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 07-03-2007, 12:57 PM #1
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Default Like A Fish Out Of Water

Here I go again! Another issue pops up. As if everything else going on isn't enough to deal with. Okay here goes!

I go to bed and just about ten minutes or so into resting my lower body starts jerking. Usually my right side is the dominant one and than it eventually moves to the left side. Sometimes the jerks are so severe it jumps my legs almost out of the bed. Than as the night progresses it moves up the body and into my neck and shoulders. Also it affects my eyes in a strange way I cannot explain even though they are closed. It is almost like someone is getting ready to slug me in the face with something. Sounds crazy I know but that is the sensations I get in the face especially around the eyes. This uncontrollable jerking is driving me crazy. I talked to my Doc a while back and she ruled out Myclonic Jerks but it has gotten worse and deprives me of sleep.

Does anyone else experience this and too what level and do you have any idea what it might be? I currently take the following meds before bed.

60mg Cymbalta
60 mg Morphine
250mg Zonnegran

That's it. I have been on the same scripts and the same doses for about 9 months and the jerks have been around for about a year with progression. Any help at all would be great! I know someone else can relate.

Chin Up!!! Mark
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Old 07-03-2007, 02:14 PM #2
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yep Mark,

another FUN RSD symptom. Mine gets to the point where it looks like I am fighting a ghost (or being electrocuted) who then ultimatly wins before throwing me on the floor. However, these have been more under control for the last year or so, firstly through increasing diazipam and baclofen at night and adding in the Benzhexol. I also find that certain positions will set the jerks off far more. (and now I have cushioned cot sides to stop me falling out of bed).

Why not try some muscle relaxants??

Hope you are doing ok

Love ya

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Old 07-03-2007, 02:17 PM #3
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Default Hi Mark,

Read my post about my sleep apnea test. I talked about the jerking in it. I jerked so bad all night that I have to go back and have the test done again. I didn't go into what they call REM sleep.

I went to see the Immunologist today and none of my test are in so I don't know anymore then I did when I went. I do know it p***ed me off that they didn't call me to cancel my appt. It is 30 miles each way there.

Back to the jerking. I have them very badly. I jerk so bad that I am out of that bed and on my feet because of it. The immunologist thought maybe Restless leg but he said it doesn't usually effect the upper half.

I am very interested in what you find out might be causeing it. I am thinking my next Dr. will be my Neurologist and maybe he will have some thoughts on it. I just don't know if it's part of the RSD or not but the people that did my sleep apnea test didn't think so.

I'm glad to see you posting but I hate that you aren't doing good.

Your friend,
Ada

Last edited by dreambeliever128; 07-03-2007 at 09:26 PM.
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Old 07-03-2007, 03:09 PM #4
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hey Mark,

I get this too! My body jerks and the worst areas are also my legs. It happens with my chest (I was having severe chest pain to the point I was sobbing and I got giant spasms that jerked my chest every which way the night before last!), my eyes (bad twitches!! ), and sometimes it also happens with my arms. My rheumatologist said I have bad tremors on the left, but I also deal with it on the right when walking... I can't walk unassisted because the tremors are so bad... but when I am staying still trying to relax it happens when I am not even trying to move.

ENOUGH to make you feel NUTS!!

I hope you are getting through the day with the nasty mouth/ throat allodynia and burning! I know how it is...
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Old 07-03-2007, 03:11 PM #5
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Quote:
Originally Posted by frogga View Post
Why not try some muscle relaxants??
This is a good suggestion! I am going to ask my neurologist about Baclofen- I hear that is good for RSD. Are you on any muscle relaxants yet??
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Old 07-03-2007, 10:26 PM #6
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wow. i had the EXACT symptoms and it looked like i was seizing. i had a brain MRI which came back fine. the sypmtoms have really slowed down since i quit taking amitriptyline though. no more jerky jerky. but it was awful. it would wake me up ~ almost like having one of those falling dreams.
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Old 07-04-2007, 02:00 AM #7
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Question hello..

http://sleep.health.am/sleep/more/pe...ts-in-sleep/#5

Periodic limb movements in sleep (PLMS) is a disorder of unknown etiology, in which patients involuntarily kick their limbs (most often it is their legs) in short, clustered episodes lasting between 0.5 and 5 s and occurring about every 20 to 40 s. The kicks are often accompanied by arousals. These episodes occur repeatedly throughout the night. The myoclonus index (MI) represents the number of kicks with arousals per hour of sleep.

PLMS and RLS may be associated with some medical conditions, including uremia, anemia, chronic lung disease, myelopathies, and peripheral neuropathies. Use of medications, such as tricyclic antidepressants and lithium carbonate, and withdrawal from benzodiazepines and anticonvulsants may all induce these disorders. Other movement disorders that should be differentiated from PLMS include the hypnic myoclonus, nocturnal leg cramps, and jerks associated with long-term use of l-dopa.

Furthermore, many patients with PLMS also suffer from other sleep disorders, including SDB and REM sleep behavior disorder.

Last edited by Sandel; 07-04-2007 at 02:08 AM. Reason: added
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Old 07-04-2007, 05:22 AM #8
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I had those major knee-yourself-in-the-chin-in-your-sleep muscle spasms too, for many years. They started within a year of getting rsd, and they continued for 12 full years. They finally went into "remission", I guess you'd call it, about two years ago. Man, what a relief... I hadn't slept so deeply in ten years.

But they are coming back. I have noticed 10-12 episodes in the last week, and Michael says I am back to kneeing him in the back every night. Luckily for him, I only sleep four hours out of 24, so he gets plenty of rest when I'm up.

Mark, you really should try a muscle relaxer. Baclofen, as has already been mentioned, is the one I have found to be best for me. I wish someone would give me valium/diazepam, though... I am sure it would work even better.

Good luck, I hope your legs calm down and you can get some decent rest. Lack of sleep just makes the rest so much harder to deal with. Need some spoons? Take mine.

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Old 07-04-2007, 04:38 PM #9
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Default Baclofen helped with my jerks and spasms

Mark & IHH,

I currently take 20mg of Baclofen 3x-day, which helps alot. Hopefully, it will help you too.
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Old 07-05-2007, 07:41 AM #10
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Help

Mark,

I don't believe we have spoken before, however I have enjoyed alot of your posts and have found myself laughing so hard that it brightens my day.

I did a little research on myoclonus, as a former nurse your sx sure seem like that would be a likely answer to part of your problem. Did your Doc do any tests or just dx without any? Myoclonus can develope with epilepsy, ms, restless leg syndrome or it can even be hereditary. It also seems that these jerks are brought on when taking a drug such as Cymbalta. These are just educated guesses on my part and what I found researching. Also as far as your eyes are concerned you could have a condition called blepharospasm, or in other words spasms of the eyelid and or eye area. I hope this helps you at least a little.
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