Hi Quackingmoose and Welcome to Neurotalk - it is great to have you here and you will meet many great people who I am sure will be more than happy to help you in anyway they possibly can!!!

I'm SO sorry to hear that your BF suffers from RSD also! I really hope that things start getting better for him real soon and you are both in my thoughts.

I also suffer from RSD. It currently affects both arms and my left leg. I developed it when I was just 12 years old after I fell and sprained my ankle and am now 14. I have tried all sorts of medications and procedures and none have really worked that well for me. I am now on Ketamine as a last resort but my doctor doesn't like me taking it as he feels it could mess up my hormones because of my age etc.

I cant imagine how hard it must be for you as a Caregiver to have to watch your BF go through all of this and not be able to help and make him better - it must be the hardest thing in the World ! My mum is my caregiver and I honestly dont know what I would do without her, she has helped me through a lot of the rough times and has been the only person in my family that has really supported me 100% through all of this. She posts on the forum sometimes when I am unable to so if you would like me to get her to PM you, please let me know as i'm sure she will be happy to as she understands a lot of the things you are having to deal with as well!!!!

I give you a lot of credit for sticking by your BF and trying to support him - I know its hard and it takes a strong person to do that!! Please dont ever be afraid to let your emotions out - I think sometimes people forget that RSD affects the whole family, not just the person suffering and it's important that you vent all of your feelings. We have a Caregivers section on the forum so please feel free to post there should you wish as it's important that YOU get support also!!!!

I'm sorry to hear that PT isn't working for your BF. I can relate. PT didn't help me at first, then it started helping a bit and I was able to walk where as before I was wheelchair bound but didn't cure the pain and it isn't workling at all for me now. We are looking at other options to try as a last resort and I think we will probably try Botox as I have severe Dystonia's (movement disorder). Please tell your BF to keep moving as much as possible though - I KNOW it is really painful, trust me, I do but it is probably the one thing that will help in the long run - even if it doesn't feel like it now!!! My Doctor always says that we either have to use our RSD limbs as much as possible or loose them and it's true!!!!

I have been on Lyrica also. I didn't help me and I put about 25lbs on whilst on it so eventually, we decided that it was best if I come off it. I really hope that it helps your BF and that he gets some much needed pain relief!!! Everyone is different when it comes to dealing with this condition so it makes it hard for doctors to determine what will work and what wont unfortunately.

Take care and I hope to see you around the forum more soon!!! If you need anything, please dont be afraid to ask because I DO understand some of what you are going through unfortunately!!

I hope things start getting better for you soon and please dont give up hope!

Alison

I was diagnosed with rsd 3 1/2 years ago in my left arm. After 2 very painful years I slowly went into remission and was feeling great. I just had very minor surgery on my foot and I have a feeling it came back. I have very painful burning on my foot, but the opposite side of where they operated on. I think my doctor thinks I am crazy because he says I am not suppose to have any pain. I am going to wait a few days but my foot is so sensitive that I can't even walk on it. Has this happened to anyone else? the pain is so intense.

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.[/QUOTE]

I'm sure you've heard this before...but I have to tell you I am impressed by your tenacity. I feel for you and I will keep you in my prayers. I just found out my son (21) has rsd. It is very hard watching him change. You give me hope and I wish you the best. How is your mom?

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 now 23. In that time it has spread full body and I have developed secondary generalised dystonia as well as HMS etc. I am now a quadriplegic and have occasional chest spasms, a lot of dystonic storms, have gone into status dystonicus several times. I have am in my third year at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 4 cats and a dog at home and unfortunately none at uni. I used to be very musical but now prefer hanging out with my friends or reading. I have an amazing boyfriend called James who is always there for me, is studying Chemical Engineering and is just generally awesome.

Take care and pain free hugs!

Rosie xxxxxxxxxxxxxx (a.k.a Frogga)

I have apparently had HMS (and apparently, according to my neurologist, dystonia) for most of my life but I wasn't really affected by it - my joints hurt if I did too much and I had 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 pianist, 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 visiting my grandma she took 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 a collar and cuff and told me to rest it. I went back to school (crying in the car - the vibration from the car hurting so much) and tried to get on with my life. The alloydinia was so bad that I couldn't keep any material or clothes touching my arm, nor bed sheets, blankets, water or anything, wind made me cry. The pain moved up into my right shoulder and I had no movement from my right shoulder down and my right hand was clasped in a fist, my wrist twisted down and my arm held tight against my chest. 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 that’s 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. And so I 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 physiotherapy, 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 physiotherapy 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 doctors 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. The doctors decided to give me a pemidronate infusion to try and help with the pain but it didn’t work.

I got discharged from hospital in March 2002, 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. 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 physiotherapy everyday, seeing the physiotherapists 3x a week, the OT's 3x a week and just trying to get some function back in my arm and leg.

This continued into the end of April, when a "friend" broke my left wrist by dropping something on it (by accident admittedly - but I’m still cross about it). The break was lightly plastered because of the RSD in my right side and I had to hop everywhere on my left leg because I couldn't use a crutch until I asked the physiotherapist 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. I sat my GCSE's in hospital and continued with the physiotherapy. So, it was May, and I now couldn't walk, could barely use my arms or do anything. Then came several months of being hospitalised whilst I did physiotherapy, had OT and tried new drugs whilst the doctors tried to get control of my pain and get the circulation back into my limbs, reduce the alloydinia so I could bear having my body touching anything.

My dr’s 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 so the RSD had gone into all limbs. 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 sixth form college (high school) on a full time course. I came out of hospital just able to use crutches to drag myself 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 physiotherapy, all the desensitisation etc and the fatigue was so awful I was lucky to manage 5 hours a week at college.

In November 2002 my physiotherapist 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 into a contracture. Unfortunately that was my "better" foot. From then on I started to get really bad muscle spasms, dystonic postures and contractures and found my muscles stopped responding how they should have.

I spent the rest of 2002 and 2003 in and out of hospital, trying new meds, new drs, new treatments, HBOT, blocks, infusions, physiotherapy, OT, hydro. I got assessed for and given new wheelchairs, started to have adaptations done to the house. I started having huge amounts of burning in my butt and spine.

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 quality 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 September 2003 and attempted full time (a mistake as I only managed about 30% attendance) and managed to complete the year with ACC at AS level. I went on to do another year at college (part time) and found a boyfriend who I pretty much lived with. He accepted me for who I was and what I could and couldn’t do (I could feed myself, dress myself with help, drive etc 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 and I had started getting twisting spasms and tremors and myoclonus. Although I had developed a better attitude towards the pain and realised that I had to get on with my life, and was still doing the physiotherapy 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 didn’t work. I got engaged to Jay and then broke up with him, realising that firstly I didn’t want this level of commitment and secondly it wasn't fair on him to spend his life with someone needing to be looked after all the time.

I got referred to a neurologist in October 2005 after the spasms dislocated both my thumbs. This had been happening regularly and had ended up with spasms where I 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 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 couldn’t open my mouth or hold my head up. Apparently the jump had caused me to develop orimandible 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 couldn’t 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 prestigious college to study psychology.

So now (in 2007), 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, dihydrocodeine, 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 of my feet are inverted and twist over each other whilst 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 shoulders aren’t much better. The botox has helped my right hand a bit 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.

Update: Jan 2009. I can’t believe I have now had RSD for 7 years.. it’s so scary. The pain has really spread into my back and it is really burning, in fact my whole body is. I’ve started getting lots of full body spasms and my jaw keeps locking and then unlocking. After a really awful dystonic storm my arms went from being locked out straight to bending up and across my chest so I was totally unable to operate my wheelchair, type or drive. I got my new wheelchair accessible van which is awesome – it’s a Chrysler Grand Voyager and means I can go out. I am in my third year at university and am now on placement working as a mental health officer at Wiltshire county council – I really enjoy the work and they are really good about giving me the opportunity to work from home and giving me time off when I’m not well etc. I have awful dystonic storms 3 or 4 times a week, especially at night, and I also faint from pain a couple of times a week. My friends know I hate hospitals so they deal with almost everything (along with my live in carers). I ended up going into status dystonicus in December 2008 and ended up in hospital. My arms ended up moving from up across my chest (near my neck) to down under my breasts. The pressure they put on my chest is agony and bruises both my chest and arms. I am also having huge jaw problems with eating. My chest has started to go into spasm and that makes my lips go blue and my face go grey when it happens. The dystonia also affects my face and eyes which can be embarrassing.. I am so blessed to have the most amazing friends anyone can have and also an awesome boyfriend who is there for me every step of the way. He has been there when I’ve been fitting, he doesn’t mind feeding or dressing me or taking me to the toilet and still thinks that he’s lucky that I’ll date him!! ROFLMAO! He is studying chemical engineering and is called James and is gorgeous and just generally lovely. We’ve been together for the last 14 months and he has practically moved in.

I still take loads of meds and my pain is still not under control, I’m on oramorph, ketamine, dihydrocodeine, tramadol, baclofen, diazepam, ibuprofen, paraceptemol and domperidone. It still feels like burning, stabbing, screaming, exploding, deep aching, throbbing, whipping, lashing, clicking, all consuming pain.

It’s strange... the one thing I find is that the more the RSD and dystonia destroy my body the stronger it makes me against it. Sometimes it feels like the pain is going to destroy me but yet.. I think I’ve made it through agony and more agony than people that don’t have RSD can possibly ever understand, where nothing can control the pain and that’s given me the strength to keep fighting this thing, even when things get to a point when I feel I’m going to give up. Sometimes I get really down with this, I feel that it’s not fair and it’s destroyed my life… and that it’s not fair that my “normal” friends can go out on their own, live on their own, have freedom let alone feed themselves, stand up and walk or be pain free.. I sometimes wander what it would be like to be pain free, to walk outside in the sun holding James (my boyfriend’s) hand, or to be able to go out dancing with my friends. I wish I could concentrate better on my work as the pain just destroys any concentration I could possibly have! Does anyone else ever wander what their life would be like if they hadn’t got RSD? I mean, I discovered several months ago that my neurologist thinks I would have got the dystonia anyway – but at least that would have been less painful! And I think less debilitating than the two disorders together (as well as all the other stuff). But, would I have made it to medical school? Would I have qualified now, like some of my friends? Maybe, but… Would I be the person that I have become? Somehow, I don’t think so.

Much love and pain free hugs to you all

Rosie xxxxxx

I just found this forum tonight and boy, do I need help. I got RSD in 1992 after tripping over a step in a sidewalk. Luckily I was diagnosed in a few weeks and was even in remission for about 6 months, then fell in my yard and activated it again. My primary RSD site is my left ankle and foot but about 1 1/2 weeks ago I tripped going up the steps from my porch (I guess I'm really graceful ).

Anyway, I cracked a toe on my right foot and now I'm getting RSD symptoms there. My new Dr. know a lot about RSD and she said to keep her informed about what is happening.

I guess I'm just going into depression (more than usual) because I know what is going on.

I'm glad I found y'all.

djheadley

Welcome!!! I, too, am so glad you found us.....but am sorry for you that you need us. This is an awesome forum with many knowledgeable, caring people. I think you'll find that you have found a second family here....we're all related in the aspect that we are familiar with the pain, fear, suffering, and depression of having an incurable disease.

I am glad that your doctor seems to know about RSD. So many of them out there have never even heard of it, much less treated it. Are you currently on any meds that are helping to calm down the sympathetic nervous system or for pain???

I, too, am very accident prone. I've fallen down my stairs more times than I can count and slipped in the tub last spring and broke some ribs. Go figure that none of those accidents caused my RSD......it was "simple" ankle surgery I had in December. My RSD has already spread to my other foot (in less than two months) despite no additional injury, so it can spread on its own without any precipitating factor.

I have found a WEALTH of information on this forum and respect the member's personal experiences living with RSD as much as the other information I have found on the internet. I think both have their place in my decisions on how to proceed with my treatment.

Under the top section, you'll find a "new thread" button. You can post a new thread asking any question you may have or "search" the forum for any topic you might be curious about that have already been posted. We are all here for you and welcome your questions, concerns, and input!! Please take care!!! Hope to hear from you soon!!!

Thank you so much for sharing your story

Excerpt from Frogga's intro.: [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.]

******

Wow Frogga, that is some story. I read every word: it's poignant, and you tell it so eloquently. You must be a very strong girl. I don't know that I was ever that strong, but certainly I know I wasn't at age 21. You are special.

Please keep telling your story. It speaks of horrible pain, but of hope for having a life despite the pain. That is what I strive for, and try to speak about. I too have RSD, have had it for 15 years. I have started a blog (I know, so has everyone else) to try to help people who haven't found the peace in their pain that you have. Not to say we're Pollyannas, I'm sure you have your bad days, I know I do, but we try to move forward anyway. That's what it's all about (and good for your mum for instilling that in you), moving forward - even if you take baby steps, keep moving forward. Or else you get stuck looking backwards at all the things that you CAN'T do, instead of focusing on what you CAN do.

Anyway, I'm very impressed.**. I SO want to help even just one person not sink into the depression that I did.

I hope to hear from you,

Judy

Welcome Judy. I have RSD for almost 15 years too. Where can we read your blog?

Frogga --- I dont know when you posted your story but it was the most disheartening thing I have ever read. I cannot believe the torturous pain you must be enduring! I am so sorry for what you are going through. It sounds like you have the worst case of RSD/CRPS that I have ever heard about! But I am so impressed with your positive attitude. It makes me feel like I have no problems at all compared to what you must be enduring every single minute... I am truly sorry about what you have to go through! But you have a great attitude. And you are strong! You are an inspiration to me. You had the courage and strength to continue living, going to school, making friends and it is so encouraging.
Hang in there! I hope you continue to get better.
Hugs!
Lauri