My doctor said Lyrica will hault the spread of RSD, it this true?
 

I don't know what to think. I have been trying to find a good primary doctor in my area since we moved three years ago so I don't have a long history with any one doctor. So today for the second time I went to see an Internist who lives fairly close to my house. She said she wants me on Lyrica for the RSD because this will stop the spread of the disease. I told her that my pain level is really good right now and that I get hives on Lyrica but she insists I still take it. She wants me to take Zyrtec and Zantac to stop the hives but to get on a daily dose of Lyrica.

I asked her again why Lyrica and she said it will prevent the RSD from eating away at my bones and would probably help with the reddness and swelling. The RSD I have has spread from my elbow to my hand and up to my shoulder over the past 15 months. I also asked this doctor what she thought what causes RSD and she said she did not know but she does know that you have to be on an anti-seizure med to hault the spread. I got the same feeling from a hand specialist I saw earlier this month at the Cleveland Clinic.

I am very confused. I thought Neurotin, Lyrica and the other anti-seizure meds were used to control pain. Now I am hearing they are used to prevent RSD from spreading. I sure could use some input to hear what others have been told or read.

Thanks so much.

Lyrica
 

I would like to know too. I just starting taking Lyrica and baclofen but I am finding it difficult to take too much lyrica as it makes me spacey- How much do u take?

Debbie

Nope.
 

It's perfectly acceptable to ask your doctor, "What's the evidence for that? Can you point me to the article or report? I'd like to learn more about the risks and benefits before I decide what to do."

And - no drug can stop the spread of RSD. :( If there was such a drug, EVERYONE would be on it!

I wish I would have thought of asking for the supporting evidence. I did ask her what she thought caused RSD and she did not know. I actually have seen this doctor three times, once in December on at Saturday at a walk-in clinic to get meds for strep throat and then once in January (first time at her practice) and yesterday. When she me in the clinic I told her about my problem with RSD and she asked me if I was on Neurotin or Lyrica. I told her "no" due to the side effects and she said she had just moved to the mid-west from Oregon where she was an occupational doctor. She said she saw many patients with RSD over a six year period and she said the lastest research suggests treat it with an anti-seizure med to control the spread. I do need more information than this. I just felt so terrible yesterday thinking I had wasted months not being on an anti-seizure medication.

I have every symptoms of RSD and probably 7 or 8 independent doctors who had diagnosed me with it, yet I sometimes I wonder if I have it because I have days where my pain level is a 1 or 2. Is that possible with RSD? I was a solid 8 - 9 (my perspective) for five months until I had a second ulnar nerve release surgery and that relieved a second compression which calmed the pain. I have nerve injury, stiffness, swelling, reddness, atrophy, numbness in my little finger and pain most days. But if I keep my arm still and propped up, most times I can cut the pain. Could I still have RSD if I don't have pain 24/7? At times I can get to a level 8-9 fast, just rolling over in my sleep can make that happen or typing flares me badly. Some flares can take days to calm down, some take just a few hours. Like now, this is all I can type because I am really hurting, so I will stop for the day. If I would keep typing, I would have this burning pain at a level 8 in another 10 minutes.

What do you all think? Can this still be RSD if I do get some periods of relief?

Sure enough, from my water class today (I did too much) and typing, I am really flaring. I think I have not come to terms with the RSD diagnosis yet. I do some days, but not others. I am really struggling. I want a quick fix, don't we all.

That's the thing about RSD is that is does quite often "come and go". You have a day or even several days without much pain at all, then wham! You get smacked and you're in agony for day(s). I went through the same thing when my pain level was relatively "calm". Then I'd be in agony for days and see how badly my leg swelled. Any time I doubted my dx, I'd look down and see the discoloration of my skin and feel how freezing cold it felt and it would squash those doubts right then and there.

Once you have a dx and you finally know what it is, there's a time period of adjustment where it has to sink in and become real for you.. I think we've all gone through it. For me it's been 5 years now and I'm long past everything. I haven't forgotten those early months though and probably never will.

Hugs,

Karen

Coffeebean (Lisa)! :)

I am going to agree with the last poster. You know I don't have RSD (Central Pain or Central Sensitization) instead. But it seems to me we really don't have much of a choice; it is all usually the nerve meds we have to take. And, as you know, I can't take the majority of them. Soooo....Klonopin it is for me. I AM thinking about trying Lyrica ONE more time (this will make the 6th time). But someone was telling me to start off with 25mg and go from there. I wish you could get a firm diagnosis. :( Anyway, I will be talking to you. :)

Coffeebean - are the symptoms you listed mostly in your arms & hands?
Since you mention typing and symptom increase as well as the ulnar nerve release surgery - makes me almost wonder if you might have thoracic outlet syndrome {TOS}.
TOS is about as well known as RSD:rolleyes::(
You might want to read through some of our stickys on the TOS forum here to learn more about it.

{I couldn't recall if I already mentioned this to you or not:o}

Sorry to say CoffeeBean...
 

Your Doctor is outta his mind!!!! It's sad that he says this and he isn't educated enough to know the truth. He is giving his patients wrong information and it's soo sad and I'm so sorry!

All of these Doc's need to be reported on a Website strictly for this problem...These dr's aren't board certified in this area...We need to start this now. These doctors are Pain Management dr's and that is such a broad spectrum...These Dr's are seeing so many patients, on average 40,000 a year and only 1% are RSD, so there needs to be specialists in each clinic for RSD eventually or we need to seek one out individually.

All too many of us have been told we don't have the disease and are sent home to get worse and become suicidal and depressed...It's too sad...I council individuals with alcohol and drug problems everyday, I want to help RSD'ers now...We need help too!

Coffeebean, sorry to have vented...I apologize! Hope you feel better, but we need to step up and make an absolute change to this!

:hug: hun,
Heather

Lisa,

Jo55 has a good point as I know you have neck pain too. :(

And I want to speak up for my own Pain Management doctor. He is BOARD CERTIFIED in Anesthesiology, Pain Medicine AND INTERNAL MEDICINE. You rarely find a PM who has ALL 3! He has helped me tremendously with the neuropathic pain I have even though it is not RSD. My Neurologist on the other hand is good, but she knows nothing of spinal disorders which is really my problem but I have central sensitization or central pain NOT from fusions but because of the ongoing pain PRIOR to any fusions. She has run the gamut of testing not once but twice and everything comes back negative. Sooo...my own theory is...what I have is windup from having been in pain for so long. My PM doc is in agreement.

Lisa, try the Lyrica at small doses first. The docs tend to start high; so try, if you can, 25mg in the am and pm and see if that helps.

Sounds like your doctor found a cure. I can only wish. Any doctor would tell you not to take Lyrica if you are allergic to it. When I started taking it I was constantly shaking and I'm not allergic to ANYTHING! My doctor said stop taking it immediately. Any reaction, no matter how small, is not good he said. I'm surprised he or she didn't send you to a pain doctor. Every primary i've ever had said, within 2 minutes of the first visit, "Have u seen a pain doctor". I guess it's better to have a doctor care to much then have one who doesn't care at all. I've been through so many primaries because they just don't care or they don't believe me.

I've been doing a little research on my own, trying to find out if it spreads. Did you have rsd that spread to other parts of your body? I had it originally in both of my feet. Then several months later it spread up the back of my right leg and up my rear end. That's why i'm trying to find out if it spreads. My doctor won't admit to me that it can spread even though I know it does.

I hope everything goes well for you!

Heather

I asked Amercan RSDHope
 

Hey CoffeeBean:

I wrote to RSDHope and asked them ur ? and this is what they wrote me..


Dear Heather,
Lyrica helps with nerve pain - it is the first drug designed for that - and was not initially created for RSD although it works for some people with RSD. Therefore it does NOT halt the spreading of RSD. We hope it does work for your people's pain though.
Peace and Hope,
Karen and Lynne for American RSDHope

Heatherg23....
 

Here's an article on spreading for you that you might find interesting...

http://www.rsdhope.org/ShowPage.asp?PAGE_ID=79

Hugs and hope you have a good day!
Heather

Lisa,

Note what Heather said about a pain doc. ;)

You KNOW the one I want you to see!

Okay, what Neurontin and Lyrica does is to block the pain signals...not halt any progression of neuropathic issues. I can't take Neurontin and I will try to take Lyrica again. But if I have the same SE's again I will have to stop it. A friend of mine has just started Keppra. I don't know that works for RSD but she is starting it for radiculopathy and neuropathy. I am going to ask my Neurologist about it this month. Personally and speaking strictly for myself, I wish the Neurologist would do an IVIG! ;)

I want to thank everyone for your helpful comments. I have been gone all day helping my daughter move so it was nice to get back home and get my arm propped up.

Karen, I think you hit the nail on the head. I seem to have a day that is good and I start thinking, this is it...my pain problems are over...I am over the worst and now my life is now returning to normal. Then bang, I overdue it just a tiny bit and I am almost back to square one. I am having a bad flare right now just from helping my daughter. It isn't even because I did that much (I don't dare lift a thing, I just clean up a little) but more because I am off my routine of resting a lot during the day. Once I have a change in my normal activity I tend to have huge flare ups. So now my arm is swollen, stiff and extremely painful. I am in a huge flare once again.

I think I need to take my friend's advice and go back to a pain management doctor who is familiar with RSD.

Lisa,

Just know that the new pain clinic ALSO has a pain management doctor on staff; not just my spinal PM. ;) And there was an article about Dr. N. in the paper the other day...I will save it for you or send you the link. It seems he is getting rave reviews. ;)

I feel for you though and sorry you are in a flare again. As you know, it happens to me too. I think over time you just learn how to pace yourself and it is so hard for me too. I do the same thing; think I am better, do too much and wham!

I hope the swimming is helping a bit...I need to get another script for that myself.

Hi All,
I was on lyrica prior developing RSD. However, my RSD spread despite of taking lyrica. So from personally experience, lyrica did not stop the spreading of RSD.
Numb

Numb, thanks for the information. I can't take Lyrica because I break out in hives so I was feeling a little nervous thinking I was making the RSD worse by not using the medication. Others on this forum have said the same thing as you, that Lyrica is used for pain control and not progression of the disease. I sure wish we could find a way to hault this miserable condition.

Hi. This is my first post in the RSD forum. I joined a short time ago and have just been reading posts.

I wanted to reply and say that I have been on Lyrica for a few months due to post-surgical RSD/CRPS going postal on me. Had very mild RSD from a prior surgery and with the one I had in November, things just went crazy.

So far the Lyrica hasn't kicked out the troubles, but it sure has made a difference. I saw the doc yesterday, and he is increasing me to 600mg/day now to see how that does. I also had another sympathetic nerve block on the right side yesterday (4th one).

Perhaps having an aggressive attack on this disease early on helps to slow or stop the spread, maybe that's why my doc is doing all this.

I hope you guys can get yours under control and keep it that way.