Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-13-2008, 09:32 AM #1
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Default Please Help - Severe Movement Disorder

Dear All
I am newbie on this site and desperate to find out if anyone shares my weird symptoms. I was diagnosed with CRPS Type 1 in January this year after an achilles rupture & repair surgery done last August/September. I have most of the typical symptoms that you are all familiar with. I have the "cold" type of CRPS where my affected leg is cold and mostly I have a deep, cold, aching somatic form of neuropathic pain rather than the burning pain that many folk have.

I started to get spasms and tremors in my affected leg in mid-March which spread over about 2 months to my whole body. The movement problems have continued to get worse - affecting more and more of my body, becoming more intense and more frequent. I have constant muscle spasms everywhere, sudden jerking, tremors, spastic posturing, weakness, dystonia, scissoring, slow twisting of my limbs and body plus I have stretch reflexes. I have mostly got flexor spasming but I get extensor spasms when I lie down. I find it virtually impossible to walk even with crutches because I can't make my legs move - they are rigid and I can only slowly drag them along with huge effort. I experience periods of paralysis where I can't move or stand up although I can feel my legs. I often can't make voluntary movements but my body is constantly moving in an involuntary way. Cold makes my muscles rigid and any touch on my legs (especially unexpected) makes them jerk and spasm uncontrollably. It is also worse if I am upset, worried or nervous. It continues to get worse virtually by the week.

I am going through various neurological tests to see if there can be another neurological explanation but I have been told by a couple of docs that CRPS can't cause such widespread movement disorders beyond the affected limb. My reading of the medical literature would suggest otherwise - I can accept that it might be very rare but it does seem possible.

My plea to you guys is to tell me if you are aware of anyone with CRPS who has the extreme kind of movement problems I have. I don't have full body pain or other symptoms. I feel as if I am going crazy and the docs must think I am totally insane. Please, please if anyone else has similar symptoms or knows of CRPS presenting like this share your experience with me.

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Old 08-13-2008, 10:53 AM #2
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Hello & welcome,

i think some of the members have dystonia type of spasms.
Has anything like that been mentioned or tested for?
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Old 08-13-2008, 11:01 AM #3
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Hello and Welcome to Neurotalk - you will find many great people here!!

I am so sorry to hear about everything that you have and are going through

I have CRPS/RSD in my left leg and right arm - I got CRPS when I was 12 years old (I am now 13). I also suffer from severe spasms in the whole of my left leg from my hip downwards and when my arm is in a bad flare my arm will close into a fist without me being able to move it at all.

My Pain Management Doctor and Neurologist diagnosed me with Dystonia and Myoclonus which are both complications of RSD. I have spoken to quite a few people who have CRPS and Dystonia, however I haven't spoken to that many people who have Myocoluns as well. I was told that the Myocolonus is a sudden jerk in a limb.

Here's a few video's of the spasms I am experiencing in my leg - you can see that my foot is rotated which is the Dystonia and the horrible, wild shaking is the Myoclonus:
http://www.youtube.com/watch?v=xIXakErNBpE
http://www.youtube.com/watch?v=qE_OwuilOew

I have been on several muscle relaxants including Baclofen, Kenadrin, Propranolol and Diazepam but unfortunatley non of them helped me. I have just undergone a 3 week intense Physical Therapy program and the spasms have reduced ever so slightly although they are no where near fully gone.

Are you on any muscle relaxants at the moment? I know of quite a few members who have been on muscle relaxants and they have worked well for them.

I understand how scary it is and if you ever want to talk I am here for you.

Pain free hugs
Alison
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Old 08-13-2008, 11:20 AM #4
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Default Thanks so far

Thank you for the replies so far. I am not on any medication yet for these movement problems. Until the process of going through various further neurological tests has been completed, nobody is prepared to prescribe anything even for symptomatic relief. I have no issue with this - if there is something else wrong I would want to know. Although it is really tiring, until the right tests are all done by my neurologist to rule any other conditions in or out I can wait - it doesn't help if symptoms are masked by drugs.

I am interested to understand why docs (including one so-called CRPS specialist) can say that its not possible for CRPS to cause such severe or widespread movement problems when it seems to me that there is both reputable, published medical and annecdotal evidence to say that it can.

That is why I am so keen to hear from anyone else with expericence of such severe and widespread problems where they either believe or have been told that CRPS is responsible. It makes you feel as though you are going mad when they seem to want to ignore the possiblity in spite of the evidence out there.

It would be nice if they could get a move on with the testing right enough!!!
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Old 08-14-2008, 08:57 AM #5
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Default They Do Not Know What They Are Talking About!!!!

Quote:
Originally Posted by Gymjunkie View Post
Thank you for the replies so far. I am not on any medication yet for these movement problems. Until the process of going through various further neurological tests has been completed, nobody is prepared to prescribe anything even for symptomatic relief. I have no issue with this - if there is something else wrong I would want to know. Although it is really tiring, until the right tests are all done by my neurologist to rule any other conditions in or out I can wait - it doesn't help if symptoms are masked by drugs.

I am interested to understand why docs (including one so-called CRPS specialist) can say that its not possible for CRPS to cause such severe or widespread movement problems when it seems to me that there is both reputable, published medical and annecdotal evidence to say that it can.

That is why I am so keen to hear from anyone else with expericence of such severe and widespread problems where they either believe or have been told that CRPS is responsible. It makes you feel as though you are going mad when they seem to want to ignore the possiblity in spite of the evidence out there.

It would be nice if they could get a move on with the testing right enough!!!

Sure does suck what you are going through, but can we ever relate. I have the same problems and have had them for about 6 out of 8 years. The docs that are telling you it cannot be widespread are NUTS! RSD/CRPS will mirror itself to other limbs. I started 8 years ago with RSD in my left hand and arm. Now it is everywhere. And yes I too have been told it could not spread. The so called Doctors have yet to walk in our shoes I suspect.

One thing you could ask them is if it could be peripheral nueropathy? This is a nerve disorder that can follow RSD and it is the worst. For me it feels like I am walking on glass most of the time and my legs are in constant turmoil. They never stop aching and spasm like there is no tomorrow. If I have learned anything over the last few years than it is to question everything, ask for proof when they disclaim or claim a diagnoses than always seek a second or even third opinion if necessary.

Doctors like to think that they have the "Midas" touch. And when things don't quite go the way they hope they will than try to rationalize it as the patients fault. i.e. faking, seeking attention, not following doctors order, etc.

Please hang in there and I know that you will find relief and hopefully soon. Stay here with us and we will help you through your bad days.

Chin Up... Mark
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Old 08-14-2008, 09:46 AM #6
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Hi Mark
Thanks for your reply. Given that there are so many neurological disorders where the docs can't give a diagnosis, can't understand what causes them and can't actually treat them it amazes me that they try to be so adamant that it can't be my CRPS. I didn't have anything else beforehand and nothing else happened afterwards so I reckon it would be a jolly big coincidence to simultaneously develop more than one rare neurological disorder!!

I am sure that if I had pain and other symptoms in my other body parts they would agree that it is CRPS but I don't have these - just the non-stop, major movement issues. It is tedious having to keep "discussing" this with the docs who seem not to be able to think or research beyond their own boundaries of knowledge.

Otherwise I am pretty chirpy actually. My pain is fairly well managed and my GP is open to trying different meds if things don't work. I do OK and I am looking forward to the delivery of a fancy new "active user" wheelchair next week. I know there are some here who see this as a very negative thing but not me - I have no prospect of any rehab with the current movement problems and I am not going to sit around for the rest of my life and do nothing. It will give me back independance and mobility and let me enjoy stuff again. It is a great freedom and I just can't wait.
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Old 08-14-2008, 12:39 PM #7
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Teeth Just Stick To The Speed Limit!

Do not let others persuade you one way or the other. If a chair is necessary for you to regain mobility and hopefully increase your morale a bit, than by all means - GO FOR IT!

In fact I was checking them out yesterday. Some pretty sharp looking little buggies. The biggest problem I have with chairs or any other medical assistance device is my size. I am quite tall and most are made for the average. I have a brand new walker in my garage that I paid almost 400.00 for. It sits there collecting dust beacuse it is not built for someone like me and if I use it I am really hunched over (kills the back).

They tell me it is one of the largest they make but for who I ask? So for now I hobble around on cains.

I sure do wish I could offer you some sort of suggetions on the leg shakes and tremors, but even my own doc kinda beat around the bush with that subject and I have never been giving relief. I may be on massive doses of morphone all the time, but it just doesn't hit that area or help. If I come across any info that might be of interest to you, I will pass it along for sure.

Chin Up! Mark
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Old 08-14-2008, 05:38 PM #8
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This may sound a bit random, but full body involvement of any symptom usually indicates that it is mediated by central processes- like the brain. With that in mind, have you had any studies of the brain? Either MRI or CT, looking for tumor or disease process in the brain or central nervous system.

My schooling is in neuroscience, and this sounds more like a motor disorder than a pain issue almost. But while doctors are trying to figure this out, and don't want you on meds, there is one great thing that you can start doing for yourself! The best thing that I have ever done for myself (and this is coming from a 25 yr old woman diagnosed at 12 after a gymnastics career who has had 15+ revision surgeries on her spinal cord stim and would do them all again in a heart beat!) is learning to meditate. I went through this class called MBSR- Mindfulness Based Stress Relief, and it was better than anything I had done previously.

It taught me how to learn to relate with the pain and illness and not partition myself off from it, but embrace it, because when I was trying to defeat it I was only trying to defeat a part of myself. The illness is part of us, and by accepting that we get stronger, not the illness or the pain. And meditation is a way to get close to the pain and the stress and the things that are tearing us apart. It's kind of like keeping your friends close but your enemies closer. You need to know it in order to get around it and not let it destroy your life. And meditation just keeps you peaceful and happier. Your emotions affect your pain levels a lot less. (And there's actually a neurological basis for this, which is so cool! You should see fMRI studies of the Dalai Llama!) Anything you can do to calm down the Sympathetic nervous system is a good thing, and meditation does just that! If you want book recommendations or things like that, just ask. But this really is something that you can do to make a difference in how this disorder, or ANY illness affects your life. And you can make it totally your own. If you're christian, you can work it into that. If you're muslim, jewish, buddhist- whatever- you can do it however you want. It has nothing to do with religion.

Hope this helps!
Lynn
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Old 08-15-2008, 07:33 PM #9
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Default I can relate

Hi Wow was I glad to read what you wrote! I erased all that did not pertain to me, but left all that did so you can see there is someone out there who is going through a little bit different version of what you are. Below is what you wrote and then my response.

You wrote:
I started to get spasms and tremors in my affected leg in mid-March which spread over about 2 months to my whole body. The movement problems have continued to get worse - affecting more and more of my body, becoming more intense and more frequent. I have constant muscle spasms everywhere, sudden jerking, tremors, spastic posturing, weakness, dystonia,

movements but my body is constantly moving in an involuntary way. ) makes them jerk and spasm uncontrollably. It is also worse if I am upset, worried or nervous. It continues to get worse virtually by the week.

I am going through various neurological tests to see if there can be another neurological explanation
can't cause such widespread movement disorders beyond the affected limb. My reading of the medical literature would suggest otherwise - I can accept that it might be very rare but it does seem possible.

extreme kind of movement problems I have. I feel as if I am going crazy . Please, please if anyone else has similar symptoms
presenting like this share your experience with me.

Gymjunkie[/QUOTE]

my response: I can relate to all of the above! I am curious to how old you are. I ask because I am 36 and have been dealing with spasms since I was 31. I have palatal myoclonus and at at 35 got spinal myoclonus. The spinal myoclonus has resulted in the involuntary version of what you describe your legs to do, however my condition is bellybutton up. So I get horrible spasms in my arms, shoulders, neck, back, stomach. It results in constant and very visible external spasms of my arms etc. It has been devistating to me. Only 1 in 3 million has this spinal myoclonus, but check it out maybe you have this not CRPS (sorry don't know what that is) and yours is showing up in the legs while mine in the arms etc. It took them 4 years to dianogis this. The first doctor laughed at me when I said I was having neck spasms and my palatal myoclonus was spreading. I have found no medication helpful at all. The whole thing has been so challenging. I am in cronic spasms and cronic pain. My only glimmer of hope that maybe can be yours too is that I have started Biofeedback. I also go to PT two times a week. The PT does cranial sayprial (wrong spelling- spelling as it sounds) work to slow my central nervous system. I suggest you look into these too things. Find out if your spasms are the result of over firing of your brain neurons and if they are then I am almost 100% you will get some help from this- only because I did and NOTHING else was working. Of course I do not have nor do I know what CRPS is sorry so I am not even sure if it relates to the over firing of brain neurons. Anyhow, good luck. Sincerely, Topsie
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Old 08-16-2008, 02:27 PM #10
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Default Hi and another thank you

Hi guys
Mark - I had my wheelchair made to measure and deliberately picked one that has some adjustability in case my condition deteriorates going forward and I am unable to balance myself as well as I can just now. I am using a smaller, specialist company in the UK so the completely made to measure chair is actually going to cost less than going to one of the big manufacturers. I am small but have long legs so I'd have struggled with a standard frame size. I guess it depends on your budget but even some of the big manufacturers have so many frame options that you should be able to get a good fit.

Lynn
I have no doubt at all that there is CNS involvement with the problems I have. With CRPS, it is possible for the CNS to become involved in addition to the various peripheral nervous systems and motor disorder is an extremely common feature of CRPS - just not in such an extreme way as I seem to have. I have already had an MRI which was normal hence the next load of neuro tests that I am waiting to go in to hospital for. I think for most people with CRPS its fine to focus on the disease from a pain perspective but it does involve much more than just pain so for me that focus isn't such a help.

Topsie
I am 37 so only just older than you! I will check out these interesting conditions you have. CRPS is the "new" name for reflex sympathetic dystrophy which is the neurological condition this board is all about. I have a definite diagnosis of CRPS but there is nothing to stop me having two things going on at once!. CRPS causes a wide range of symptoms - everyone gets different combinations and severity of these. For some people it seems to fade away or go into remission and for others it progresses unremittingly in spite of treatment. It involves peripheral and central nervous systems so I guess anything in possible in terms of brain and motor neurone involvement.

Thanks for the continued input guys - I'm off to look up Topsie's stuff to see what the symptoms look like for those joyous sounding diseases!!
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