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.

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

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.

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

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