Our Stories & Introductions
 

Feel free to post your story, your RSD history, or an introduction to the forum members.


Hello & Welcome -

If you haven't posted in the main area of the RSD/CRPS forum, please do so, as sometimes new members get missed if they only post here.

You can copy your post from here, or make a new thread so the members can say hello.
Here is the New Thread link-
http://neurotalk.psychcentral.com/ne...newthread&f=21

Main area for the RSD/CRPS threads & posts and ongoing discussions -
http://neurotalk.psychcentral.com/forum21.html
__________________

New to your RSD community!
 

Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.

My story and introduction
 

Hey;

Most of this is copied from earlier on - but as it took me days to write I don't want to have to retype it!

Basically (if you can't be bothered to read this as it is very long and boring). I got RSD when I was 16 after injuring my right wrist and I am 21. In that time it has spread full body and I have developed secondary dystonia which is also body wide. I have just started at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 5 cats and 2 dogs at home and unfortunatly none at uni. I used to be very musical but now prefer hanging out with my friends or reading.

Take care and pain free hugs!

Rosie xxxxxxxxxxxxxx (a.k.a Frogga)

I have apparently had HMS for most of my life but wasn't really affected by it -my joints hurt if I did too much and I have pretty bad neck pain from the age of about 8. However, I still did sports, played for my county in hockey, was a grade 7 piano player and also played the double bass, accordion, organ etc. I was predicted 12 A* at GCSE (highest grades you can get) and was on an academic scholarship to one of the best private boarding schools in the UK.
When I was 16, in January 2002, I was packing to go back to school when I slipped going up the stairs carrying a pile of ironing. One of my cats, Fred, was walking down the stairs and ran between my feet and I went flying, hit the top of the stairs and in a desperate bid to not drop the ironing I threw my right hand out. I landed on my right wrist and fell down the stairs.
Everything went black.
When I came too my arm hurt so much I thought it was going to kill me. It had swelled to three times its size and had gone black and purple and ice cold. I couldn't move my fingers, wrist or elbow and it just hurt SO much. When mum got back from visitng my grandma she too me to A and E (ER) and they thought I had broken my arm. The X rays showed nothing, so the drs put me on some pain killers (dihydocodeine - similar to percocet I think) and sent me home with collar and cuff and told me to rest it. I went back to school (crying in the car - the vibration hurt so much) and tried to get on with life. The alloydinia was so bad that I couldn't keep any clothes touching my arm, nor bed sheets, blankets, water or anything, wind made me cry, everything hurt so much I thought it was going to kill me. Two weeks later I was still taking the tablets and getting no relief, no sleep and just generally going insane with pain. I went to back to A and E (ER) at my local cottage hospital close to school (Basically meaning they can take X rays and thats it) and they told me I needed an emergency appt with my PCP in case it was a blood clot. Anyway - saw the GP (PCP) who recognised it as RSD. He increased my pain killers, referred me to pain management, orthopaedics, rheumatology and physiotherapy and told me that I had to move and touch my arm to get better. So started a long process of treatment. I saw the rheumatologist 2 weeks later who then said that it was the worst case of RSD he had ever seen and if I couldn't get my arm moving then it would be amputated. I got admitted to hospital and started inpatient physio, hydro etc.
Two weeks into treatment the RSD spread into my right leg. It had been hurting and I woke up to discover that my leg had gone black, ice cold and just generally horrible. I couldn't weight bear on it so I was given a crutch for my good arm and hopped in conjunction with the crutch. I was working really hard on physio and had got some movement in my fingers but the swelling still wasn't going down. I had turned into a drugged zombie as the nurses tried to keep my pain levels low enough to move but the only thing I could think was "this pain is going to kill me" and at times even breathing burnt so much I didn't know how I could live through another minute.
I got discharged from hospital, still hopping with the crutch (they had tried to suggest a wheelchair but I told them I wasn't going to use one) , still unable to do anything with my right arm. (this was March 02). I was then spending a fortnight in hospital, a week at school and a week at home and then back to hospital. By now I had had to move into my house mistresses flat because I couldn't do stairs and my friends had to help me dress, wash etc. I was doing physio everyday, seeing the physios 3x a week, the OT's 3x a week and just trying to get some function back in my arm and leg.
This continued till April, when a "friend" broke my left wrist by dropping something on it (by accient admitedly - but im still cross about it). The break was lightly plastered because of the RSD and I had to hop everywhere on my left leg because I couldn't use a crutch until I asked the physio for a gutter crutch. Two weeks later the cast had to be cut off my left arm because the RSD had moved into it - my left arm had swelled so much the circulation was cut off to my fingers and I still have the scars from the cast. I was readmitted to hospital again. Sat my GCSE's in hospital and continued with the physio. So, it was May, and I now couldn't walk, use my arms or anything. Then came months of being in hopsital, doing physio, hydro, OT. drugs, infusions, quests for knowledge, increased pain management etc.
My drs finally decided to try a lumbar block as I just couldn't handle the pain any longer. It was my worst decision. I had it done and as soon as I came round from sedation my left leg had gone black. Whatever had happened whilst I was out - the RSD was now in my left leg as well. The sensitivity had got to a point where I was in shorts and a t shirt and I couldn't sleep on a bed - I had to either sleep sitting up or lying across a bed with my arms and legs hanging off. I lived in fear of being touched and was always on my guard in case someone came too close to me.
I finally came out of hospital in October time and tried to start at a new college on a full time course. I came out able to use crutches around the house and feed myself and that was about it. I dropped out of the A level course by december because I was in so much pain and so exhausted I just couldn't cope - I was still doing all the physio, all the desnense etc.
In November 2002 my physio put me in a wheelchair because I was so unsafe walking and because I had an infection in my legs. It was only going to be for a week or two. Four years on I am still in it. Whilst I was in the wheelchair I got dropped on the floor and broke my ankle causing dystonia in it and causing it to twist upside down and invert. Unforutnatly that was my "better" foot. From then on I started to get really bad muscle spasms, dystonic postures and found my muscles stopped responding how they should have.
Anyway. I then spent 02 and 03 in and out of hospital, trying new meds, new drs, new treatments, HBOT, blocks, infusions, physio, OT, hydro. Got assessed for and given new wheelchairs, started to have adaptions done to the house.
In Spring 2003 mum and I realised I wasn't going to be "magically" cured so she started a new thing with me. We decided to choose one symptom which seriously destroyed my qualiy of life - hypersensitivity - and worked on it. Slowly it started to improve, though we would have argument after argument about it - I wasn't allowed out of the house unless I was wearing trousers, socks and a cardigan and slowly as I forced myself to confront stimuli I realised the sensitivity was improving. I got a new bed (a heated water bed) and mum used to get up and check that I hadn't removed all the covers etc.
(you can tell she's a military nurse). ~Anyway - the sensitivity started to be dealt with slowly.
As I live in a very quaint area of the UK it thus means there is no wheelchair accessible public transport - and as I am miles from my nearest town and at least a 30 minute drive from college I learnt to drive an adapted car and passed my test.
I started back at college in Septemeber 2003 and managed to complete the year with ACC at AS. Went on to do another year at college and found a boyfriend who I pretty much lived with. He accepted me for who I was and what I could and couldnt do (I could feed myself, dress myself with help, drive
etv but still needed a wheelchair and help with quite a few things, cutting up food, getting in and out of bed, being lifted in and out of the bath etc).
Anyway - that year I got ACA in my exams. In this time my pain and dystonia had been getting worse. Although I had devleoped a better attitude towards the pain and realised that I had to get on with my life, and was still doing the physio etc I wasn't getting better, I was just getting worse. My feet were both totally inverted and my toes pointed backwards over my feet. I couldn't use my left hand at all because all my fingers had locked. I had specific splints for stretching my joints out but they were being odd. I got engaged to Jay and then broke up with him, realiing that firstly I didnt want this level of commitment and secondly it wasn't fair on him to spend his life with someone needing to be looked after allt he time.
I got referred to a neurologist in October 2005 after the spasms dislocated both my thumbs. This had been happening reguarly and had ended up with spasms whereI had dislocated thumbs, shoulders, knees etc. But my thumbs were the biggest problem as the spasms would pull them out of joint and then backwards over my hands - which was VERY painful and annoying! He didn't understand what was going on and so ordered an EMG to be done as he felt that it wasn't possible for RSD to get as bad as mine was. Meanwhile my pain management dr had decided to put me on ketamine because I was still not sleeping for more than 3 hours a night and even though I could now cope with clothes I still couldn't cope with anyone touching my skin etc. The ketamine trial was good and worked better than the high doses of fentanyl and morphine I had been on and so I switched.
A week later I got bitten by my dog and jumped. I couldnt open my mouth or hold my head up. Apparently the jump had caused my to develop orimadible dystonia. To avoid having to have tube feeds I had to be on liquidised food to try and eat it, though it also had to be thick enough to swallow as I also had problems with that. I was placed in a full spine/ neck brace to hold my head up and more tests continued as to why I had lost the use of it. Orthotics made me a special brace that I used during the day in conjunction with the head rest on my wheelchair to keep my head upright and to allow me to drive.
In March I had the EMG. Straight after those I lost almost the entire use of my arms (before I hadn't been able to use my fingers or thumbs, now I coudnt move my elbows either or my shoulders). Loads more tests etc and they discovered I had severe dystonia (which I have botox for). However, in 2006 I stayed in college, managed full time and managed to get 4 A's - the highest grades you can get. I got a place at a prestigous college to study psychology.
So now, on the 5th anniversary of me having RSD where am I? I am still in severe constant pain, I haven't slept through a night in 5 years. I take ketaime, dihydrocideine, baclofen, diazipam, benzhexol, ibuprofen, paracetemol and diclofenac. I am living away from home at university most of the time. I have live in 24 hour carers who feed me, dress me, lift me, etc. I use an electric wheelchair or am pushed around in my manual. My hands don't work and I have to have someone with me to do anything at all. I am waiting to see a neurosurgeon about possible having a DBS implanted. Both my feet are inverted and twist over each other, my toes are twisted backwards, my hips have twisted too. My periods stopped for several years and have now re started very sporadically. I still can't hold my head up and though my jaw has improved I still can't eat very solid food. I still aspirate frequently and have difficulty with swallowing. My elbows still don't work and my shouldners anre't much better. The botox has helped my right hand abit so I can operate my electric wheelchair. I have RSD full body and everything hurts, burns, stabs, screams. I can now wear clothes (but not shoes) but everything that touches my skin still feels like it is burning holes through it.

But at the same time - I now have a life - which is something I never considered possible. I have friends, I go out, I try and be as "normal" as possible. I even went on holiday last summer with my friends. I will never stop hoping that there is a cure or some relief somewhere out there - but my life is not going to stop whilst I wait for it.

HubbyWithRSD
 

Hey all - well here's our story....

My huband suffered a major chemical burn to his leg in 1995 - It was a work related injury. MSDS sheets were not available, he sat with this stuff on his leg for more then 24 hours. We watched the acid literally boil under his skin. It was a horrifying experience. We thought that was the worst of it until about a month later he was diagnosed with RSD. Then the real horror began. He fought for months and years through therapy, blocks, meds with horrible side effects....through lots of work and a pain clinic - a few years ago he was able to "control" the RSD. When I say "control" the RSD I mean he still delt with pain, but the RSD was not controlling him. We started to have a somewhat normal life again after years of suffering.


~ Our New Saga ~

Hubby found a job driving/transporting people (kind of like a taxi but for employees of a specific company) - Vehicle was set up decent for his leg (plus he now has brace) and driving did not effect his leg OVER ALL but there were days when he could not work and delt with pain, cramping and discomfort. He delt with it as best as he could as we have 3 children and he was always our primary wage earner, he felt if he did not do something he was not doing his job as a father and husband. (That male pride thing - Even though he suffered...)

After working this job for a year (some months putting on 10,000 miles or more) he developed ulnar nerve damage (your ulnar nerve is your "funny bone") in both arms. This vehicle he was working in did not have any ergo for his arms, thus the vibrations from the vehicle on roads and on "off road" areas like by railroad tracks and the long miles resting his arms on the side of the door and arm rest caused the casing around the nerve to be crushed around the nerve and there are also other areas of compression.

He was diagnosed with the Ulnar Nerve Damage in early April of this last year 2006 - They did physical therapy for months, tried braces, etc and finally had to resort to surgery (Ulnar Nerve Transposition)....They started with his right arm first.

We were told there was a 50/50 chance that he could develop RSD in his arm - But as hubby had another surgery (unrelated & approx 4 years ago) with great success we were looking forward to positive results and no RSD flare up.

We could not have been more wrong. Surgery took place in October and after a few weeks of therapy with little to no success - he was diagnosed with RSD in his right arm.

Needless to say all further surgeries have been put on hold (so he still has damage to his left elbow and both wrists...)

And here we go again...........

Hubby is currently on:

1.) Ibuproferen 800
2.) Hydrocodone 7.5 3x's daily
3.) Lyrica
4.) Cylexia
5.) Zanaflex (is that how it's spelled) for muscle spasms

He is in physical therapy 3 days a week too and we hope we can put this monster down again.

As far as our family goes, our oldest remembers the past RSD, and now hearing of a new "round", and also dealing with dads ulnar nerve damage has been hard on him - Our youngest 2 did not really experience the early RSD but are trying their best to cope through this new round of medical problems and now RSD. I personally find comfort here and through research. I work (although it scares me some days to leave my husband alone while the kids are in school) for sanity and financial reasons. I come online and here as often as possible. Knowledge is power I say, we WILL find something to tame this beast.

A Little More of My Story
 

I've commented some before. I'll fill in some details. First though, I want to say I'm so glad to find this site. I've had "the beast" for over 5 yrs but have never met anyone else with it. I'm hoping to get a chance to ask some of you more questions.

I was just leaving work on a Fri evening when a large room divider fell on me, trapping me under it. I'd seen it coming & "blocked it" from hitting my face with my right hand. Thought I'd broken several bones at 1st. Finally someone heard me yelling & pulled it off. My hand/wrist felt sprained, & my neck felt a little sprained. But within a couple of weeks (I kept working) I felt like monsters were attacking my right arm, hand, shoulder & neck.

I was sent to an Orthopedic Hand Specialist, who just shrugged when I showed him my swollen, deep blue hand & asked what it was. Even though my employer was furious that I never go a diagnosis, I kept going to this doctor (maybe I got hit in the head, too! :confused: ).

I had a torn ulnar nerve he said, & he put me in a splint & sent me for PT, too. The physical therapist kept saying something was "really wrong" with my shoulder, but the "hand specialist doc" just put off the MRI.

Two yrs later I got an MRI on my own & they found multiple torn ligaments, etc, etc. Fortunately I'd been seeing a Chiro who was GREAT with elbows & shoulders who kept it loose.

After the MRI diagnoses WC switched me to an Orhtopedic who was a "Shoulder Surgery" specialist. I told him I wanted to try injections before surgery & he went along with me (thank God!), because after 2 injections I could barely function due to the pain. I cried at work in the bathroom. That's when they told me I had RSD. Thankfully we didn't go straight for the surgery!

It took about another 8 months before WC would approve me for SGB's. But they worked fantastically when I finally did get them (total of 6).

My injury was in Aug 2001, and in 2002 I started having burning on the bottom of my feet. It slowly moved up my legs. They both now burn to just above my knees. I don't know if this is RSD or not. And, since WC only authorizes my doctors to look at my arms/hands (they've acknowledged it's moved into my left arm too, but not nearly as severe as right), the doctos just sort of change the subject when I ask what the pain is in my feet and legs.

Maybe someone has had a similar experience.

After I went to an Agreed Med Exam last Feb, not knowing 18 months of my medical records were not sent to him, he P&S'd me, so I have had to live on $720 a month "advances" from any settlement. I'm in dire financial straights! I've had to "live" on my credit card, now I can't afford the minimum & was on the phone arranging stuff with them today. But something always works out! I just thought my settlement would come through at least 6 months ago!

I live in a guest house that's just perfect, even though my family are all far, far, away. My landlords are my friends, & let me go without rent a month or two, even though they've had problems. But they just got a notice that their house is in foreclosure!! I feel so bad for them. So I'm trying to arrange to move....somewhere. I have about $75 to pay toward rent these days. So, I shouldn't have any problem, right? :D

If I didn't hurt so much & feel so tired, I'd dress up & go see if I could find a "Knight in Shining Armor"!! :)

I love to laugh, that's why I love reading some of the stuff on this site. You funny guys, KEEP IT UP PLEASE!

The way I try to look at it is that my life is kind of an adventure right now! I'm praying & waiting to see what opens up!

Take care all you precious people!

Denise

Hi Sheri,

Welcome! What kind of treatment have you been getting so far? It's great you're being so proactive in getting info! Good for you!

Denise

Hi HubbyWith,

That's for sharing your story! What a story!

Isn't it amazing how one time you can "get away" with doing something, & the next time "all hell breaks out" (i.e., your Hubby's 1st surgery was ok)?

Thanks for sharing his meds. Can he sleep when he takes Zanaflex? I've developed severe headaches & neck pain, I thought due to the sprained neck I got at time of injury. But I recently read Dr. Hooshwhatever's info and he said RSD in the arm/shoulder goes up into the back of the head causing occipital headaches. Which is what I have!

Usually my Ortho just had me on Soma, & I can't tell if that works. But when I had a severe headache I went to a PM doc on my own (WC won't cover him anymore - but he's trustworthy so I paid case to see him), and they gave me a Toradol (?) shot, and Zanaflex.

When they got bad again a few months later, my regular Ortho gave me Baclofen, when works just as well as the Zanaflex on my neck spasms, but I can't sleep at all when I take them. I don't remember this problem with the Zanaflex, but I was on a high dose of Lyrica at that time, and I've cut back since I'm not in a severe flare right now.

Also, they don't have me on a anti-flammatory (like Ibruprofen). Maybe I'll ask about it. I don't think my Ortho really knows how to treat RSD. When I hear of something & tell him he seems to be ok with trying it.

Your poor Hubby really must have suffered with that chemical burn! It sounds like a horror movie! I'm so sorry! How old are your kids?

My two sons have both been married for about 20 yrs. I have 5 grandkids. The youngest, Matt 11, is going to have surgery on a lymph node in his arm soon. There's a chance it could be Leukemia. We're praying.

I rarely see my family since RSD. I have to drive with only my left hand, which has of course caused problems in that elbow & shoulder also. I have a special pillow for my right arm to rest on so it doesn't "hang".

How does your hubby drive? Can he at all?? He's a blessed man to have such a caring wife!! You are special!!

Take care,

Denise

Hi - One of the worst things I have found with RSD is the non-support of medical professionals. It took 6 years for me to be diagnosed, test after test, attitude after attitude and finally confirmation. It started in my left hand/arm and face then moved to my right arm/hand. Both hands are effected now so I don't type long. But still, I am on 3 waiting lists for Ketamine (Any-one know a doctor?), one doctor will see me for 15k but he is far away and my current doctors say there is nothing they can do for me. Pain meds that barely touch the surface, no support and still a lot of attitude. Talk with people, search for help and reach out that is all we can do! Unfortunately, I have found that we must find answers ourselves. Don't give up! I made up a saying long ago that I think all doctors should adhere to...."For a man/woman to truly see, they must look beyond their own ego":icon_wink:

New to site
 

My story in short is as follows:
 

Hello everyone!

New to the group, here's my story, quick and short.

I have RSD in the right (diagnosed in 7/06) & left (diagnosed in 11/06)
(wrist arm and hand) on both sides. I believe I hit stage 3 when it
spread to the left side. CRPS1 due a strian so they think. I was at
work and they believe it is due to a repetative motion injuy from
typing (an unbelieveable amount) or possibly from lifting heavy boxes
during this time.

My daughters...
 

This has been a hard story for me to write but here it goes....

My daughter, Rebecca, was 8 when she was bitten by a spider and possibly hurt her foot in the snow. She developed a mild case of RSD (at the time, I thought it was horrible) but PT and time took care of it. She didn't miss school and life was great. She was LUCKY to be diagnosed within a few weeks of it starting by a fantastic doctor. The dr only took 5 minutes to diagnose but followed up with tons of tests to confirm. We were in PT that afternoon.

The monster slept for two years. To the point, I had almost forgotten it. Then, in PE, a mile run in the gym, set off the chain of events. While at an appointment for my other daughter, Annie, to diagnose RSD in her wrist, Rebecca was on crutches and the good Dr had her in PT that day. Six weeks into this flare, with a frozen foot and no help in sight, our dr referred her to a pediatric physiatrist. She is amazing! She prescribed Neurontin and continued PT and brought in a pain specialist. He performed a series of nerve blocks and provided many alternatives to them if they didn't work, but thankfully a set of five blocks worked and with PT, we got her walking again. She missed four months of 6th grade. But took tennis lessons in her wheelchair!

Seventh grade. Someone twisted her foot again in a collision. Back to the clinic, back to PT, back for 3 nerve blocks. I think we had fewer nerve blocks because as soon as the foot froze, our dr scheduled her immediately. She missed 3 1/2 months of school but had a homebound teacher. RSD moved to right hand for a total of one week. Our dr saw us the same day as it set in and gave us options, luckily we didn't have to use them. Weird.

Eigth grade (current). A great year. Wonderful teachers, fantastic support. Becca, living in my bubble, was walking down our outside steps and twisted her OTHER ankle. 'Just a sprain Mom! ' were the worst words I had heard in a while. The sprain came and stayed. It has turned into RSD and 6 weeks later, here we are. A huge fear for us, is that our pain dr has moved. He feels the new dr will be fine for us and she will do pediatrics.

She is not in school right now, but is trying hard to get back. We had a horrible week last week--but this week is better. The rollercoaster continues.

I know this is a place for RSD patients to ask each other for help, but I really feel like families suffer from it. I hope you don't mind if I chime in. I do think at times it is harder on me than it is on her as she is so supportive and optimistic. I wonder where she gets her strength. My girls are my heroes.

This is going to be long so you may want to either skim or read it in bits. :-D My story starts February 5, 2003 with an injury at work. I was a cook at Denny's, so was my hubby. I worked overnight and him during the day. It worked out very well because we didn't have to have any kind of daycare or after school thing for our daughter who was in 4th grade at the time and almost 10 years old.

I'd had to stay on at work that morning because my next cook didn't show up. So, I had to wait till the day manager came in. My luck it was the one manager who couldn't cook!!! Oh boy. Well, he no sooner walked off the line for the office when I side stepped to grab toast and BAM my left knee slammed into a broken handle on a reach in refrigerator. It had been broken for year and they wouldn't fix it despite many banged knees from every cook!! I hit it so hard that my vision went black and I'm lucky I didn't fall to the floor or crack my head on the counter back there. Bill came back right then and he immediately knew what had happened. I straightened up with tears streaming down my face, standing on one leg (I fondly refer to it as “pulling a flamingo”) and went right on cooking. I knocked down the checks then dragging my leg behind me, went home. I told them all to not put in any egg orders till hubby got there. Called hubby as soon as I left and filled him in on what happened on the way home. He was outside waiting for me to help me up the stairs. When I woke up that afternoon knee was hurting me but I could limp. I wrapped the knee up and went to work that night. Big mistake!!! Within an hour I was in so much pain and could only cry, dragging my leg around. The manager that night was an idiot and wouldn't let me go home or call anyone else in either. I somehow made it through the night. Told hubby let me get 4 hours of sleep, I needed to go to the hospital. He called work and talked to the boss and told her what had happened the morning before so she'd have the paperwork ready for me. Got up, did that and went to the ER. Got x-rays, doc poked the knee (lucky I didn't kick him!) and was told it was severely bruised. Put me in a child leg immobilizer (adult size was too big for me), got crutches and went home.

I saw 2 temporary docs in 2 weeks. The 2nd week I had ditched the immobilizer and started walking again. Didn't hurt too bad and had a limp. Was cleared for full duty again and went back to work. Managed to do 5 days. February 21st dawned and I was in excruciating pain!!! Leg was so swollen and I couldn't put any pressure on the foot or leg at all without pain shooting sky high. Had to wait till Monday to see if I could go back to the doc. Got in on Tuesday morning. The regular doc was back from vacation and he was a real a**hole!! He didn't actually say it but he implied I was lying and faking it. Tried making me walk without the crutches down the hall and I didn't even make it out of the exam room. He ordered an MRI, came back negative for anything. Went back on Thursday because leg was swelling even more and turning really funky colors and was ice cold to the touch. He brushed it off and said it was nothing. Got MRI done and was sent off to an Ortho though it showed nothing. It was the start of April now and within 5 minutes at the Ortho he diagnosed me with RSD. When I asked what it was he told me to go home and look it up online. Gave me klonopin pills and something else I can't remember but no pain meds. Wrote a scrip for PT. Came back in 2 weeks and he had a really bad attitude. Treated me nasty for no reason and told me I didn't need those crutches and I better be off them when I came in again in 2 weeks.

I had to get a lawyer in that 2 weeks because work comp wasn't paying me and was denying me PT. I don't understand that one at all!! Once I got a lawyer they approved PT right away!! Got in 2 or 3 sessions but still needed crutches to walk at all though I was able to put slight pressure on foot/leg. He wasn't happy with me the next time and treated me even worse than the last time. He yelled at me and stabbed me with a pin. I told him the thigh and hip were now hurting and he got even more angry. I begged for pain pills, couldn't take it anymore. He all but called me a junkie but gave me 20 tylenol 3's. What a joke! Didn't even begin to touch the pain. He was passing me off to another Ortho for a “second opinion”.
2nd Ortho diagnosed me with RSD again and gave me scrip for lortabs. I thought great, finally some good treatment. Seems I spoke too soon. He wanted me in PT because of noticable atrophy of left thigh. I told him it hurt me a lot the first time around but he insisted. So, did round #2 and made it for 10 sessions before PT dismissed me because it wasn't helping at all and I was getting worse, pain wise. First round of PT I was only approved for 6 sessions and did them all. Did a bit of pool therapy as well which helped me get off crutches completely after almost 3 months on them. The 2nd round did reverse the atrophy in my thigh and it hasn't returned. He was nice the first couple of appointments. By the 4th he was getting a bit surly and almost refusing me pain meds and had me on 2 a day. HA! What a joke. I happened to get a peek at my file and saw what was written there. He had written that I had residual rsd. I told my hubby what it said and we both had a really hard time not laughing our butts off right then and there. I said, what is that?? Is it better than what I got cause if it is I want it. Then my left leg started doing that uncontrollable jerking thing right in front of the doc and he had the nerve to look me in the eye and tell me I was getting better!!! Yeah, I was full body already. He had ordered a bone scan in July before I saw him in Aug and it showed nothing other than a healing fracture in my knee that no one knew was there.

He decided to pass me off to someone else so ended up at a Neurologist. He ordered another bone scan which came back negative for anything. He gave me vicodin 5mg, 3 a day and then wouldn't give me enough to even get through the month so I was always running short. He put me on the Duragesic patch for about 3 months then took me off. Within a few months I settled with WC.

In between the “regular” docs I saw over that year and a half, I was also sent to a Ortho for wc's second opinion. That one looked at my legs and feet. Now they were so purple they were almost black and he told me I had RSD but I was getting better. Oh geez. It upset me a lot but what could I do. They work for the insurance company not me. Then I was sent for 2 IME's during that time as well. The first one near my home wasn't bad. He was a good doc, asked good questions and was gentle. Told me I had RSD and what treatment he would like to see me get. The 2nd IME was in Orlando, 2 hours away and he was a quack!!! He spent 5 minutes with me, turned my legs into a pretzel and said I didn't have RSD because I didn't scream when he touched me, I had no atrophy, no stiff joints. Never mind all the other symptoms, including pain and burning and sensitivity to air, changes in skin, hair growth change and change in the way my nails grow. Upset again but at least I didn't cry, I was really ticked off!!

After I settled with WC, got a new place to live after 2 more months (thanks hurricane Jeanne) I went back to the Neuro thinking he'd be better cause I'm paying now and besides he already knew all about my case and had dx'd me with rsd for the umpteenth time. I was sooooooo wrong!!! He refused to give me anything other than vicoden 5mg. He says you have a choice, vicoden or the patch. I told him I don't have a choice because I hate the patch, it made me feel sick all the time and tore my skin up and the biggest reason of all, I can't afford it!!!!! I'm paying for myself now and don't have that kind of money. Soon got sick of it all and after the third visit never went back. Went through a very rough few months until I found a new doc. He's wonderful and the whole office staff is awesome! They really care and let you know it. If I have questions about anything I can ask and the time is taken to answer me thoroughly. I decide what I take or don't and I'll decide when I need a new med or meds and then we'll discuss it, settle on the what and go from there. I hope to never leave this town so I can keep this doc for as long as possible, hopefully forever. :D

Karen

PS RSDMom, I can see where they get their strength from, you. I wish I had a mom like you!! *hugs* Oh I'm 37 and still mom-less. LOL I hope things improve for you all. You're 100% right, families suffer RSD not just the one with it.

Hi Everyone!
I was diagnosed with RSD 8 years ago, in my first week of high school. I'm one of those fun cases where there was no precipitating injury, just a sudden onset of symptoms - horrible pain, loss of circulation, etc. That first attack lasted three days - my lower leg looked like a cadaver and I couldn't walk. Luckily, my case is not one in which that is always the case, but it made diagnosis difficult. Sometimes, I would go to a doctor and they would see the decreased/nonexistent circulation, the stiffness, the cold, etc. Sometimes, I'd have pain but no other symptoms.

To make an overly long story short, in the last 8 years I've seen dozens of doctors and tried everything from PT and hydrotherapy to sympathectomy. Most were simply ineffective. The sympathectomy was a nightmare - the poor, scared resident doing the procedure had no idea what he was supposed to be doing, and then afterwards, I had post-sympathetic pain for a year. My best success has been with Neurontin for pain control - it works about 50% of the time. I use narcotics only when absolutely necessary - I don't want to become dependent on any of my medications, and all of this started when I was still a teenager. I have this terror that I'll become too accustomed to my meds and they'll no longer be effective when I get older.

I've had a consistent progression of circulatory symptoms, with accompanying muscle and bone loss, permanent damage to the veins of my leg, etc. that I'm sure you've all heard of/seen/experienced before. I've been really lucky - although my pain and other symptoms have progressed and radiated from the original site (right knee), I've only very recently begun to experience any symptoms elsewhere, which is probably partly my fault. I refuse to use crutches or a wheelchair (I'm often stubborn to the point of idiocy), which means that I limp a lot. This has meant that my left knee has had to bear a great deal more strain, and now the deterioration is progressing rapidly, with the onset of RSD-like symptoms.

Anyway, without too much whining (I hope), that's my story. I am so glad to finally be talking to people who actually know what I'm talking about! :)

Hi,

I am Mieke. I can't type much so I will keep it short.
After 20 years of struggling with doctors (one ruined my knee), I was diagnosed with RSD. My foot has been saved from amputation 5 times, but the doc could not prevent my RSD spreading through my whole body. The consequences of this all are that I am completely bedridden, I wear braces on my whole arms and my leg and have an electric wheelchair. I hardly come outside (maybe twice a week) and when I do it's usual for the hospital. I don't go on holidays either.
I live in an appartment of Assisted Living and my American husband takes care of me the rest of the time. I am on a load of medicines from Tramadol to a plaster with fentanyl, but it seems no one is reaaly able to control my pains anymore. It's also entering my organs now (liver and bladder and I got asthma).
I hope to find some friends here that understand what I'm going through.

Mieke

My rsd started from a blood test in my right arm 6 years ago. The nurse put the needle in too far, damaging the median nerve. I did the rounds of medications etc over the years, have had lots of highs and lows, and thankfully I had a lull long enough to be able to have another baby (my third, a son called Dayne).

I've had three ketamine infusions. (7 day awake treatments) The first giving me pain relief lasting 30 days, the second lasting 10 months. During this ten months I was able to fall pregnant and have baby #4- Hannah, now 8 months old. But while I was pregnant (about 5 months) I was bitten by a spider on my leg, and before I knew it my rsd had spread to there as well. Being pregnant, I couldn't take any meds and struggled thru the rest of the pregnancy. The first infusion also did away with 70% of my allodynia, which was fantastic. It doesn't hurt me so much now when my kids touch my arm or hand.

I had another ketamine infusion when Hannah was 12 weeks old, but unfortunately it didn't help the pain in my arm or leg, and it was stopped early due to raised LFT levels in my liver. Since then I've had to just go back on my previous medications while I'm waiting to see my pain specialist. The symptoms have spread quickly through my foot (of course breaking my toe in December 06 didn't help :rolleyes: ) and up my leg and life is tricky right now. I can't take my breakthru meds anymore (endone) because I chuck them up everytime. Hopefully I can see my dr soon and get something working for me.

I'm now 29 and have four kids under 9 who I adore. :p We live just north of Sydney, Australia and my husband is carer for me and the kids, so we're all together nearly all of the time- which is one of the good things to come out of this! :rolleyes:

x Kate

Hello, I know exactly what you are talking about. It is my husband that suffers from rsd but we went through approximatly 15 doctors before getting any real help. He was accused of everything from laziness to wanting drugs. Many doctors would have him in hospital give him drugs to heavily sedate and try to ask him questions when he was in a fog. We have found help and I see you are in PA. There is a Dr. Mary Torchi associated with Pain med pc and has office in Greensburg and Pittsburgh. She also sent us to a therapist who now is in Greensbug named Jerry Felton. We think very highly of both of these people. Not that it has been easy but they are compassionate and realize not everyone with this responds the same to treatment.

I've had RSD for 3 1/2 years. I had to have 2 nerve releases in my left arm. But after the surgery, I wasn't healing . The pain was worse. So, the surgeon thought right away that it could of been RSD. But was not sure but sent me to a pain specialist that specialized in RSD. He said that I had it. I had a nerve block that day, followed by a month and half of nerve blocks. HE told me he could keep doing this but it would be expense for me. So, my next thing was SCS. I had the trail which worked and little. So, we went ahead with the SCS. I worked for the first month a little then I fell and it didn't work so well. But, it was still in the right place by what x-rays showed. I'm on meds, too. I go in every two week too get reprogrammed because that the pain is extremely bad. But, it does not work. My left arm is contacting. So, we try phyical therapy, which cause more trouble for me. My right arm went numb and I was have the burning pain and the same problems as the left. Then I could not move my left hand, arm at all. So, we stop that. I try my on exercise with my left arm/hand but it still contracts. I am in the process on changing doctors because this one will come to my town once a week. But, even my family doctor sees that my doctor now is not doing anything. So, we are changing. I do have a wonderful husband that helps me everyday. He is so wonderful. I know it is not only me going though this but also him too.
His life changed too. But we make the most of it. :hug: Annick03

Our Stories & Introductions
 

Hello everyone, this is my first time to post on this forum. I am truly sorry we all have this disorder in common. I, like most of you, have been to many Drs
and misdiagnosis, missing the 6 month window of opportunity to have any procedures to stop the circle of pain from injured site to brain. My family live is Scottsdale, Az for 8 years. About two years prior to moving I had a botched left breast surgery and lymph glands under the arm They removed the benign tumors, but the following day complications reared up its ugly head. I had fluid removed from arm two or three times. My entire arm became frozed -useless, and painful to touch. I was told I had frozen shoulder and sent to a nice Rehab Dr. who said it was the worst frozen should she had ever seen. After 100 physical treatments and 100 massage treatments(which I paid for) I felt they would help the p.t. to get my arm back. Very Very painful I had refused surgery from the orothpedic surgeon the break my arm-still woud have had to have p.t. treatments. After moving to Scottsdale, our daughter 18 attented a college to be a court reporter. This was the closest to Oregon. There are only 5 with a BA in the country.
She has been in cases regarding RSD patients sueing Drs. for failing to inform patient of risk of getting RSD from the surgery. There are sooooooo many.
Anyway, after moving here the RSD moved to the right shoulder. Then, it moved to my left hand. After more than a year in left hand and hand completly frozen, then p.t. to get the fingers moving again partially- it's like a claw. This is when I decided to fly back to Oregon to a sports injury group. The hand Dr. came in the room and said in 30 seconds- I'm afraid to tell you RSD- hope it isn't. Tests at the hospital said RSD. not arthritis the Scottsdale Dr. said I had- Sometimes I wish I hadn't let the two year of opportunity to sue. (That's two years from learning of the disorder-not two years from the injury. Law in most states. Then the RSD moved to the right hand, both feet, neck- Dr. calls it full body. Also have Trigeminal Nerve Pain on the left side of face. I would like to talk to Denise G in Palm Springs. My e-mail is patch2 @ cox.net. I'm so sorry again aand would like to share a couple of things after 10 years of experience and learning. I don't mind using the forum too, if it can help others. I've learned to much on the forum. I just joined this forum a couple days ago. It was another forum I learned a lot, plus a support group in Phoenix. We had a wonderful conference at Barrows Neurological InstituteThere was also a national conference downtown Phoenix at the Hyatt to educate Drs. and nurses nationwide to look for signs. Probably half in the country have never even heard the words RSD. Thank you for your patience in allowing me to share my sorry. It's unbelieveable the helpful education we receive here. LOL loretta

RSD dx ed in 1968 Hi
 

Hi I guess I havent been here for a year or 2 I think I was Comenyaro before . I had RSD dxed when I was 14 there are names like Sudecks Atrophy etc etc but later I foubd they were all RSD my Neurosurgeon (who I respect so much ) still calls my RSD "Causalgia" which it is burning (much like a Third Degree burn when the nerves come back) I havent had trouble getting my meds from Doctors since 1983 though Pharmacies have wanted to be Drug Policemen ,if you want to know what I take I would tell the amounts privately (E Me) I tke Morphine Contin sand Morphine Ir Klonopin etc etc ,I have Major Depression but I figure most with RSD do ,hurting this bad is depressing ,I have tried blocks SGB and Epidural ,Sea Snail Venom and Puffer Fish and SCS and "Morphine Pump" but gor me just taking my meds helps most ,I am dependent but not an addict ,if I can ever answer any question or be of help E me ,my RSD has been diagnosed since 1968 but I'm sure many of you have had to wait years to get the right dx like me still I had RSD since 13 so thats like 39 years dx ,I keep good thoughts for you all Gentle Hug rsdno

This is to Septmystic, My name is loretta, and I have had RSD 10 years-full body now. I live is in Scottsdale, AZ There is a Mayo Clinic here, close to where I live. A friend of mine worked there and with 5 Drs. studing ketamine and RSD. Dr. Swartzman was one of the Drs. I for get the other names. One went back to Germany where they allow patients to under go a 5 day coma under ketamine. FDA allows ketamine doses less than that I believe for three days. Australia has been doing this procedure for some time. Swartzman I believe came from Australia. Any Dr. Swartzman and a 2nd Dr. from the Mayo ketamine trials are now at the Hershey hospital in Penn. I called but got no return call. I've heard there is a long wait list. The results vary , but are not permanent. Hope you can find help soon. I know this pain gets real old. I use music therapy, my cat, long soft fur and she loves to snuggle with me in bed. I love reading. This forum is wonderful to not only be able to express our thoughts but listen to others share their pain and disipair and their knowledge and encouragement and just enduring. I try to exercise daily, in the summer swim every day. I belong to a health club with indoor pool, I just haven't been able to get the energy to get there. It's only 1/2 mile away. Hope you find a Dr. soon. Loretta

ToGalena Faolan, I'm so sorry for all the discouragement you've had with Drs. I also had a very long time. We moved from Oregon to Ariziona. I had
Drs. in Az. not giving good treatment and diagnosis so I flew back to Oregon to good Sport Injury group in Eugene. Dr. walked in room and diagnosed me in 2 minutes. followed by tests at the hospital. I have lifetime full body now.
I'm going to post longer after this on this thread. Sincerely, Loretta

My RSD journey started in 2003. We still don't know how I injured myself, but it was likely because my foot was too flexible, and I got tendonitis. I didn't get officially diagnosed for six months. After a year, my RSD went into remission. Now, though, it's back, and spreading. It started in my left foot, not even all the way up to my ankle. After it came back, it got much worse, and is now up to my knee.

Just so no one is surprised, I'm blind, and travel with a guie dog named Julio. I'm in college, majoring in social work. I look forward to participating here.

Here is my story. Kinda long, but a lot happened. So here it is.

I was a gymnast for 11 years and had just made it to level 7. On June 8th of 2006, I was tumbling and I landed on my face and hurt my right foot. My mom then took me to the doctor. Once there, they determined that I broke some bone in the the ball of my foot so they put it into a temporary splint and crutches until I could get in to see my orthopedic doctor. After a day or two, we got into the orthopedic doctor office. My regular orthopedic doctor who we had dealt with in the past and was an excellent doctor was off that day. We were scheduled to see a different doctor. He took some more x-rays and said that my foot wasn’t broken and gave me a foam shoe and said to get off of the crutches and out of the shoe soon. He wasn't very nice. Anyways, the next day, my foot started turning black and blue and it was even more swollen and it started to hurt more than a break should hurt (rsd pain). It was also ICE cold. It wasn't hypersensitive at the time. We got back to the doctor and asked for my regular orthopedic doctor. He wasn’t there so we saw another doctor. He said that it was broken and he put me into a cast. He said when we came back in 2 weeks, my doctor would be back and we could see him.

Two weeks went by and we went back to see the doctor. My doctor was finally there and said that it looked as if my break had healed nicely, as if it was never there. He gave me an orthopedic camel walker boot with an air pump and said to use that and the crutches as needed then slowly wean off of them. Then he said for us to come back in a month. I started school then again after the summer break and I forced myself not to use crutches, but the pain got the best of me after a week and I resorted back to using them. My foot also began experiencing hypersensitivity to wearing shoes and rough socks so I went back to the ortho boot and fuzzy socks. The ortho boot hurt still, but I was able to tolerate it and it hurt a lot less than everything else.

After a month, I was still in the boot and on crutches. My doctor wasn't there, but we saw his nurse practitioner. My dad brought me this time opposed to my mom. My mom knows that we are not supposed to see her because something always goes wrong when we see her. I tried telling my dad that but he insisted on us seeing her. She got angry at me for being in the boot still and still on the crutches. She said she wanted me to walk out of here without crutches. My dad said okay and put them in the car. I felt as if I was going to die when walking out to the car. I stopped after 20 feet and just sat down and stayed there until my dad brought the crutches to me. It took 20-30 minutes and he finally gave in. We then went to see my mom and she was furious at my dad and the nurse. She told me to still use the crutches if needed, which I did. She also called the doctor back and told them she wanted to reschedule immediately as soon as my doctor came back. My mom took me this time and we found out the day of my appointment that I was scheduled with the nurse again. My mom told them that we were rescheduling again so they fit us in the next day. When we came the next day, the nurse saw us and asked why we had rescheduled and my mom told her that we wanted to see the doctor. We saw him and he realized that something wasn’t right with me because he knew from the past that I bounced right back from an injury. He scheduled me for an MRI within 3 weeks. I also started physical therapy 2 days a week for an hour a day, but it didn’t seem to be helping so we stopped after 2 weeks.

After the MRI results came back, they were abnormal. My doctor said that it was either arthritis or RSD. He believed I had RSD, but I had to have a blood test to rule out on of them. After the blood test, the results came back negative for the arthritis, so I was officially diagnosed with RSD on September 23rd. I then started physical therapy again with another person.

Slowly I began declining. The hypersensitivity was greater and the pain was becoming more severe and it was always cold and hurting more than I could ever imagine. I still went to the gym, but not as often. When I went, I would do stuff that didn’t involve my foot. I started physical therapy again with another person. He was okay.

Then by the beginning of November, I started to feel the same pain in my left foot. It wasn’t as severe, but it was getting harder for me to use crutches. I temporarily stopped the therapy also. My arms also started hurting, but I didn’t want to sound like I was complaining too much. I thought my arms were just sore from being on crutches for about 5 months anyways. I told my mom about my left foot and when we went for thanksgiving to visit my grandparents, we got their old wheelchair. Unfortunately, it was made like 50 years ago and it wasn't exactly the right size or in the best shape but it had to do at that time. I went back to school in the wheelchair and my arms seemed to not hurt so much anymore so I was okay temporarily. My mom called the doctor back and they scheduled me for a lumbar nerve block. That ended up relieving the pain in my left foot, but it made the RSD in my right foot more severe. My left foot was never as severe and I never experienced the hypersensitivity though. I was able to revert back to the crutches.

After letting my mom know that the nerve block made my right foot feel worse, she called back my doctor and he said that the only thing he could do for me temporarily was to make a SAV cream to apply to my foot. He prescribed one and I got it within a week. I started applying it once a day. I stayed on it for a month or so. I also started therapy again. It was a lot harder than before. When I went back to the doctor, I told him that the cream wasn't doing anything (no harm, but no help). He then prescribed me another one, this time for the circulation. It had a vasodilator in it. He told me just to put it on my right foot. The physical therapist I had been going to told me it might be easier if I just started going to a local place with a pool and then go to him every 2 weeks because his place was a far drive for us.

After the first day in the pool at the new place, my mom and I noticed I had a small red rash on my right foot. Because she is a nurse, she knew that vasodilators could cause rashes. She told me to stop using the cream and just make sure that the rash doesn't get much worse. She called the doctor back. He said to just keep an eye on it and let him know if it gets worse. He said don’t use the cream anymore. Over the next few days, I kept an eye on the rash. It slowly began to grow and then it seemed to cover almost the whole top half of my foot. Then my foot started swelling to double the size it was with the typical rsd swelling. I couldn’t get it into the boot anymore. With the RSD pain and the swelling and rash, my foot felt unbearable and I decided that if it didn't get better then I would want it amputated. We let the doctor know and he was out of town so they scheduled us the next day with the who else but the nurse practitioner again because she was the only person there that had seen my foot since being dx with RSD. My mom wasn’t very happy with that but since it was an emergency, she stuck with it. The next day, my foot was four times the size it was before and it had an almost blistered look on top of it. It was starting to all the colors of the rainbow. The nurse saw it and she saw it and said it was just a severe rash and it should clear up in a few days with prednisone and cream for rashes. She said I might need an antibiotic but she wouldn't put me on it unless it gets worse. I could even tell it wasn’t just a rash and I'm just 15. Anyways, I went back to school after that appointment my foot kept on growing and turning more colors. It didn’t look like a foot anymore. I had to take off the ace wrap I had on my foot. I could feel that my foot was swelling up more from that. I purposly put it on loose so I could tell if it was swelling. I had a sock on under the ace wrap so nobody was diguisted. In class, I asked to go to the bathroom cause something felt really wrong with my foot. I checked it and couldn't move my toes anymore and I could only see the top half of my toes. To me, it looked like a colorful elephants foot. I somehow managed to go through the rest of the school day. That day, we went to visit the gym because I visited it every Thursday to say hi. We went and I said hi to the team parents like I always did when I first came. They wanted to see my foot. I showed them and it looked even worse. I couldn’t see my toes anymore and my foot had black patches on it along with the other colors of the rainbow on it. They were really concerned and told me to go visit my teammates and coaches while they all talked (with my mom). The adults talked during that time (probably about my foot) while I visited. They wanted to see how my foot was and everyone was really grossed out. The coach who deals with medical issues also said that it looked really serious and I should probably get it checked out immediately. After visiting, we left and when we got in the car, my mom asked if I wanted to go the emergency room. I really didn’t want to go even though I knew I had to. We went home, took our time, got something to eat, and I emailed one of my teachers to let her know and I knew she kept in contact with two of my teachers. After that, we left. At the ER, we waited about an hour then got in. They took my blood pressure and pulse. They were really high. My resting pulse rate was in the 100's and my blood pressure was high enough to where I would probably need to be on a medication for it. They said it was probably anxiety. We were put into a room and an hour or so later, we finally saw a doctor. He was very nice. He said it might be an infection and he went to take x-rays to make sure that my bones weren’t infected. The x-rays were normal. He said it looked like I had dermatitis and cellulites. He put me on prednisone and Keflex. He gave me some pain medicine to help me sleep. Then they said if it gets worse, come back. They didn’t want me going to school the next day (Friday).

We got home at 3 in the morning. The next day, I took all of my medicines I needed to and called my teachers to fill them in on what was going on. I ended up not eating the whole day also because of the prednisone. Then Saturday, I noticed I was starting to get a rash on my other foot and up to my thigh. It started to hurt once again. The RSD was coming back and it was worse than ever in not only my foot, but my shin too right below the knee. My right shin looked like I was wearing a sock because it was dark purple and it ended an inch below my knee like a sock and it hurt like RSD also right below the knee and down. I was suprised that the RSD could spread so quick. I also discovered an "interesting" talent. If I beared any weight on both of my feet, they turned all purple and black and hurt more. Okay...not the best trick cause kinda contributed to me going back to the er along with it going back into the left foot. My mom once again took me to the ER that night. They got us in and we waited in the room for another hour or two. By midnight, we saw the doctor and he wanted me to have a blood test to make sure it wasn’t an infection and he also scheduled me for an alter sound the next day around noon to make sure there were no blood clots. I had blood drawn and they read normal with the exceptions that RSD causes and the increase in sugar from me drinking a huge sugary drink :p They then said I didn’t have cellulites or dermatitis. They had me stop the medications.

Sunday afternoon, I went back to the hospital for an alter sound and they said it looked normal and there were no blood clots. The rash had spread up to my arms and they said it was an allergic reaction but they didn’t know what it was from. They scheduled me an appointment with an orthopedic doctor the next day. They didn’t want me going to school until they knew what was wrong just incase. My orthopedic doctor was out of town again so I saw another doctor. He said that my right foot looked like nothing he had ever seen and he didn’t know what to do for it. I started crying and I was so frustrated that he didn't even try to help. He said that he could try and schedule me for an appointment with his wife, a dermatologist, to see if she could help determine what the allergic reaction was from. We agreed and we saw her the next day. She was very nice and did the biopsy on my left leg to see what the less severe reaction was which hurt like.... yeah. Anyways, afterwards I got two stitches which I am terrified of for some reason. She said she would call with the results, but by the way it looked, it was either an allergic reaction or RSD. She called and said that it the minor rash and the purple shin that looked like a blood clot was really an allergic reaction to a drug, which she determined was the Keflex. She gave us more prednisone and told me to take it for 30 days and slowly wean off of it. We also scheduled another doctor appointment as soon as my doctor came back and he said that what had happened to my right foot was Steven-Johnson’s-Syndrome. It is a syndrome that leads to having bad allergic reactions that can be fatal. Thankfully, since the allergic reaction was to a cream, it wasn’t my whole body. If it were taken as a pill, I would have either died off suffication from the full body swelling or have severe permanent damage because my whole body would have looked like my foot. He also scheduled me in April to have a series of nerve blocks done 3 days in a row (leaving the catheter in and being hospitalized) and after each injection, go to intense therapy each day.

I went to therapy and back to school that Thursday in the wheelchair again. The therapy was very intense for me. On Friday, I ended up leaving school early because I felt sooo much worse, probably from the therapy. I got picked up and went home. My mom called the doctor again and talked to him on the phone. He scheduled the series of blocks originally for April, but he said it couldn’t wait that long and said for us to call him the next day because by then, he should know when the doctor could do it. He wanted it done very soon. I panicked. That Friday, my mom called the doctor when I was at school and I was very nervous the whole day. I quickly rolled into my science teacher’s room at the end of the day and tried calling my mom, but she wasn’t in her office at the time so I waited until I got home before calling her. She then told me that they were canceling the appointment because the doctor that was going to do it was out of the country. Instead, my doctor had another idea. He had a former patient that went through an intense therapy program locally and was nearly cured of her RSD. He said it was a less severe case because it never spread from her right foot, but the fact that she was nearly cured of it was wonderful. She is now able to walk again and run and do everything again. She has some difficulties here and there, but for the most part she is cured. He wanted me to go through it also. I would have to become homebound. Hearing that made me cry :(

That Saturday, the RSD returned back into both arms all of a sudden and it was hard for me to do anything. They couldn't do anything for the few days because they aren't open on weekends and I was going to start therapy that Wednesday, but my doctor said, after my mom called him about it going into my arms, to not go to school. The therapy was going good and after I learned to walk, I stopped crawling on my knees (as I had been doing since I broke my foot in June). A week later, if that, it spread into my right knee. It's doing better now there. Still a little slow at bending it, but its better. Then yeah. The end. I'm so good at ending stories, I know :)

HI,
 

I'm new here, but I've been living with RSD since '93 from a work injury. I've done the fighting insurance companies (boy they can be a pain in the behind!), workers comp and SSA.
Seen many doctors (and many that were not very good or on the ball), many meds, blocks, and PT (which made mine worse.)
I live in WA but used to live in OR.
I've no human kids (yet) but do have parrots and outdoor cats and the ol' man.
The critters are sometimes all that keep me getting out of bed some days as they need me. Been great therapy:)
My RSD started in my left foot but has moved up the leg and hip and is doing it's damndest to move into the other leg.

Hello Everyone
 

:) Hello, I'm a Dental Assistant, who ended up with Carpal Tunnel Syndrome in both hands (mild CTS in the Lt. hand and severe CTS plus trigger finger in my Rt. hand which was unfortunely also my dominant hand) I had carpal tunnel and trigger finger release surgery on my Rt. hand in 3/06 and things went down hill after that! A few months after the surgery I started having severe burning pain and my hand was swollen twice it's normal size and turned bright red in color. In 10/06 I was diagnosed with R.S.D. and have been fighting Work Comp ever since (I.M.E. says it's recurrent CTS). My 3 doctors say R.S.D.

hiya
 

hi all. i'm angie... i just turned 33 - wife of josh and mom of 3: talley (girl, 7), london (boy, 5) and scout (girl, 3).i was diagnosed with RSD about 3 days ago. i had shoulder surgery in march and had constant pain afterwards. the pain meds wouldn't work and i finally had a face-to-face with my doc about the pain that was burning a hole thru me! i had an x-ray and an MRI that showed the surgery was a success, but the pain said something different. i also had a purple hand and cold and numb fingers.

she told me i had RSD and sent me up to the pain clinic. the doc there said he didn't know... said 50/50 chance, but that he wanted to do blood work, a bone density scan and a shot in the neck. he said if the shot worked then he knew what it was.

well, i had the shot and it worked. i left the office without any mention of doing any other tests.

i'm really scared. i have a loving husband, but he doesn't understand how much pain i am in and thinks i just want attention. i am a very, very active person. i love any kind of sport and just play till my body stops. i'm scared that this is going to take over my life! i have been forgetting things. i have been talking strangely - i will start a sentence and then start the sentence over after saying the first 3 words like... i have to i have to go to the store.

can you guys relate to this?

i'm glad i found this forum.

ang

photos and descriptions of members- a fun thread
 

New Member: My road to RSD
 

Hi,

My name is Sue. First let me say that I am so glad to have found this forum. I feel that I no longer will be alone.

I have had RSD Type ll for 8 yrs. All my life I have had a hip problem. After many docters and operations I heard the news I had been waiting for all these yrs. My Dr. agreeded that I needed a hip replacement. I was so happy. He told me my pain was going away. Boy was he wrong. A 4 hr. operation turned into 7 and when I woke up, my right foot would not move. They fitted me for a brace right away and said I should get better in time. 3 months later, the pain was getting worse. Burning like I was on fire. My foot would curl up with muscle spasms so bad that I would just scream while my husband tried to uncurl my foot. Well the years have gone by and I have just gotten worse. Its hard to walk, sleep, get out of bed, you all know what its like. The meds are so bad, but I need them to do "normal" things. I've tried to work, but had to stop 2yrs ago.

The worst thing for me is my family not understanding. My kids think I am a drug addict. Everyone says I need to just deal with it. Easy for them to say.
My hands are starting to go numb from typing. Have to stop.

Thanks for being here. God bless.

Sue

New member, CRPS or not?
 

Hi, my name's Robin, I'm a middle-aged male, single, living alone in a rural area of central Scotland, UK.

A few days ago I told my physiotherapist that, having done some research, I thought I probably have CRPS type I, and he agreed that seems likely. I've yet to discuss it with an MD. I'm due to have acupunture at a pain clinic on Friday when I might be able to have a short chat with a doctor, otherwise I'm due an evaluation at the end of the course of acupuncture, in a couple of weeks, when I expect to be able to discuss the big picture with a pain specialist.

The problem is in my left knee. I first injured it many years ago, but about 2.5 yrs ago it got hurt on a hill walking expedition and it's been getting worse very gradually ever since. I used to do a lot of hill walking but haven't done any since that incident.

When I say it's been getting worse I don't mean steadily: there's a cycle in which I rest and it gets better, then I get more active and it gets worse again, but the general trend is for the lows to be lower and the highs to be less high each time around.

A bit over a year ago I had surgery on the knee: debridement and decompression of the patellar tendon. The operation seemed OK (as far as I know) and the wound healed very well but then it seemed I was back where I had been before the op, except maybe a bit worse.

I saw the surgeon occasionally, and a physiotherapist regularly for a while, with no improvement, then eventually the surgeon noticed that my left leg seemed cooler than my right, and there was some discolouration of the skin on my knee, and he decided to refer me to a pain clinic and a different physiotherapist. This was towards the end of 06.

Unfortunately, neither RSD nor CRPS nor chronic pain syndrome was actually mentioned until a few weeks ago, so I was skeptical and paid for a second opinion and MRI. The scan showed nothing significant and the second orthopedic specialist agreed with the first. (It was unfortunate in financial terms but maybe a good thing in that it convinced me that there's probably no major mechanical problem.)

The pain specialist decided to try acupunture first. I had three sessions, from which I noticed no benefit, then they switched to electro, and I thought my knee felt slightly better for an hour or two after. When I said that, they decided to increase the course from 6 to 8 or 9 (not sure) sessions in total, on a weekly basis, so I'm due 2 or 3 more.

I've gotten the most info from the physio, who when I first saw him mentioned "chronic pain syndrome" and took the time to explain how nerves can get "activated" so they keep reporting pain even when there's no good reason for it. It's only looking back that I can see that's what the specialists and my GP have had in mind.

My actual pain levels are not that bad. I'm not using any prescribed meds just now. Most days I take just one 400mg ibuprofen for comfort in the evening. But the activity level I have to keep to is very low. I stopped working towards the end of 06, I get food delivered, and, apart from medical appointments, get out just once most weeks, to see my elderly and frail parents on a Sunday afternoon. I spend almost all day, most days, sitting in my armchair with my legs raised, using my laptop, reading or watching tv. If it wasn't for the laptop I'd go crazy! I have a couple of websites of my own and run ones for other people. Also, as I was a self-employed computer technician and still have ads in some directories, I get regular calls from people with pc probs, and do what I can to help them over the phone.

My big problem right now is that, when I work on the laptop, my leg muscles tend to tense up, which sets off the knee pain. It feels very like a muscle or tendon strain, and if it wasn't for the temperature and colouration anomalies, and the clear MRI, and the time it's lasted, I'd be quite sure that's what it is. (It gets inflamed sometimes too, but that could happen in either case.) It seems like I only need to avoid putting any strain on it at all for maybe 3 or 4 days and it would get better -- it has done in the past, in the short term, before "going" again -- but it's very difficult to reach that level of inactivity, living alone, and it seems to take less and less to set it off.

That's probably enough for now. I'd be particularly interested in hearing from people with similar symptoms, and those who have strong views on whether I probably do or don't have RSD/CRPS, but any comments will be welcome. Thanks for reading this far.

Hey Robin,

Just wanted to say I am from your side of the pond! I live in SE UK. My gosh, someone within 500 miles of me!! Sorry you have to be here!!

Love

frogga xxxxxxxx

Hi frogga, nice to meet you! Maybe we'll be able to help each other out with UK-specific information from time to time. Not that I know much just now. And I'm sort of hoping I don't have to learn too much!

Not sure if...
 

Hi Rogue, I was advised I could just copy (Ctrl-C) and paste (Ctrl-V) my intro from there to here, and that's what I did.

Hi. I am Lisa and I am new here. I developed RSD in my left leg two years ago and it went away after eight lumbar sympathetic blocks. In September of this year, I began seeing my orthopaedic surgeon who has performed surgery on both of my knees since 2003. I had twisted my right knee in late July and the pain was not going away. I was reluctant to see my ortho as he had previously informed me that eventually I would need total knee replacements. I have been using a crutch (sometimes two) since October. My ortho put me through tests, physical therapy, more tests and steroid injections. In January he referred me to the pain center and suggested I had RSD again. I was floored! I didn't know that RSD could come back and that it could be on a different part of the body. And if he knew, why did wait so long to fill me in? Sure enough, RSD again. This time it is much worse for me. Ten blocks and no break in the cycle. I just had RF ablation on Wednesday and my pain is worse. I have a supportive family (as best as they can be). I feel rotten about what they have to go through because of me. I can't tell them how bad things really are, I don't see how they could handle that when I can't really handle it. My mom is great and is my best friend, so I try to protect her. My husband sometimes suggests that I try to "blow it off" (regarding the pain), so I don't tell him that the pain is so bad that when I am in bed I am begging to fall asleep and that when I wake up, I am severely disappointed because I realize that I have to live another day like this. That is very selfish of me, I know. I feel so two-faced, giving them my fake smiles all of the time and holding back my tears until I am in the shower.

After reading all of your stories, I feel like I am just a big baby for acting and thinking this way, considering what you all have endured. I also have bipolar which for the most part is well-controlled on meds, but sometimes it feels like the depression wants to take over. How do you all do it?

We started the intros on most of the conditions forums first - but as the site grew there were many new members joining that were new to forums and not sure where to post first so we made the Main Intro forum for new members.

You can copy your first post to here, or make a new one, or just put a link to your first intro post, which ever way you like.

Or I can copy/paste it here for you, just send me a PM if you want me to do that.

ok, moving intro
 

"newbie"
 

hello, my name is jennifer and i was diagnosed with rsd to right shoulder, arm and hand just 4 wks. ago. My initial injury occurred 3 yrs. ago. I got hurt on the job and tore my right rotator cuff. I had surgery 10/04. after surgery i developed a frozen shoulder and needed a second surgery to remove excess scar tissue but because it was a work comp injury it wasn't approved for nearly a year. had second surgery 12/05. after second surgery i never regained strength and was never pain free. complained about it all the time but basically was blown off by docs. finally, about a month ago i had a severe attack of pain. it felt like someone was crushing my arm and holding it in a fire and i noticed mottling to the back of my arm. my doctor took one look at my arm at diagnosed with my rsd. unfortunately, my disability benefits had already ended. soooooo, my ortho doc referred my to pm and i have been paying everything out of pocket until i can get my benefits reinstated. i am currently taking, zanaflex 2mg bid, neurontin 300mg qid, elavil 10mg at bedtime, clonodine patch, lunesta for insomnia, and oxycodone for breakthrough pain. i also take a buttload of vitamins and supplements that i swear help me just as much as meds. i also have a tens unit that i use. i had a stellate ganglion block almost two weeks ago that didn't do a thing except cost me $312! That was one of the most painful things i have ever experienced in my life! anyway, that's my story and unfortunately i have to stick to it:cool: hope to hear from any of you soon, jennifer

Glad to find you all
 

So nice to meet all of you, I've learned so much already just snooping around in here. I'm Jeanne, formally diagnosed with RSD in both hands Fall 2006.
Hindsight being 20/20 I think this has been going on longer than that.
In the beginning of 2005 started getting alot of pain and weakness in the hands, went through the joys of electrocution and Ortho diagnosed me with Carpal Tunnel Syndrome. He wanted to operate then but it wasn't in my dayplanner for 2005 so I opted trying to put it off as long as possible.
I had injections in both hands to reduce the swelling on my hands (this is where the hindsight comes in) the shots would render me useless for a few days. It felt like they were broken and soooo sensitive to touch. I have also learned since then how to properly communicate with doctors and really express my pain because when I told him they hurt he said some people have more pain than others. I thought it was just part of the process.
I used to have such a high tolerance to pain, had all 4 of my children naturally, never took days off from work...seriously I chopped wood when I was 9 months pregnant :)
Last summer I just couldn't take it anymore, my hands were turning into the human claw so gave into the surgery. I had carpal tunnel release on both hands, two weeks apart. Did OK for about a month and then the rest is history. What was supposed to be 2 months off from work has turned into Long Term Disability :( My physical therapist is the one that actually first mentioned RSD to me. Since then I've been to 2 Ortho doctors, 2 neurologists and my PM doctor (who's the best of the bunch).
I started seeing the PM doctor in January of this year and he gave me my first stellate ganglion block at my first appointment with him. He has always been aggressive with his therapy and talked about SCS from the start.
I had 2 blocks withing a few days of each other and absolutely no pain relief. When I had the second block my arms got really mad and fought back, terrible aching pain and ice cold. I was put on blood pressure medicine to help with the temperature and we decided no more blocks.
Febuary it spread to both feet, they had been getting numb for a couple of months but the burning and aching pain literally happened overnight. So I was sent for more tests to make sure we weren't chalking everything up to RSD. That's when I was told Cold RSD and SCS was off my list of options.
I'm very stubborn with this little monster inside of me. I try to take short walks daily and have upped my visits with my therapist, but this is such an isolating illness. The Spoon Story was so simple but so true.
I'm trying really hard to find a way to accept this and fight it at the same time....to have RSD be a part of me without it defining me.
So thank you all for being here and sharing your experience, strength and hope....it helps me more than words could ever explain.
Jeanne

If you don't mind...I have questions for you...
 

Do you experience any edema, white waxy skin or abnormal hair or nail growth??