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Old 01-09-2007, 11:41 AM   #1
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Old 01-09-2007, 11:45 AM   #2
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Confused 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.
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Old 01-09-2007, 12:50 PM   #3
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Default My story and introduction


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.
It's always darkest just before dawn... but smile and the world smiles with you, cry and you cry alone
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Old 01-09-2007, 01:48 PM   #4
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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.


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Old 01-10-2007, 01:01 AM   #5
Denise G
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Default 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! ).

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?

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!

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Old 01-10-2007, 01:05 AM   #6
Denise G
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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!

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Old 01-10-2007, 01:20 AM   #7
Denise G
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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,

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Old 01-12-2007, 05:26 PM   #8
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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:

Last edited by septmystic; 01-12-2007 at 05:33 PM. Reason: ooopsies
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Old 01-17-2007, 01:03 PM   #9
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My name is Diane, I have been diagnosed with RSD since 2/2002. I fell in the parking lot at work and broke both the tib/fib 2" above my ankle in my left leg. I had surgery to repair the damage-2 plates, 19 screws. 1 screw was thru both bones as the tendon that holds the bones over the joint was compromised. I had another surgery 3 months later to remove that 1 screw, then in Oct 2002, they took the remaining hardware out thinking that would resolve the pain. Guess what.. it didnt!

I was finally diagnosed with RSD and have been trying to find a way to live with it and work with it. It has been increasingly more difficult to work the 40 hours I am restricted to. No ot no weekends.
My medicine regime has constantly changed to try to control the pain. So far, it is from my mid calf down to the tips of my toes. I believe it is beginning to crawl up my leg to my knee as I have burning pain more prevelant at night in that area now.

Luckily, I have had wonderful QRC's and doctors. I was diagnosed about a year and half after the accident. I am looking foward to participating in this chat area for both support, laughs, direction, and anything else anyone can provide that will help living with this much easier.

My family doesnt quite understand. My grown children are concerned about the amount of medicine I am taking, but my oldest son (28) attended my last doc appt and seemed satisfied with what he heard. (He lives in Italy and was finally home for a visit so he was able to go with me finally). My youngest son (25) still gives me some grief about the meds. It is difficult to explain this to someone that loves you and hates to see you like this. Hopefully one day, my youngest will be able to go to the doc with me as he is my emeregency contact should anything happen too me. My mom, well, she hears news stories about the meds I am on and calls me thinking that I am going to die any day if I dont get off these meds--but somehow I seem to calm her down letting her know that I try to keep on top of all the medical information about this as I can.

I am looking forward to gaining more info and sharing what I know if I can.:icon_wink:
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Old 01-19-2007, 02:38 PM   #10
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Location: WNY
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Book 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.


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