Originally Posted by Debbie V (Post 400925)

hi,
Well, unfortunatly I fit the bill. I was originally diagnosed in November 1999 with RSD in my left foot. By around Feb 2000 it had moved up and encompassed my entire left leg, and from then till late 2001 it spread to include mmy right leg as well. So now have it in both my legs toes to hips. I think the easiest way for me is to leave the question your asking then my answer after it. so, here we go.

I am interested in general and specific knowledge of how you are coping now.
Well, day by day. having more bad ones than good, never know what kind of day will be. pain meds are both a life saver as well as a curse.

Which are the predominate features that dominate know.
The swelling, bruising, hypersensitivity to everything.

what type of pain.
Burning, numbness which I think is the worst.

How consistent.
Think the beter question is how often do u not have pain. I am in constant pain, if I can go a day with my pain level below a 7 I am thrilled!!!

What has changed in terms of your pain form previous years.
Think I have gotten so use to it, that it is at times easier to block it to a point. Definatly does require me to pace myself more, as on that one good day, if do too much, Ill be down for 4, rather than if say, ok, today is a good day, Im gonna try to do 2 loads of laundry and stop there. Then may be able to do a little something else the next day. Where, before, on a good day, I would be like yeahh Im gonna steam clean my carpets, clean my whole house and then be down the next week.

How active are you able to be, and if so what are the consequences if you go over that safe active time?
Fairly in active anymore. I use to do Rennisance faires and run a kitchen for a group of anywhere from oh, 6 to 26 people, spend 2 days prep cooking and then finish it so could eat that weekend, 3 meals a day. Now, can't do 2 faire weekends in a row, can't do kitchen anymore. Havent run a kitchen full time now in about 3 years, towards stopping it, It would take me oh, at least a week to recoup from a whole weekend usually more like 2 weeks.

How weak are your affected limbs?
on a scale from 1 to 10, 10 being not able to stay up, a good day is about a 6, a bad day, of course a9 or 10 which are those that stay inbed except to go to the bathroom.

Which therapy modalities have helped the most? which have you stuck with , physical therapy, psychotherapy, tens machine etc.
use meditation alot, more recently which really does make me feel great. Allows me to not take the sleeping meds all the time and even though may only sleep 4 hrs, feel like slept 10.

Meds, whats working- have your meds increased or decreased.
Oh, definatly increased. mainly because of tollerances building up and eventually having to change. Baclofen has been a life saver fr the spasms. had one so bad 3 months ago, that fell and actually the non spasming foot ended up breaking and dislocating both ankles, the tib in 3 spots and the fib in 2.

Ability to work?
Dr.s wanted me to stop after a major car accident in 2002 August, but as a single mom with a child in high school and nothing from there dad, had to work. pushed but had to accept in Oct. 03 was no longer possible. because of the pain, the pain meds side effects unable to work when would take enough to take the pain to a tollerable level, as well as just couldnt sit at a desk anymore, spend most of time laying in bed or on the couch with legs up.

And if not is it due to meds as well as pain from RSD?
it's was a combination of both as well as the more I would push myself, the worst seem to get.

Hope these help, if need me to elaborate more on something let me know.

Blessed Be
Deb

RSD is not who we are, but only a part of who we are, what we are and have to be are fighters and survivors
Please add as many elements as you can think of that I have not mentioned. I am going to post on braintalk too. I will post the results together. I hoping to see some type of pattern. Thank you so much in advance if you feel like sharing some of your experiences. sincerely, cz

Originally Posted by allentgamer (Post 404449)

What a road we travel. Rsd has been a REAL trip!

I got the RSD way back in 2000, and worked about one year more. It wasnt that I wanted to stop working, I was forced out because of low job performance. It was then that it was dawning on me that life as I knew it to be was radically different from what it was before RSD.

Took them almost 4 years to quit saying it was in my head, and then bomb me with the RSD information. I really wanted to run from that revelation, but I couldnt run anymore :D

It all started in my right leg, and has now spread into my right arm and shoulder. The hips have really started hurtin the last few months, even to the point where I cant lay on my sides. Used to have some serious pain in the ankle that now is the entire leg.

I think the scariest thing is when they told me that it is effecting the central nervous system. Because of this my blood pressure is sky high, and even with 3 different BP meds it still runs high.

Pain is still the main factor in every day. At one time I was on lots of different pain meds that worked to bring the pain down some. But left me in fog all the time. Topamax worked for a while too until my hair started falling out, and it became increasingly hard to pee.

So today 3 BP meds, lipitor, and norco for pain is all I take everyday. Only one or two norco works to bring the pain to a tolerable level per day. At least I have some of my brain activity back LOL.

I have to use a cane most of the time, and for the loong walks I use a power chair. It seems to me the weakness is always getting worse not better. Although the weakness is getting worse, at least it is gradually happening.

One thing I would recommend is that anyone that has RSD get their bone density checked. When they checked mine the first time it was low normal. This was about 4 years into the RSD. They checked it again a year later and they said now it is osteopenia. This has also been getting gradually worse as time goes by. The doctor says it goes hand in hand with the RSD.

Sorry I didnt stick to the format, didnt have time to answer that way. Hope everyone is doin well as can be expected, and has a great holiday season!

Originally Posted by CZZ74 (Post 400829)

Hi, I hope this finds everyone well this Sunday morning. It is beautiful in Orlando. Cold, by our standards, in the 50"s a real treat and a nice break from the afternoon thunderstorms that cause us all so much trouble.

My interest in starting this thread is that people are always asking me "well what happens Next". Whats the long term prognosis? We are the answers to those questions. Just as when some one asks me what are the long term effects of so much ketamine. We are the test subjects that will be reporting that.
I'm hoping to find out if there are any similarities, common ground, especially in the area of the pain . How many of the original components are still with you, the sweating, the outward signs of red molting or blue, thin limbs or swollen limbs. And all of the above questions following use of your affected area.

Hi CZ, Thank you for asking the questions, the answers we will all learn from and be able to learn more, especially those with less time, with still lots of questions.
Mine started in 1996 with left breast surgery and under arm for two benign tumors. Left arm swelled double size the next day. Dr. left for vacation, so his office withdrew the green fluid 2-or 3 days. When he came back my shoulder was frozen bad. Sent me to Rehab Dr. who oversaw physical therapy- about 100 treatments to get range of motion. I refused surgery to break it about half way thru. I paid for massage therapy just be going into pt. That help soften and stretch arm. Extremely painful, being strapped down and took pain med before treatment. No diagnosis. We moved across country to Arizona and before we left pt. said it might move over to the other shoulder and IT DID. More therapy No diagnosis. I was basically in remission inbetween problems. Then in Sept 2000 I was water skiing and felt a deep pull in nerve of left hand, immediate swelling and pain and discolored.


I am hoping that those of us with RSD for 5 years or more would feel like helping me complete a small study of sorts. In the end, i think it might be helpful for all of us, and helpful to those that are not here yet.

I am interested in general and specific knowledge of how you are coping now. Which are the predominate features that dominate know. what type of pain. How consistent. What has changed in terms of your pain form previous years.
How active are you able to be, and if so what are the consequences if you go over that safe active time?
How weak are your affected limbs?
Which therapy modalities have helped the most? which have you stuck with , physical therapy, psychotherapy, tens machine etc.
Meds, whats working- have your meds increased or decreased.
Ability to work?

And if not is it due to meds as well as pain from RSD?

Please add as many elements as you can think of that I have not mentioned. I am going to post on braintalk too. I will post the results together. I hoping to see some type of pattern. Thank you so much in advance if you feel like sharing some of your experiences. sincerely, cz

Originally Posted by Loretta jewell (Post 407311)

Hi CZ,
Thank you for taking the time to inquire of our different paths in the life of RSD. My name is Loretta and I got RSD the day following left breast surgery and arm pit removal of 2 benign tumors in 1996. The next day my arm was doubled in size. My Dr. was on vacation , so his office removed the green liquid for 2-3 days When he came back, my left shoulder was completely frozen. Sent to a Rehab. Dr. that oversaw physical therapy. About 100 treatments got most all range of motion back. I paid for an hour massage therapy just before pt so as to warm and stretch my arm. Very painful. I had shooting pains Thur by back, shoulders, stabbing pains.About half way Thur, they sent me to ortho. surgeon and he wanted to break the shoulder, I said no thank you and stayed the slow course. So glad no surgery, didn't even know then it was rsd. Before we moved to Arizona, pt told me it might move to other shoulder. IT did. more therapy. After each shoulder problem, I really went into remission No pain meds. Just took them during the torture pt.
Sept 2000 was water skiing and felt a pull in left hand. painful swollen and went right away to Dr. He said it was Rheumatoid Arthritis, even though the tests said NO. Put me on some meds, I felt something was really wrong and not RA so I flew to a Sports Injury Group in Eugene Oregon and Hand Dr recognized RSD in 1 minute, followed up by tests at the hospital.
Starred physical therapy the next day and then came back to AZ and found a good hand Dr. and pt. Didn't have blocks, it had been over 4 years undiagnosed or rather misdiagnosed., really both.
My hand was blue, red, mottled and extremely sensitive to touch, sweaty, and shiny, and red hot in touch and couldn't use my fingers. frozen straight. Torture therapy and hand is like a claw, but desensitized and can cut my own food now etc. Years ago, this used to be called hand-shoulder syndrome.
A few months later, my right hand was turning color and atrophy, sweaty and shiny. From the beginning, I had sweat problems, and sort of like panic attacks emotionally, but didn't understand that, as never happened before.
Then moved to both feet and legs, spine, lower back, neck, bad headaches, trigeminal nerve disorder, fibromyalgia, Both arms are now deforming elbows are bowing out. At one time toes started curling and didn't touch floor, Dr. gave me pool exercises and I didn't them daily and now can touch the floor. I read the water needs to be 86 degrees. Cold water is not good for our bodies.
Now I have the burning limbs and also ice cold, can't warm up limbs.
I see a psychiatrist, neurologist, pharmacologist all in one, and he manages my pain, He is conservative, but sensitive, has experience. Yes, counseling has really helped me. I go once a month for an hour. I also had 2 years when my parents died.
Meds:I take Vicodin 4/500 2 pills 3x day, Lorazepam 2 mg. 3 times a day. 2 blood pressure meds Diovan 160 1x, Toprol xl 50 mg, (used to take 100)
Was on Neurotin 3200 mg. to get the jerks, electric jolts, spasms, etc to stop. now changed to Lyrica 100 mg. 3x, but having issue with lungs, so probably will go off next week when I see my Dr. Ambie Cr. 25 mg for sleep
Cymbalta 60 mg for anti-depressant, used to take paxil cr. and wellbutrin xl double dosed. I hated the nuerotin,tired all the time, memory bad, like the cymbalta, had no emotion on the other two meds. At least I can cry now when I need too, big difference and I think healthier.
I have skin lesions, red, itchy, and turns to brownish moles- a nightmare.
About 3 years ago, I woke up and stumbled into the door, passed out. My husband was in his home office. I woke up over an hour later- got his attention and he called 911. The medic, couldn't get a pulse, and told my husband I was dead. I was going in and out of conciseness. Blood pressure was 60/40 not good. Spent 4 days in ice !6K in tests alone, My blood pressure goes up and down at times so I take it nearly every day. Last night it was 160/109 pulse 91 after being sick with stomach flu and getting a really bad headache. I think it was higher than that, because I didn't think to take it until after an hour of my head almost exploding.
Pain- always, up and down, grateful for the vicodin and hope never to have to go higher. Lorazepam helps a lot to keep calm. I use music, cd's scented candles, reading, meditating. Looking at photo albums of lots of happy trips and times. We have one daughter and we did so much together as a family. Water ski, Snow Ski, Tennis fanatics, besides playing almost every day, we went to 12 days of us open both day and night matches. Swimming, 10K and health club work outs. Oh and horseback riding weekly.
After going on Cymbalta, somehow I passed that deep dark depression I had been in for so so so long. I concentrate on gratefulness instead of what I can't do anymore. I like to talk on phone to close friends, and write cards.
I love this forum, and makes me accept where I am and have compassion for others. I'm 60 now, but would still be playing tennis and water skiing if I could
Mobility: I am in bed most days. Walk around the house. Don't drive very much-have to wait 4 hours after meds, Can't walk a lot, feet and lower back get tired and hurt. Don't need a cane. Ankles hurt, swollen. Hurts to type this long, I have a microwave warmed long bean bag head with velcro straps to keep it in place. Also works good in spine and lower back and warming up, when I'm in the cold bone chilled state.
I talk to a good friends with full body rsd. Image she has had it longer and has 5 children young children. Tough
Support: My husband is very supportive, has gone to Dr. with me and well as our daughter. They both have done research on RSD. She knows too much, because she is a court reporter and has dealt with rsd in court.
She is married 8 years and we love her husband. They are both helpful, helping with house cleaning, yard, and picking up dry cleaning, etc. My husband gets my meds and grocery shops.
We own a business, but i can't work any more in it. I really miss that, but just can't do it. Financially, this has hurt us pretty good.
Well CZ, just ask if you would like more info. Hope this helps others and isn't too discouraging. I wish I knew then what I know now-could have planned better for what's coming. Remissions is a precious thing. Earlier treatment the better. Physical therapy is very hard and tiring, but I am very glad I can use both arms and most of my left hand, the desensitizing was so important. I had a tens unit and it helped while my hand was so bad, but don't use it anymore.
Sleep: have problems sleeping. Many nights can't get to sleep till 3 or 4 am.:mad:
CZ thanks again, take care Loretta Jewell:)

Originally Posted by sherimac (Post 406470)

I was originally diagnosed in 1990 or 1991, after a knee injury and DVT from immobilizer. Initially effected my right leg and knee, I spent 4 yrs in pt, learned to walk again. The pain was incredible, it was burning, electric cuurent and sometimes felt like I was being jabbed with a hot poker. It swelled, turned pretty colors and I couldn't stand anything touching it. I went through many doctors trying to get relief, did Phentolamine blocks but didn't get enough relief according to pain doc to continue, tried lots of meds, Ultram, Neurontin, Klonipin, Nortriptylene, Trazadone, and every anti-inflammatory they could prescribe, but no one wanted to prescribe any real pain meds. Eventually I stopped everything and it went into remission for about 8 years, then last summer it came roaring back in my leg after another DVT, this time it has spread to hips and spine and lucky me I fell in August and fractured my scaphoid in wrist and am having problems with the rsd spreading there, it is currently burning some, though not as bad or often as my leg, it is mostly the temperature change and color change, my hand has been cold and I can't seem to get it and keep it warm. My skin is very dry all over my body, and is shiny on my leg, I too have experienced some hair loss on my leg. I am currently in OT for my hand and thankfully my PCP is willing to prescribe pain meds for me. I have been taking Skelaxin 800mg and Norco 7.5/325 for over a year, may need to increase the Norco. I have been trying to see a Neuro, but everytime they hear rsd they won't see me. I am working full time in Social Services, thankfully I work for a very flexible agency and it allows me to come and go, set my own hours and work from home when I need to, I just started back in the field last month, prior to that I had worked for 1 year for SSA as Medical Disability Examiner, what a nightmare, way too stressful which aggravated the rsd. I didn't have any flexibility there it was awful, now I can't believe I worked like that. I do the best I can, I use my cane when I need to and rest a lot. There is so much I can't do anymore, as standing and walking are so difficult. I'd like to look into SCS if I could find someone in the Orlando area willing to talk to me about it. Anyway I think I have tried just about everything, with little or no real success, even tried acupuncture and Tens unit which really set me off. Somehow I keep going despite the fact my doctor told me last year to go back on SSD, I was on it for 7 years prior to the remission, it took me 3 years to get and I just don't want to deal with it and wait that long again, so I choose to work, somehow I am doing it because I refuse to let rsd get the better of me.

Originally Posted by Imahotep (Post 406592)

I got it in mid-'98 but at first it was nothing of note. I was strong as a bull and as active as a small herd and RSD was just an annoying pain in my hand. But it kept getting just a little worse and started causing fits for my digestion since this pain was so stressfull for me. After a time I started realizing the pain was associated with usage. If I took it easy with the hand then the pain was better and digestion OK. It was all downhill from there.
Over time everything started falling apart and my life just started imploding as I had to give up one thing after another. I still worked for a long time but used one hand almost exclusively. Eventually the symptoms and pain expanded and got worse and working became most problematic. I wasn't diagnosed until mid-'03 however. The doctor told me that the prognosis wasn't as bad as I might think and that most patients eventually get on the right combination of drugs that they can function.

My symptoms have been far too numerous to even attempt to list and there are some new ones that are in themselves disabling but I'm still active for up to a few hours per day. I still have some strenght on my right side and can be very productive when I work. I have nearly as many bad days as good ones and I'm finally learning what will set me off so don't get the most severe symptoms and pain as often as I used to. Memory was a problem early on but was probably caused by medication. It seems to be returning a little but might not be caused by the RSD or the meds this time.

I try to go out every morning but only make it four or five days a week. On good days I'll swim and try to maintain a schedule with this as much as possible.

I do a lot of reading and surfing now and find the pyramids extremely fascinating. This interest is expanding a little to include more early history and late prehistory. I take care of my mom's house and all my own chores. There's not much social life left but there's still family.

The biggest problem recently tends to be stress and, in a way, it long has been. Depakote keeps me on an even keel and helps with the pain a little. Neurontin helps with the pain a lot. Tizanidine allows me to sleep because without it fine muscle spasms keep me awake. Seroquel helps me to sleep. Norvasc keeps the blood pressure down even when pain levels are high. Keeping the blood pressure down prevents headaches and other problems. I have a few meds I take in the event of emergency. Some of my specific symptoms are overwhelming. I also sometimes need additional help getting to sleep and get side effects from too much seroquel.

Pain killers never really worked for me. Methadone helped me not care about the pain but it didn't really ease it. Even a large quantity of morphine just got me to quit screaming though the pain was little different. I got this when I wakened from an unrelated operation. My hand hurt so badly that I woke up to my own groans and it got worse from there.

The worst thing about this is the feeling of powerlessness and the lack of control over anything. I was once almost fearless and micromanaged my world and now I'm afraid of the dark and can hardly manage what little is left of it. I suppose the best thing is that it has slowed me down so I can appreciate parts that were invisible to me in the past. My greatest hope is that someday I can get off the neurontin since it affects my mind quite a bit.

Originally Posted by CZZ74 (Post 407345)

Sherimac,
This is so helpful, you are one of the first people that i have heard fro that has been able to continue working.It seems as though you have been able to make you job work for you best you can the standing is very diffucult for me, anything over 20 minutes causing a severe spinal flare in the thoraic area. Thank you so much for replying. Sincerelly, Cz

Originally Posted by Cake (Post 409305)

My RSD started in November 2000. So I'm just on the 8 year mark now for my right arm and hand, and I'm nearly at the 3 year mark for my leg and foot.

How many of the original components are still with you, the sweating, the outward signs of red molting or blue, thin limbs or swollen limbs. And all of the above questions following use of your affected area.
My arm doesn't go red when it's touched now, I don't have big issues with allodynia since my 1st ketamine treatment got rid of that in 2004. Still have swelling and purply/mottled hand and foot, but not the whole limb so much. After use? they're worse.


Which are the predominate features that dominate now. Burning pain, swelling, purply colour change, bone pain, stiffness, weakness, sharp stinging pain.

What has changed in terms of your pain form previous years. I'm worse now in terms of mobility, movement, dependance, fatigue, pain levels, coping ability, psychologically, (so EVERY ASPECT!) than I have been in the whole 8 years, except I have more use of my hand than I had before. Also insomnia is a big issue now, I average 2-3 hours sleep a night.

How active are you able to be, and if so what are the consequences if you go over that safe active time?
I can't be very active at all. I worked out my base and peak times for doing things, and for instance the amount of time I can stand with weight both even on my legs is just 20 seconds. At my lowest pain level, I can walk around the house with a mild limp. At my worst, I can't put my foot on the ground at all, let alone stand on it. I spend most of my time almost at my peak level, with maybe a few hours in 3 days total where I can walk with just a mild limp. I have fairly good use of my hand though, but thats due to a lot of hard work for a lot of years.

How weak are your affected limbs?
See above for my leg. I can hold a 2ltr bottle of milk with my right hand for about 10 seconds before it starts to shake and I have to let go, but at least I can hold it!

Which therapy modalities have helped the most? Definitely physio.I've gone from having no use of my hand, and a totally frozen shoulder, to having good use of my hand (mostly), being able to write with my right hand again. My shoulder is starting to screw up again now, but its been fine for a few years. I also still see a pain psych, which I think is invaluable.

Meds, whats working- have your meds increased or decreased.
Meds have increased. Almost run out of available medications to try, as I've tried everything. At the moment, I'm on 40mg oxycontin a day, 900mg neurontin, 75mg endep and 50mg baclofen, plus vitamins etc. I've had other times where I've been on this much, and other times where just the endep and baclofen have been enough. I know these all help right now as I just had a week without the oxy and it was a nightmare, but I'm still not quite there. I'm still in a lot of pain, a lot of the day.

Ability to work?
Me work?! My husband can't even work! Well, he does 2 days a week because we need the money and he needs to get out of the house, but he sets things up for me so I don't have to do much on those days, and he catches up with it all when he comes home. Right now, I need him home all the time to look after me and Hannah. It's hard doing everything when you're on crutches 24/7- you can't even carry a drink into another room. I have to put things on the high chair tray and push it from room to room! lol I'm hoping that one day I'll be able to work again. That's why I'm now doing a Business Administation course from home, and last year completed a Human Resources Management course. Hopefully one day I can put all this learning to use- providing they hurry up and cure us! ;)

Hope that helps!
x Kate

Originally Posted by vanityfaire (Post 417306)

I am also over the five year mark.
My RSD started when I broke through a board on my deck at home and was caught between the 2x4's. My husband had to crow bar me out of the situation. The initial days following the accident were uneventful. I went to the ER and had some woodchips cleaned out of my right leg. This is also the same leg that I had ruptured and repaired the Achilles tendon. Wondering if RSD was laying there ready to pounce. Anyway I was in PT for the achilles at the time and after my deck accident my leg broke out in a rash and was red and swelling with extreme sensitivity. I was let go from PT at that time. I continued to have problems with the leg swelling, redness and most of all the pain was huge. It was like a porcupine, needles poking me in my leg and the red hot heat.
I have episodes now where my leg is ice cold or it gets like its been sunburned with redness and actually skin changes to a burnt look, wrinkled like after a sunburn. The pain is high on most days. I have times like today where I just crash and burn. Usually the pain makes me extremely cold all over. I have to go to bed and cover up as much as I can without touching my RSD leg.

I am working as a Special Ed. Teacher only getting this job this year after completing my Master's degree in Special ed. I have a job that has me doing short assignments that are 2 hours in length so my day is flexible in that sense. I have to drive over 50 miles to get to work and 50 miles back home. I think this is effecting my pain level a lot. The vibration from the road is a killer for me. I get home and have to go to bed or fall asleep in the chair. I take pain meds throughout the day as directed but also as I need to get through my task lists.

Walking is difficult especially in the morning. It takes me several hours to be able to get through the pain and to make it to the car. I get up early to just be on the computer while I take the meds to get me moving for the day.

Mentally I think right now I am just scared. I don't know how long I can last with working. I would choose to be at home if I could. Its very difficult to do what I have to during the day. I am having to really ask for accomodations at my new job. I did let them know at the interview that I had some health issues. My house is horrid. I let that go because I can't do it all. If I have to work than I just have to let the house part go. I have a hubby and teen son that help out in that department but not like a how I would do it if I could get it all done in the day.

I take 3x 600mg Nerontin, and 4x7.5/750mg. Vicodan daily for pain relief. This seems to work for me now. I do have break through pain daily and just try to do other things to make it better. Sometimes I have to double the dosage and try to work it out through the day. Hoping I don't run short of the meds at the end of the month. I have had ganglian sympathetic nerve blocks on three occasions. They really don't work much. I do notice that the swelling subsides however. The pain is still there. One time they shot me right in the joint of the leg and that was better than in the lower back. The next choice for me is the spinal tens unit. I am waiting until I absolutly have no recourse but to go in that direction as there is nothing really saying it works.

I am now in a PT program but had to stop due to my leg flaring up. It became red, swollen and broke out in watery blisters. The blisters are large and when they became so large they break and than its water running down my leg. I am just coming out of that and will resume the PT. I do see a chriopracter for lower back pain as well.

I suspect that I will be on disability in the future. This is just a realistic view. I know that I need to stay positive and I do. I just work each day as a new one and take it from there to make it through. I have some memory issues that effect me at work. I think it really cost me my last job of 17 years but I didnt' know that I was having a problem. Now I see a pattern in that so I write things down and keep everything so as to refer to it. that is no doubt the nerontin. I need to be on that med so I just have to deal with it.

Most days are between 5 and 6. The problems I have are night sweating, muscle spasms ( charlie horse type that last for 45 min), burning and temp. changes on the right leg, swelling, sensitivity to anything, hard to sleep in the bed due to touching of the blankets etc, insomnia from pain, deep pain to the bone, stabbing shooting pains.

Hope this helps your survey.

Originally Posted by Hola (Post 417371)

I've had RSD for about 7 years now. It started after an ulnar nerve transplant and relocation of the median nerve with a fatty pad graft. I have constant pain to the bone. I no longer have lost my finger nails though and the hair stopped growing. But, the color in that arm is always abnormal and I can't control the pain. Even with nerve blocks in my neck and pills. The muscle is atrophying and the bone isn't as large as it used to be. I don't recommend any nerve transplants to anyone, ever. On top of that I have Multiple Sclerosis and congenital hypothyroidism. I'm just in pain 24/7.

Originally Posted by CZZ74 (Post 417599)

VF, Wow, so well written, thank you so much. I really do get exactly where you are. I can not belivie you are making that drive. The pain must be excurciated by the time you are home.I ve been in bed since Thanksgiivng after driving(riding) I dont drive anymore, wrapped in heat- tyring to end a massive flare. I cant imagine 100 miles a day.Your very realistic too, thank you for sharing this it will be so helpful to so many. Just a thought, have you read the Intractable Pain handbook? It is us, I have found it to be a very valuable tool. Also Baclofen has really helped me with spasms and the an30-45 minute chalrlie horses.Ttthank you again so muchh.CZ

Originally Posted by JOAN_M (Post 418906)

Thought i'd send a quick reply. i have had rsd 12 years and counting. mine was post op hip replacement gone wrong. i am on neurontin 400 mg tid and two meds for blood pressure which is still a bit high. tranxene for sleep and leg cramps. i was an ICU nurse and never worked after the surgery. i am never really comfortable and it has spread to the other foot and my hands have either rsd or reynauds, but as my doctor says it makes no difference since ther is no cure for anything. i have horrible and long hot flashes and my head will be dripping sweat and my legs and hands freezing ... go figure. it is depressing and i work hard to stay busy but my mind says go and my body says no ... i also have a highly degenerated lumbar spine which causes great pain and of course less mobility.
i also just started a thread about impending doom because i often feel i am going to die, not in a psychological sense, but in a my heart is giving out sense ... if that make any sense at all.
so that is my story.

Originally Posted by frogga (Post 420940)

Hi all,

I know I haven't been around in months - an awful lot has been happening - but I won't put that here. I just noticed this question and thought I'd have a little say... I got RSD in January 2002 when I was 16 in my right wrist. Within 4 months it had become full body and I am also affected internally.

Rosie - I can't tell you how good it is to see you on here - I have missed you so much! I hope you are doing as well as can be expected and please know that you are in my thoughts and if you ever need anything, I am here for you. I hope to see more of you around here soon when you feel more up to it and have more time.

When I think about what has changed...

Pain: The pain feels less "sharp" than it was - as in I can cope better with it day - to - day (someone can touch my leg and I won't scream.. I'll just feel like it).. but it seems to impact my life so much more now, it's so deep inside my body that nothing I do or any meds I take can stop the pain.. I'm so used to it now that sometimes I don't even realise I'm in pain because, well, my pain is never below a 9 and so it just becomes.. life. In the last 2 years I've started to pass out from pain and have severe dystonic storms which are agony and make me pass out. Tonight I had a really severe fit and was then unconscious for another hour. I guess a positive is I am no longer scared of pain and have learned to manage it - I use my mind to control alot of the pain (by shoving it into the background until a time when I can deal with it) which has given me a little bit more freedom from it (like, if someone bumps me when I'm out in the street then I can get back to the car before crying instead of making a huge scene).

I totally understand what you mean about the pain seeming less because we have had it such a long time! When I spoke to my PM Doctor, he said that it is because our bodies build a "tolerance" to the pain and can therefore accept it more as it is impossible to be screaming in pain 24/7. I still get comments off many people though as to how I can be in this much pain when I may not look like it all the time. I feel so sorry that you have to go through all of this.

Mobility/ Strength: I have generalised dystonia and therefore I have severe dystonia which dislocates my joints. This came on after the RSD although drs aren't sure whether RSD caused the Dystonia or whether I'd have got Dystonia anyway.. I can't move my legs and have almost no use of my arms or hands. My elbows, hips, knees, ankle, shoulders, wrists and neck are all contracted. I haven't stood or walked in 6 years.

I'm so sorry that you have to deal with all this :hug:. I have Dystonia in my left leg and right arm and that is SO frustrating, I can't imagine having it full body - you're an inspiration and I mean that.

Independence: I am totally reliant on boyfriend/ family/ carers. I have to be fed, hoisted, dressed, taken to the toilet etc. I can sometimes control my electric wheelchair otherwise my carer/ boyfriend/ friends etc do. It is a nightmare. Though it is the dystonia that has caused much of this reliance. It has made me have to confront my hypersensitivity and make me find a way of dealing with the pain from it. I have found that the hypersensitivity, though it is still AGONY, is less.. as in, "someone's going to touch me --> that's going to burn --> my arm feels like it is burning (Acceptance)" instead of "someone's going to touch me --> NO! if they do that they'll set my arm on fire --> (screams and crying). If anyone else can understand that?

I totally understand also what you mean about the "acceptance" stage. I don't think we will ever be able to accept pain but when I look back to where I am now to where I was a few months ago - I have come a long way. I still have 24/7 pain that never goes below an 8 but my tolerance has improved a lot. I used to SCREAM in pain when I went to PT but now, I just make small noises. Sometimes I cry but it's not as bad as it was. That doesn't mean i'm not in pain, because I am - I have just learnt to try and accept it in order to do my PT and everything.

My PM Doctor used a good way of describing pain to my mum. He said "Imagine have hit your thumb with an hammer or stubbed your toe, what do you do?", my mum said "Well, i'll probably scream and cry", my doctor then said to my mum "Right, well if you had that pain constantly, what would you do?", my mum said "Well, i'll probably get used to it and it wont seem quite as bad", my doctor then said "Exactly, Alison has been in pain for that long that her body has sort of built up a tolerance to it as it is physically impossible to spend every minute of every day, screaming in pain". It really made sense to my mum and I think it helped her quite a lot.

Working etc: I am a full time student and am at uni. It Is INCREDIBLY tough. It took me 3 years to get back into education because of learning to deal with fatigue and pain etc. Studying is really difficult due to problems with concentration, pain etc. However, I am on course for a high 2:1 or a first. I'm studying Psychology and am in my third year. It is clear, however, that I will never be able to work full time and will probaly have to work from home.

I really don't know how you are able to go to Uni full time. My RSD isn't as bad as yours and I am only able to go to school 4 hours a day every 3 days (12 hours a week) and that is staying in one place. You're an inspiration to me with how you manage to go to school. It's great that you're studying Psychology - that is something that I would like to do when i'm older - i'd love to specialise in the psychology of pain or be a Physiotherapist (PT).

Other symptoms: I have far less swelling and less dramatic colour changes but they are still obvious. I am much weaker and can't grip things anymore. I get very dramatic spasms. I get lots more internal symptoms now, high pulse, nausea, swallowing problems, postural hypotension, recurrent UTI's, stomach pain, chest pain etc. I also get much more dizziness and confusion and "fogs" as well as visual difficulties. I also struggle with my speech with getting words out right when the fatigue/ pain is bad. I find the fatigue has worsened over the years.

Treatments: The drs believe that there is nothing that can help me. Being english I can't gain access to the ketamine coma (though I'm trying!) instead the last option I have is the DBS - deep brain stimulation. I have decided I am going to have it but not until I have finished my degree. They are hoping it will reduce the RSD and the Dystonia by putting electrodes into my brain. mmm. I have been on over 100 different tablets/ infusions/ blocks etc. I currently take ketamine, dihydrocodeine, tramadol, ibuprofen, paracetemol, diazipam, baclofen, trihexyphenidryl and nortriptylene (and domperidone etc). These make some difference but I am never any where near pain free.

I'm sorry that the doctors don't believe they can do anything to help you :hug:. I really hope that, should you decide to have the DBS, that it wont greatly inprove your spasms and get rid of some of your pain. It sounds really scary to me but I know you have tried everything else so it's your last option. I'm keeping you in my thoughts and please keep us updated when you can.

Yeh.. so at nearly 7 years of RSD I'm effectually a quadraplegic, I'm dependent for everything and I'm constantly in pain (burning, stabbing, exploding, cutting, lancing etc etc) but I am lucky to have an awesome boyfriend, friends and family and that I have the opportunity to study.

Lots of love

Rosie xxxxxxx