I have RSD (Reflex Sympathetic Dystrophy) Does anyone have this & if so can you recommend a good doctor??

This is a rare condition which I have now had for 3 + 1/2 years just by twisting my ankle this condition has made me disabled & is likely to never go away

I have RSD/CRPS, and have had it since I was 13, and now I'm almost 15. I would suggest going to a Pain management doctor or a neurologist. They will be able to help you with managing your pain, and with treatments to help you. I would also suggest looking into a Spinal Cord Stimulator (SCS) for your pain. An SCS is an implanted device which uses electrical stimulation to block the pain signal from reaching your brain so instead of pain you get a pleasant tingling sensation. My SCS relieves about 70%-80% of my pain. It has been one of the best things that I have found to treat my pain. You can get more info about SCS's at www.ans-medical.com Good luck!

You would probably want to see a pain specialist. They are the ones who are most familiar with this problem and they have many different types of treatments they can use. Either your primary doctor could refer you to someone in your area, or you could check at a major medical center near you to see if they have a pain service. Good luck, and I hope they are able to help you.

Hi, I have had CRPS/RSD for 8 years and now have very severe involvement of my whole right leg. You need to find yourself (will require a referral from your g.p.) a good pain management doctor with experience in treating CRPS- they are usually either anaesthetists or neurologists with further specialist qualifications.

Not knowing whereabouts in the world you are, I obviously can't give you names. You need to look for someone who is happy to explore any and all avenues of treatment & who will take a multidisciplinary approach- e.g. medical/surgical, physio, maybe a pain psychologist, etc. At 3 1/2 years, you may no longer have a good response to sympathetic blocks, but they would certainly be worth trying if you haven't.

There are many other options, such as ketamine, spinal cord stimulation (SCS), drug pumps and so on. (I've had multiple blocks, have an SCS, am on multiple meds & seeing a physio, am having botox treatment next week for my dystonia and am now having to consider an analgesic/baclofen pump so I've been around the block quite a few times!!) You should also consider having a look at mirror therapy as it can be very useful in maintaining or regaining some degree of limb function. It didn't work for me, but I know of people who've been cured by it.

And of course someone who is open with you and that you yourself are able to trust. A good idea might be to join one of the online support groups if you haven't already, as people on there are an excellent resource as far as different treatements and knowledge of different doctors goes.

Hope that is helpful to you- please feel free to email me if I can offer any more advice :) Good luck with finding a good specialist.

I was diagnosed with RSD after back surgery 2 years ago. I don't kow what part of the country you are in, but my doctors are in San Antonio, Texas and they are the best anywhere! My Neurosurgeon referred me to my Pain Management doctor, who is from Prussia. He is hard to understand, but he knows his business! I went through the whole battery of tests, narcotics and procedures, including blocks, epidural steriod injections, trigger point injections, physical therapy, epidural infusion, spinal cord stimulator trial, narcotics and finally, an intrathecal pain pump implant with morphine. The only thing that has worked are the narcotics and now the pain pump implant is sort of working. I am taking Methadone, Oxycodone, Lyrica, and Ambien CR. I just got off of Fentanyl Patches. They implanted the pain pump about 4 months ago and are going to change the medication from Morphine to Dilaudin. The Morphine just isn't doing the trick. I am on 100% disability. I walk with a walker or a cane, but still can't walk more than 5 feet at a time. My doctors have filmed my RSD every couple of weeks to use as a teaching element in their practices. They have said they have never seen a more serious case of RSD before. The swelling in my feet, legs and now my waist, is about 5 times the normal size. I have had to order clothes that are 4 sizes bigger than what I normally wear, because of the swelling. I wear this just to go to my doctors appointments, otherwise I live in my pj's, which is what the doctors have told me to wear. I don't go out of the house, to the grocery store and have not driven for 2 years, per doctors orders. So, I am pretty much house bound. Doctors want me to stay in the bed most of the time, which I have done for 2 years now. That's because I can't walk because of the severe swelling in my legs. With every step I take, it feels like my legs will burst. Reasons for all of the above is because I have problems with falling, not being able to walk, my legs going numb and falling asleep for no apparent reason. I am not able to do any type of housework, including cooking, laundry, cleaning, etc. My sons do this for me. My life is pure he** because of the RSD. I am at my wits end about this. I am 48 years old and have the body of a 100 year old. I am very depressed, and go to a counselor to talk about my problems. Unfortunately, it really doesn't help, because there is nothing they have found that is a cure for RSD. That is the only way I will be better. My whole family suffers. I have no income except for my disability checks. I am a single parent, trying to put 2 kids through college. Now, tell me how you are supposed to do this on $862 a month disability? I hate life right now, and the only reason I stay here, is because of my beautiful boys. I suffer 24/7, can't sleep, can't walk, etc. Not much of a life, is it? Sorry I went off on you guys, but I am so tired of living this way. I pray that none of you suffer as I do. Good luck to all of you and hopefully, there will be a cure soon!

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HI Tracy,
I have had RSD in both my legs for over 8 years. I'm not sure where you are located so that would make it difficult to tell you if know of a good pain doctor for you. I live in Southern California, San Diego specifically. However, I travel 145 miles to Fullerton for my pain doc. I previously lived up that way but for the past 3 years have been driving the distance. Well, I haven't my husband has. I stopped driving in 2002. What type of medications do they have you on or have they tried? I did have a spinal stimmulator for 4 years but we never got it to give me enough coverage. Had both the percutanious leeds ad then tried the surgical leeds, but ended up wth a staff infection 8 weeks after the surgical leeds were placed. Now We are looking at doing the intrathecal pain pump. If have any questions, please feel free to email me or IM me. Always willing to listen, know how important it can be to have someone to vent to on the bad days. My IM is panthrvamp and that is at both yahoo and aim. my yahoo email is either the panthrvamp or deb(underscore)earl(underscore)veil@yaho...

Debbie

I have RSD, for about 10 years. There's really no way to describe the pain one goes through with RSD. I would recommend nerve blocks . I've gone from extreme pain to discomfort. I wish you well.

my boyfriend has rsd in both arms, the condition used 2 go into remission where he could work on cars again, but now ,since feb. it's not going away. he tried lyrica, tramadol, morphine, oxycontin, with no decent relief. now he uses a tens unit 4 the pain and contrast baths. i been tryin 2 talk 2 him about trying enbrel cuz i read where it's been sucessful in some cases.