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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 |
Story update... it won't let me edit my old one.. so sorry...
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'm new here but not new to RSD
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 :thud: ).
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 |
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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!!! |
I'm terrified
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:hug:! 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!:hug: 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. Quote:
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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! |
Jacquelina new-old member lol
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. |
help
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......?????
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Hello Sue and Welcome to NeuroTalk - you will meet many great people here who will be more than happy to help you in any way they possibly can!!
I'm so sorry to hear about everything that you have been through and really hope you get some much-needed pain relief real soon!!:hug: Please don't EVER give up hope - there is always hope and it seems as though you are still at the begginning of dealing with this awful disease? Doctors usually say that RSD is best caught and diagnosed within 3 months as that is the best chance of getting your RSD into remission! Unfortunately, there isn't any cure for RSD at the moment however there IS medications to try and help reduce the pain and other symptoms!! I have RSD in my left leg and right arm - I developed it when I was 12 years old and am now 14. It took me 4 and a half months to get diagnosed and treated which was pretty "good" compared to some as some people are left to suffer in awful pain for years on end! Before I was diagnosed, I was having Physical Therapy although it wasn't helping at all as the PT's didn't know anything about RSD and thought that I was just faking the problems for attention - why would I do that?!?!?! When I was diagnosed with RSD, my Pain Management Doctor immediately did a Guanethidine Nerve Block and it didn't help me at all and I was left wheelchair bound for over a year!:eek: Unfortunately, when my Doctor did the nerve block, he didn't realise that you should NEVER inject directly into an RSD limb unless you absolutely have to and it was only when the complications started happening that my mum found an article on the internet about it so by that time, it was too late unfortunately! MANY people have had relief from the nerve blocks though and it is different for everyone - no two people are the same when dealing with this illness unfortunately so it really is a matter of trial and error! I would suggest that you do a lot of research before going ahead with anything though and to weigh up the benefits and side effects and speak to people that have had that paticular procedure done before! If you need anything, please know that I am here for you because I DO understand what you're going through and how painful and frustrating it is!! I hope you get some much-needed pain relief real soon and am keeping you in my thoughts and prayers!! Alison. Quote:
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Hi there
Hi there, I'd just like to introduce myself...I'm already friends with Ali ;)
I am not going to write my whole story just now, maybe I will one day-maybe not. You all know how it is already anyway. I'm 23 years old and I live in Christchurch, New Zealand, when I'm not studying in Dunedin at Otago University. I've had CRPS/RSD (what ever you call it doesn't make it any easier) in my right leg and foot since March 2006 but was only diagnosed to my face with it in May last year. I missed one step and landed hard on the next one, I didn't even fall over but I managed to mess my hip quite badly and also my foot. Took a few months to get a doctor to believe that I had hurt my hip even though I could barely walk and finally when we did find someone we discovered that I had done so much damage I needed pretty major surgery to try fix it. I've had a series of accidents since then mostly involving complex concussions (and one scaphoid fracture), I do not mix well with stairs and my balance and centre of gravity are shocking. One fall even took me out of a whole 8 months of uni. I had the surgery on my hip which has been amazing as now I can walk quite well again as before the surgery I could barely walk at all. At that time my surgeon was confident that all the problems with my foot were 'my body's way of dealing with the pain in my hip' and that surgery would fix everything-how I wish that was true-I often think he was trying to pretend to himself as much as me because he knew. I have continuing problems with the head injuries too but have never given up on my dream. I got through a very competitive pre-med year getting grades good enough for physio (PT) school (all the health science professional wanna be's do a combined first year) so now I'm a couple of weeks away from starting my 3nd year, having passed all my 2nd year exams, not really believing that I have made it this far. I take the good with the bad, try and focus on the good as much as I can and I love helping people! Things don't always go to plan and I get pretty stressed sometimes and my grades are not as good as I wished they should be. But I am learning slowly that its an achievement in itself to be where I am and passing at all and above all to never give up on something you truly want with all your heart. I've just spent the summer doing an intense hydrotherapy program (been at the pool almost every day) and have made a lot of progress in terms of strength, endurance and function. I'm still in pain but I have been hardened some what to now be able to do quite a lot despite the pain. I still have bad days but I have a close network of friends who are always there to pick me up and get me back on track. Looking forward to meeting you all. Felicia |
Undiagnosed
First, I would like to thank everybody else for posting their stories. I've read lots of articles about CRPS, but this forum is much more informative.
About 2.5 years ago, I gave a blood sample at work. Unlike many other people posting in this forum, I did not feel a nerve being hit and the blood sampling was uneventful. However, within 2 hours, my whole right arm (from the elbow down) ached painfully. Later, I developed swelling at the sight of venipuncture and a large bruise about 2 inches from the site. Within a week, I had numbness, tingling, and weakness in my right arm. Since then, I've had cold sensitivity, temperature changes, mild color changes, occasional burning/electric pain, and mild swelling. Fast forward to 2 years later, and I wake up one day to notice that my right shoulder has dropped in elevation, so that it sits significantly lower than my left. After a few trips to the doctors/neurologist and several MRIs, I am told that the muscles in my shoulder and back are 'dystonic' (essentially the nerves are telling them to constantly contract). I am getting botox for my back and shoulder muscles, but am no longer on any treatment for my neuropathy (or possible CRPS). It is usually fairly mild, however I do have flair-ups which make work (i'm a molecular biologist) very hard. I am thinking of seeing a CRPS specialist, because not having a diagnosis while my symptoms seem to grow is very frustrating. |
welcome to all
my name is carrie i have had rsd for 11 yrs i am 27 years old and have full body rsd organ involment . welcome to our forum i hope that you guys jump right and ask any quetions that you guys have there are alot of great people here and alot of information goin around. i am so sorry that you any of us are goin through this hope we talk more carrie |
Newbie and question about cortisone injections
I was diagnosed 4 weeks ago with "probable" CRPS. I had a rotator cuff repair in July 08, 4 months after a work injury. After months of physical therapy, my pain kept increasing. My range of motion was also worse than before the surgery. I developed swelling in the collar bone area and the side of my neck along with radiating pain from my ear down to my elbow, a creepy-crawly feeling across the back of my shoulder and tingling in the fingers. My surgeon said he was not concerned about my pain that he was more concerned with my function(which I thought was odd because I went to him for pain...my function was not very limited before the surgery). At the urging of PT he sent me for a cervical mri and an emg. That showed slight herniation of c4c5 and that I had carpal tunnel and cubital tunnel syndrome so he sent me to a pain specialist for epidural injections. The pain specialist did not think the disc were significant enough to cause my pain and symptoms, examined me thoroughly and said he thought I may have CRPS due to my blotchy skin and weird symtoms. He started me on neurontin and refered me to a hand specialist for my hand symtoms. The hand specialist said he didn't think I had CRPS and gave me a cortisone injection for carpal tunnel. That was 4 days ago. Today I have a deep stabbing, burning type pain in the palm of my hand and can barely bend my fingers. Is this normal after a cortsone injection? Also my WC adjuster called a little while ago and said that I needed to go for an IME before he would approve any more treatments. He is setting up the appointment now. I guess the fun is just beginning. I don't want this to be CRPS. I am very greatful that someone is finally addressing my pain and hope that WC does not impeed any progress I may make with the PM Dr. Sorry for rambling I am just tired and frustrated.
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Hi Everyone,
Well let's see... Back in 1995 I was in a severe car accident where I went 1/2 way through the windshield.. I broke my left shoulder and collar bone, and my right collar bone and spiral broke my right arm.. The orthopod was paranoid about doing surgery to repair the spiral break (a rod and two pins) because if he "slipped" one way my arm would have been paralyzed, and if he slipped the other way, I would have bled to death before they could do anything.. Nice idea to have a doctor in charge that was so insecure about his skills.. So, after this, afew weeks went by and the RSD began in the bad arm.. Non-stop going to one doctor after another about my symptoms, I was finally diagnosed 4 years later.. At this point, the RSD has spread to both arms, down my right side and both legs, on top of having diabetic Poly Neuropothy...Being that there is no doctor in my area that I can find that has a clue about RSD, I feel like I'm just stuck with it... Years ago I had made an appointment in Philia to see Doctor Swartzman but needed to cancel it.. I'm now in search of a doctor that actually knows what RSD is and can treat it in the Scranton/Wilkes-Barre area of Rennsylvania... Anyway, Just wanted to say "Hi" to Everyone and hope you are all happy and full of hope for a cure or at least good enough treatment that you are all well :D |
howdy yall
Hi i am 31 yo from oklahoma. I have had rsd for about 6 years in my hand wrist and arm. it was a result from an work injury. I had to have major reconstructive surgery on my wrist as a result i developed rsd. I currently take lyrica, gabitril zanaflex, celebrex, tylox, kadian, cymbalta, trazodone and a cream with ketamin and some other stuff in it. well yall have a good day
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New With RSD
I just wrote a brief intro on the general site. This seems to be difficult for me.
I was diagnosed with RSD in June, 2009 after 5 months of pain and terror. I initially thought I had injured my right knee while working out. That was in February. In March I visited my internist who wrote orders for PT and gave me names of several physical therapists. I guess I had about 5 sessions and continued to get progressively worse. By this time I was using a cane and experiencing pain and loss of ROM in both knees. I got a referral to an orthopod who found nothing on the X-rays, gave me an NSAID, and a shot of steriod. I was barely able to walk to the car and wasn't able to drive again until September, 2009. I saw the same doc for a follow up and although he seemed to dismiss me as a lunatic whose complaints were just somatic in nature, I somehow persuaded him to order an MRI of both knees. The MRI was essetially normal with a bit of chondromalacia and some cysts. The guy was now truly convinced that there was nothing physically wrong with me. I continued to get worse. My knees felt like they were being eaten with acid from the inside out. The more pain I experienced, the less I moved. My muscles began to atrophy in a relatively short period of time. I once again I visited my internist (someone I have seen for years and who knows me to be one who is rarely ill). She took me seriously and after seeing many specialists, undergoing a plethora of tests and a hospitalization I was diagnosed with RSD. I was now almost bedridden and needed help with basic things. With the help of friends, family, and some excellent health care givers (excluding the orthopod), I am once again functional. I am by no means pain free and I have flare ups. The flare ups do however seem to be less in frequency and duration. I am thrilled to have found this site. I still sometimes can't believe this has happened to me and mourn my limitations. But I am truly thankful for the functionality I have regained and try not to take anything for granted. I hope I can find as well as provide some comfort. To health. |
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Aloha
New here. I typed my intro only to lose it before I posted:mad:. So I will give a very short version without all the good details. First, my username means Friend in Hawaiian. I am not Hawaiian but lived on the island.
My RSD started from a flight while on business travel. Got a blood clot (DVT) which was left untreated bec was un diagnosed by WC doc. Went months getting worse, while tossed around by docs. My WC doc couldn't give me a dx unless it was confirmed, but sometimes some are too small don't show on ultrasound. Was in ER also numerous times only to be sent home in same or worse than when I went in. FYI - I work in clinical research and around lots of docs and many years in health industry. It was my coworker MD's that finally used their influence to get the WC to go with their suggestion/referral to another Friend MD who is Chief Director at a teaching hospital. Lots of diagnostic tests/scans, etc, etc first thought was Lymphedemia but finally diagnosed with RSD. Had no support from family or friends and no one to turn too, so a few times had to call ambulance to lift me in a cage, call "scooper"to transport me to ER. Only to get doped up bec they didn't know what to do, even though I went to the same hospital my file is at, until they finally called my PM doc the next day. Oh need to mention, in so much pain, had to have a catheter and they never gave me an IV for fluids. When I was finally released, couldn't walk, sent home with a walker and major doped up. Marriage was already on rocks and only got worse. Meds take me 2 months to adjust to function again, and this only put more strain on marriage. After some PT, med trials and procedures, finally had some kind of normalcy in life. This only made me see how bad the marriage got. I decided screw you, and packed my belongings and shipped them and me to an island-Hawaii, where I was far enough away from non-supports and long distance calls to harrass me about my actions. I finally decided to think of me, selfishly for once. While in Hawaii - I loved it, my body loved it. I felt good: was able to walk, take a bus, relax on beach, less symptomatic - wow, i thought. Again everyone chose to not understand why i was happy. Well, after almost a year and pending judge signature on divorse papers, my husband had a huge wake up call and made changes. We decided one last time (3rd separation/3rd marriage therapist) to try to work out our issues. I must give all credit to GOD for changing both our hearts, the counselor/pastor for sharing with us tools what a healthly marriage is. We stopped our divorce in the nick of time before was officially over and working to develop a new marriage, which is going good. Since I returned to the mainland, however, any strides in hawaii R gone, my health has gone down hill. Doc wants to tweek my meds and I'm scheduled for another LSB. I surely miss the island and love living in middle of an ocean and everything hawaii gave me, but my husband won't move there, have a daughter who is a senior this year, and with the economy, work is hard to find, here and harder on an island. Looking for work here, interviews coming up (why can't have change in meds) and have to fight to continue to be able to work (which every1 knows) can be a challenge. My husband was recently laid off and unemployment for both of us don't cover our expenses and our 2 (out 5 children) at home. I do have an atty and a QME schedule in a few months. RSD dx in early 2007, started in one leg and spread to both full legs, both arms and upon returning to mainland started in face around lips and one cheek. The electrical zaps also returned two-fold especially at night in my legs and head. I have these brown scars used to be sores on both legs and middle of my back - don't know what they are, do you?? Liven hour by hour - Mahalo for reading my story. |
AiKane
i just wanted to say welcome and glad that you found us. i am so sorry that you have had such a ruff time with the rsd. i have had rsd full body and organ involvement for 11 yrs. i was 16 at the time so it was very hard for me to get DX period, so i know how you feel. i bet hawaii was awsome i went there as a kid before i got sick and loved it .. didnt want to go home welcome again jump and join the party carrie |
tjbird here and I hear where you are coming from. It is so hard to teach Dr's what is wrong. I live in the Mountains of Virginia and I even had a shrink tell me that the only thing he knew about RSD was that is was a "bear", haven't seen him since.
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I'm new here, I've read everyone's intro posts and see the similarities those with RSD and caregivers go through. My wife Suzy contracted RSD in 2002 from a fall in which she broke her right wrist. She tripped and fell, at a family function in northern NJ, reaching out with her right hand as a brace when she fell. Her hand and arm turned blue as we rushed her to the hospital.
To give everyone an idea of my wife is that she is very stubborn and shy when dealing with doctors. I've known her for 29 years and in 22 of those years she may have went to the doctors twice. Her mother told me Suzy would cry as a child during doctor visits. Simply put, she doesn't care for doctors which have made these last 7 years shear hell. She was an athletic person who loved sports and even contact sports such as football and basketball. At the hospital Suzy refused to stay the night and insisted on having the arm temporarily set and will have the arm looked after when we returned home to Washington DC suburb in Northern Virginia the next day. After two weeks under her doctor's care, the doctor told her and I that her arm was not set correctly and needed to be re-broke and set at the hospital. Suzy objected over the doctor's and my insistence that she check into the hospital. She insisted that the doctor numb her arm in her office and re-brake and set it there. Two doctor assistants remarked after the procedure that they've never seen any thing like it before. Suzy did follow the doctors advice once the arm was reset and healed but never recovered. She soon went into PS in which I participated helping her stretch and move her locked wrist for a short time. Her pain increased and the doctors let her go. For 2 years she would go from one doctor to the next seeking relief of her pain and keeping me at arm's length, telling me everything was ok. After 2 years she told me she was diagnosed with RSD and was told this a year before. I, of course, researched this disease and went into denial, no way a disease like this can exist! At this time and several years after Suzy's RSD pain was not controlled at all. She only took aspirin for pain. Within the 3rd year Suzy started to loose her mind and started to hallucinate from the pain and became very paranoid. She complained to me the doctors refused to help her and more or less told her she was nuts and to pull herself up by the bootstraps and go see a shrink. I had my doubts about this, got angry and insisted that I take her to every doctor's visit. I was shocked at these doctor visits. They would just brush her off as I sat there slacked jawed! With her right arm totally crippled, hairless, waxy white and cold, tears pouring down her cheeks, both of us begging for a plan to help her, we were brushed off again and again, told once more, yes she has RSD, prescribed Tylenol 3 and go see a shrink. We even made it to that Prestigious hospital in Baltimore, Maryland only to be treated very rudely and shown the door and all this from doctors who've told us they treat RSD. Why are they doing this, there must be a reason. We would go to all these doctors with her records, MRIs, EMGs etc. and they would seem to get an attitude real quick not because we were rude because I was always dumb founded by the hole thing and was overly nice and calm. I just couldn't not figure it out! Suzy then started to explain to me the reason, in which I found hard to believe too. She believed it was because of her work which was the world's largest defense contractor and that she worked for their benefits department at their corporate headquarters for 15 years. She believed that it was her employment through her health insurance that was trying to dump her. She said she witnessed this over the years where a person was deemed worthless to the company because of a illness. She said, before it happened, that either the insurance company, who have representatives work full time at this large company, would make it difficult for treatment thus she would be unable to work so the company would dump her relieving the big company and the insurance company of a dead beat. I started to get hints that there maybe some merit to this when I explained 2 times with the insurance company that we are having a hard time finding a doctor who will treat her RSD. The insurance company told me both times they have never heard of RSD. That time came when Suzy could no longer work and was put on short term disability-6 months, 4 years after her injury. At that time we found a doctor who appeared to want to treat her and prescribed some meds for her to control pain etc. Not the strong stuff but it was a start and we were exited about it. She saw Suzy 3 more time when the doctors where switched for some reason. This new doctor (the founder of the clinic) cut her meds down to one Vicodin per day and the weakest one at that. At the end of the month we went back to this doctor where I asked him what is the plan to help Suzy and he ignored me, I also asked him very nicely if there is no improvement with Suzy's condition will he sign for her long term disability which was coming due? He ignored me and left the room. He spent no more than 5 minutes with us. Two weeks later we found out that he ordered Suzy back to work, that she was fine and dandy. Suzy was terminated from work shortly there after. Here's the kicker. When I picked up health insurance from my work to cover Suzy she immediately received treatment. The new doctor, in 2007, prescribed a very strong combination of drugs to help her in which it did. She was able to sleep through the night for the first time in years. She became much more normal. The doctor then sent her to George Washington Hospital for ketamine infusions and PS. We've been in the process of getting Suzy SSDI for 2 years with an attorney with no luck. Senator Mark Warner of Virginia has stepped into her case to help her get the benefits that she earned from 30 years of work. My biggest fear is for us to lose our health insurance in this economic climate we are all in. I pay out of pocket $800 per month soon to rise to $1000. I really need her to receive medicare for our survival. Suzy explained to me why she kept me in the dark those first couple of years. Her fear was that I'd leave her. |
I forgot to mention is in those early years of neglect the RSD has spread from Suzy's arm to the other, both legs and her back. She is now in level 3. :(
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Hi I'm Sarah
I am very new to this all. I just need some support.
Last fall I was diagnosed w/ RSD, but I don't have any of the major symptoms (other than the pain in both of my arms, shoulder down, that started in my right wrist 6 months after I had carpal tunnel surgery, and some allodynia). The doctors are baffled by my lack of sensitivity to hot and cold, and I have burning pain only occassionally. No excessively dry skin or sweating and no redness. I am in pain all the time, like all of u, and am having difficulty just accepting this disease. I can't work because of the pain and haven't worked since last July, when the pain got too bad. I feel blessed to have found this forum, where I can talk to others in worse shape than me, no offence. Sarah |
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Hello Sarah and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!! I'm sorry to hear about everything that you have and are still going through:hug:!! I really hope that things start getting better for you soon and you are in my thoughts. I also suffer from RSD. It currently affects both arms and my left leg. I developed it when I was 12 years old after I fell and sprained my ankle and am now 14. I have tried all sorts of treatments to try and help but none have helped that much really. I am now on Oral Ketamine although my doctor doesnt like me taking it too much as he feels that it could mess up my hormones because of my age etc. You dont have to have all of the symptoms of RSD to get diagnosed. I think when my Doctor diagnosed me, he said that you have to have at least 5 of the symptoms to get diagnosed. I have all of the symptoms of RSD and when I was diagnosed, my doctor told me that I was the first case he had seen in over 20 years that was text book RSD - it's a shame that my other Doctors didn't pick up on it before then!!!:( Everyone is different when it comes to dealing with this awful disease and no two people are the same which makes it really hard for Doctors to diagnsose and treat it properly. Some people might have most of the symptoms whilst others might have them all etc. If you dont truly believe your diagnosis, I would consider getting a second opinion if you haven't already. I KNOW it can be very stressful but it would probably put your mind at rest and you need a doctor that you feel comfortable with and that knows about RSD. Please feel free to post anywhere on the forum and ask any questions you may/will have!! No question is silly and im sure someone will try and help you if they can!! Everyone is so nice here and I honestly dont know what I would do without this forum!!! I understand what you are saying about having a hard time accepting this disease and im sure many others too do!!! I had a real hard time accepting that I had RSD and would literally spend hours in bed just crying and I didnt go out of the house for months because I didn't feel up to it and didn't want others to see me as being 'different'!!!! I got really depressed and it got to the point where I actually wished that I was alive. I eventually found a nice Psychologist in London and she really helped me and gave me coping mechanisms to try and help. I still get depressed, especially if I cant do things that my friends can but im not as bad as I was and can control it a little better. I also have my Psychologist's email so I can talk to her whenever I need/want to. Do you see a Psychologist?? It might be something to look into if you dont already as they can really help. I actually want to be a Psychologist when I am older and am trying to get accepted onto a Health and Social Care Course!! This disease has taught me a lot and I want to try and help others who are in the same situation as me. There's a few people on here that see a Psychologist/Psychiatrist to help them come to terms with their illness so it might be worthwhile speaking to them about it. Take care and if you need anything, please know that I am here for you because I DO understand some of what you are going through!! Alison. |
Hello everyone,
My boyfriend has had RSD/CRPS for 5 years now. Recently it has spread and mde his pain worse where he is unble to work and travel for longer that 30 minutes. He is prescribed: Percocet 5 ml 3 times a day Lyrica was 75ml 2x a day but now it will be 100 ml 3 x Soma, didn't work so he's off that Physical Therapy was 3 x a week but they determined it wasn't working and discharged him. I am trying to be supportive and beleive me it is the hardest thing in the world that I have been given to tackle. I am doing what I can but the most frustrting part came today when the doctor wouldn't listen to him. I was right there in the room with them and the doctor ignored everything my BF was telling him. I found a great website I am working with to raise research funds. I just need to hear from others with and without RSD and how I can be a better supporter. Thank you. |
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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:hug:! 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 :hug:! 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!!:hug: I hope things start getting better for you soon and please dont give up hope! Alison |
Hello everyone. I have used this site a little and wanted to introduce myself. I used hopeful as my user name because I refused to give up hope that someone will find a way to cure this disease. My CRSD started after a fall on the ice. I thought that my arm would hurt more if it was broken, so I did not get it checked. After 6 months a Dr. at work, I was a surgical RN, did a X-ray of my Left wrist. It was broken but healed. So I started to see him at his office. We tried to figure out why my arm was in so much pain, more than when it was broken. My arm did freeze up on me, so I had 3 different surgeries to get my movement back. Then my Dr. went on a convention about pain, to try and help me, that is where he heard of RSD. He was 98% sure that was what I had and sent me to a pain clinic. I was diagnosed with RSD in1998 about two and half years after this started. I went through most of the greiving period and now I am trying to do as much as I can. I do have many days that I still grieve my lost, however I have tried to look at the postive, and remember that there are many more people worst then me. Today was a really bad day of pain so I in my "pain room" so I have time to write this. I wanted to thank everyone who has posted on this site it has all ready help me. Hopeful
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New to CRDS
Hi, I was just diagnosed today with "mild" crds. I had torn a ligament in my hand at wk back in Dec. After 6 wks in a cast and the rest of this time in a splint, pain worse and spread to my whole hand from just my thumb. It feels like my hand is being ripped apart and it burns. This is mild?! Anyway, I have some swelling, a bit of color chaange (red w/white lacey pattern sometimes) sometimes it is colder than my other hand but not always. The pain is worse when I try to move or use it and it's constant. I can't think, concentrate, sleep, i am irritable etc. I bet my kids are ready to run away . I am in OT and it seems to help. This is under wc. Anyway, pain magmt doc gave me a creme for my hand and ultram but suggested nerve blocks, especially if no improvement in function in the next 2 wks. I was just so stunned today, i am on an emotional roller coaster I couldn't even think of questions to ask.
The wc nurse case mgr says that if meds don't wk we'll do nerve blocks and that will cure it...is that true? I feel like i am losing my mind. |
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Hello Stressedout and Welcome to Neurotalk!! You will meet many great peopl here who i'm sure will be more than happy to help you if they possibly can!! I'm SO sorry to hear about everything that you have and are still continuing to go through!!:hug: I really hope that things start looking up for you soon and you are in my thoughts!! I also suffer from RSD. It currently affects both of my arms and my left leg. I developed it when I was 12 years old after I fell down some stairs and sprained my ankle and am now 14. I have tried all sorts of medications and treatments but none have really worked - the only med that offers me some relief is Ketamine but my doctor doesn't like me taking it as he feels that it could affect my hormones etc because of my age. We are now considering trying other options such as Botox as a last resort. What the WC nurse said is totally wrong!!!! Unfortunately, there is currently no cure for RSD however it CAN be managed with medications, nerve blocks etc! Remission means that the symptoms can go away for a period of time although the RSD isn't fully gone and can still flare back up again. Everyone with RSD is different and that makes it really hard for doctors to determine what will work for you as what works for one person, might not work for another. It can usually take a period of time for you to find the right treatment plan. You are pretty "lucky" that you got diagnosed so quickly - doctors usually say that the best chance of RSD going into remission is if it is caught within just over 3 months. Have you tried Physical Therapy?? I KNOW that it is really painful but it is probably the one thing that will help you in the long run. If you aren't having PT at the moment, start off by doing some gentle exercises at home and then gradually build them up as and when you feel able to. With RSD, Doctors say that you either "Use it or lose it" and it is true!!! I can relate to the feelings of being angry, frustrated and irratable and i'm sure many others can also!! RSD affects the Limbic part of the brain which is where moods and emotions is controlled. You are also fairly early into your RSD and you are probably still in denial which is VERY common!!! It took me over a year to start and accept that I have RSD and I dont think that I have fully accepted it now! Do you see a Psychologist?? They can help you come to terms with dealing with a diagnosis if you see one who knows what he/she is talking about!!! Take care and if you need anything, please know that I am here for you because I DO understand some of what you are going through and just how scary it is to get diagnosed with such an horrible condition!! Pain free hugs, Alison |
Bio-Mat for RSD
Hi Everyone, My chiropractor has been researching for the past 2 years to try and find help for me and my RSD. He talks to physicians, patients, and alternative medicine doctors all over the world. The other day, he suggested trying a Bio-Mat. I can understand how this can help and he has another patient that has been having relief from using it. The only problem is that there is no facility in my area that has it. The other patient purchased one for herself, but it costs $1700. I am not against paying that if it will help me, but I wanted to see if anyone has tried it and got relief. She is willing to rent the mat out to me for a day to see if I want to purchase one for myself. Let me know if any of you have tried this or heard that it may help. If I do purchase it, I will be back to let you know if it does help.
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Hi Sue and Welcome.
No, I've never heard of a BioMat. I'll ask my Dr. and try to do some research. I've taken Biofeedback and know that is an excellent way to calm down. Also Breathing exercises, Visualization, Meditation, Of course Physical Therapy, and massage therapy. I found swimming to excellent, water needs to be 86 or warmer. Keep moving, stretching. I had frozen shoulder right after surgery, pt and massage took about ayear, but well worth it. Then the other shoulder, then left hand. Hand only got 50%, but and bend fingers some. Kept the toes from freezing up by swimming exercises, and following Drs. exercises. I'm going to try HBOT as soon as my Dr. finishes his new clinic. Heard good things about it and talked to a couple of people. I have full body-3 years. Took 4 years to get diagnosed. I live in Arizona, where do you live? I have learned so much from this forum and got so much support. Wonderful group of friends here that truly understand the loss we all face, pain, and change in our life. I'm grateful for my family, and friends. It's something that is so difficult to get your brain wrapped around, especially since our brains have those memory problems! Take care, and let us know what you find out. Again Welcome, happy you have joined our group. loretta |
I've been participating for a few weeks now and guess it's time for an intro. 7/24/04 I was riding with my motorcycle group when I "met" a speeding truck in a one lane railroad underpass. Survived with a only a badly broken right leg, 3 1/2 weeks in hospital in so much pain. They sent me to a psychologist because I was crying so much. Second visit she finally agreed that I wasn't mental but actually was in pain! It didn't help that my mom had gone into the hospital 4 days before my accident and was close to dying. For the next 1 1/2 years my surgeon kept saying to give it another 6 months and the pain should go away as did 2 other ortho consults. Finally a physical therapist suggested I had RSD. My surgeon didn't believe it but my family doctor did. Another 6 months before any tests for nerve conduction then pain doctor I was referred to did 2 nerve blocks with no ease. Changed to another pain doctor who specializes in RSD (he's considered an outsider and strange by the established physican community) because he believes there is a correlation between the vascular & nervous system, heavy metal poisoning or inflammation may underly the RSD. It's interesting that recent research is beginning to support his therapies. He also found out I had deep vein thrombosis and have mild lupus and some weak ligaments. He founded the local South Carolina RSD support group! He calls me emotionally fragile and we finally have come to an understanding that I'm not bipolar but have post traumatic stress and am entitled to cry when I hurt.
It's been pretty difficult as you all know but those first few years were horrendous. My Mom was in the hospital, nursing homes and assisted living for 2 1/2 years and I had to move her 7 times. Thankfully she is now back a home. I got served with divorce papers 2 days after I got home from the hospital. My son was working and going to school full-time and he'd just threaten (tease) to put me in the psycho ward if I didn't stop crying. He doesn't want to know anything about RSD so doesn't understand or empathize, some times he gives me a hard time about not doing housework or yard work. He's been great about the big things around the house - reroofed it, insulated attic and crawlspace, painted decks & storage shed, etc. but neither he nor his girlfriend do much although they stay rent-free (that's another story). I work for a large hospital system in employee benefits and am trying to hang in there until I can retire in 2015. I've already had to take a demotion due to the RSD and every week it seems like it becomes more difficult especially when I don't sleep from the pain. They just hired another person to take over 1/2 my responsibilities (it's now taking 3 people to do the work I did along before the accident!) and I've formally asked for flexible work hours and to work from home as my responsibilities now are 99% computer based. I've been working from home after hours and weekends for at least 15 years but they say we don't have a policy so they won't committ to accommodations under ADA even though the Department of Labor recognizes these accommodations as reasonable. So I just continue to track hours I work from home including days my manager okays for me to work at home in case they try to fire me for missing scheduled work hours. I hate the pain, I hate not being able to do things I could before, I hate being exhausted all the time, I hate no one really understanding how hellish RSD is and how it affects every facet of living. But I appreciate that so far the RSD has not spread to other parts of my body, I appreciate my Mom for caring enough not to complain when I don't see her often enough now that she's homebound, I appreciate my sister who comes to help with Mom every vacation even while she is dealing herself with a life-threatening brain disorder, I appreciate my funny, loving dog (my pet therapy), I appreciate the sights and sounds of nature. I hope more answers/therapys come quickly for all of us. Lynnie |
Lynnie, what a story! I am so sorry you had to go through it all, the accident, the excruciating pain, the way the RSD was discovered. I don't blame you for crying. Anyone would cry in your position. I still cry. It's nothing to be ashamed about.
If there's anything that RSD patients all have in common it's that they try very hard to keep their lives functional, and themselves functioning. If it's taking 3 people to do your job right now, then praise them for keeping you employed. Not many employers are so kind. Hang in there. I hope something can be accomplished with the ADA accomodations. I am hoping along with you that the RSD will stay contained in one part of your body, so you won't have to give up anything else in your life. I admire you for seeing the good in your life too. Welcome to the forum!!! |
I just wanted to say that I have purchased the Bio-Mat last Friday. It was delivered on Thursday and I started using it on Friday night.
So far, I have used it two nights on the green settings. After the first night, and I know this sounds too good to be true, and I am a person that does not believe what I hear I need to try it to believe it, my fingers were loose. I did not have the stiffness like I have had for the past 7 years. It lasted until about 4 p.m. It was great. Yes, the pain is still there, but the pain will take the higher settings to alleviate the pain. I could turn over in bed without pain in my hip (RSD) and my back (normal back ache). My ankles that were constantly swollen from osteoarthritis were normal (no swelling until about 7 p.m. at night). I sound like a infomercial, but I am speaking the truth, I have not felt this good in years. My pain is still here, but I do have high hopes of it decreasing somewhat. I am slowly increasing the settings in the morning for about 30 minutes to the higher settings until I am comfortable with the highest setting which will alleviate the pain. I will keep everyone informed. If anyone is interested in the bio-mat, let me know. I will give you the name of the lady that helped me with my purchase. She is extremely nice and helpful. She is a distributor. She has other clients that have RSD that purchased the mat. She is great. I have her name and number and email if you are interested. It is expensive, $1790 total price for the mat, pillow, and shipping. But so far, it is worth it. I have a better outlook on life in only two days. |
You sound like quite a gal!
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?
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