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  • Misdiagnosed with Fibromyalgia

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    Old 03-30-2009, 10:18 PM   #1
    TonioLarabi
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    Misdiagnosed with Fibromyalgia

    When I was misdiagnosed with Fibromyalgia, my PCP put me on LYRICA (I swear, the Devil's drug). It was hell getting off, only after I gained 65 pounds; 155 to 220 lbs. However, the worst side effect of LYRICA is that it ruined almost every tooth in my mouth. So far 9 root canals, disease in every tooth and now I need caps. Total cost will be about 40 thousand dollars (Oh yeah, I need an implant too). Now that I know I have RSD, my doctor referred me to a Pain Management Specialist. I have called their office at least ten times and no appointment or call back. Are all Pain Management Doctors idiots? Where can I find a good one that can get me functioning again? I am in Arizona (2 hrs away from Phoenix) and will drive anywhere to feel better. The FDA MUST TAKE LYRICA OFF THE MARKET! Pfizer did not do enough homework or studies. All I hear is bad things about the drug.

     
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    Old 03-31-2009, 08:35 AM   #2
    1sunny1
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    Re: Misdiagnosed with Fibromyalgia

    Hi there, I am sorry you went thru so much with Lyrica, the drug certainly is not for everyone, we are all different and have different effects, but truly, Lyrica is a miracle drug for me, I have no side effects except weight gain and I am doing my best to keep it off, I walk briskly everyday 3 to 5 miles. I will deal with the weight gain as Lyrica has given me back somewhat of a normal life. Take care...

    Sunny

     
    Old 03-31-2009, 09:31 AM   #3
    USMelissa
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    Re: Misdiagnosed with Fibromyalgia

    1Sunny1

    Great to hear your doing better I guess that's one funny thing with this is that some drugs will work for some people and not for others. How does it feel walking around a bit more now?. Bet your happy. This is one screwy disease isn't it

     
    Old 03-31-2009, 05:21 PM   #4
    TonioLarabi
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    Re: Misdiagnosed with Fibromyalgia

    Quote:
    Originally Posted by 1sunny1 View Post
    Hi there, I am sorry you went thru so much with Lyrica, the drug certainly is not for everyone, we are all different and have different effects, but truly, Lyrica is a miracle drug for me, I have no side effects except weight gain and I am doing my best to keep it off, I walk briskly everyday 3 to 5 miles. I will deal with the weight gain as Lyrica has given me back somewhat of a normal life. Take care...

    Sunny
    Sunny: I am certainly glad that LYRICA has helped you with your disease, but really look at all of the blogs and search "LYRICA side effects", you will find a whole lot more negatives said about Lyrica than positives. The thing you might need to be thinking about now, is if you have to stop taking it. The most complaints I have found is that most people have a terrible time getting off of the drug (like me). In fact, I read one user's note that said he had to detox from MORPHINE and LYRICA was more difficult to detox than the very, very strong Narcotic. Just be aware. What I am hearing, is most doctors are putting their patients on Benzos (Valium, etc..) to help them get off Lyrica. Again, I am happy it works for you, but if you look through all of the forums and blogs about LYRICA, the majority are very negative. I certainly wasn't planning on losing all of my teeth and spending well over 20 thousand dollars to get them fixed. I still don't know how much my implant will cost, but I hear it is pretty expensive. Be well and I really am happy for you. Tonio

    Last edited by TonioLarabi; 03-31-2009 at 05:23 PM.

     
    Old 03-31-2009, 10:42 PM   #5
    hdladyred
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    Re: Misdiagnosed with Fibromyalgia

    Tonio,
    I am sorry that you had such a terrible experience with Lyrica. I too was on it for a time and had some bad side effects - when it was time for me to stop taking it I titrated off of it slowly as I began taking the Topamax that was my replacement medication. It took a few weeks for me to be completely off of the Lyrica and up to the full Topamax dose.

    I know that we all experience this terrible RSD syndrome very differently and I am so glad that we have this board to share our experiences with each other - both the good and the bad. Please keep in mind that not everyone will respond physiologically to medications the same way - even though you have seen posts and reactions similar to yours there are obviously people out there who have been helped by Lyrica. Try to keep an open mind - please post what your experiences are - we want to know - it helps all of us learn - but please don't negate the experience of other people either. We are all here to support each other and learn from all of our total life/RSD trials. Sunny was giving Melissa some valid input and I hope that it helps her. I've seen Lyrica help 2 other people significantly with RSD and one with diabetic neuropathy.

    Thanks for listening.

     
    Old 03-31-2009, 11:47 PM   #6
    TonioLarabi
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    Re: Misdiagnosed with Fibromyalgia

    Quote:
    Originally Posted by hdladyred View Post
    Tonio,
    I am sorry that you had such a terrible experience with Lyrica. I too was on it for a time and had some bad side effects - when it was time for me to stop taking it I titrated off of it slowly as I began taking the Topamax that was my replacement medication. It took a few weeks for me to be completely off of the Lyrica and up to the full Topamax dose.

    I know that we all experience this terrible RSD syndrome very differently and I am so glad that we have this board to share our experiences with each other - both the good and the bad. Please keep in mind that not everyone will respond physiologically to medications the same way - even though you have seen posts and reactions similar to yours there are obviously people out there who have been helped by Lyrica. Try to keep an open mind - please post what your experiences are - we want to know - it helps all of us learn - but please don't negate the experience of other people either. We are all here to support each other and learn from all of our total life/RSD trials. Sunny was giving Melissa some valid input and I hope that it helps her. I've seen Lyrica help 2 other people significantly with RSD and one with diabetic neuropathy.

    Thanks for listening.
    Thanks for the input. I appreciate hearing from other people's experiences with "new" medications. Unfortunately, there is so much misinformation out there, that I really think it is important for people to really understand what they are putting in their bodies. As a scientist myself, I came across another forum on here that people with FIBROMYALGIA were blaming their teeth problems on the DISEASE and didn't consider that it was the drug causing the problems. I understand this, because people like you and I are on several medications for our disease and cannot pinpoint what the REAL causes of the effects. Just like other drugs, the manufacturer really does not know all of the dangers of the drug, until millions of people are taking it and a pattern develops. So, I understand that a medication can be very helpful and very hurtful at the same time. Some people will take it, even with the known, dangerous side effects. For instance, look at Vioxx; it helped many people, yet they did not discover the negatives until millions of people were on it. Some people chose to continue taking it, by buying it from other countries, because it helped them and they were willing to take the risks. I just want people to know EARLY and before it (God forbid) could do worse things, like kill people. For me, I have my life and I discovered it early, but not early enough. I wish that I had someone like me warning them about the POSSIBLE side effects and then make my own decisions. I hope LYRICA will not have more serious side effects as people use it, but they should be educated and really know what it is doing to many, many people NOW, not LATER. If you get the opportunity, search for "Teeth Disease" on this site and you will find that people with FIBROMYALGIA are blaming their teeth problems on the disease, not the drug. Again, luckily I have my life, I am just out over 50 thousand dollars of reconstruction and a real loss of my self esteem with all fabricated material in my mouth. So, I thank you too for listening and doing a little research to back up what I have said. I wish you well.

    Tonio, MPH, MS

    Last edited by TonioLarabi; 03-31-2009 at 11:54 PM.

     
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