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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Lyrica?
Mar 11, 2009
Hi everybody,

So I saw my pain doctor today and he really wants me to try the lyrica again. I tried it for a short period of time back when I was first diagnosed with rsd/crps. It took away a little (I mean little) bit of the burning sensation away but none of the actual pain. I wasn't taking anything else at that time either.
I did have a problem with the lyrica because it messed with my birth control method and I became pregnant and miss carried before I even knew what was up. Ever since then I have not wanted to take it but my pain doc thinks it will help me.
Does anyone out there take Lyrica? What has your experiences been with it? I've heard about weight gain and I'm told that I can't gain weight because my leg won't stand an extra 30 or 50 pounds. Does it really make everyone gain weight?
I just want to know more about it. I'm now taking 90 mg time release tabs of morphine along with hydrocodine and soma everyday.My pain doc thinks that since I'm getting pain relief now that maybe I will see more of a difference with the lyrica now.Any advice would be great.Thanks ahead of time.
Stay warm,

Deanne
Re: Lyrica?
Mar 11, 2009
I took Lyrica for about a year. It was the only drug I had taken up to that point that didn't turn me into a monster. Neurontin and any kind of antidepressant changed my moods to monster in nature. Cymbalta gave me sharp,stabbing,shooting pain in my stomach about an hour after I took it. I certainly don't need any MORE pain so I stopped taking it after a week, same as all the others.

Lyrica didn't do that to me and the only side effect I had was some lightheaded/dizziness for a few days. It didn't help my pain either. I don't burn enough to get any effect from it to help that part. Lots of others who take it say it helps their burning from a little to a lot. It is true that you'll most likely gain weight on it. Except for me.....I'm the Weird One! Didn't put so much as half an ounce of weight on me!!! LOL

I was taking it to help the numbness in my legs. It worked for a bit and then I'd notice the numbness getting worse. Then, we up the dose, it got better, then worse again,etc. LOL Got to the point where the numbness was 10 x's worse than before I started taking it. Thankfully I just have my "normal" numbness back. :D A couple of surprising and welcomed "side effects" from lyrica was that it stopped my night sweats completely and even some of my overheating during the day and it stopped the electrical zaps a lot of us deal with. I wish I could have stayed on it for those 2 things alone!! I couldn't deal with the numbness though.

There's another med that might help but you could avoid the weight gain aspect, Topomax. It's been nicknamed the weight loss drug among us. People who've gained weight on lyrica or neurontin say when they switch to topomax they see a bit of weight loss they had put on while on the other one. I bet it's a lot cheaper than lyrica too! LOL Ask the doc about this one and see if he'll let you try it instead. It works the same way as lyrica and the others. They all are supposed to help nerve pain.

Hugs,

Karen
Re: Lyrica?
Mar 12, 2009
Hi there;

I am on Lyrica and have been since June 08 (started 5 months after RSD diagnosis.)
It has made me feel the most "normal" sensations in my legs since diagnosis. I was very lucky and diagnosed in only 6 days. I would say that my RSD is 80-90% controlled with Meds and I am 14 months in.
I haven't had weight gain. Maybe 2 lbs if any. I now am able to go to the gym for 30mins 2x week and hope to keep up that activity. I actually am a certified Personal Trainer and am not able to work out like I used to or would coach clients to, but I keep some activity up. Not Personal Training right now, but hope to again in the future. Just won't be able to practice everything I preach understandably.
I think Lyrica is worth it as it has taken away the zaps and burning and tingling.
Take care
Re: Lyrica?
Mar 12, 2009
Karen,
I have heard people say that they are on Neurontin.My doctor did tell me about neurontin but my health care also goes hand in hand with my income.Since I have to insurance I have to pay for everything out of pocket.Completely. I tried to get state help but was told I make to much money. I hate being told that.Here I am going pay check to pay check and having to borrow money just to fill my very needed prescriptions.My doctor said that the neurontin was a bit more than the lyrica and I can get a patient assistance for the lyrica,but just lyrica. The burning that I have is not that bad.Even on a bad pain day.My main problems are feeling frozen all the time.I already have numbness.Sometimes it feels like my leg is a sleep,other times it feels like it's slowly being removed from my body and lose all the feeling but pain.Go figure.lol
I guess I'm just going to have to jump in and try the lyrica. I've always been that person that didn't even want to take a asprin because of what meds can do to your body.Now I sit here on way more meds then I'd like,but at the same time for the first time in almost 2 years I actually get some relief.Thanks for your imput.

Popstarrdiva,
Thank you for your imput about the lyrica. I had a question for you since you are or were a personal trainer. I have a 2.0 atrophy in my leg right above my knee.I stopped physical therapy because it was only flaring up my rsd and causing more bad than good.I'm suppose to do small stretches everyday to help keep the atrophy from getting any worse.I find that the home excersises I was given don't really help.I just can't do it enough to make a difference.My question to you is,is there any time of strengthening that I can do at home to make sure I keep building the muscle without causing flare ups with the rsd? What is your opinion on yoga? My physical therapist was 100% against it,says that it wouldn't do anything beneficial for me. My rsd is from the top of my knee all the way down and in my foot.I did yoga quite a bit before my accident but I can't me on my knees or in a crawl like position at all. Do you have any suggestions to help build back the muscle I've lost without really doing anything vigorous? Any advice would be great.Thanks again for replying to me about the lyrica.

Deanne
Re: Lyrica?
Mar 12, 2009
Lyrica is the "new" version of Neurontin. Not sure what they changed about it but whatever is was I reacted nothing like I did when I tried the neurontin.

To get lyrica free from the company you have to meet the income limit,same as if you were going for food stamps,medicaid,etc. There's 2 programs, Pfizer Friends. This program saves money on pfizer scrips. You have to make at or below $32,490 for 1 person, $43,710 for 2 and $54,930 for 3.

The other Connection to Care you get them free through the doc office. The income limits are at or below $21,660 for 1, $29,140 for 2 and $36,620 for 3.

My hubby makes too much money for us to get any help from the state or for me to have gotten the lyrica for free from the company. We live check to check as well and can barely pay our bills. The working poor has no health insurance and can barely make ends meet yet don't qualify for any assistance. We have to pay for my doc and meds ourselves too and that just adds to the burden. The US really sucks! LOL

Hugs,

Karen
Re: Lyrica?
Mar 12, 2009
Karen,

I know what you mean about companies and the state saying you make to much to get help but yet you don't know if you're going to be able to pay next months rent.Luckily I live in Washington state and we do get more help then most people.I don't have any children so I don't get a lot.But my pain management doctor is only $20 to see him.That's it.He is at a community health center.And that $20 is without any insurance.I do have to pay completely out of pocket for my prescriptions but riteaid price matches anybody.I also can get patient assistance for the lyrica and it's only $10 for a 3 month supply.I make to much money for anything else,but inleast I'm getting care,and good care for the rsd without it costing very much.
Re: Lyrica?
Mar 12, 2009
Deanne;

I am so very sorry to hear about your problems.
So this is a bit hard for me to answer due to a few things. I generally worked with healthy bodies and so I feel that I cannot give you a fair answer due to it being outside my specialty or scope of practice. My idea is to start training special populations eventually.
I would recommend following your Physio's advice as they are specifically trained on how to rehab injuries. Not RSD necessarily, but injuries.
I can give you some advice from my personal injury and RSD experience as a patient.
Pre RSD in 06 I tore my quad and I had major muscle atrophy above my right knee. I was scared. The muscle slowly came back from walking and physio rehab. I did some gentle knee extensions with an ankle weight and some walking. I progressed to balancing on one leg one at a time which worked my balance, but also started to rebuild the muscle. I was also stretching and it slowly started to come back. We have to be especially careful as once our muscle atrophies it is not coming back and so I would do whatever they tell you to the maximum amount they recommend for one day.
With RSD for my legs foot related, I started doing aqua exercises in the nearby pool. Just standing on my toes and walking across the pool anything to keep moving, but also gentle.
I hope this has somewhat helped. Also, try having Epsom salt baths and gently move your leg to get movement in and desensitize. My physio had me doing that.
Good luck
Re: Lyrica?
Mar 13, 2009
I had asked my doctor about aqua therapy and he said that it doesn't work with rsd patients. Has it helped you get your mobility back? I can sit in a hot tub and it helps with the pain,but only as long as I'm in the hot tub.Other than that it all comes right back.I'm kind of limited on the things that I'm able to do.I already got my perminate restrictions and I'm limited on the actual things I can do that may be weight bearing. I'm not allowed to lift anything heavier than my purse on a daily basis but I need a way to build my muscle back and the home excersises that my PT gave me just aren't cutting it.Thank you for your advice.I'm always looking for more ways to improve my life by being able to be strong enough to fight this battle.
Deanne
Re: Lyrica?
Mar 13, 2009
He said what?!?! OMG! If it weren't for a few sessions in the pool I'd probably be in a wheelchair now! My water therapy was what got me off of 2 months + on crutches and back to walking on my own again. I would recommend to every rsd'er to get in a pool, of course not a cold one lol, because it takes the weight off your body and lets you move your body the way we just can't on land.

The ignorance these so called "docs" spout like that astounds me.

Hugs,

Karen
Re: Lyrica?
Mar 13, 2009
How did you get them to let you in the pool??? My PM guy said PT wouldn't help and didn't send me until I ended up with a messed up sacroilliac joint on the opposite leg. Which I swear was from the blocks he did. I now have it in both legs, both sacroilliac joints, I think I'm getting it in my ribs, still waiting on the ultrasound results there, but I suspect they show nothing. My shoulders, wrists and fingers are starting to go too.
Re: Lyrica?
Mar 14, 2009
It was part of the pt they had set up at the time. I went 2 times a week for 3 weeks. One day was in the office, the other day was pool day. LOL The only thing I hated was because the office was at the YMCA, it was the regular pool outside and of course it was cold. I would rush home those days and soak in a tub of VERY hot water to warm up again. WC was going to deny me pt at all, the jerks. I got a lawyer and they approved 6 sessions right quick. The doc had ordered 12. Guess I'm lucky I had as many as I did.

My 2nd round of pt was 12 sessions but I was dismissed after about 8 sessions because it was making me worse. The only good thing to come out of that time around was it reversed the atrophy in my left thigh.

Hugs,

Karen
Re: Lyrica?
Mar 15, 2009
[QUOTE=Gaollan;3918418]He said what?!?! OMG! If it weren't for a few sessions in the pool I'd probably be in a wheelchair now! My water therapy was what got me off of 2 months + on crutches and back to walking on my own again. I would recommend to every rsd'er to get in a pool, of course not a cold one lol, because it takes the weight off your body and lets you move your body the way we just can't on land.

The ignorance these so called "docs" spout like that astounds me.

Hugs,

Karen[/QUOTE]

Karen,

My doctor said that if you get diagnosed and start the treatment immediately that it could help but I wasn't diagnosed till a year of pain with no results from pt or blocks,surgery,etc.
I thought that it could help with the atrophy that I have left. I have a 2.0 atrophy, it's better than the 4.5 I had this time last year but my doctor says that it will take time for that to build back up.Well of course it will take more time because we're not doing anything for it.He said I might be able to take small walks to help,but it's below freezing most days in my area and he tells me I can't go out when its cold.So then how would I take walks?All in all he is a good doctor.I can inleast go to him but he pretty much states that there isn't anything I can do for the rsd other than take high doses of meds.I understand that there isn't a whole lot I can do for the pain,but wouldn't the pain be less if my leg was stronger?He doesn't seem to think so. I have to be real careful of the things I do because if I hurt myself doing something that isn't approved I can loose my pm. I hate the idea of him giving up on me.I'd like to find ways to make myself better but if it's not taking pills he says it won't work.How long did it take the water therapy to help with the atrophy.I know I couldn't go in a non heated pool.I'm just way to sensitive to cold that it would cause more pain.But I don't see why a heated pool would hurt.Did it help with anything other than the atrophy? Like spasms,pain,mobility,etc?
Thanks for your advice in advance.You're always good at posting great and informative replies. :)
Deanne
Re: Lyrica?
Mar 15, 2009
A pool would help a lot! It did improve my mobility a great deal, the gentle exercise really did help the pain go down some. I remember that the jerking and spasms were a bit better as well. I felt more relaxed which helped my attitude and outlook on things. We all know stress is bad and it was a great way to literally just let it flow away for awhile. You always feel better when you're doing something constructive. I think it helped the atrophy too a bit, but my strengthening exercises in the office definitely helped beat it back faster than it would have otherwise.

At the time I was on wc and the docs wouldn't give me anything for pain at all. They all kept dx'ing me with rsd then turn around and "take" it back then treat me like I'm a drug seeking junkie! LOL Yeah, whatever!

The exercises I did in office weren't anything special and they can all be done at home as well. Since it was only 6 sessions the first time they needed to set me up for success since I didn't have that long with them. What I did was take a rolled up towel, place it under the knee and the press down into the towel,hold for a couple of seconds and release. That uses the thigh muscles which helps strengthen and get rid of atrophy. I would only do 2 or 3 presses for about a week or so then over a month I got to 10 presses. Trying to do 5 at a time will result in pain and pulled muscles! Found that out the hard way. LOL

Left lifts. Lay on right side,lift up left leg,hold for 5 seconds back down. I do 2 instead of the 5 they wanted. 5 is too many at first! See above about pain and muscle pulls. LOL The leg lifts were done laying on back,left side,right side and stomach. Then steadying myself on the edge of the table and push myself up onto my toes and back down a few time. The last one was leaning against the wall, one leg straight behind me, the other bent in front. Ummm....like lunges almost but much less strenuous.

It was all of it together that gave me back the ability to walk again and the strength so I didn't fall on my face! LOL When I did the 2nd round they had me doing straight office work as well as a stationary bike. I just couldn't do it. It did nothing but cause me more pain. It's a fine balance but it does work! The thing is that one day land, one day pool is more than enough. 2 days a week. At home I would do "laps" in the house. I'd walk around inside for a certain time, early on just for a minute or two. Later I was "lapping" inside 5 minutes or more. :)

Hugs,

Karen





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