very active, Tennis, Swimming 3 times a week, club work out, snow skiing, 10 K 1/2 marathon, horseback, That part of my life has been shattered.Now full body, and yes I have spasms, jerks, electric jolts from sound sleep to jerking my head right off the pillow. It's the meds that put that under control. My Dr. is a Psychiatrist,Neurologist, and degree in Pharmacology.It was the neurotin that controled the spasms and now switched to to Lyrica. For me, the Lyrica worked better on the pain. They are both anti-seizure meds. Both cause weight gain. I have always read and heard on this forum, the best chance of remission are the blocks before the first year anniversary. I didn't have any, because of being misdiagnosed for so many years. The anti-depressants do work on nerve pain. Because RSD is an autonomic disorder, it affects circulation, and blood pressure high and low. I've had some heart involvement. Recently someone wrote about a ketamine combination compounding cream to rub on the burning feet. My Dr. asked me this week, to fax him the information. I'm going to try it. I also have the cold, deep bone pain. I stretch and exercise every day. Swimming toe exercises actually changed my curling toes to go back in the right position. My arms are twisting now. Working hard to get the weight gained back off. Do you have trouble sleeping? Most of us do. It's miserable not being able to get to sleep, even with ambien cr. I think the anti-anxiety pill helps keep me calmer. It's hard with 24/7 nerve pain. I get very bad headaches. Also have trigeminal nerve pain on my left temple. Do you get skin rashes or red dots??
I'm so sorry again about your paralysis, you sound very strong and determined to make the best of your situation, but not giving up. I'm wondering too, if you have something in addition causing the paralysis? I know a lot of us end up in a wheelchair with whole body RSD or lower body. Anyway, I wish the best for you. I'm married-40 years , my hubby does a lot around the house, Our daughter is married 8 years, and moved to Chicago a year ago. She comes every two weeks and works 2-3 days and helps with the house. We live in Arizona. I think Oregon, where we moved from, would be difficult with the cold and rain. Take care, Loretta

Hello
 

Hi! I am new to your board. It was recommended to me by a friend. I was diagnosed with RSD about 1 1/2 years ago after a year of misdiagnosis. But the doctors think I have had RSD in mild form for 18 years since I crushed my hand in an industrial accident. But a simple carpal tunnel surgery & ligament repair surgery in April of 2006 started what has been a very hard two & 1/2 years. I am now completely disabled. I had a very active full time job with one of the top delivery companies as a courier and now am home. I miss my job terribly. My son who I am very close to also left for college last year which was so hard. I had a SCS implanted a few monthes ago. It helps but has not been the answer I had hoped for.I tried blocks but they brought no help & horrible side effects. I live in a rural area so there werent a great deal of options open to me here even though I have a great general practitonier who diganosed me first. And the pain specialist I have now is a good doctor. My husband & I were married for nineteen years but had to get divorced to protect him & our home from my medical bills. We are still together but just not married on paper anymore. Getting divorced was one of the hardest things I have ever done. But it was neccessary. For my birthday he gave me an engagment ring & got down on one knee & everything & asked me to marry him again. SO I didnt have to say we were divorced anymore but engaged even if its a "very" long engagement. I can't wait to get to know everyone. Hope you are having a good week of low pain days.
Denny

Hi Denny and Hubby, and welcome even though it's a RSD family. I have found so much good education and coping skills here. Compassion from everyone- we are all in the same boat. I can understand why it's difficult for family and friends to really know what we go thru. Boy do I understand our children moving away. Our daughter and son in law moved away 1 year ago today. From Phoenix, to Chicago. We miss them so much. I've been up once, but my husband hasn't been up yet. Our daughter keept her job here, an independent court reporter whose firm let's her maker her own schedule. So she flys home every other week. Stays 4-8 days. Her husband comes when he has 3 or 4 days off. That's been so wonderful. They both help me with the house as does my husband. Do you care to share any more details on your scs- what you like and your disappointments? That's interesting about the 18 year diagnoses- Mine was was diagnosed about 5 years later. now total of 12 years and full body. I'm have terrible time sleeping at night from pain and headaches, have trigeminal nerve pain in left temple and now I'm sure the rsd is in my left eye. Incredible pain. I'll call my Dr. tomorrow.Do you live in warm
climate or cold? /what school is you son going to? Does he know yet what he wants to major in? That sweet your hubby was so sensitive. Wow a new engagement ring Last week I tried to get disability but was turned down as We have had our own business for 40 years and I lack 10 credits. We have asked our accountant if we can fix that and qualify. I'm on a group policy with our company. Otherwise , wouldn't qualify.Do you have the one son or more children, we just have our daughter.

I am really sorry you can't work now, and you loved it so much. I did too.
We have a coffee business. We have drivers and trucks and deliver to businesses and car dealerships, all kinds of business where they want to provide for employees and customers. I used to meet with new clients and show them catalogs of equipment to choose from and different coffee samples.I liked meeting with people, everyone loves coffee. We provide Starbucks, seattle's best, all kinds and also vending machines that provide one cup at a time bean coffee and mochas, latte's etc. With the economy, even business's are cutting back. Hope the best and glad you like your Drs.
that can be a challenge. I like mine too, see him once a month. Take care,:)
Loretta

To Miss Loretta
 

Loretta, Its so nice to meet you. Thank you for making me feel so welcome. I only have the one son. He is a driven young man. He goes to Oregon State University. He just changed his major from mechanical engineering to political science with a minor in engineering. He is an Air Force ROTC Cadet. He wants to spend his life in the Air Force serving his country with a goal of being a general one day. You are lucky to still see your children so often. Even though my son is only 2 1/2 -3 hours away I go monthes without seeing him. He has a great deal of commitments because of ROTC. But I am very proud. If not a little scared. I like my SCS & it helps my pain level on a day to day basis. It doesnt help a lot during a flare. It however did not help as much as I though it would & did not give me my life back like I though it would either. I thought it would cut my pain by 50% or so & I could go back to work.Not in my pevious job (it was a high energy & physically demanding job) but I thought I could get a college education & become a teacher. But my pain level on a good day was only cut by about 20%. More than anything it takes the edge off and helps me keep my sanity. I have beeen in a bad flare for 3 week or more and am jst now coming off it. The SCS barely helped but at the same time I didnt want to turn it off to take a shower or drive anywhere. I am so sorry you are in so much pain & I hope your doctors can help. I have heard RSD in the eyes is awful. I have friends who have it full body & that scares me to death. I just went to my pain doc yesterday & I am not very happy with him right now. It is the first time that I have felt no convidence in him & that he has given up in helping me. I think I am taking his control over my pain meds away from him and giving them back to my general practioner doc. I am closer to him & feel like he takes better care of me. I live in the high desert of centeral Oregon. SO I have both warm & cold climate. We have a distinct 4 seasons. I am not looking forward to winter. It is my worst time. The snow and ice & cold are not my friend. I dont know if I missed anything else you wanted to know. If I did just ask me again. I am sorry. It was really nice to meet you. Please let me know what your doctor said. And take care.
hugs,
Denny

Hi Denny, Thanks for writing back. There are many Drs. that really don't like to be involved with RSD patients. Sounds like your G.P. Dr. is compassionate. My father was in the Air Force here in AZ. That's where he met my mother. He was a pilot. My son-in-law just finished his first year as a commercial pilot. That's why they moved to Chicago. Yes, we are so happy they come 'home' so often. Our daughter and myself were born in Eugene, not far from Corvallis as you know. We loved to ski at Mt. Bachelor and for about 17 years we spent 10 days at the Cove, Lake Billy Chinook. water skiing and my husband loved to fish. There were about 4-5 families that went every year. I love Bend, Sisters, and Sun River. I know what you mean about the cold not being our friend. If you swim, it's important the water is at least 86 degrees. In the winter, I use heating pad and bean bag in the micro. I have called my Dr. yet since he changed a couple meds.Loretta

My VERY Long RSD Story
 

Hi everyone, This is my very long RSD Story - I need to update it but thought I would post it. I am thinking about putting my story into a book to try and help raise awareness about RSD.

My RSD Journey.

It’s hard to believe that just over a year ago I was a normal 12 year old: I went to school, had good grades, went shopping, had fun and did all of the usual things that a normal 12 year old would do.

Then on the 20th March 2007 all of this changed when I fell down some steps outside my moms work and sprained my left ankle. My ankle was painful but both me and my mom thought that it was just a normal ankle sprain and that it would be better within a few days – we couldn’t have been more wrong!!

Over the next few days instead of getting better my ankle gradually got worse and the slightest touch had me crying in pain. Knowing that something wasn’t quite right, my mom took me to ER, where they X-Rayed my ankle, told me that I hadn’t fractured any bones and that I should rest, elevate and ice my ankle over the next few days.

I didn’t think things could get any worse but they did, so my mom took me back to ER for a second opinion. Once again we were told that there was nothing to worry about, but that I may benefit from some Physical Therapy. This visit was to be my first of many experiences of the lack of belief and mistrust, some health professionals have in RSD patients.

Not only was I told that I needed some Physical Therapy, but that I should get my act together, stop dwelling on the pain and if I did that my ankle would get better.

By the time I had my Physical Therapy assessment the following week, my foot had begun to rotate out from the ankle and the slightest touch to the area round the ankle bone caused me excruciating pain. I was told that I had probably torn a ligament, given crutches to help me to bear less weight through the ankle until the tear had fully healed.

The following week I went on vacation with my parents to Spain and managed to increase my walking distance although the pain never went away. Unfortunately on the last night someone knocked into my ankle and I spent the rest of the night crying and in agony.

Over the next month I had twice weekly Physical Therapy but despite this the rotation in my ankle became fixed, the area of pain increased and walking became more difficult.

Eventually it was decided that something had to be done to stop the rotation so the PT's contacted ER to ask them to arrange for my leg to be placed into a cast to try and correct the rotation.

Even though the cast was supposed to remain in place for 2 weeks I had to have it removed after 4 days, my ankle and my foot were trying to rotate within the cast and I was unable to do anything because of the pain.

Until this time I had somehow being able to go to school in between hospital appointments but over the next few weeks I often had to come home due to the pain or couldn’t make it to school in the first place.

As the cast had being unsuccessful an MRI scan was ordered but I was told that I may have to wait 3 months for this to be done, so I was referred back to Physical Therapy. It was this time that the PT's first mentioned that I may be at risk of developing RSD. From what I understand now there is no such thing as being at risk of developing RSD and that I actually already had it and already had done from the very point in time when the injury had occurred.

I had regular Hydrotherapy sessions without success and despite the junior Physical Therapist still questioning RSD she was over ruled by her senior who believed that I was making up the whole thing because I was having problems either at home or at school.

The very last Hydrotherapy session I had consisted of 2 PT's cornering me in the pool and proceeding to attempt to prove that I was making the whole thing up and asking me to admit that I was lying about the whole thing.

Knowing that the MRI scan was still weeks away my mom asked for a second opinion and we were referred to one of the Orthopaedic Doctors.

At first he too believed that there was some psychological reason as to why all of this was happening. Fortunately a couple of nights previously my mom had noticed a slight spasm in the muscles in my lower leg so she asked the doctor to check it out.

It was almost as though a light had gone on, he suddenly realised there was something physically wrong and mentioned that there may be some nerve damage. As he had never seen this before he needed his boss to check it out.

The following week we were back again to see his boss, who despite telling him that the spasms, pain and deformity were in my ankle, he examined my hip instead almost dislocating it in the process, suggested placing me on a waiting list to have a full leg cast put on for around 6 weeks and also suggested that I may benefit from seeing a Pain Management Doctor. Whilst I was on the waiting list it was also suggested that I see my own GP whole would prescribe me some pain medications.

My GP took one look at my foot, picked up the phone, spoke to the Orthopaedic team and demanded that they saw me the same day and began running some tests to find out what he was actually prescribing the medications for.

An hour later I was back in ER and tests were being run. The doctor there couldn’t believe I had not being admitted previously and immediately sought to secure me a bed.

Unfortunately for me, he also asked the duty Physical Therapist to take a look at my foot. Once again I was told there was no reason why I needed an admission and that PT was the best way forward in my case.

I felt at the time that I was a hamster on a wheel, going round in circles but never getting anywhere. Despite the best efforts of the doctors, the PT's were once again calling the shots!!

By now I had been in pain for 3 and a half months, my walking was slow, my ankle was permanently rotated and I hadn’t been able to attend school for a number of weeks.

My mom called the pain team at our local children’s hospital but was told that it may be another 3 months before they could see me.

On June 30th I went to visit my grandma. The effort of walking the 20 metres to her house left me physically and emotionally shattered so instead of going home my mom drove me to the ER nearest her house.

The doctor’s took one look at me and ordered X-Rays. When they came back clear they admitted me for further tests as they sensed something was very wrong. As scary as this was, I was relieved that finally someone was taking my pain seriously, but I was also sceptical that I wouldn’t get any closer to knowing what was wrong.

A couple of days later the Senior Orthopaedic Consultant came to ask us if we would attend his team meeting where a discussion of my case would take place.

I found myself in a room with around 10-15 doctors who discussed my case with me and my mom, and carried out a full physical assessment.

They told me that they suspected I had RSD but none of them had ever seen a case before, so they had made arrangements for me to be transferred to our local Children’s Hospital.

Less than 4 hours later on the 3rd July I was seen by the Pain Management Consultant at the Children’s Hospital, the very person I would have to wait 3 months to see.

The PM consultant discussed my history, arranged an MRI scan which ruled out any other problems and diagnosed me with RSD (Reflex Sympathetic Dystrophy). Finally I knew what was wrong, and although he could make no promises as to how long my path to recovery would take, or how many twists and turns there would be along the way, I had someone who believed my pain was real and there was a reason for the rotation in my ankle.

The following day, 4th July, he arranged to do a bier block which could possibly reduce my pain for the first time in months.

Looking back now it is ironic that Independence Day 2007 would be a defining moment in my battle to regain my independence. I like to call 4th July “Loss of Independence Day”. For some reason the nerve block didn’t have the desired effect and instead of reducing my pain the block caused me to develop balance and coordination problems, leaving me in a wheelchair.

The hospital had never seen this before and believed it may be a temporary complication which would wear off once the drugs began to leave my system.

I was allowed to go home for the weekend and it was then that the reality of the situation hit me. I couldn’t walk, couldn’t climb the stairs to the bathroom or bed and had to rely on my mom taking me everywhere.

When I went back to hospital on Monday morning, the consultant was amazed that the problems persisted and referred me to the Physical Therapists and Psychologist’s attached to his team and prescribed new medications.

I had never had a good relationship with Physical Therapist's in the past and the new ones would prove no different.

The PT's believed that because they had never seen RSD present with movement disorders before they didn’t believe they were linked directly to my RSD. I remember one of the first comments made by my Physical Therapist was “It’s not that you can’t walk, it’s that you don’t want to!”

Can you imagine how upsetting it is to be told that you can control your legs, when despite your best efforts your RSD leg shoots out in front of you throwing you off your balance and onto the floor?

At the same time, the spasms in my leg, which were previously like a heartbeat or pulse around my ankle changed to become a violent twitching and jerking of my big toe, which happened at regular intervals throughout the day. Already self-conscious about being in a wheelchair, people would now stop and stare at my toe and I became more withdrawn and isolated as a result.

During July and August PT made no impact on my balance and coordination and any attempts at desensitisation were impossible as no amount of medication would begin to take the pain away enough to make touching my leg bearable.

Finally the consultant began to wonder if the Gabapentin prescribed at the time of the block was causing the new complications and arranged to change me over onto Amitriptyline.

Yet again my body reacted to the new drug, my pupils became fixed and dilated and I was unable to focus. I wanted to remain as independent as possible and despite pleas from my mom to let her help me I attempted to get myself out of the bath tub. I reached for the side of the bath to lift myself out and before I realised that I hadn’t gripped anything due to my inability to focus, I had slipped, my arm went underneath me and I fell with the whole of my weight landing on top of my arm.

Within a matter of hours my arm was bruised, swollen and had begun to close into a fist.

As it was the weekend I went to my local ER and as luck would have it the consultant who first suspected RSD was there.

He immediately believed this was linked to the original injury and wrote to my PM consultant asking him to assess my new injury.

A few days later I received the news that I was dreading, - my RSD had spread to my right arm.

In an attempt to reverse the effects of the fall I was taken off the Amitriptyline and put on Lyrica, and booked in for further Physical Therapy, this time concentrating on my arm.

Yet again, the trust I had in PT’s was brought into question when despite the PM consultant insisting I had RSD in my arm, the PT overruled this stating that the way my hand had become locked into a fist was a protective mechanism and not linked to RSD at all.

Three months later, and despite weekly Physical Therapy, I was suffering complications due to my finger nails growing and digging into my palm, so it was suggested that I was taken to the Operating Room where my hand would be cleaned, the nails cut and a splint would be used to attempt to keep the hand open.

In the Operating Room the splint was made and moulded to the shape of my hand. I was given morphine as the doctor knew that my hand would attempt to re-close and return into a fist.

By the time I was returned to the ward it became apparent that splinting may not be the answer as the ends of my fingers had began to curl up inside the confines of the splint.

By the following morning my hand had somehow managed to reform a fist and I was in a lot of pain as the morphine was ineffective.

The splint was removed and I was discharged later the same day whilst the staff at the hospital rethought their options.

During the month following the spread to my arm, my leg was sort of forgotten with all efforts being concentrated on trying to reverse the most recent injury.

My walking was still extremely unstable and my mom was having to support me along with crutches to prevent me from falling. I had also developed severe swelling in my leg and was readmitted to hospital as the doctors needed to be sure my circulation was not affected and there was no underlying conditions other than my RSD.

Using crutches wasn’t easy with my hand forming a first but we did notice that if I applied downward pressure I could somehow open my thumb enough to get a loose grip on the handles. This gave me an idea that I could begin to work on things at home.

I started by forcing a thick marker pen into the gap between my thumb at first and trying to write. We also got a new puppy and I used to stroke him with my RSD hand.

We watched in amazement as each day my fist began to uncurl a little bit more until a week later, although curled into a loose fist, I could open my fingers when needed and grip a normal pen and write. Finally something seemed to be going my way and I began to believe I could regain control of my body despite being unable to control the pain I was in. By now I hadn’t been to school for six months and I agreed to try and return on a part time basis.

Unfortunately the layout of the school meant wheelchair access was difficult and I had to transfer outside the building if I needed the toilet and work in the library as I couldn’t gain access to many of my classrooms.

The physical effort of getting ready and travelling to school would increase my pain to the point that it was almost impossible for me to concentrate on my studies.

Eventually I was offered home tuition but it would take another two months to organise.

Just before Christmas my mom had to go and do some shopping for presents for the family and as the bad weather was increasing my pain levels I agreed to stay at home.

I spent some of the time on my laptop and then decided to get back onto my bed and rest. I somehow managed to bang my arm on the corner of the desk during transfer to the bed and by the time my mom returned home around 30 minutes later the whole of my lower arm had swollen to twice it’s normal size and my hand was trying to close back into a fist.

The last thing I wanted was to lose my grip again so despite the pain I began to work through some of the exercises I had done previously and managed to keep my hand open throughout this most recent flare.

I wasn’t due Physical Therapy and had no doctors appointments booked due to the Christmas break so my mom emailed a photo of my hand through to the doctor’s office.

We received a call by return and were asked to come to the hospital the following day.

The doctor, PT's and nurse examined my arm and my PM consultant confirmed another flare of the RSD in my arm. I distinctly remember the look on my PT’s face when I explained that she had told me I had never had RSD in my arm, it was just my body’s way of protecting me after an injury due to the fear of my RSD spreading.

My doctor told her this was a clear cut case of RSD and there was no way I was either consciously or subconsciously controlling the way in which my arm was reacting.

It was also explained to me that my nerves were so “wound up” at the moment that if a slight knock could cause such a reaction in my arm, then it was equally possibly that the nerve block all those months earlier could have caused a reaction resulting in my loss of balance and coordination.

Despite agreeing with the diagnosis, we felt that it was now time to seek a second opinion, particularly with a view to treatment options, and my PM consultant agreed to look into where else we could go in the UK that would have seen the sort of dystonic RSD I was experiencing.

The problem was in the UK that although RSD is predominantly an adult illness our medical system directed that given my age I had to be treated at a children’s hospital. Eventually it was decided that I be transferred onto Great Ormond Street Hospital in London, the leading children’s facility in the country.

Whilst waiting for an appointment to go there my medications were increased and I continued to have regular Physical Therapy sessions. My relationship with the PT’s had never been good and this wasn’t about to change now. I found that they often made remarks which were never quantified, the latest one being “If your house was on fire and you were upstairs alone, do you think you could get out unaided?” The realisation that I probably couldn’t upset me to the point at which I became extremely agitated and although the intention of the statement had been to ensure I was safe and secure in my home, the fact that no one had ever explained this and the PT’s seemed to persist in their belief that I was somehow responsible for the situation I found myself in was unbearable.

I already had had terrible experiences with PT’s over the past year and nothing was about to change any time soon, though my mom demanded that any remarks made in future be explained fully as they could often be misinterpreted.

Before I went to London another, seemingly small problem arose, I developed an ingrown toenail on the big toe of my RSD foot. As the toe was now spasming almost constantly, and due to the pain and hypersensitivity in my foot and lower leg it was agreed that it would be removed in the Operating Room whilst I was asleep in early April.

Whilst waiting for this procedure, I made the journey to London to see my new PM consultant who confirmed the diagnosis of RSD with the added complications of Dystonia and movement disorders and suggested that I may benefit from a full assessment with a view to being offered a place on their rehabilitation program. As I was aware of the success of the program within the United States I began to feel more optimistic about the future.

On 2nd April I returned to hospital for the operation to remove my ingrown toenail.

It was agreed that I would stay in hospital overnight and be connected to a PCP (Patient Controlled Analgesic) to try and control any increase in pain following the procedure.

When I came round in recovery I noticed I was keeping the staff amused as the minute I regained consciousness my big toe began spasming continually and more violently than before. My PM consultant came to see me in recovery and said he thought things would settle back into the cycle of intermittent spasms within a few hours – how wrong could he be.

Overnight the PCP did nothing to decrease my pain and the ring block in my toe was wearing off making things even more painful. Around mid morning we noticed my whole leg starting to shake ever so slightly and within an hour it was thrashing around wildly for one minute out of every three.

My PM consultant tried Diazepam to stem the shaking but again this proved ineffective though he still suspected the shaking would resolve itself. It was agreed that I be discharged and return the following day for the dressings changing.

When I returned the following day it took 2 nurses and my mom to hold me leg in an attempt to redress the toe. My PMC stood watching in amazement and admitted he had never seen RSD presenting like this before.

Over the next few weeks a number of attempts were made to control the movements in my leg with drugs but despite this and despite the fact that the toe was almost fully healed the shaking persisted.

Walking was becoming even more problematic. I already needed the help of my mom and my crutches but now I had the added complication of timing transfers so they did not coincide with the shaking which could potentially throw me onto the floor.

I returned to Great Ormond Street Hospital for my PT assessment in May. The lead practitioner there explained that although she had seen over 100 cases of children with RSD mine was only the second case she had seen with these types of movement disorders and I also had the added complication of the Dystonia as well.

Even though it sounded as if the odds were stacked against me she explained that she had manage to regain varying levels of function and mobility in all but a few very small number of the children she had treated and that if I was willing to put 101% into the rehabilitation program she was hopeful that it would prove to be a turning point in my battle against RSD. By this point I was ready to try anything, however difficult, to regain control over my leg in the same way I had recovered from the two flares in my arm. Despite being told that it would be the hardest thing I would ever do I was actually looking forward to it and hoping the eight weeks before I started the program would pass quickly.

Great Ormond Street Hospital spoke to the PT's at my local hospital about my RSD and the way in with it should be handled and the change in attitude was amazing.

Where I had always been reassured that they had seen several people with my particular complications, the staff now admitted that this was not the case and that basically as they had never seen movement disorders to this degree they had no way of knowing how to treat them.

With support from GOSH they began targeting exercises which would be reinforced during my stay in London and were aimed at reintroducing weight bearing in an attempt to control the spasms.

Despite knowing that my best chance of remission lay with the rehabilitation program I was also reffered to a neurologist who would assess the movement disorders and look at treatment options should the rehabilitation program not prove to be as successful as it was hoped.

A year to the day since I last walked I went to see a Neurologist about my movement disorders.

I didn’t remember him but it turned out he was involved in the initial diagnosis and was surprised to see how much worse things were than in July last year.

He and my Pain Management Doctor are currently involved in writing a paper and conducting a study into movement disorders in children with RSD.

Although the numbers studied are small, it is hoped that the paper will be well received as it is one of the first to specialise in childhood RSD with the complications I suffer from.

Whilst the nine other cases studied happened up to 15 years ago and long term follow ups have not been made, they have asked that my case being the worse movement disorders they have seen to date will form the basis to take this study further and allow regular analysis of treatment and the progression of the illness over a long term period.

Although the study only followed patients for a maximum of 3 years after diagnosis it is apparent that early diagnosis is essential if a successful outcome is to be achieved.

A reduction in tremors has been seen in half of those seen so far but very few have had a full resolution of the problem.

I was advised that Physical Therapy would be the best treatment option as it has no side effects and I do not tolerate medications very well.

If the PT results in a partial reduction in the tremors and Dystonia my Neurologist will then prescribe medications which will hopefully stem the spasms even more and hopefully bring on my best chance of remission.

Hopefully the Physical Therapy program will lead to a full remission and my story will bring hope to others.

Ali, I thought I was young to be going through this but I am old enough to be your mother (I am 38). You have been through so much Kiddo & you still seem to have such a positive outlook. Your Mom must be so proud of you. I can't even begin to imagine how hard this must be for a person your age. I hope the new program is successful & you find remission. Remember that it happens most for those that are young & that are treated aggressively & it sounds like you & your Mom have fought hard to find that treatment. It sounds like the UK is no different than the US though in finding doctors that even believe in the pain associated with RSD. Finding good doctors is certainely the key. I am sorry your pt specialists have been horrid. I have heard that over & over again. I haven't had problems myself except that they hurt me but through really no fault of theirs. First it was because I wasnt yet diagnosised with RSD & then it was because they were trying things that were just flaring me up so bad I couldn't take it. They finally just gave up & said they were doing more harm then good. But I have heard stories like yours from people over here too hun. I don't think it is just your age. Part of it at least is our disease not being recognized y the medical community as a whole. Keep you positive attitutude because you are truly an inspiration whether you mean to be or not. It is truly my honor to meet you though I wish in heart of hearts that I it hadn't been neccessary for you to seek out support.
hugs,
Denny

Loretta, Sorry it has taken me so long to write back. I belong to another board where I am a mentor & I have been very busy with it lately. It has taken what computer time I can tolerate. I can't believe you used to hang out in my "neck of the woods". What a small world!!! When we owned a boatwe would take it to Lake Billy Chinook but I liked Prineville Reservoir better. Prineville was more family oriented & people followed common boater safety better there. But I only live 20 minutes or so from the cove. A lot of people from the valley vacation over here to get to the better weather. Its funny to me how people think the "whole" state of Oregon is nothing but rain. People have a hard tie believing me when I tell them I live in the high desert of Oregon. It'slike I am lieing I guess or don't know what my own climate is. I mean we get 9 whole inches of rain a year where I live. Not exactly like the Willamette Valley as you know from being here. If you ever get the chance t come back it would sure be fun to meet for coffee or lunch or something. Thank you again for making me feel so welcome. You are a wonderful lady.
hugs, Denny

Hi Denny, Thanks for the invite. I certainly would contact you, that would be wonderful. No immediate plans. Our daughter now married for 8 years would love to take her husband to Oregon, to the cove, coast and Eugene. My husband and I have a lot of memories of the cove. 17 years of 10 days. Wow, lots of skiing. We liked to stay in the E section up above. We had a motorhome and Blue Water ski boat, built by the cove. We have the boat here in Arizona and the motorhome is parked in Washington State by his Mom's house.We live pretty close to several lakes here and had lots of fun till, I pulled a nerve in my left hand, which now is crippled for the RSD. I didn't know I had RSD and that's how it spread full body. Misdiagnosed here and flew back to Eugene and was diagnosed in 1 minute at Sacred Heart Hospital by sports injury Dr. It's funny, I got RSD from surgery one floor apart several years earlier from a bad surgery. Guess, I'm still a little bitter over it, even after lots and lots of counseling. Anyway, grateful for so many things. Take care, Loretta

Hi Lisa,
I'm sorry you have RSD. It's amazing how long we can have it yet learn more and more. I wanted you to know I live in Scottsdale, should you ever want to talk or post directly to me. I developed RSD the day following surgery back in 1996. It started with swollen arm and then frozen shoulder. It wasn't diagnosed as such, just complications from left breast surgery. I had PT and massage therapy. The rehab Dr. I was referred to and that oversaw my pt wanted me to see Orthopedic Surgeon. He was to operate to 'speed' up the process. Would still have to have PT. I said no thank you. I had already been thru about 1/2 (50) pt. I did the massage therapy on my own just before pt.
It was torture.So I finished out the therapy and had nearly all range of motion back.

Hi Lisa again, they told me it might move to other shoulder , I thought that sounds strange, I didn't have surgery there. Sure enough, a few months later after we moved to AZ, the right shoulder froze up.more therapy. Then while water skiing at Bartlett Lake, I felt a pull in my left hand, then started swelling. PAINFUL Dr. said RH arthritis. Didn't make sense, tests said no. Flew to Oregon, diagnosed by an hand ortho with RSD within one minute.

Hi again Lisa, I know it is hard to be honest with friends and family, they love us so much and can't stand to see our lives change and to be in pain and not be able to do what we used to do and love. I know I'm careful with my 29 year old daughter and my husband. They have both researched RSD on the net, so they know it's bad. They also both went with me to my Dr. of the past 4 years. But I feel caring for myself, means being discreetly honest.
I do have friends I can say anything to, two of them have RSD too. full body from a car wreck.My Dr. is a pschiatrist, neurologist and pharmacologist.
of course I can cry and say anything.
Lisa, do you go to any of the RSD support meetings at St. Joseph's hospital? They are once a month on a Saturday. It would be nice to meet you in person, family members are welcome, I brought my son in laws mother.
I don't drive a lot anymore, but still can.
Don't give up. and take care, Loretta Jewell

Hi everyone I'm Tiffany a 26 year old stay at home mom. My boyfriend was diagnosed with RSD back in May..We have two children a 9 month old and a 3.5 year old. I am very glad to find this forum. Geoff got in a motorcycle accident in March and broke his foot and it turned into RSD which is preventing him from walking without crutches. He goes to physical therapy 4 times a week went through months of epidural injections and now has (sorry i don't know all the terminology involved) but he has the thing implanted in his spine and an internal battery. Well he had the internal battery implanted above his butt and becuase he is so skinny it was literally ripping out so he just had it removed and they now put the battery in his stomach. Luckily he was working when the accident occured so he is on worker's comp. He is on so many medications it is crazy and he is such a different person...I am glad to find this board to learn more about this condition and maybe find someone like me that is having to care for a loved one with RSD. Times are tough here because we are living on worker's comp and I can't work because he isn't able to take proper care of the children. We have applied for disability once and already been denied. We are in the process of reapplying...

Hi Tiffany and Welcome,
I'm so sorry what you are going thru. RSD is a unbelievably difficult condition for both the person having it and the family. Hopefully, getting diagnosed early and getting treated, it won't spread. The medications totally change a person, I am that person in our family and my husband has had many adjustments because of it.
The medication probably is pain meds, anti=seizure meds,maybe neurotin or lyrica, make you very tired, very! Also with me I gained weight, as I was so active in sports before and worked out. I've had it 12 years now and full body. Depression is a big part of RSD as it affects the Limbic part of the brain which controls that part of us, as well as decision making. I also take two different blood pressure meds- didn't have bp issues before rsd. What helps a lot for me in an anti-anxiety med. called Lorazepam and a sleeping pill. Sleeping or lack of it is an issue with most of us. Short term memory or lack therof is an issue for most of us. I sometimes grope for works in speaking, and a little slow in my thoughts. It truly is a life altering event.
I got counseling to cope with that fact and deal with chronic pain. My phychiatrist is also my pain management Dr. He is a neurologist and pharmacologist, experienced in rsd.
My husband and married daughter with me to the Dr. to ask questions and both have read on the rsd sites. My daughter is a court reporter and has done medical malpractice depostions for a rsd lady. It's very hard on her. she is 29.
I'd encourage you to read as much as you can on this forum.
I don't qualify for ssd but have group insurance thru our business we own. Personally, I was going to use an experienced attorney if I qualified. RSD is recognized as qualifing for disability. I know I will never work again, as many on this forum. Keep trying and get an attorney if they don't cooperate. When you get it, they go back to your application date for back $ and attorney takes whatever he charges out of that.
If there is a support group in your town, it would be good to get in touch with them and attend. They can provide references and a lot of support emotionally. Usually, the meetings are at a hospital conference room. You can look up RSD. org and punch in your zip code and they give you the closest one to you. Sometimes, just calling the hospital and asking for list of support groups. If not RSD, maybe even a 'chronic pain' group or Rheumatoid arthritis group.
There is a very nice lady whose fiance has rsd, is here, but just can't remember her name right name.
There are things that I have learned for pain distraction. Listening to music, reading, being involved on this site, petting my cat, keeping in touch with friends both here and former state, by phone, or letter. scented candles. funny movies. trying to keep a positive attitude.
Thank you for the picture of your family! I love kids and being a mom. Our family traveled a lot, water skiied, snow skiied, played tennis, worked out , 10k runs. swimming. Swimming is one of things that has really helped me the most to keep walking and mobile.
My toes started curling, and my Dr. gave me exercises to do in the water and got them back on the floor!
Physical therapy is really painful, I went thru three different events. My RSD came the day following breast surgery, swollen left arm, then frozen shoulder. that fixed after over a year with a few months reprieve, then moved over to right shoulder, more therapy, then pulled a nerve while water skiing. Was diagnosed with Rheumatoid Arthritis, WRONG. Changed Drs. and had RSD since the surgery. 4 years late diagnosis.
Did Geoff have blocks? Is that what you meant by injections. that and pt. are your best hope for remission, and that does happen! it really does. After my therapy and getting the use of my arm back, I was back to tennis, everything, till it hit again the other side. then had several months pain free, till the water skiing thing. Since then, it's been down hill.
You will find lot of very kind supportive understanding friends here, on both sides. It's wonderful you are reaching out to others, You'll better be able to understand what Geoff is going thru and receive the encouragement you need as a caretaker. I am so very sorry your family is going thru this. We had never even heard of RSD, as obviously half the drs. in this country haven't either. But unfortunately it is becoming more and more common. Please, reach out anytime and you will have a lot of support. Take care, Loretta

Hello everyone!!
 

:Wave-Hello:My name is Samantha. I have had RSDS for eight months now. I was given RSDS by my doctor when he attempted to give me a "temporary cure" for my Endometriosis by administering an injection of Depo-provera to stop my monthly flow. My doctor then attempted to tell me that the pain that i started feeling that day had 'nothing to do with the injection that was received at this office" and that it was just "minor back spasams from an underlying case of sciatica" and that all of the pain in my hip, leg, foot, and back was just "all in my head and I should stop worrying about it." When I went to an neurologist and was immediatly rushed into the emergency room due to severe pain from the doctor just touching my leg, I was then diagnosed with RSDS. I called the doctor who gave me the shot of Depo and told him that I had been diagnosed with RSDS (six months after the initial injection) and that I now had little to no hope for any type of 'true remission' of the disease due to the lack of attention and care by the medical professionals looking after my health. My doctor proceeded to say "Oh my god, I really screwed up, I am so sorry" and all i could do is laugh at him. To this point, because of his lack of care and incorrect diagnosis, I have been unable to get any type of medical coverage through the state, and up untill this point, (since march) I have been unable to work. So I am out possibly thousands of dollars in wages and have no known date of when I can return to work...so go Dr. Douchewad!!! other than that, life is peachy lol!!

Hi Samantha,
I am so sorry you have RSD. Injections IS one of the ways people get RSD. It must have hit a nerve. You can't understand the damage of a Dr. Not listening to your complaints after the procedure. The 'I'm sorry' doesn't cut it. This is potentially a disorder that is life time leaving you 'insurance' issue. You will never get private insurance with RSD in your record. Most of us are unable to work, The medical procedures and meds you'll need the rest of your life are expensive. I'm not an attorney, but I am somewhat educated in this area of law. I'll write more in a few minutes. soon, Loretta

Hi Samantha,
Hi again, My mother died at age 46 under the care of an idiot. My father sued and won the suit. That's been 35 years ago, but it was like yesterday. He lived 8 years and never remarried. We had a video deposition, because we knew she wouldn't be alive for the trial. Anyway, my daughter is a court reporter and I know she did a case of rsd against a Dr. for negligence. I know we got a medical practice attorney from a bigger city 100 miles away. Local attorneys don't like to up against their golfing buddies. Insurance companies representing Drs. etc have deep pockets. Most of these go on a no cost and attorney benefits by a percentage of the award and nothing if there is none.
I didn't sue my Dr. I wasn't diagnosed for 4 years. You have two years from the 'event' causing the rsd or 2 years from when you were diagnosed in most states.
We had moved states after my surgery and physical rehab. A few months later, it moved to the other shoulder, RSD. More physical therapy. Still didn't know it was RSD. A couple years from the original surgery, I was water skiing and felt a pull in my left hand.(surgery side-left breast and arm pit.benign) Fingers swelled and so painful. Dr. said it was Rheumatoid Arthritis. Didn't sound right so flew back across country and saw a sports injury group I knew and was diagnosed in 1 minute and had neuclear tests at the hospital.
The surgeon that had ruin my life, went on vacation the day following surgery. My arm swelled up terrible and his partner withdrew fluid 3 days. Doc came back and my arm was frozen, sent me down the hall to Rehab Dr. to oversee P.T She said the Doc messed me up. I came back home and got a neurologist and hand specialist and started PT again. It was rough again. Used a Tens Unit. My hand was frozen solid-fixed fingers straight. They were able to get them to bend just part way and desensitize my hand. That is such an important part of treatment-desensitize. But at least, I can cut my food now and drive, shut my car door myself, zip my clothes, button the, and type. Then I was ok for a while, then it moved to the other hand and then both feet and legs. Saw another neurologist , joined a rsd support group. The neurologist said full body, generalized rsd. Now have the lesions, high blood pressure, heart condition. RSD is an automic disorder that effect the circulation, blood pressure, high and low, loss of memory, the limbic part of brain controls short term memory, decision making. depression. Depression is no small matter, The meds for everything makes you lose your energy level. I had spasms, electric jolts during sleep that would raise my head right off the pillow. Had jerks, involuntary movements. My toes starting curling off the floor. Dr. had me exercise in the pool, dailey and got them back down to the ground.It's in my spine,lower back, neck, face, Internal organs. I don't leave the house maybe 3-4 times a month. Can't walk long or stand long.
3 years ago I woke up and stumbled into the door and bathroom, I passed out and was out over an hour. When I woke up, couldn't get up, but beat on the wall and my husband opened the door. I lost my bladder and colon, and just said call 911. He said he heard my get up-was upstairs at his office- it was at least an hour. Paramedics came and couldn't find a pulse, I had passed out again. Told my husband I was dead. Then got a pulse and got to hospital. The blood pressure was 60/40. Was in 4 days icu and $16,000 tests-Think the bill was $30,000.
I'm tell you all this, not to just talk about myself, but to let you know the road ahead can hold so much we don't know about. I expect someday I'll be in a wheelchair. I had the flue this week and blood pressure shot up 160/109 I'm on two different blood pressure meds.
Sometimes I'm sorry I didn't file suit, I can't work, I loved my job and social life. My husband and I traveled a lot. Lots of trips as our daughter grew up. I was traveling a lot with a girlfriend, in fact, the next day from the passing out we were to go to Maui. I miss that, we went every year. My husband doesn't like to go as much as I do. My daughter and I traveled a lot in her teenage years, and then we vacationed the 3 of us.
Our economic lifestyle has changed too as result of not being able to work. There are so many losses. My Dr. now says, it started with my breast surgery 12 years ago. The following day my arm swelled up so much.
Anyway, just something to think about or talk about to those that love you. No matter what you decide to do, it's always good to make a timeline of your health conditions, or journal.
I'm going to exercise and stretch now. I gained so much weight on the meds, I'm working really hard to get it off. I'm almost up to 15 lbs.
I hope I didn't offend you or try to get in your personal affairs. Certainly not to discourage you. I just remember, when I was told, I had never even heard of RSD and not a clue what lie ahead. I can't even get disability, as we've always been self employed. Take care, Loretta

Loretta...Thank you so much for your kind words. They really helped me and my boyfriend. I understand that I am in for a long and techerous battle that is going to go uphill at a 90 degree angle. I have already started on that uphill battle as the RSD that started in my right hip has spread up to my right shoulder, and my chest as well as my right side and I think my urithra. I am not sure. But...I do know that it is very painful and sometimes I am just not willing to go on fighting, but I know that I have to. I know that if I don't...no one will fight for me. My boyfriend is very supportive and loves me very much, he takes such good care of me and he really looks out for my best interest. again...Many thanks:hug:

My 11 yr old son has some of the symptoms and I am scared
 

Hi there...

I don't know if finding this forum is good or bad. My 11 yr old son was in a freak boating mishap 6.5 weeks ago. Our boat went airborn and he was in the cuddy cabin with some buddies. He got knocked around the cabin and came down hard on a ledge hitting his spine in the middle of the shoulder bones. We heard the scream.

He was diagnosed by the family dr as having a sprain and strain since the xray was normal. The first week, he got better. AT the end of the week (was on darvocet) we let him go to a bday party. Next day he went to physical therapy and then his pain has gotten progressively worse instead of better.

2 weeks in, they gave him an MRI and the Cleveland Clinic said he probably micro fractured two vertebrae - could take up to a couple months to heal. Put him in a back brace for the pain.

Pain got worse, went from vicodin to percocets and ultrams.

After 5 weeks, went back to same doctor who said he was cured and was probalby faking the pain. But in the slim case he wasnt (he is not), it might be RSD and to see a Pediatric Nuerologist and Pediatric Pain Mgmt.

Then went to a party and talked to two friends of family who are adult nuerologists that told me that he was faking it since kids CAN NOT be in pain for more than 2 to 3 weeks - they heal to quickly. And that he was probably just addicted to the percocet.

My son is in all the gifted programs, plays ice hockey, soccer and is well liked - he is not faking!!

During this time went to the CC spine center where one doctor had no idea what was wrong and another doctor said go see your family physician. The family physician meanwhile said - oh you have the Cleve Clinic drs - go see them. Pass the potato the game is called.

Could not see a pedicatric Nuerologist so called up the ped ortho who said - well I will diagnose him with RSD so they will see him faster. So in a month, we go see the nuerologist.

His symptoms - pain that NEVER goes away - constant. Muscle spasms - very severe that causes him to scream sometimes - 4 to 10 times a day. Complains last week that it the pain is burning. We have not been able to touch his back at all in 6 weeks - extremely sensitive. But able to wear shirts and lay on his back. NO DISCOLORATION except mottling on one day last week.

So he does have a couple symptoms but def. missing some of the others. I do NOT want him to have RSD. I read your stories and others and I have no idea how you all deal with this. Had no idea it even existed till last two weeks.

I have heard that if it is found early - remission is possible - anyone know of this?
Anyone been tested for other nerve disorders it might be? I am grasping at straws since it is tearing me apart to not be able to take the pain away.

Please email me if you would like. There is so much information out there, it is tough trying to weed thru it all.

Finally, I have read a lot of the stories on this forum and they have brought me to tears but I am so surprised at the bravery you guys show every day. I hope my son does not have this - but I have found a new disorder to support since after learning about this - you can not forget it.

Happy Holidays. Crunch

mollymcn - my story
 

I am a lawyer and a former medical school professor. I have fibromyalgia, pretty badly, so I took a lower stress job that doesn't damage my health as much. I know a little bit about living with chronic pain, and enough to know that RSD pain is far greater.

I joined Neurotalk a couple of years ago. I do not have RSD. My best friend does... I'll call her Penguin. Penguin has had RSD for 22+ years, since she was 12 years old. It started with a sports injury in her right knee, and after she had a baby 3 years ago, the RSD spread to her head, neck, torso, right and left arms, and internal organs.

Penguin needs support and understanding, so I decided to learn everything I could about RSD -- research, treatment, medicine, psychology, patient perspectives. I hope I can make her loneliness a little less.

Also, sometimes I feel lonely and scared of dealing with RSD and the 'caretaking' responsibilities. I don't want to do anything to make it worse!

The third reason I'm on Neurotalk RSD board is because Penguin no longer posts on Neurotalk because she found it overwhelming, and scary. So I read it for her and share non-scary tidbits with her.

That's my story.

I am a new member.
 

Hi Everyone,
I am new to NeuroTalk. I was looking up information about clonidine patches and RSD. I am finally getting some relief from my RSD with the clonidine patch. Here is my story:
I was in an auto accident back in early 2001. A tree fell on my car from a tornado while I was driving. I do not remember what happened but after months of being treated with I don't see anything wrong (as the hand specialist in my area stated), the doctor finally examined both hands and realized my thumb was dislocated and my tendon was torn. And he was a hand specialist. After 2 surgeries, one fixing the dislocation and loose thumb and the other was fusing my thumb. The pain did not stop so my family physician sent me to Dr Ostermann, a well reknowned hand specialist from Philadelphia. He was the best. Talk about a doctor that cares, I was at his office at 11 pm and he still took 1 hour to talk to me about my care. He was supperb. He told me that my fusion did not heal properly and that it needs to be fixed or wait until it breaks. He stated that it should not have been fused in the first place. It was a mistake, a surgery that should never have happened. I was so upset, that surgery cost me my job and it was not even necessary. Anyway, he refused my thumb, which is ok now, but my RSD is horrible. Since seeing Dr. Ostermann, I have been to pain specialists, neurologists, anyone that would see me. I stopped 2 1/2 years ago. I was tired of hearing "You can't take the meds that will help so there is nothing I can do for you." I heard that so often that I just gave up. This past August, my family and I were in an auto accident where a young kid hit us head on and down the entire side of our van. I remember the entire accident as I was driving, but I don't remember what I did with my hand. I started doctoring again because it got so much worse (which I didn't think could happen) than it was. A new anestheisologist came into our area from Philadelphia that my family physician referred me too. For the first time since Dr. Ostermann, I didn't feel brushed off, I felt good. He didn't tell me there was nothing he could do. In fact, he laid out a few options on the table and said in two weeks he will have a treatment plan for me. I am now on Clonidine Patches. It has been one week and my pain is getting better. I did forget to mention that I had to nerve blocks also. They didn't help but made my neck and face so swollen that I could barely swallow. I still have the burning and the tightness, but the worst of the pain is almost gone.

Hi All~
I look forward to meeting many new friends here, as I now realize I have put off joining a group forum like this for way to long. I fell and broke my left patella(knee cap) Oct of 2001, had burning pains in knee that far exceeded any torn miniscus or other. I knew this from having miniscus surgery on right knee in high school and this was nothing close to the same.
From here, I was passed over by my doctor saying it was just arthritis, said she saw nothing in the x-rays, and being the stubborn Irish gal I am, I would not except this and said I want to be referred on to orthoped! From there, he was angry at the fact this doctor let me walk around untreated with two fractures in my knee for months...
Next, Mri's done to check for soft tissue damages as well, which there was(I had a 3 in mass of tissue ripped off floating around behind cap and torn up cartalidge, so he said this would of course require that ol' scoping surgery many of us are so familiar with.
Problem with this, by the time 1st surgery time came my leg was totally on fire. After this was done the pain got even worse? He was really getting puzzled at this point since he knew he cleaned up all damaged areas and fracture should be pretty well healed by then! He said we can take one more look in there Traci but I dont think we will find anything, if we do we'll fix it ie; re tears, etc. So, on with #2! Right before they wheel me in for surgery he brings in the anthstegs. with him into my waiting room and pulls back my sheet and said let us take one last look at that leg. My leg now was purple and blue? It was known to do this often now, go red to blue to purple. Then they said were going to do an epideral on you for extra pain just incase?
I had no clue why at this point, I had never heard of ever having to have this much numbing done for a scope. So they go in, then bring me out. Found nothing. But in his own words said "We know she has what they call AN ANGRY KNEE" and he then was confident to say she has what they call RSD! They could'nt give me enough injections to take the pain away after this stupid scoping last time around! It was a nightmare. I think I used up there years supply of fentenol and vicodins.
Nearly 8 years later, hear I am. with many more stories, treatments to tell, experience under toe to hopefully help others just starting out! I know there are many out there worse than I but each of us are hurting beyound what any living thing should have to, thats all I know. And, I believe my new theory to be a very strong one! Labratories and testings are great, but if the rats don't talk back you might as well throw away the beakers! So, with that being said, I will leave you all for now, but must say I believe the strongest weapons we carry is our daily experiences... We have to learn to make our doctors and loved ones listen to us, but do it a fair and honest fashion. Don't hold back some of the real things we are feeling but are afraid to tell anyone, quit feeling like you can't tell your doctor all your symptoms each and every visist! You must! Because they change constantly from visit to visit. Keep a journal log, date it daily, write the pains and problems you experience. Then take the collected data to your doctors/specialists and they will make copies for your medical file! Take pictures of your color changes, skin rashes, blisters, etc., as these also come and go and doctors can not possibly catch this all the time. I tell you this because my story has many professionals who claim to know what they are doing, or call themselves doctors but are themselves just as puzzled as we are about the whole thing! At the same time they naturally/not intentionally always tend to think that such a major, multi-symptomatic, complex disease must be somewhat made up at times or added to, exhagerrated whatever you want to call it. Remember they are also just men and women and could get RSD just as easily as we did and hopefully never will.
In the mean time, peace out to all of you and anyone who has a loved one or family member serving in the military for us. Tell them I say "Thank you for Their bravory".
What they do every day is probably the most inspiring thing I could ever ask to see in action as far as endurance and strength goes. And when I can't get out of bed some days and wish I could just (pardon me for saying this) shoot my leg off because the bone pain and spasams are so unbearable and theres nothing I can do to make my leg and foot get warm... I think of how our men and women over in the middle east don't have beds to sleep in a lot of nights, and no showers to soak in, no computer access, no phones, cleaneness(you can throw that one out the window) they can't take showers either. If they get hurt they make do, and they don't get to come home for who knows how long... And to top it off, no matter what skeptics think or say over here, they belive in a cause! And they will fight to the end for it! This last part of my message was meant to inspire us not discourage us. People like this can be the best examples of "Love in Action" "Hero's" "Strong&Meek" "Humble". This is how we need to be in our battle for our lives again! We love our lives in action and want them that way! It takes strength and meekness to walk in enduring times. Yet we must remain humble to all others in pain no matter how high our disease ranks on the "MCGILL PAIN SCALE" at a whopping 47! (all other pains well below RSD-thus RSD being still recorded as the most painful disease to date!
So, remember, when your feeling whipped and beat. Dont forget you are taking on one of the biggest physical challenges you ever possible could in your life and your doing it! Others are watching us, and those who are also finding out they have it and who have it and don't yet know how to identify it need people like us to make everyone aware of this problem that does'nt seem to be going away for now.
However, I must say the newest "hyperbaric chamber" treatments do look most impressive along with the sucess rates!
I warned everyone, I talk to much!
and this was my quick response...(hee hee hee)
God Bless all you fellow heros and tough guys and gals out there!
Traci

DuckysIntro
 

Hi everyone! Unfortunately I am not new to RSD. I had two episodes when I was younger. One when I was 13 and one when I was 18. I had rsd in my leg and foot, and with both occasions it came on suddenly with no injury. These episodes only lasted a few months and then went away. I am 32 yrs old and having my 3rd episode of RSD and this episode is the worst ever. My story of my 3rd episode sounds amazing and unique to everyone I tell it to including doctors. So here it goes. 6months ago I woke up with major swelling in my riight leg and ankle. And again I did nothing to cause injury. I didn't fall or get injured playing sports, nothing like that. It took 3months to get a diagnosis after seeing many doctors and getting many tests done, as I;m sure many of you are aware of. I have been going for pool pt which hasent been helping. With the amount of pain i am in daily it is very hard for me to bear weight in water let alone on land. One of my doctors has me on Lyrica but I am not noticing any improvement with that either. I have had 1 nerver block done and didnt have any luck with that either. My doc now is doing a treatment where a cathreter is inserted into your spine to have daily injections of steroids (i think) to try and reverse the rsd. He is also numbing my foot and leg and trying PT that same day to hope the PT's can work with me and my pain threshold a bit easier. But again I am not having nay results with that. My doc also wants me to take Cymbalta and to try not taking the percot. So I will see how well this goes over. Will post more later when I am feeling up to it. Can't sit in a chair for very long. I look forward to chatting with everyone. !

Hi Traci and Welcome!

I'm so sorry you have RSD. I've had it is '96 following surgery but didn't get a 'wrong'diagnosis till 2000 ," well what do you know, RA" but no rheumotoid factor in blood. That doesn't make sense, so I fly a few states away to sports injury Doc, 'ortho' and he says RSD in 1 minute followed by positive testing. It's wonderful you found this site, full of loving compassionate friends, lots of knowledge and understanding going on here.

We have a couple who have HBO in their home and are doing quite well with the treatment. I have talked with Diana A and was very encouragedd. Asked my Dr. about the treatment and he is very enthusiastic about it. currently building two clinics and putting in hospital grade HBO. He is a Neurologist, Pharmacologist, and Psychiatrist. I've been going to him for about 5 years now and have lowered pain level, no depression, and no spasms, electric jolts, jerks, etc that I has having dailey. Cymbalta 60 mg. is only anti-dep. I take. WAs on 2 double and thriple dosed antii-dep. before. Was on 3200 mg. ofNeurotin and now take 100 Lyrica. Vicodin for pain . I'm not saying I have really bad days, but am doing better. Last couple weeks were the worst in my 12 years. Have blisters for the first time, big ones.Thank you for the picture idea, and of course journeling. I have full body, generalized plus trigimenal nerve on left side, plus fibromyalgia.

Do you have a support group in town? or someone to talk to in your area? You are welcome to PM anytime. Have you had any spreading? I haven't had surgery since my initial breast biopsy that caused left arm swelling, followed up with left frozen shoulder and 100 PT and massage therapy, followed up by right frozen shoulder and more PT. I have found massage therapy to be very helpful, plus other distractions like scented candles, music, petting my kitty, reading, writing cards and phone calls to others that are alone, elderly, chronic pain, etc. My Dr. is wonderful and see him once a month, pain management. I try to stretch dailey and meditate. Spritituality is important to me. My husband is very supportive and we have a daughter that is knowledgeable and supportive.
I used to dwell on all the things we used to do as a family, Our daughter and I traveled a lot too, and also our son-in-law. Haven't given up hope on that.

Please know we all care and are so happy to see you with us. 'not too long for me' Loretta Jewell

Hi Superduck95!

Hi Superduck95!

I guess I punched the wrong button too early. Anyway, welcome to NeuroTalk. You'll find so much comfort and encouragement on this forum. So many wonderful, encouraging friends and knowledgeable, caring, sympathetic and understanding friends. It's good the 3rd time around you got a diagnosis. It was my 3rd time around too, the first 2 'spells' were from surgery and the third was from water skiing on my left hand. Misdiagnosed and didn't get pt soon enough, so have a claw for a hand, but at least can cut my food, and put on clothes. I also found warm water therapy in a pool wonderful. We have a heated pool and I spend a lot of time in it, especially in the summer. swimming helps so much to keep from freezing up. I have full body. 32 is young. Hopefully you can get it under control. I believe the first two times I had so much pt and massage therapy was responsible for getting the use of my arms back and also touch therapy allowed me to get use of my limbs without being sensitive to touch. At the stage I'm at now, I have a lot of skin lesions, and now blisters. I'm checking into HBOT. My Dr. will have the first two units in my state 'out of hospital' His are hospital grade. Now, hoping my insurance will cover this treatment.

Percocet, I know you are in a lot of pain. The Cymbalta helped me, So did the Lyrica, but now am going down on mg. of Lyrica to 100................ Do you have blood pressure issues? Many do because RSD is a autotomic disorder, affecting involuntary organs I have both high and low blood pressure. High is the sympathetic nervous system and low is the parasympathetic nervous system.

Hope the best for you and don't give up. You'll hear from a lot of friends from here. May be a bit slow because of time of year, but it will pick up. Take care, Loretta Jewell

hi im carrie i was 16 when first got rsd from car accident 11 yrs later whole body organ involvement i used to go to the mass general chat light years ago i swear. i live in tennessee now have 2 great girls and a wonderful husband. the only thing that keeps me goin is those 3 ppl and the fentlyn (sp) pump i have had for the past 5 yrs. and finally having great docs. ive been thro so much since rsd its unreal just to look back at it all and to think that i thought 1yr of rsd would be horrible 11 yrs has been unreal. always think forward one day they will find something that will help (hopefully !!) and more long term thanks for listening to me ramble

-carrie

Hi Carrie,

Just wanted to say Hi! I'm happy for you in having a loving supportive husband and two girls. I am sorry you have rsd and especially getting it at such a young age. We had our one and only daughter at age 31. She is 29 now and a wonderful encouragement. She and my husband have met my Dr. and also did their own research on rsd. That really helped them to better understand. I'm hoping to try the HBOT when my Dr. gets them installed in his two new clinics. He is also doing more research. He is a Neuro. Psych. and Pharmacologist. One med that has really helped me is an anti-anxiety med, 2mg. 3x day, Lorazepam, keeps me calm and less pain. Hope you are having a comfortable day- Take care, Loretta Jewell

hey loretta
thanks so much. it was hard but found out quick who true friends were that is for sure. yes i am lucky to have such a great family . it would be aot harder if i didnt trust me .. the two docs that treat my rsd are a neuro and pain managment. they but are doing current rsd research and but very excellent docs i got luchy here in nashville when i moved . wouldnt be alive if it werent for them .. where are you at again ?

-carrie

Loretta~
thank you for responding so warmly to my intro. I have no clue really what I'm doing in here as far as all these different "inner chat" supports, and "friends" and so many other things to do as far as this whole profile page it looks like yet. So, you'll please have to excuse me if I appear scatter brained and short minded. I am. (smile)
I am happy to hear you are also blessed with a family of love and supportt. I just recently placed a post to a lady regarding discouragement today. If you want to check it out I think you can get to these things through viewing our profiles can't you? I'm not sure. Please let me know if that's even possible for future reference.
I forget what I am talking about easily, just to forewarn you ahead of time. And can tend to bunny trail at times, simply because I talk alot! Just tell me to be quiet (Heh-Heh-Heh).
To answer your question about all over body rsd... My "pain Management" doctor #6 who won't do any invasive procedures on me what so ever because he says I've had them all and it would be a waste of time and a shame to put me through all that pain again if they did'nt last (ie; rhizotomies, symp blocks, bier blocks, trigger pts, ice baths/hot steam baths contrast/which was totally stupid by the way).
He said if I would have come to him a long time ago, like back in 2002, instead of the other PMS's, he would have been able to help me alot more with his aggresive "9" block series to the symp chain. So, he just tells my husband and I that I will have this for a long time, and that It could be worse, and at least I'm walking and using it since I listened to their advice and exercised the crap out of it years ago. Ultimately, me getting more use of it back is credit due to God, and him giving me the stubborness, and "good" anger that I needed to remind that I did'nt want to lose my legs and their mine. He gave them to me, so I shall fight for them as hard as I can & want. Question is'nt so much can we, but do we want to fight each day. In this sick kind of unexplainable pain it is so easy to just throw in the towel. But, it seems for me personally, Since I started asking God to channel all that pain into motivation, and that if He did'nt do this for me I knew I would die. I told him, I will move, I will pick up my matt and walk like the man waiting at the healing pool in the Bible waiting to be healed! Funny, the whole time he layed there on his mat it says when Jesus asked him why don't you get into the pool? The lame man blames the other people around him that also are in need of healing but are in fact doing what ever they need to to get in there. The man just says they are always in my way therefore stopping me from getting in. Jesus "DO YOU WANT TO BE HEALED"? and the man says yes, then Jesus says, "THEN PICK UP YOUR MAT AND WALK"! All along the man had put his faith in hopes that the pool might have healing powers. When all along The One/Savior/Jesus standing right in front of him "HAD HIS HEALING FOR HIM THE WHOLE TIME"! How cool a story. Anyhow, that gave me so much hope to move it or lose it! So i did. Move it that is. Did and does it hurt? Do we even need to ask? What I have done in the last 5 years to these two legs let alone this body to keep it is none the less a miricle. And thats it...
Yes I still have symptoms, and some pretty bad ones, yet some seem to have hidden away a bit. but my limb is stone cold and has been for years now. Oh well. Ive still got it.
Oh, also, another helpful tip. I promote healthy foot care first and foremost to all of us! Since our tempretures escape from our head and feet the most, they are usually affected the most though we tend to neglect the both of them.
I also do my families feet when I'm able to. (pedi's) I have a dremel, all the fixin's for home use foot care and then some. But, you want to make sure you are soaking your feet in EPSOM SALT. As often as possible. It relieves tired muscles, bone aches, cleans, disinfects, promotes circulation and is very cost effective. Check it out on a web hit for: RSD Puzzles, vero beach florida.
These doctors are amazing and have helped my locals in some situations to boot!
Well later for now,
keep movin with a friend,
traci

Believe it or not this is an RSD long story told short
 

I have been diagnosed with RSD in the left leg (knee, down). Simple injury at work when I hyperextended my left knee while running some stairs. Doctors couldn't figure out what was causing the pain in the back of the knee as I continued to work in some pain for 2 1/2 months. Exploratory surgery! Two times, after the first one did nothing. Waking from the second surgery was life-altering to say the least. I had never felt anything like it.

Indescribable pain.(I am a chef and am used to cuts and burns that hurt alot) Pain has taken on a new meaning. I have gone through the crutches, canes, PT, Lumbar Symp. Blocks, Fentanyl patches, Lyrica, contrast baths,needles in my affected limb, etc. Did I say life-altering? By the way,
I am 32 years old with two young children, one a 5 year old boy begging to run with Daddy.

Enough of that. This is a worker's comp. claim, so I do what they tell me to do. And I have. I saw an "independent"?????????medical doctor. He, in turn, gave me and the insurance company(who he works for) 22 pages of lies about my situation. Is this legal????? I guess so! I did what he said, as required by the system. :( On the second visit to the same doc (??????)he wrote in a report that I am "FINE, cut his benefits off and send him back to work". "It will help him Psychologically."

So I am cut off. What now? Time will tell. This is out of my hands now. I am going to continue pressing on as best I can, and run with my son and daughter in spirit. I will cheer them on. I am hoping that they don't remember the early times of this disease of moping and anger and feeling sorry. This is now in God's hands. He will do just fine with it.

I may have stirred a few things up here. I'll start by saying that, I live in the state of Kentucky. I have aquired an attorney and we are in the middle of a tug-of-war. I did not mean to sound as though I was bad mouthing the insurance adjuster. Even through all the junk that I have been through, I still tell doctors and my attorney to tell the adjuster hello and that I appreciate the assistance he gave me while I was allowed to speak with him. (once
hiring an attorney, you are no longer legally allowed to contact them) He was more than willing to speak with me on my terms. I educate myself to the situations I am in and I adapt to those situations as they arise. My adjuster went so far as to tell me what he would do in my shoes, and where to find information supporting those opinions.

I was also told that I needed a pulse rhizotomy and what led me to discussing
this option. According to my PM doctor, the SNB injections are given
in a series of up to 10 blocks. I was getting relief from them
anywhere from 1-7+ days. The injections were done once a week for
three weeks, skip two weeks, then again once a week for three. At
the beginning of the fifth, I was in some pretty serious pain
(nothing like the results of the earlier ones). They told before
beginning the series that if they stopped or lessened in the pain
relief that the injections would stop. I know that these injections
and their expectations are strictly based on indidual status. This,
like alot that we are dealing with, is case by case basis.

Pulse Rhizotomy is very similar to these injections. The difference
as I understand it, is that once the needle is in place at the nerve
chain ganglion, rather than injection medication, a wire is inserted
through the needle and radio waves are aimed to the same ganglion.
This deadens the nerve chain, "putting it to sleep", in hopes that as
it come back to full function "wakes up" it will reset and function
properly. The PM doctor told me that her success rate with this
varied from approximately 5% of people who leave feeling the same to
worse than before, 15% had worse pain upon leaving which slowly
became quite a bit better over the course of a week (once reaching
the "better" it remained better), 80% felt relief instantly upon
receiving the rhizotomy. She said that the procedure would usually
last, in whatever state it affected the patient, for one year at
which time they would repeat the rhizotomy.

The reason I don't know what the procedure could do is........
Worker's Comp denied the procedure then cut me off. An 80% success
risk sounds great to me. After all, I begged them to just get me
back to work. I have worked my way up from a dishwasher(starting
position)in a fast food joint, to the Executive Chef at many
restaurants and a lead position in one of the longest running 5-star
restaurants in the country. From the age of 13, I am a self
proclaimed workaholic. I would say that over my 17 years in the
rest. business, I average 80-90 hours per week. I love it. I just
wish they would ask anyone I have ever worked with or for. It would
be great to storm back into a kitchen. I have almost 2 years of a
bed, crutches and a cane to make up for. One more thing, I HAD
NEVER, IN THOSE SEVENTEEN PLUS YEARS, MISSED EVEN ONE DAY OF WORK. I have work ethic and I just wish someone would realize it.

->I guess the major issue I have with this whole ordeal is that the
insurance company has sent me to said doctor, he is an "independent"
examiner. For this "doctor" to come back to me with a report,
literally 22 pages of out and out lies regarding my injury. He
twisted my words or flat out omitted my words only to use his
instead. He started in the very first line of his report by stating
that I had said that I injured the opposite leg than the one I
injured. I won't get into all that he said, but when my PT read it he
was nearly as angry as I was. All the work he had been doing to help
me keep my RSD symptoms in somewhat control, he felt it was a slap in
the face. Two doctors who were treating me at the time were as well.
They filled me in on the Ind. Med. Examiner way of life. If your
insurance company gets to them first, they say what the ins. co.
wants to here. If the attorneys get there first guess what the
findings are. Neither is better in my opinion. I am an honest and
hardworking man and nothing can change that in me, no matter what
they do.

With the internet at our disposal you can find some pretty
interesting things about whomever you wish. I found that the expert
medical man that they were sending me to was a retired hand
surgeon/doctor. He was not in the interest of finding out what was
wrong with my knee, nor was he experienced in pain treatment. I
would have at least expected an orthopedist or PM experienced doc.
At least the "IME" that my lawyer is sending me to is a retired
PManagement doc. He spoke with obvious knowledge of the pain
aspect, he wasn't much more clear than the first on what to do about
the initial mechanical issue with my knee. I am interested to see
what his report has to say, I should have it this week.

One last thing, when I am able to retrieve the court dockets on the
insurance company's IME, and see that he has been involved in
overruling practicing doctors opinions in court(it is all out there
to find with a little snooping), and see how many time he has been
utilized as a tool of the insurance, it is rather sickening to me.

How is this legal. Do they not recall the Hypocratic oath that they
took? Not only do I feel that it is illegal practice, but I feel
that it is immoral. For the insurance company, and attorney the
same, to support such practice is where I say my issue lies. If
there is anything I can do about that I am open to suggestions. I am
not hopeful for resolve in this part of the game I am being forced to
play.

My medical and medicine and compensation has been stopped. I don't know exactly what will happen. The injury took place in April of 07. The
surgeries were in july and august. I didn't contact an attorney
until January of 08. The IME was in July of 08, the first one. He
recommended that I seek aquatic therapy and PT. I did both. I also
joined a local gym to try to work on some strengthening. My quads
will not strengthen. I saw the IME again in Oct. 08 He then said
that I was fine. There is nothing wrong with my knee. There is no
RSD, despite the ama guidelines. He says that I show no symptoms. I
have six other doctors that have documented that i do have ALL the
symptoms, or at least have had in the past. Here recently, with the
cold, the ones that had slacked off are coming back with a vengance.
I have a positive 3 phase bone scan, x rays showing osteopenia, MRI's
(three) showing progressive atrophy, and on and on and on. I do not
understand how this is legal. I think that is my main gripe through
this whole ordeal. Is there anyone I could complain to? I guess
not. As far a the video taping me, I have no knowledge of them doing
so. But, if they would I will put on a tracking ankle bracelet to
let them know where I am at all times. If they think that my life
the way I live it, is that of an average 32 year old man (let alone a
workaholic, verifiable by anyone I have EVER worked with), I would
love for them to video tape it and take it to the judge when I get
there. I am very uneasy about going into court. Not for anything
that I have to hide or am exagerating, but rather for fear that the
judge is somehow involved in this crazy game like the IME's and the
lawyers. I have a real hard time trusting anyone involved in this,
after all it is affecting the future of my children. A future that I
was well on my way to providing them and now it is all just withering
away. I will do the best I can and leave the rest in the hands of the
man up above. This has been great talking with you today and
tonight. I can tell that there are some knowledgable and forthright
people on this group and I look forward to talking with you all.
Oh and I still go to the gym on my own for now. The contract is up
end of January. I have no compensation so it will end too.


I look forward to chatting with some of you on the page here. After just a few days I can tell that this is going to help precicely when I need it. Thank you all for putting up with my rant. It feels good to punch this out on a keyboard. It made me feel better to get some things off my chest that I try to keep bottled up around family. Thanks J.