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| Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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03-01-2008, 12:45 AM
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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!  hun,Heather
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. "We Will Conquer This Demon They Refer to As, RSD!" . . |
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03-01-2008, 07:08 AM
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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. |
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03-01-2008, 02:09 PM
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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 Quote:
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03-01-2008, 03:15 PM
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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
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. "We Will Conquer This Demon They Refer to As, RSD!" . . |
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03-01-2008, 03:17 PM
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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
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. "We Will Conquer This Demon They Refer to As, RSD!" . . |
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03-01-2008, 07:41 PM
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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!
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03-01-2008, 10:18 PM
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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. |
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03-02-2008, 07:20 AM
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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. |
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03-11-2008, 07:33 PM
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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 |
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03-12-2008, 07:22 AM
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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.
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Sorry to say CoffeeBean...
I asked Amercan RSDHope
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