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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Well after complaining about the Neurontin "kicking my butt" (making me want to spend my afternoons sleeping) they switched me to Lyrica.

Anyone have any experience with Lyrica? I start my first dose tomorrow morning.
Parrotmom,

I was on lyrica. It didn't do anything for my pain. I have heard of other people getting great results from it but I didn't. I've also heard of some people gaining weight while taking it. I never had that problem but I wasn't on it for very long because it didn't take any pain away. I hope that you have some luck with it and that it takes some of the pain away,even if a little bit. Better than nothing I guess.
Take care and stay warm,
Deanne
I'm a bit furious anyway, first my doc who seems to delight in causing me pain....then this prescription Lyrica 50 mg (1 week supply) and Lyrica 100 mg (starting after the 1 week supply is gone) both cost me $60 EACH! When I called the insurance co they said it was "non preferred"---

I hope it works otherwise it is $120 down the drain.

Did Lyrica make you tired?
[COLOR="Blue"]Hi,

The only time I've taking Lyrica is after surgery. I took it for the first time this past October and only for 2 weeks, but I have to say it helped the burning for the period of time I took it. I had severe burning right after the surgery and it helped that. I just had another knee surgery last week and he gave it to me again. This time I didn't get the burning I did after the last surggery, but I got extra, extra pain than after last surgery. He gave me 75mgs this time and 50 mgs last time. I don't plan on taking it for long....just for about two weeks. I've been pretty status quo RSD pain-wise for about 9 years since I got my pump so that's why I don't want to add something else into the mix for good. Just taking it for after surgery pain. And yes, it can make you tired and it does make me tired. I thought the Neurontin was much worse though, but I took that a long time ago so who knows? Good luck.

Sharon :)[/COLOR]
I was on Neurotin or as I like to call it...Moran-tin! Makes you feel like a real moran when you take it. I was immediately removed from taking it any further cause all it did was make me feel drunk, but no pain was ever reduced. Now I have been on Lyrice 750mg daily. I know it is a "huge" dosage and I have spokenn to the reps who have their eyes bugged out because I have exceeded the actually daily amounts, but it works. I take 150mg in the am then 300mg each at lunch and then dinner. I've gained weight, but don't assume it is due only to the Lyrica cause I take 4 other meds too that add to my gut. Yes, some people will find it helpful and others might not. It is like that with any medication you take. I feel that if I didn't have the Lyrica then who knows what might have helped. Of course, we have to go thru an extensive list of meds before our dr's find the right one to benefit each person personally. Hopefully this is helpful to you, but read up on each product. People will say that Lyrica is being prescribed for the wrong reasons when it comes to RSD. In fact, my dr has been told by me insurance company that I should be removed from all of my meds because they are not supposed to help me with my condition. Yeah right!

I was diagnosed 5 years ago with my RSD in my foot in which it has spread. Even though I don't want to take these meds it is a must in order to deal with my pain. I recommend Lyrica to anyone I would come into contact with.
[COLOR="Blue"]Hi Ben,

It's nice to see you around here :). How are you doing with the stim gone?

Sharon :)[/COLOR]
[QUOTE=sharon1030;4204745][COLOR="Blue"]Hi Ben,

It's nice to see you around here :). How are you doing with the stim gone?

Sharon :)[/COLOR][/QUOTE]

Hello!! Yes, it has been awhile hasn't it? Well, I am doing as best as can be. Since I have had the stim unit removed it has been a more painful experience daily. I try to keep a good attitude, but it's hard. Being in Florida with this rollercoaster weather we are experiencing its tough. One day it is cold and then the next warm.....my leg is just killing me. Personally, I wish I could give good news, but that is far and few between. So basically we take each day as it comes. How are you doing?
[COLOR="Blue"]Hi Ben,

It's definitely hard, especially when you're having a hard time mentally. I know that's when I have the most difficult time. If I can keep my head in a good place, I can deal with anything else. It's just a hard deal overall! I'm okay. I just had two knee surgeries; one in October and the last one three weeks ago. Trying to stay positive about that and whether it helped, but it's just HARD. Hang in.

Sharon :)[/COLOR]
Basically it is the same drug as Neurontin, just in a different form and name. Look them up on the internet and you will see that your doctor is just trying to get you to say the feeling is different. I used all of those and had the same draggy feeling all the time and actually would get to work and not know how I got there. These drugs are fine for someone who does not have to function, but for those who work or have to be alert they are a disaster. I haven't met many people who got any symptom relief from these drugs. I type for pain clinics and just about 90% say they are useless.
[QUOTE=Scrufysdad;4204765]Hello!! Yes, it has been awhile hasn't it? Well, I am doing as best as can be. Since I have had the stim unit removed it has been a more painful experience daily. I try to keep a good attitude, but it's hard. Being in Florida with this rollercoaster weather we are experiencing its tough. One day it is cold and then the next warm.....my leg is just killing me. Personally, I wish I could give good news, but that is far and few between. So basically we take each day as it comes. How are you doing?[/QUOTE]

It is so good to see you on the boards. I'm sorry things haven't been going better with your health. It's so frustrating when you feel that nothing is or will work to give you relief from this horrible disease.
Is there any other options for your pain relief? Are you able to get any other types of treatments?
I have family in florida so I always look at their weather. You guys sure have had a wierd year for weather. Hopefully since spring is on the way things will get easier for you.
Are you able to use some sort of heat when the weather is cold to help you get through the pain?
You are in my thoughts. I hope that you are able to find some relief.
It's great to see you on here again.
Take care and stay warm,
Deanne
Hello Parrotmom,
How are you doing on the Lyrica? It's been ages since I've been on here so I thought I'd come back for a while - Sometimes I find people's input helpful and optimistic, other times I find the info scary. I was diagnosed in 2007 in my left foot (RSD decided to appear after plantar plate surgery not done correctly). I've been on Lyrica 225's and I take 3 daily, along with Savella 50's twice daily. It seems to help quite a bit but I do hurt everyday. I haven't had any infusions, and I don't have a SCS. I need surgery that I can't have because of the huge risk of making the RSD worse than it is right now. Having it worse -- I cannot imagine life with it worse, so I am taking my doc's advice and not having surgery of any kind unless it's truly life threatening. My doc knows RSD well and he's been researching it for many years, so I believe I'm in good hands.
I hope things are good with you -- Will wait to hear from you.
I can't say that I would choose either one. I was on neurontin for over 6 months and I don't remember at least 3 months of my life. Maybe more. I also had to take at the same time every day or I would go crazy. If I didn't fill the script on time I would find myself at the pharmacy at 2am. I hate to think what the pharmacist's thought of me.

The lyrica just didn't work.

I had been on topomax in between and it has been helping me out lots.

The only thing I can say is that, everyone's body chemistry is different. Try each one. Lyrica will make you gain weight. Topomax will make you lose it - but you have to be careful of over heating. I overheat ofter since I live in southern florida and work outside. My water bottle has become my best friend. You can't cool off without it.

They all effect the same part of the brain, so you will have so sort of short term memory issues. I have been on these meds for over 7 years now. I hate when people look at me and say, wait til your old - well I am 29 and have the same issues as the 70 yr olds. :dizzy:

I hope I helped some.

Kat
[QUOTE=ParrotMom59;4196856]Well after complaining about the Neurontin "kicking my butt" (making me want to spend my afternoons sleeping) they switched me to Lyrica.

Anyone have any experience with Lyrica? I start my first dose tomorrow morning.[/QUOTE]

I have rsd in my ankle and leg and I am on lyrica now. I was on neurotin for 4 months and it was very hard on me, very bad head aches, and many other things. so the pain clinic switched me to lyrica with much better results and less side effects. I had a couple of nerve blocks that did nothing. For my condition, lyrica has worked the best so far. Every one is different good luck
You're right, everyone's body chemistry is different. That's what makes RSD so hard to treat. My husband started on Neurontin. It made him gain weight and have trouble with memory and concentration. So he tried Topamax. THAT made him totally depressed, slept all day, didn't eat or anything. Of course he lost weight, but that wasn't the way to do it! He is now on Lyrica, and that seems to be working the best. He also takes Strattera to counteract the cognitive side effects of the Lyrica and methadone. That has helped his concentration and reasoning powers a lot.
Sunny
lot of side effects of lyrica both did nt do nothing for me tryed everything
how does the methadone work i have tryed it all an nothing works for me
The methadone works well for pain control for my husband, but it has to be titrated up very slowly by someone who knows what they are doing. It also has some major side effects of drowsiness and constipation.
Sunny
I take neurontin and it also makes me want to spend my afternoons sleeping. However, after so many years of terribly broken sleep due to chronic pain, I have decided that this is a welcome side effect. I have actually been able to be quite productive in the hours after those neurontin induced naps and would otherwise have been in amplified pain earlier on in my day.

Of course you don't want to sleep through life...but consider whether better rest may enable you to have one.

Best wishes.
Hi, i've been on both neurontin and lyrica for RSD. At first both drug seemed to help with my pain. But after a couple months, I would start have bad side effects. now, i've been taken off all internal med's because of surgery for a Perforated Bowel and blockage. they cut out some of my small Intestine and colon. This almost killed me! I personally think these drugs had something to do with this problem. they gave me lidoderm patches that don't do a whole lot but i would rather deal with the pain than take these drugs. I have had bad results from them
I agree with you lyrica is a wounderful pain killer, I started taking 300 mg lyrica 4 yrs ago when i herniated my lower disc. However I would not recomend due to the fact that I have gained 30lbs and when I tried to stop taking it I experianced bad withdrawl symptoms. I could not sleep, I had no energy and, I had bad head aches. I was also taking 30mg oxy's and 7.5 loratab. I had no problem's when I stoped taking those but Lyrica bad stuff. Please check out the side effect warnings cause you could be condeming your self to a life sentence with this drug.
HI parrotmom, I thinkit just depends on the individual, I was on lyrica and it made me feel drunk or hung over, I switched to neurotin and got good relief for the rsd burn but did not with lyrica. I am glad to say since I had my stimulator implanted in dec. I am not on the neurotin either. I am still on percocets and the catapress patch though. good luck
kelly





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