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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)

Negative Results of stopping Lyrica?

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Unread 03-24-2013, 08:39 PM   #1
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Default Negative Results of stopping Lyrica?

A long time beneficiary of the remarkable collective wisdom presented here, I have not posted in some time. But I am in need of information.

I'd been taking 600 mg of Lyrica a day for years (along with seven other medications), but I wasn't getting any better. Indeed there has been a progression of new affected areas.

So I decided to slowly titrate off of Lyrica, and an immediate benefit was that, in rather rapid fashion, I lost 54 pounds, going from 219 lbs. last June to 164 lbs. by November, what I weighed back in HS (I'm 6'1'), and over those months I'd continued titrating down because my pain didn't get any worse.

But since the beginning of the year, my situation has deteriorated. Each time I have any 'trauma' (I twisted my wrist, so that has 'gone'; and then the other wrist mirrored its partner; I banged my knee; it's gone), of course my spread tends to tenaciously stick around.

Does anyone have any information in regards to Lyrica's efficaciousness in preventing new spreads, or, as I have indeed had 'trauma' occurrences which follow my spread pattern, am I just an unfortunate victim of coincidence?

(Wow, am I rambling. I took a Marinol pill today, and, well, that happens...)
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Unread 03-25-2013, 03:35 AM   #2
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Originally Posted by dshue View Post
Does anyone have any information in regards to Lyrica's efficaciousness in preventing new spreads, or, as I have indeed had 'trauma' occurrences which follow my spread pattern, am I just an unfortunate victim of coincidence?
I took Lyrica for about a year before it started to have less effect, and also started to give me some rather scary side-effects. I started getting electric shock type pains all over my body all night, on several occasions. They would literally make me jump with pain and I couldn't sleep... I saw my doc and he took me off them over five days. The shocks stopped pretty quickly.

As far as I'm aware, all the common meds for CRPS - amitriptyline, Lyrica and Gabapentin - are used to try and treat the pain from nerve problems, they do not affect the nerves themselves. My pain doc told me they would not prevent CRPS symptoms, flares, spread etc, but they were used to lessen pain and so aid function. Since I've been on all three in turn, my CRPS has spread from being initially isolated to my left knee to being throughout my left leg and foot, in my left arm, and in my right toes. The doc said this would have happened anyway if my CRPS was active and inclined that way.

There really is so little known about how and why CRPS works that all the docs are doing at the present time is trying to treat the pain and improve function. They can't stop it spreading or send it into remission by the use of drugs. It can go into remission, but there is no reason into who that happens for and who it doesn't. Treating it within six months and physio seem to be important in getting remission.

That's what I think based on reading a LOT of research papers, websites and talking to docs. Try not to second guess the CRPS, just keep on fighting as best you can, and I hope these new areas are just part of a flare rather than a spread. Bit yes, it sounds more like your injuries have allowed the CRPS into new areas, not that the Lyrica caused it. Not your fault either way...

Sorry to ramble!

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Unread 03-25-2013, 10:33 AM   #3
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I don't think that stopping Lyrica had anything to do with your spread. Unfortunately some of us just get spread and it is usually initiated by some sort of trauma (though not always). Mine spread after I got a lumbar sympathetic block to treat the RSD in my left ankle...started up in my lower back, then up to my neck, then down into both arms and hands, and finally to the front of my body. Sometimes these things just happen and there's really no one to blame.

Congrats on the weight loss...that's pretty impressive. I gained about 20 lbs when I went on Lyrica the first time, lost 10 of that when I went back to work, then gained another 20 after I had spread...and have now lost about 10 of that since being back at work again (and I've been off all meds now for about a year and a half). Of course...my starting weight was 85 lbs so I'm pretty happy with where I am at now and don't want to lose anymore because I fit into regular clothes now.

One theory in preventing spreads has been that if you place a Lidoderm patch on a new area of injury right away it can sometimes prevent the spread of the RSD to that area. Don't know about any scientific proof of this but several members on this board whose opinions I respect have reported this to be the case in their own experience. They apply the Lidoderm patch and start physical therapy type exercises and desensitization right away. It might be worth a shot next time and on any areas where the spread is most recent.
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