Dear All

A while back I posted with some questions and a request for help. In addition to the ususal symptoms, my CRPS has given me the endless joy of a severe movement disorder that affects my whole body. The docs seemed in their infinite wisdom were testing for all sorts of other neurological problems and telling me CRPS couldn't present like mine. No surprise then that after doing a bunch of tests, they have drawn a total blank on finding any other neurological disorders that could be causing it. I have had CRPS for 13 months now.

I have previously described my movement problems and I don't want to bore you all but I have severe muscle spasms, dystonia, weakness, temporary periods of paralysis, tremor, spastic limb posturing, balance problems, problems initiating voluntary movement, myoclonic jerking, startle reflex and so on. I can barely walk at all now and I have to use either crutches or a wheelchair. None of this is caused by pain-related disuse and it affects my whole body from my toes to my face and neck.

Some of you were kind enough to reply to my previous questions about movment problems. I am gradually working through all of the psychological and practical issues of coming to terms with my disability. I know that there is a lot of chat out there about people with CRPS who have an eventual remission from their various symptoms. I am interested to know whether any of you out there have experienced or heard of anyone with such severe movement problems as mine having an eventual remission (without treatment for that aspect of the condition). There are no plans here to try and treat my movement problems or give me any drugs to lessen the symptoms.

I never like to give up all hope but I think it is important to be realistic in order to come to terms with what could be a permanent and severe level of disability. We don't have experienced CRPS specialists in Scotland and the supposed CRPS specialist centre in England said they hadn't seen CRPS present before with movement disorders like mine!!

Thanks everyone!

Personally, I have found the Baclofen has been the best drug for control of my RSD induced CNS spasms. I take 10 mg., 4 times a day, and understand that some folks with severe dystonia take significantly higher dosages than that. The only downside is that it plays havoc with my short term memory, to the point that I couldn't use it when I was practicing law, but now that I'm "retired" it's no longer an issue.

Hi GymJunkie,

First of all, I am so very sorry that you have to deal with all of that . I am also from England and I suffer from RSD and Movement Disorders (I developed them when I was 12 years old, I am now 13).

I have CRPS Type 1, Dystonia and really bad Myoclonic Jerks. My Doctors also told me that they had never seen CRPS/RSD present in the way that mine does, when I first developed the Myoclonic Jerks, My PM Doctor just spent hours watching me and admitted that my case of CRPS is the worse he has ever seen. I have had a lot of interest off of different Doctors about my case of CRPS. Most of the Doctors are really interested in my case and I have even had a lot of videos taken, some of my video's have been taken to an Internation Conference about CRPS. Whilst I am happy that my case of CRPS is getting the message across to other doctors, it is also really scary knowing that no one has seen a case like this before (in the UK anyhow).

I have just been to GOSH (Great Ormond Street Hospital) and have completed there 3 week intense Physiotherapy program. I spent 13 months wheelchair bound and I am now able to work short distances with crutches, whenever I try to walk long distances though my leg gets really bad and painful and the foot rotation (dystonia) gets worse. My Myoclonic Spasms haven't reduced any and neither has the Dystonia ... I have now been told that my only options left to try were either Casting or Botox - both of which you are not supposed to do when you have CRPS but my Doctor feels that it is my only chance of getting somewhat better. In a few weeks, I have to go into hospital, put under General Anasthetic and have my leg manipulated and a splint moulded to the shape of my leg. Hopefully the splint will work but if it doesn't I will have to have my leg casted or something more invasive done. I will let you know how the splinting goes in case you ever feel that it is something to look into to try and help you.

I have tried a LOT of medications to try and resolve some of the spasms. The meds that I have tried so far are: Baclofen, Propranolol, Diazepam, Kenadrin and many, many others. Non of the meds have had any affect on me and most of them made me really sick (probably because of my age).

Here is a link to a video of the spasms in my leg:
http://uk.youtube.com/watch?v=qE_OwuilOew
http://uk.youtube.com/watch?v=xIXakErNBpE

I hope this helps, if you have any questions please feel free to ask me ... I have been there and got the tshirt unfortunately!!

I wish you the very best and hope you get some answers soon

Alison

So far there has been no suggestion of using any drugs to treat the movement problems I have. I am slightly surprised because Baclofen is the screamingly obvious drug to try here but I have been wholly unimpressed by all of the medical "care" I have had so far so its no great shock!! In spite of all of the problems and the pain, I have gone back to work full-time and I doubt that I could continue in my job if I started to take a drug like Baclofen or diazepam. If I had to choose, I'd rather have my job and remain mentally sharp than try to medicate the movement problems and then struggle to maintain my cognitive abilities.

Unfortunately, I seem to have had the experience of falling into the "too hard" pile for the doctors I have seen and they all know little or nothing about CRPS. Instead of making my case unusual and interesting to them, it has the opposite effect - they can't get rid of me fast enough because it exposes their own limitations!!! I suspect it has been hampered by the fact that my treatment was all done privately initially so I was seeing docs who are more motivated by making extra cash on the side rather than academic or research clinicians who are motivated by seeing interesting cases. I think its also different when children are involved with difficult medical conditions - doctors seem to be more interested and responsive than with adults, especially in a specialist children's hospital like GOSH.

I am seeing a new PM doc soon so it'll be interesting to see what he has to say. The previous one told me that he wasn't aware of CRPS being associated with movement problems so that didn't fill me with much confidence (especially since when I first started to get the thumping great tremor in my right leg, he said that often happened with CRPS and he was confident that it would "go away"!!!). My neuro has never seen or treated CRPS and neither had the orthopaedic surgeon who did the surgery that kicked it all off (and he has just retired in his 60's). Great huh!!?

I really hope that your appointment with your new PM Doctor goes well and that he gives you some answers and is able to treat you. I know how scary it is having Doctor's that don't know what to do or how to treat you.

My Doctors also have No clue on how to treat me, they are basically just trying EVERYTHING they can think of and hoping that something will work eventually. I feel like a guinea pig as everything is "trial and error" and it's "We will try this but it might not work". I think because the Doctors have never seen anything like my condition, they just don't have a clue on what to do that might help. It took me nearly 18 long months to finally find a Doctor who wanted to try and help me. I don't want to be on meds either but I was told that it was the best chance at getting the spasms to reduce.

You are not alone, I also have some of the symptoms you have. Like I said, if you ever want to talk I am here

Alison

Hi Ali
At least they are finally trying things for you but it is pretty frustrating when it is so obvious that they are just doing things because they feel they have to and they have no idea what else to do. Maybe I should come to your next hospital visit with you and they can see another dramatic case of CRPS related severe movement disorder!!!

I am probably at the other end of the spectrum - I can't get them to try anything!! In the end I am not sure that it will actually make any difference to the outcome for either of us and at least I know that unlike my docs, I have read every single paper, document, website, clinical guideline or protocol, clinical trial result, piece of published research or medical study related in any way to CRPS that I can get my hands on. I have pushed every doctor hard for answers. I have (myself) arranged for lots of referrals to try and get as much treatment as possible and to find someone who might be able to give me a prognosis. I have done everything possible to fight through all this and whatever happens, there is nothing else I can do or could have done to help myself. That in itself makes me feel positive.

I have no expectations of the new pain doc - if he is any good or knows anything about CRPS it will be a bonus but I won't be getting my hopes up!! My pain is relatively well controlled at the moment so pain it isn't such a big issue for now.

Hi Gymjunkie,
I think I've written to you via this forum about your condition. I'm sorry you continue to run into dead ends for help for your movement disorder. I've had rsd for 12 years and now is full body. The last 6 years it started into movement disorder, myclonic jerks--severe and violent. electric shocks and spasms. I don't have the extreme that you and Ali have-The jerks, shocks are totally under control and have light spasms ocassionally.My Dr. is from a prominent New York City Hospital and experienced in rsd. He is a psychiatrist, neurologist, and degree in pharmacology. My meds for the jerks, etc were neurotin 3200 mg a day. Was on that for 4 years or so and then decided to switch to lyrica after it was on the market for a while. I'm on 300 mg of lyrica-was on 400. It also helps better for pain level and fibromyalgia, which I have too. I'm on Vicodin for pain, Lorazepam-an anti-anxiety drug, sleeping pill ambien cr , one anti-depressant cymbalta 60 mg.
I went thru a rough time with depression and adjustment to this disorder. I was like you-so very active in so many things physical, the gym, tennis, water and snow skiing, biking, short runs 10k, swimming. I still enjoy swimming- it's the best therapy and has kept my feet and toes from turning, my Dr. gives me exercises. It was too late (before I found this Dr. and was misdiagnosed with RA rheumatoid arthritis for my left hand. It's like a frozen claw, permanent loss of range of motion for the four fingers and knuckles. So I work hard on keep my other 3 limbs moving.
I'm also on two high blood press. meds . I've had one seizure, where I passed out for over an hour and pressure down to 40. icu for 4 days. I monitor my pressure every day. It generally stays ok, sometimes a little high and sometimes a little on low side, but nothing like the passing out, like I did one morning when I got up out of bed. I'm 60 years old.
I'm so sorry you have this, do you have skin problems? The meds have affected my short term memory and weight gain. I'm working hard on that, it's distressing as I was thin my whole like till I had surgery and next day had this, but didn't get diagnosed for years. Being positive is the only way to get thru this and a good support system-an experienced Dr is so important. I just found out last month, my Dr. is moving in 2 years. I'll get his help for a replacement. We have some good hospitals here in Phoenix, AZ Mayo Clinic and Barrows Neurological Institute.
Is there a RSD national organization there un UK? Hopefully the new Dr. will work out well for you. I'm grateful to have had my Dr. this past 4 years- I hate the meds, but the myclonic jerks were so violent, they would lift my head right off the pillow, and the electric jolts-scarry. Dr. said if I go off the lyrica, they'll come back. Take care and let us know how your appt. goes? Loretta Jewell