hey fishnchef i live in nashville have had rsd for 11 yrs now how ya feel i dnt have workmans comp but had to go through 5 yrs of legal to get a tiny bit of money from the car accident that caused my rsd in 98. also i have 2 young children two girls 8 and 5 i know what you are feeling both my girls only know me as sick it really hasnt made their life any differnt except maybe a couiple more chores here and there. kids are pretty rezliant to sickness. fyi there is a great pain managment doc at vanderbilt in nashville that i see he used to work at the va he isa neurologist and pain managment very through very smart and very up to date on treatments he is on a couple boards for pain managment and rsd treatment ..
i ahve had every treatment know to man except ketamine .. i know have a morphine pump that has fentnly in it due to the fact that i am very deathly allergic to morphine .. i would keep the pt up.. for pt i use the kids try to stay as active as you can be .. i does help trust me.. im am gald that you found this site. so sorry that you are having a hard of things.. so sorry that you had suffer from this horrible diease


welcome

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!!!

Hi everyone,
I'm Jenny and I'm here because my husband was injured on Jan 8 of this year by an accidental gunshot wound. The bullet seems to have hit his sciatic nerve up high in the leg and he has been experiencing severe pain in his foot ever since. This morning we finally saw a neurologist who diagnosed causalgia. I had never heard of RSD or CRPS until this morning and I've been on the internet all day reading stories like yours. My gosh, I am amazed that some of you have been dealing with this for decades! It has been just less than a month for us and it's already seemed an eternity.

This accident happened one day before my husband's last day of work at his full time job, which he was leaving to pursue is dream of joining me full time on our small family farm. He has been on crutches ever since and the pain is so bad when he stands up that he can only be out of bed for a few minutes. I have been caring for all the livestock and our two young kids who are homeschooled in addition to all the housework, taxes, bills, etc.

He has just started gabapentin and we have an appt. with the pain clinic on Wednesday. Is there anyone here from the Albuquerque area who can recommend a Dr?

I am terrified not just by the pain component of this but also the depression. He was already suffering from bad depression before this happened. We were hoping that getting him home on the farm full time would help this. Now he is facing the possibility of never ending chronic pain and doctor visits, which he hates, and not being able to do anything on the farm, not to mention the financial stress this will cause.

One good thing is that he has been getting regular massage therapy since the first week of the accident. He is trying to bear weight on the foot and the massage therapist is able to do a lot of good stretches and work out the cramping he gets in his calf.

I'm glad to have found you. I'll start by asking if you have any advice for our pain clinic appointment on Wednesday.

And please know that I believe you when you say how painful this is!

Thanks,
Jenny

Hello and Welcome to Neurotalk Jenny - I am SO glad you found us, everyone here is so nice and friendly and I am sure will be more than happy to help you in anyway they possibly can!!

I'm so sorry to hear that your husband has been diagnosed with RSD/CRPS! I have RSD in my left leg and right arm, I developed it when I was 12 years old and am now 14!!

The "lucky" thing for your husband is that he has been diagnosed VERY quickly - unfortunately, it can take a lot longer for some people to be diagnosed and some people are left to suffer in excrutiating pain for years without a diagnosis and by that time, it is too late to do anything for them! It is extremely important that RSD is caught and treated very quickly - Doctors say that the best chance of reaching remission is if the RSD is caught within 3 months so please take that to heart!!

I wish you and your husband the very best of luck with his upcoming appointment and really hope you can get some much needed help! Please don't be afraid to ask your husbands doctor ANY questions that you have ... it is really important that you know what to expect and don't ever be afraid to ask anything, no question is a bad one!! Also, don't let your husbands doctor do anything that you aren't happy with - it is REALLY important that your husband makes his mind up as to whether he wants to go ahead with a certain procedure and no-one can force him into doing anything!!

Please make sure your husband moves his foot and leg - I KNOW it hurts a lot as I have been there but it is probably the one thing that will help in the long-run! I have another neurological condition called Dystonia on top of the RSD which means I can't move my leg at all and it makes any Physical Therapy extremely difficult!! Also, please tell your husband to touch his foot and leg so that it doesn't become too hypersensitive - if it is already hypersensitive, start by touching it really gently with a nice, soft material and then build it up as and when he feels as though he can tolerate it better!!

As for the Depression, unfortunately a lot of people with RSD suffer from it as they are frustrated that they can't do what they want to do etc etc. I was VERY depressed a few months ago and felt like life wasn't worth living and it was extremely difficult to try and overcome it!!!! I see a Psychologist and she has helped me quite a lot ... that's not to say I still don't feel depressed and angry, I do but I have "learnt" to try and deal with it better through exercises that she has given me!!

If you ever need someone to talk to, please know that I am here for you both!

Please keep us all updated when you can and im sending your hubby many pain-free hugs!!

Alison.

Oh Jenny,
I am so very sorry to hear of your husband's accident. It is VERY good that he has been diagnosed so quickly, and I think it is an extremely encouraging sign that he is able to put weight on the foot so soon and is already working with a PT to stretch the leg.

I developed RSD in my left ankle after surgery on Dec. 3 '08, so I haven't had it very long myself. I have already had a series of sympathetic nerve blocks and the swelling is under control. I do have nerve damage in my left foot from the surgery, and the RSD has spread to my other foot, but I am not experiencing as much pain in the right foot as the left. I credit this to early treatment, just as your husband is getting. I can walk slowly, without a limp, and am able to get most of my chores done.....maybe not perfectly like I used to......but well enough.

Ali is exactly right about desensitizing the foot and leg. He needs to remember that even though it HURTS like fire (or glass or whatever) is being rubbed into him to touch it, that it is just the nerves misfiring and sending false signals to his brain. The more quickly he can desensitize it to get used to being touched and used, the more mobility he will retain in the long run and the more quickly this can happen.

Regarding the depression, he absolutely needs to be put on a good antidepressant if he's not already on one. First, some antidepressants are proven useful in treating depression AND pain in RSD. Second, lingering depression will only further discourage him from doing his PT and moving on with his new life. Chronic pain and loss of function IS depressing.....he didn't choose this nor did he do anything wrong to get RSD.......it just happened.......it is not his fault.

Every one of us here has had to adjust to the various changes that RSD has imposed upon us. It is so good that you found this forum, as there are many caring, supportive, and knowledgeable people here to offer support or guidance. Better still, this is a safe place where you can get a lot of understanding and compassion.....we all know how this feels.

Please feel free to post any new questions on the general forum that you may have. It is so wonderful that he has you to be so supportive of him. You BOTH need support to adjust to this diagnosis, especially since you have had to take over so many of the other responsibilities. Try to remember that you guys WILL be ok. It may alter how you go forward in your immediate life, but many people with RSD and on this forum still manage to lead productive, happy lives......perhaps just in a slightly different way than planned.

Try not to look too far into the future, but take it one day at a time. Our greatest hope is that your husband responds quickly and positively to treatment. Please remember to take care of yourself as well. You must be forgiving of yourself and your personal limitations right now......accept help from people that offer (is there family around you??).....get as much rest as you can in between tasks.....you have to regroup your priorities realistically and remember that you're just one person.....you can't do everything perfectly as though you were two.

Regarding specialists......there really are none in the area of RSD, although there may be doctors that are familiar with treating it. A good Pain Doc that has been successful treating RSD in the past is critical. If yours isn't, be willing to travel some to get one that is. You already mentioned that he has seen a neurologist and a PT. It sounds like you guys are doing all the right things! Be careful not to read too far into the disease and "project" all of that happening to him in the future. That is overwhelming and depressing. Simply accepting where you are now is struggle enough.

Please keep us posted on how his visit tomorrow goes. Ask any questions you want to.....spend some time reading other posts on this forum. You can do a "search" on a specific topic you may be interested in (option available on the blue bar at the top). We are all here for you!!! Hope to hear from you soon!

Hello everyone… My name is Jacquelina… I have RSD and TOS…. I was diagnosed around 2 years ago for the TOS… I was in constant pain with the TOS for almost 7 years.. Only took them long enough to diagnosis it… Following that I started having swelling and skin color changed., flowed by sweating profusely…. 3 months after my TOS dx came the RSD one.. I was dx with Bilateral TOS and RSD on the right side…

I cant tell which symptoms belong to what condition … The worst one or at least as of lately:

-I am having swelling that starts from elbow up to the shoulder… Like 4x normal size.. And the bottom half of my arm from the elbow down is just white..
-swelling
-hot all the time/ with just the tips of my finger swelling.. And very cold..
-skin hot to the touch
-Molted skin changes
-Depression
-Trouble holding and writing things
-Pain levels in the high 9-10 for the last month..
-Pain from the surgical site
-Under neither my armpit is so sensitive I can barley stand to put deodorant on … and most days I don’t because of pain..
-this is one of the most painful parts…
-I will have episodes where my hand will cramp up so tight I can get it on done..
-Fire feeling in my arm of course…
-Intense burning numb pain … sometimes it feels like I am sticking my hands in glass….

Those are the symptoms I can think of right now… As for things I have tried.. I have had 4 blocks with relief for only a few hours… I have had a right rib resection with removal of part of the scalene muscle.. No relife from that what so ever.. Actually made things worst for me I think…The surgery its self was very painful and with the high tolerance to meds that didn’t help the pain at all.. I have had 3 keatmine injections… I have tried 8 different types of physical therapy and have swore to my pain doctor I will never have PT done again.. My god is it painful and ineffective… NEVER EVER AGAIN WITH THAT LOL… unless I go forth with the possible 2 rib resection on the other side then I will do pt for that part I guess..

Right now I am currently on the following meds::
Percocet 6 daily
Opana 60 mg
Topmax
Neroutin 1600 mgs a day
Hydroxine
Levythorixine
Flexiral
Allergy meds
Volatar gel
Cymbalta
Blood pressure meds Metropol
And vitamins… Milk thistle, vitamin E, calcium, flax seed, olive leaf, lysine, Fish oil, and some other ones… *** but may I suggest that all of us start taking the milk thistle.. It is great great great for your liver.. And with the medications we are all on we for sure could use something to help clear that out… I don’t know how exactly it works but my doc suggested it..

Wow Jacquelina, you are on a LOT of meds.....some in the same family. I am SO sorry for all of your pain and problems. It sounds like things have just gone from bad to worse with you. Do they suspect that the TOS (which I had to look up and am pretty sure you're not referencing "terms of service"!!) caused the RSD??? Or the surgeries you've had to try to repair it??

Have you tried a SCS??? The key to proper PT in an RSD patient is getting good pain relief BEFORE attempting PT so that you can improve your ROM and strength. You can't get a limb moving if you're guarding it from the intense pain. Was your PT experienced working with RSD??? Otherwise, you're just going to exacerbate the RSD (which I should call CRPS, but I'm lazy and RSD only requires capping and typing with my left hand!!).

Have you been to the sister forum on Neurotalk for TOS??? I think that all of your symptoms could be the RSD.....they all match what many of us experience here......I am just so sorry that you're so disabled by your pain/condition.

Thank you so much for telling us your story (to us newbies who may not have known you before). Please keep in touch and posted on your progress. I hope that they will find a different medicinal approach that can help you regain more of your life. Best wishes!! Please post any time in the general RSD forum about anything that may be of concern to you. We are all here to help each other out.

I feel for you guys but please tell me how this got so far out of hand ...Here is my story ..had shoulder surgery on nov.18 09 never got rid of the pain on cut they made on top of it first doc kept telling me its find this is normal,so with no help from him after giving me sleeping pills,pain pills,creams,and any thing his PA could find I went to a new doc it was hard to find one that wasnt in with the same company but when I did she took up look at me and sent me to her pain management,got my first block and got some releaf go for 2 more in the next 2 weeks I am hoping for a cure with the shotsBut after reading the hell you guys have been in for most of your life I'm not so sure,Is it because it was not coute in time or what,now I'm not sure if I should get the block or not someone please tell me how long you had this before a doc did anything for your pain......?????