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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
Lyrica is an updated version of nuerontin. They changed a couple molecules in its chemical structure and slapped a new patent on it. Alot of people do swear by it. My PM did state to me at one time that it was superior to nuerontin.. I guess you could take that with a grain of salt or not.

Good luck on your appointment! Im going tomorrow and im bringing my better half with me and we are going to sort this whole thing out. It will be interesting to see how my primary sorts the events out.

Jon
Thanks for the info, thats what i thought. I know because it is new there is no generic. You have to watch the drug companies. When something goes generic, they put out a VERY similar medicine and slap a new name on it and say it's for something new, because they discovered a new thing to treat with it. They did that with Prozac. I guess I'll stick with what I'm taking. I was just curious about it since my sis was telling me about it. I'll also discuss with it my doc and also the new guy to see what they say as well. I really don't need a medicine that cost more, unless it is a wonder drug that takes ALL my pain away!!:D My insurance makes me pay $90 for non generic expensive stuff. Have you tried it? If so did you notice a difference between that and neurontin?
Hey, [FONT="Comic Sans MS"][SIZE="5"][COLOR="Blue"][B]GOOD LUCK[/B][/COLOR][/SIZE][/FONT] tomorrow, ok? Let us all know what happens. Give em heck!! (just kidding);)

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
Hi! Seems we all run circles around the same pills! It's like sooner or later we've tried all the same! I didn't have any luck with Lyrica, but it could have been a dosage mix up. I am on 3600mg of Neurontin daily, and it works great on the legaches. Good luck! LD
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
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=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
Kim,

Nothing to be sorry for! I've told my story before & this is my safe space. We have to validate each other (and talk when we fell someone is heading wrong) If telling my story will help.........I'd shout it from the roof tops. I always had the "thought", never thought I'd act on it. I thought I was in controll. Wrong! I should have been in therapy along time ago! I reccomend it for anyone coping with this monster. When you see the doc.......make sure the barrels aren't loaded:jester: Your in my prayers.
[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
hey Judie,

Wow, im the same way on pain now. I keep my mouth shut on normal and only speek up when it gets bad. Like everyone here I just wish there was a cure. I dont like depending on meds. Ya, I have brain farts daily. Catch me in the morning and i couple pass as a mental reject... Im sooo thankful to my docs and the people here. I kinda feel like I owe the boards for everything they have given me. My WHOLE treatment plan is bits and pieces of everyones ideas, and feedback here. Theres always tips and tricks to be learned. The latest and greatest was with the lido patches and the knee. I cant remember who posted how they cut them to stick but it worked awsome. Good stuff!lol

Jon
Hi Jon,

Doesn't matter if we remember who said what, when.................we all have the dysfunctional brain....LOL! This is one place I can go where I don't have to worry about that! My family blamed the narcotics for the memory problems. I remember getting mad at my daughter for not telling me something....well she gave me time place & what was going on.............boy was I embarrassed :o From there on on treaded very carefully. Have to admit....I often pretended to "know" things I hadn't had a clue about. I still do it! with NO narcotics. Though now about 90% of the time I laugh and say " say what?? not stored on my memory bank." Seems funny writting it here..........great to have a place where these things aren't odd & can be chuckled at!

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

Judie
[QUOTE=ld3340;3241507]Hi! Seems we all run circles around the same pills! It's like sooner or later we've tried all the same! I didn't have any luck with Lyrica, but it could have been a dosage mix up. I am on 3600mg of Neurontin daily, and it works great on the legaches. Good luck! LD[/QUOTE]

Thanks for the info, I'm on neurontin and it does help, so I'm probably going to leave things as they are with that sort of med. WOW I'm not on that much though. Maybe I should ask for an increase if it helps that much. I go to my PM on Tuesday and I'm discussing meds anyway.

Kim
[QUOTE=judiev331;3245249]Kim,

Nothing to be sorry for! I've told my story before & this is my safe space. We have to validate each other (and talk when we fell someone is heading wrong) If telling my story will help.........I'd shout it from the roof tops. I always had the "thought", never thought I'd act on it. I thought I was in controll. Wrong! I should have been in therapy along time ago! I reccomend it for anyone coping with this monster. When you see the doc.......make sure the barrels aren't loaded:jester: Your in my prayers.[/QUOTE]

:angel: Thanks Judie. LOL on the barrel thing. Tuesday is growing near and I'm getting very anxious. But I'm going to have support when I go. My grandson's MOM is in town from Florida and she is going to go with me on Tues. She's looking after her grandmother, but she has offered to go with me to my Dr. visit to voice her concerns in regards to how upset I've been about his tactics and treatment plan, which is non existant. It always helps to have someone with you for moral support and another voice on my concerns about him. She's going to just stright up tell him how the pain increases with the reduction of medicine. That he HAS to come up with something else!!!! That I have told her via emails and phone how horrible its been. He doesn't seem to listen to me very much, so
We'll just have to see what happens. thanks for the wish too, I'm going to need all the positive thoughts I can get!!

Kim
I'm on Lyrica and have also had mixed effects. I started it after my major "fix everything structurally wrong" surgery and it helped dull down my nerves all over. The downside is that I noticed a rapid weight gain, increase in forgetfulness, random bouts of being extremely sleepy (not just tired and very scary when driving), and having some difficulty with coordination. I take Lyrica along with a regimen of narcotic medication. I'm working on getting my spinal cord stimulator figured out (having a redo surgery on Nov 2nd) and I'm hoping to decrease the meds all around, but I think the Lyrica will be a permanent part of my regimen. Because all of my meds have increased in the past year, I can't tell what side effects from the Lyrica have decreased/increased...I think I've just learned how to manage everything better.
Hi Psyc,

All the ^%&*@?? medications have the side effect of weight gain. If I gain any more I'll be trying out for the Goodyear Blimp :D The Lyrica really does a number on my appetite. I usually do not eat alot...........now..........I could devour a whole pizza! before it was one.........maybe 2 slices. If the accupuncture keeps working I'll see if I can lower the dose & maybe get rid of it. ( not without the doc, of course)

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.
Happy New Year!

I've been on the Lyrica since April. at low doses the side effects are minimal and pain relief equivalent to the narcotics I took. The nerve pain is lessie the real bad burning. Now it's down to a warm to hot heating pad and not all the time.

As for the Neurontin...it pre-dated Lyrica. So I guess we could call Lyrica the "new & improved". NOT!! just different side effects....for me. The neurontin messed with my head.........I was incoherent. But I was also on alot of other stuff & getting blocks. So who knows.

Hugs

Judie
I did a trial of lyrica back in july/aug and it was like a wonder drug for me! :D It stopped they numbness in my legs, seriously cut back the night sweats I have, helped cut the pain a little bit but not much at all and it also stopped the electrical zapping inside that I feel way too much at times. I had no side effects other than some mild lightheadedness for a few days then I was fine. I was only taking 2 50mg a day, 1 when I got up and the other at night. The really sad part is how much the darn thing costs!! I found out it would be $178 a month! Yeah, that is money I don't have and will never be able to afford. Now since they've accepted it to treat fibro now, it won't be going generic for another few years. If they hadn't done that, it would have gone generic this year or next at the latest. *big sigh*

It is the only drug that actually helped me. I've tried every antidepressent out there, neurontin and cymbalta. All the antidepressents and neuronting turned me into a raving lunatic, I mean that quite literally and cymbalta gave me horrible, sharp, shooting pains in my stomach. I don't need more pain from a drug on top of what I already have! lol

Hugs,

Karen
I have been fortunate with drug coverage....up untill medicare (65 type) took over. I reached what they call a "coverage gap" you pay the co-pay (on any drugs they cover) they get to add up the whole amout and when you hit 2500 then you pay the whole thing! Great if your not on any meds. I have to quit my B'ing. Lots out there have it worse. Sounds like your one of then. What about those prescription help plans? Like the one Montel Williams is always advertising? Would they help??

I know you've probably tried most options......I feel bad. Big gentel hugs.......
There needs to be something to help chronic pain patients. The monumental tab is bad enough, then you can't get certian drugs approved because your daen diagnosos does not match!

Hope the new year brings you .........all you wish for!

Judie
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.
Yup Judie, I checked all that out and hubby makes too much money for me to qualify for anything. *Huge sigh* Yeah, we make so much money we can pay everything, NOT!! The thing that gets me is they use the GROSS income not the NET income. The gross is not what comes into the house and pays the bills, it's the net income!!! I think it's seriously unfair and like with the wc system, they need to change it big time so people like me can get some help when they need it!

*Big Hugs* Rayefaye! Good grief what a horrendous amount of damage was done in that accident. Wow, you're lucky to have lived! It's very unfortunate no one realized how much nerve damage you had suffered. I'll be hoping you'll be able to maintain what you take to keep it all more or less under control then. I don't want to hit the heavy stuff myself yet. I have too many more years to live yet and if I take that now there'll be nothing left for me in a few short years. Luckily though I'm full body I manage on vicoden 4 x's a day, though after 2 yrs now, I need to finally up it to 10mg from 7.5. My body is good and I feel lucky it takes so long to get used to a dose and all.

Hugs,

Karen
I was told I was very lucky to have made it, I was hit in the side by a large vehicle doing about 60 mph and I was in a 1970 Ford Pinto. Even with all the pain I suffer now doesn't even compare to the pain I woke up to in the hospital three days later. So for me I have a very high pain tolerence what is a 10 to most is on a 1 to me. So that's one good thing I guess that helps me out now dealing with it all. I also have a very good doctor who is about the same age as me so therefore, we can age together:D
Yup, you have the right person! I thought it had traveled every where it could! Lately it's getting into a few extra spaces!!! I'v shared my story here before.......I came off the narcs quickly. I always harbored the feeling that if it ever got bad enough I'd do a "Kavorkian". The depression always hung around the edges........and one day snuck up and blindsided me. I won't go into the gorey details.............just alot of meds and I came close to not being here. The rapid 2 3/4 day ICU detox was fine.........I do not remember it. The next5 days of detox in a psych ward wasn't easy but I did not want to go back on the narcs. That's when the Lyrica trial started. You want to detox.........do it in a hospital under the supervision of a pain doc. There are new drugs out there to help make detox easier. A pain doc could also start you on other meds.

From personal experience......I was so afraid of the pain increasing, I did mot want to totally give up the narcs. Now this is all hindsight........didn't know it then.

Ask as many questions.....I am brain dead right now...............and my hand is hurting.........so I'll soak it.

weight gain.......I gained over 100 lbs (13 years) up 30, down 20. My theripist told me the average chronic pain patient gains aprox 10 lbs a year!

Big gentel hugs

Judie





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