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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Anyone try Lyrica?
Oct 4, 2007
Hi,:wave:
I was wondering if anyone tried Lyrica? and if so, what did you think? My sister has fibromyalgia and swears by it. I know it is for diabetes nerve pain, but does it help us folks with RSD? I know it's in the Gaba family right? Please send me your thoughts!!

Kim
I started Lyrica in April. My review is definitely mixed. Did a good job on the pain. At one pont I was down to a 3..........but the side effects were worse that the RSD. Swelling.....felt like the pillsbury doughboy :) and a miserable headache.............when we decrease the dose, the side effects decrease. So did the pain relief.

I tried Neurontin when it first came out. It fried my brain more than the RSD. All I could do was mumble & stumble. Lyrica is a improvement........for me. I added accupuncture which has helped. Hopefully I do not have to go back to narcotic's. I do this with exercise (mild stretching and aqua exercise) relaxation tapes & exercises and of course coming here. For now it's working.

FOR JON!
Hope your session goes well! Having a witness also helps...............(Joke)

Judie
[QUOTE=judiev331;3241288]I started Lyrica in April. My review is definitely mixed. Did a good job on the pain. At one pont I was down to a 3..........but the side effects were worse that the RSD. Swelling.....felt like the pillsbury doughboy :) and a miserable headache.............when we decrease the dose, the side effects decrease. So did the pain relief.

I tried Neurontin when it first came out. It fried my brain more than the RSD. All I could do was mumble & stumble. Lyrica is a improvement........for me. I added accupuncture which has helped. Hopefully I do not have to go back to narcotic's. I do this with exercise (mild stretching and aqua exercise) relaxation tapes & exercises and of course coming here. For now it's working.

FOR JON!
Hope your session goes well! Having a witness also helps...............(Joke)

Judie[/QUOTE]


Hi Judie,:wave:
Neurontin does me like that, so i only take it at night to sleep:yawn: . Forgive me, if I'm incorrect, but isn't your RSD all over like me? I may be thinking of someone else. Might be the Neurontin!!:dizzy: HA HA. How did you go off the narcotics? I need advice with that as well. I really want to, but when I have a flareup like last week, it makes me rethink that. It scares the bejesus out of me(the pain):( If you can do it, it gives me hope at least that I'll be ok.
Acupunture really helps? I thought about that and might look into it. Does Insurance cover it?
I'm just trying to find alternatives to the narcotics. Like we have been talking about, it's awful to deal with the Dr's and everything. I just have a doc that springs it on me without warning and seems to think I can just cut way down all at once. I'm talking to him about it when I go Tuesday. I'm NOT leaving the office until he explains what he has in mind. It's like he for gets what he tells me from visit to visit. Like, I'll probably go next week and he will have forgotten all about it, but I'm reminding him and going to be very persistant with questions and points to talk about in hand on paper and I'm going to talk about EVERYTHING on there and insist he address all my concerns. He stresses me out. I can go in sometime and he all nice and doesn't change anything, then the next time he's Dr. Jekyl and is kinda mean and says stuff like, "I can't keep giving you these meds", "I'm getting too many patients" and stuff like that:confused: without any explaination, and leaves the room! the the next time, he all nice again. I can't figure him out. I'm going to pin him down and both of us agree on the same thing, SPECIFICALLY!!. I also have an appointment with another PM that Friday to get another opinion on everything.
I don't know if I want to try Lyrica, sounds scary. I've also gained so much weight now, I don't need to blow up anymore. I don't know why my doc wants to mess with me, I'm stable on things and meds now. If he insist about the narcs, then I'm insisting on a S L O W taper or something. I would LOVE to be able to be like you and not take them, That would be a dream come true.
We will see I guess. Sounds like Jon and I are at a crossroad,with Doc's, but different ones.
Any advice is greatly appreciated. I know what you mean about this board, it's so helpful to talk to people in the same boat doesn't it? and you learn so much here!!:angel:

Kim
[QUOTE=judiev331;3243001]You do not want to quit narcotics the way I did. I was major league depressed for a long time (denial is awesome). Then one day in April I hit bottem and did not want to struggle with all of this anymore, I overdosed (intentionally) Had a guardian angel that called & insisted my hubby get me to the phone (I think it was the first time she's ever been that assertive) I won't go into the gory details but I woke up 3 days later in ICU. Not totally clear yet, they transferred me to a psych hospital. There I went through 5 days of HORRIBLE diarreah. Didn't want them to put me back on narcotics.......so Lyrica was started with instant relief.the pain was still ok....about the same levl as the narcotics. The trouble came when he decided to double the dose.......major swelling & headache. Though We've lowered the dose the swelling seems to be here to stay.

for me...if it anin't broken don't try & fix it.

yup, I am full body!

Judie[/QUOTE]

DANG Judie, I'm sorry about that. I had no idea or I would have not brought it up. Please forgive me.:rolleyes: :( You will be in my thoughts and prayers from now on. I'm glad you are ok now. I can relate, I've been there where I thought about it, but never acted. This disease is just horrible isn't it? I've read about people doing that because of RSD. Again, I'm SO SO sorry. I'm glad you had that gaurdian angel as well:angel:
I'm terrified of ODing, I write down what time I take mine EVERY day so I don't get all confused and screw up. The neurontin makes me very forgetful, so I don't take any chances. It's a time release that will last up to 12 hours max, so thats why I write down the time. In the beginning when he put me on it, he said it will wear off about 8 hours, but I would wait longer just in case because I look up everything they put me on and it said MSContin last 12 hours. Once I noticed on my script that he wrote to take 1/2!! On a time release? They tell you not to break them or crush them, etc. Thats a good example of how crazy he is sometimes. You can understand my anxiety huh? about him.
Tuesday is getting closer and I'm already starting to have anxiety attacks:eek: I'm telling him about it too, how he makes me. Tuesday will be very interesting because I'm going in there will both barrels so to speak. I have been rather meek about it until now. You and everyone here has made me stronger I think by encouraging me and suggesting different things to say and do. Thanks.
Well, I've been on here all morning and my fingers are swelling, so I'll talk to you later!

Kim
[QUOTE=jodom1979;3241591]Hey Judie,

Yeah, My better half has always stood by me through this whole ordeal. I have to give her mad love for everything she does... You know as the saying goes... "Behind every good man is a ticked off woman who doesnt get no credit!". But she has always advocated for me on things when I got into tight spaces with the IME docs and my medical treatment. I guess it adds to the credability factor of having a 3rd person looking in on me. My mental function was really horrible there for a while and she was my brain when it came to sorting things out. The first "cocktail" of drugs really mushed my head out.

But since last month doing a complete change up in meds everything has changed.. im back.. Im doing alot of my old things... playing my xbox360 and spending time with friends again... good stuff.

Jon[/QUOTE]

Hey Jon!
Glad to hear your back doing some good things! I feel like 90% of the meds I've tried took part of the brain. The "kids" would call them brain Farts :rolleyes: ( hope that doesn't get me censored) Since I turned 65 this year........it's now called "senoir moments" :mad:

It's all RSd related. I've given up complaining about the "Normal" pain....and just share it when it gets bad. After this many years I can't stand the pain discussions anymore.

Hope you know we're among the real lucky ones.......those who get the love & support.

I play solitare & with my game boy when I need to zone & can't read.

((((((((((((((hugs))))))))))))))))))))))

Judie
HI I tried to reply to a thread on Nurontin and Lyrica, for RSD patients....
Is there any real differences in the two drugs... I have stage 4 RSD, and the Nurontin did my little to no good..... I am getting desparate....

Help thanks...
How long have you been on the neurontin? It is a medicine that takes time to really start feeling the effects from. My RSD was past all the stages and I've been on neurontin for almost 4 yrs now and couldn't live without it. I tried Lyrica but it didn't nothing for me but then again he started me on a low dose but I stuck with the neurontin which is also cheaper. Sometimes you just got to give it a little time to build up in your system to start feeling the effects of it.
My doctor basically informed me that there wasn't a comparable dosage of Lyrica that would match the amount of Neurontin I need to take. I take a very high dosage of Neurontin which due to that I've never needed to take no real heavy naracotic medictaton. The only other medicine I take is Norco 10-325 mg 4 x a day, Soma 350 mg 4 x a day and Celebrex. I also suffer from arthritis and cervical dystonia which is severe muscle spasms in my neck. I suffer from nerve damage in my right arm from where it was broken into and severed the nerves. I suffer from nerve damage in my left hand where the turn signal went through my hand and left a hole in it and severed the nerves in it. I also suffer from nerve damage in my low back from where my pelvis was cracked in two different places which left a bone chip inside that is pressing on a nerve. My left ankle also suffers from damage done to it as well, all this happen due to a car accident I had when I was 19 which was 24 yrs ago.

I suffered for yrs before anyone realized how much nerve damage I had suffered from. Therefore, by the time someone diagnoised it the damage was done and irreversible. Due to RSD and cervical dystonia, I have now lost all the use of my left arm. It is not locked in a position where my left hand touches my shoulder and there's no way to reverse the damage. I have lost all but about 30% usage of my right arm, I cannot lift it no higher than my waist. But I have learned how to live with it and just take life one day at a time. I also glad that so far I don't have to take no heavy naracotics and have a lot of people who help me out when I need it.





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