Hi, I know it is long, but I am desperate so please read. I am a fourteen year old girl who for over the past two years has experienced extremely severe muscle spasm in both shoulders. This all first started when I subluxed my left shoulder and it shifted out of place and into my back. I went to a&e and they strapped it up and made me physio appointment, I had pyhsio for 3 months and there was no improvement. Then one night I was moving my arm and it subluxed except every time I put it back in it just fell out again. So I went up a&e and thy tried for hours and couldn't get it to hold. The next morning they tried under anesthetic and when I woke up it subluxed again.A few days later my shoulder went into a rapid, severe spasm where my shoulder subluxed, then went back in,then subluxed and so forth. About a month later, I had a nerve block put in and when I woke up from my mid arm downwards my arm was paralysed, the doctores didn't know why and it is still like it today. I then spent six months in four hospitals having had done, botox, a nerve block, and intense physio and occupational therapy. Then, in Januaray last year my right arm got poulled back and my right arm subluxed and straight away started the severe spasm. No doctors know what to do, I don't see any doctors anymore and I am left like this. This spasm are excrutiationg, I barely sleep, and my shoulders are affecting everyone around me. I have tried several drugs at the moment I am on, gabapentin, baclofen and codiene. If anyone has had anything similar or knows of any doctors who may be able to help in the us or england please reply. I have been told that I most probably have rsd so if anyone has been treated by a rsd specialist, in Florida or Georgia (especially), and has contacts information please reply.

Thank you

Hi

Its impossible for anyone to give you any medical information on which you could rely via the internet. However, you would have to have a whole serioes of other symptoms to be diagnosed with CRPS. There are various clinical protocols with diagnostic rules for reaching a CRPS diagnosis - you have to exhibit a series of clinical signs in certain categories and symptoms in some others. You also have to go through an elimination process where they are unable to find any other condition to account for the pain.

The symptoms you have could have been caused by any number of (or a combination of) things that are nothing to do with CRPS. It could be peripheral neuropathy, the repeated trauma to your shoulder, nerve damage, an underlying medical disorder like EDS or hypermobility syndrome, a screw up with your block etc etc. Remember too that traumatic damage will always cause the surrounding muscles to go into spasm sometimes causing horrific pain.

You need to get a referral to a specialist - it doesn't always matter what discipline you are referred to. Neurologists, anaesthetists specialising in pain management, rheumatologists and some orthopaedic surgeons can have the necessary diagnostic skills and experience. However, if CRPS has been suggested by someone who you trust to know what they are talking about then you need to try and see someone who has CRPS experience. You would be best to do your own research to try and find someone with suitable local experience - I don't know where you are based. If you are in the UK you will find it almost impossible to find a CRPS "expert" anywhere or in any discipline but you should manage to find someone with enough experience to make a reliable diagnosis. In the UK, CRPS medical science is years behind the US and Europe so CRPS is considered to be a chronic pain condition and not a neurological condition (as it is in US, Netherlands and Germany). In the UK your best bet is a referreal to a pain management specialist (anaesthetist) but in the US it is as likely to be a neurologist you would see.

If you can afford it, you can look at the private healthcare and hospital sites and find people with experience. It also means you shouldn't have to wait long for an appointment.

I wish you luck. Whatever you do, please don't self-diagnose from the internet. Use it for gathering information but keep an open mind until you have a diagnosis from a specialist.



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Hi We live in Tampa, Florida and see Danya Godoy, in St. Petersburg, may daughter sees her for CRPS in her ankle and leg. She likes her very much and I believe she is very good. She knew immediately what to do for my daughter. My daughter is 15 years old. She underwent a Sympathetic nerve block this week. She is doing well. If you are close to St. Petersburg, you should give her a call and make an appointment. My daughter was shifted from doctor to doctor until this one helped her. I hope you are close enough.

Look up a Dr. Hashmi, maybe in Palm Bay. Sadly he lost his nurse practicitioner who was better at the blocks and trigger point injections than he is (he is good but not as aggressive as Hooshmand). Hashmi trained with Hooshmand who was the master but came to a sad end that i am not about to get into here. But Hashmi at least knows the ins and outs of RSD and he is a wiz with medications that help it. Most important though is just that he has a LOT of RSD patients and thus a lot of experience with it - and he is in Florida. You are in luck - I used to fly to Florida from far away just to see him.

Hi Again,

I forgot to tell you that the RSD Foundation is in Tampa Florida on 12901 Bruce B Down Blvd. The doctors name is Anthony Kirkpatrick you can google him for his phone number. he does not take insurance, but you can submit to your insurance company. Google him.

Sandy

My RSD started in 1999 and was not diagnosed until 2005, a workers comp situation. I would be very careful with Dr Godoy. She was the second pain dr that I saw and at first she was ok, then she got very ugly with me. after one of the pain blocks she blessed me out in the hospital because I am over wieght and then nerve block did not work and I had a lot pain. She had me get out of bed just after the pain block and walk into the hallway of the hospital were there was another hospital bed that wieghted me, this was very embrassing and she was yelling at me. The nurses were very apologetic after she left. She did not put me to sleep and I could feel every jab she made with the needle in my spine. The things that she was saying to me made my husband very mad. She also quit prescribing pain meds to because she told me that it was going to kill me mixed with my other meds. She also told me that there was a disabled person that worked at the McDonalds at the hospital and she told me that he could work so could I. She was not very sympathetic at all of my situation. I would not refer her to anyone. I was referred to her by Dr Kirkpatrick, he is a good dr. This is my experience with her and my opinion.

Hi, I am sorry you had that experience with her. There is no excuse for anyone to be treated that way. My daughter had four sympathetic nerve blocks and they stopped working. I took her to the Cleveland Clinic, where she spent three weeks in the Pediatric Pain Rehabilitation program. We returned two day's ago. She is back in school and not pain free, but doing very well. The clinic is for pediatrics. I know that there is another pain rehab for adults, I believe it is at Mayo. My daughter is no longer taking any pain meds. She was diagnosed in December and was on every imaginable pain med. But now nothing. She went through 9 hour days of PT/ OT for desensidation, aqua therapy and other therapies. If you have any children out there with CRPS, look into this program. It is fantastic, very hard for the kids, but they do get their lives back. She was able to wear a pair of jeans for the first time in 6 months, where she could not put anything on her leg before we went to the Clinic.

My prayers are with all of you.