[Coffeebean]

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.

[debbiehub]

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

[mollymcn]

She said she wants me on Lyrica for the RSD because this will stop the spread of the disease.

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!

[Marla]

You are so right mollymcn on the fact that no drug can stop the spread of RSD, unfortunately!!

Lyrica does help with the pain for most people, but I have not heard of it preventing the spread of RSD....I would be curious as to what they are basing their comment on for sure.
Please let us know what you find out.
Good luck to you Coffeebean!

Debbie,
If you are feeling spacey, you should talk with your doctor and see about lowering your dosage on that. What amount do they have you on?
I have been taking 200 mg. twice a day for a little over a year now, I started out with 50mg and worked my way up.
Best of luck to you, Debbie!

Love, Peace & Blessings to ALL!
Coach Marla

[gigglebabe]

I was put on lyrica for awhile, he increased my dose every month when I went in, finally I couldnt handle it anymore. I felt like I was outa my head. And I asked him to stop that med. He did. I have a wonderful doc. It would certainly be wonderful if someone could find a med to stop it......we've been wishful thinking for years now......

Debbie

[Coffeebean]

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?

[Coffeebean]

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.

[GalenaFaolan]

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

[Kathi49]

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.

[Jomar]

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
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}