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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


:wave: Hi everyone-- Sorry I haven't been around much, my daughter and her boyfriend who just started a drywall job here that pays $18 an hour cash, and needs a ride to work and back everyday :eek: But I know in 2 weeks that they will have enough $$ to get their own place, and I just bought them a car yesterday. Too bad neither has a licence because it take an act of Congress to get a road test here--but that's another story.

Wow Claire--you have been put thru the ringer here. I gotta give you credit for trying it again. It's interesting what other's too have posted. Thumbs up for everyone else's input. :) I was at my daughter's dr. today, because my youngest has a cold now, and he was the one that told me that he's prescribed it to people with diabetic pain and shingles. He's also the head of the largest clinic on this side of the island. When he was done with her, I mentioned the Lyrica and the results it has had on the RSD chat board I'm on. He said that that would make sense, & if I wasn't so dang tired I'd remember wha t he said. He did examine me cause I twisted my neck this morning blow drying my hair. And when he put his hands on my neck at C6 ligjhty I screamed so loud, I think everyone heard me. Maybe then it was when he said that I wouldn't be a good canditate for it. Of course he told me to go home and put on ice on it--where I said no ice with RSD--and he corrected himself.
Anyways about Pfizer--I agree with Chick 58 about them coming up with a substitute drug for Neurontin! I read part of the PDF format of how the drug combines with molecules in your body, and it reminded me of Neurontin dressed up for Halloween! They mADE SO MUCH MONEY for prescribing it for off label uses! I even called Pfizer one day after the lawsuit, and I have a tape recorder hooked up to my phone, and they told me flat out it was not approved for RSD!!!!!! Then why was I pushed into taking it? And my crooked ortho who gave it to me, his office was shut down for 2 weeks at the last minute because he was on a Pfizer Drug Seminar for and never bothered to call anyone to cancel :o Hubbard maybe why that is you're so tired! I didn't know you were on that drug. I got in my first car accident on that drug and they thought I was drunk! Sorry but it just gets me upset about the drug compamies and all the money they got to advertise these new drugs and yet they cost us sooo much-- not only in the pocket but in the body too, because they haven't been on the market for that long. They don't know about the drug interactions with the heart, like Vioxx, and when they say do not take this drug if you are taking a drug with oxyodone, that could be percocets or oxycotin, or codenine. :nono: And the swelling??? I just wonder how long this drug was tested and if the FDA is being paid off too! I wish like I've said before--I wish that there was a magic pill for us RSD'rs. I know how desperate we all get to try anything to stop the symptoms with the pain!. But we have to stop and think of the long term damage it can do. We already have pain on a scale on 1 to 10 a 50! and the last thing we need to do is take something that down the road could cause us more harm them good at the drug companies profit. :blob_fire :mad:
Think of the FDA as FEMA! It's the government.

Please Claire be careful. Maybe a low dose might work. But you got so many problems with swelling right now, you're reintroducing something that caused you great harm. I pray that you know what you're doing. I just wonder if anyone else is taking the same dose as you? Weren't you up to like 75 mg a dose? Keep us posted on how you're doing. If it continues to cause the swelling stop. No need to wake up like you feel you're 182 when we all wake up feeling like a Mack truck ran us over.
Thanks for everyone hear me vent. My neck I can't turn, and so I'm gonna rreat myself to a glass of wine with my dinner, and hope that helps. Aloha to all Skooze
Aloha Claire & All :wave: I would say being a woman that you should stick to your intuition. I wish I would have follwed that advice and it would of saved me alot of meeting the Mr. Wrongs.Whenever that intuition talks to you you should follow it. Call youbrave--no I call you desperate. We've all been there at some point where we would try anything ( except maybe drink squirrell pee as someone else suggested LOL) :D but I would listen to that inner voice. You still have SOME swelling as opposed to a FEEL LIKE I"M 180 years old when I wake up. Boy that sure beats the record of the pain scale on a 1 to 10 how do you feel :jester: Maybe they should ask us RSD'rs how old do we feel today?? I never felt that old, but I used to ask my kids if they got the # of the mack truck that was driving and ran me off the road!'

How old are you, may I ask? And the swelling is it like pre-menstrual or it's all in your foot? If it;'s all in your feet, which isn't t he origin of the RSD I'd be real leary of retrying it again. Try some herbal supplements or something that didn't nearly put you back 4 squares from where you were before you started again. I truly emphasize with what you are going through, but being desperate, vs beeing logical, I think you're confused.

My girlfriend who has been taking treatments on my STS machine, tells me that she paid to see a Rheumaoid Therapist, because there is only one on this island Of Maui, and he is not HMSA approved but Kaiser. She went in, and this guy told her, that she has rheumetoid arthritis vs RSD, which makes sense cause she doesn't have the same symptoms as us. Same shoulder/neck injury, but different symptoms. He also told her, cause she mentioned me with RSD, that when you see a pain magt. dr., you should ask if he is a member of the American Pain Mgt. Association. Supposedily, these dr's have the most curent knowledge of RSD and other chronic pain that we see here. He also told her for me, that I should take Cymbalta for the nerve pain. Desperate for that magic pill I researched it, it sounds alot like lot he Neurontin, Lyrica etc. It's an anti- depressant used for treating once again, diabetic neuropathy, and shingles. It's side effets are more similar to NeROTTON than Lyrica :eek: Lily is the manufacturer, and there have been alot of suicides over this and the side effects are horrible.
I just pray Claire that you, realize when to throw in the towel. I'd rather be a functioning person than a vegetable. No one said that YOU HAVE TO BE THE HERO! I just worry for you, and I know that time tells all. Just keep us all posted DAILY. Then your support group groupies can guide you through this. Pinky swear?? ;)

PS Hubbard that was a great encouraging post! :bouncing: I think that the NERoTTEN is making you tired, and that OXY is the wrong drug for us.
Anytime that the drug companies gives us the bad drugs for free, like OXY and NeROTTEN, yet we have to pay for the good ones like MSCottin which is a more safer drug, but extended pain relief vs. short term relief. I take Graviola and Noni juice for herbal supplements, and in one month I have been taking less narcotics. In fact I could do away with my break thorugh pain, except the quick acting perc I need in the :) morning. Baby steps though. We all have to remember baby steps. Look how long it took us to get where we are vs where we wanna be. My computer is freezing up on me so it's time to say good night, or Aloha same thing Take Care ALOHA SKOOZE :angel:





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