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    Side Effects Anyone?
    bette_kaffitz posted:
    It seems that almost all of us have had to discontinue a medication that might have helped our fibro--if the side effects hadn't been so bad.

    Those of us with firomyalgia seem to have a bunch of related syndromes and symptoms. They boil down to this: WE ARE SUPER SENSITIVE.
    Our bodies are on constant alert. Everything from digestion to skin to headaches to reactions to heat and cold can stop us in our tracks.

    No wonder we have such a high incidence of drug reactions.

    How can we give a new drug a fair trial while not allowing anything dire to happen because we are taking it? We are not "mental," but we are suggestive. If I read every possible drug reaction listed on the printout that comes with my medication, I am apt to be looking for all these things and might just overreact and see something that isn't there. On the other hand, if I don't read the precautions, I may overlook something potentially dangerous. So what should I do??

    On your printout there will probably be a section called something like "the most important thing you should know about this drug." READ THIS. There may also be a "black box" warning or some information in bold type. READ THIS TOO.

    Now you know the important things to look out for. Put the printout aside and keep it where you can find it. Be on the lookout for any of these important side effects.

    While you are taking the drug, if there is any change in your condition that puzzles you, go back and check the printout for that particular problem.

    This way, you will be forewarned about any possible dangerous effects, but you will not be constantly asking yourself about every little thing.

    We walk such a narrow path. It is so easy to become a professional patient. We don't want that. But we do want to be informed patients.
    We don't want to be thinking about our fibro all the time. But we do want to know all about our fibro. The narrow path. It separates two types of FMer. On one side is a field full of hypochondriacs. On the other is a field full of ostriches. (You know them; their motto is, "Don't tell me. I don't want to know."

    Stay on the path--especially with your medications.


    Take the Poll

    Have you ever had a side effect that made you stop a medication.
    • Yes, a dangerous one.
    • Yes. It was a nuisance.
    • No. It was minor and went away after a while.
    • No. I never had any problems.
    View Poll Results
    fibroinsd responded:
    not sure exactly how to answer the poll...I was on cymbalta for was great for me..but after a year..I found it made me too sleepy..and I went off of I guess I could answer under the nuisance..but for the year it was very helpful to me too..

    Let's put the fun back in dysfunctional !- Mary Englebright
    ajnsmom responded:
    Hi Bette,

    I'm dealing with questions about side effects right now. My new doc offered to write a prescription for Lyrica or Cymbalta to replace Gabapentin because she thinks Gabapentin may be the cause of my numbness in feet and hands, weakness in limbs and clumsiness. I don't think Gabapentin is the cause, because I've been on Gabapentin for almost 3 years with no side effects other than drowsiness. I'm type 1 diabetic, and I am really confused, because Gabapentin is also used for diabetic neuropathy. What an aggravating situation. I'm unbalanced, bumping into things, dropping stuff, and I've fallen twice in the last month or so. It's hard to hold my let up to put my socks on and pant legs on.

    Any ideas? I will need to see a neurologist if this hasn't cleared up soon. I'm afraid to take Lyrica or Cymbalta, because of so many side effects listed. My fibro pain has been controlled by the Gabapentin, Flexeril, and Amitriptline, and I'm afraid I might start hurting bad again if I go off of Gabapentin without replacing it.

    My next doc appointment (for the diabetes) is on Feb 3, but I hate the thought of another month of this. Do you all think I should contact the doc and ask her to wean me off Gabapentin and start me on Cymbalta? I hear that Lyrica is very expensive.

    Linda S. (Jax, FL)
    dollbug replied to ajnsmom's response:
    Hello Linda S. MiMi in NC. I just wanted to comment on your post. I tried Gabapentin for a while and it affected my eye sight....BIG TIME. I do want to tell you that when I first got sick I was unstable on my feet as well. I fell outside 2 different times and broke each of my wrist. I was NOT on Gabapentin at the time. I ended up having to have surgery on both wrists where plates and pins were put in to repair the damage that I did to them.

    Have you had your Vitamin D level checked yet? Have you talked to your doctor about taking a magnesium supplement too? You might want to bring this up with the doctor at your next appointment.

    I know that after I started taking the magnesium malate the majority of my numbness cleared up. At one time my feet felt like I was walking on pins and needles. Not a good feeling at all.

    I do want to say that I tried Cymbalta as well but could NOT take it. It actually made me sicker than I had been and I got to the point where I could NOT put one foot in front of the other. I finally called the doctor and he told me to quit taking it. I tried it for just a short time. There are some FMers here though who take it or have taken it and they were ok with doing so.

    We are all different and you will never know what might help you until you try it. I think you should contact your doctor though and discuss your thoughts about this.

    I would also encourage you to do your own research about whatever you decide to try. I am one of the FMers here who now take vitamins and supplements to *control my FM pain*, after trying different kinds of medicines first. I did NOT find any which helped without causing other side effects.

    Take care and good luck. I hope you will let us know what you decide and how it works for you.


    mnjeepguy responded:
    I took Effexor for over a year. It took longer than that to get rid of a side effect of it. It did help my pain some but made me tired to the point where I was not safe to drive very far among other things. This was one I quit because of the side effects. It just was not worth it for me. It make work well for someone else.

    I now take Gabapentin. It takes the edge off of my pain but shortens my attention span a little. Not good when it is short already. Time will tell if I keep taking it.

    We all have to read the fine print as Bette said. We have to weigh the pros and cons or a med by trial and error unfortunately. I keep a daily journal and this helps me track things I may not even notice right away.

    Drugs are not always the answer. We overmedicate as a culture. There is a place for medicine but we have to think it through and use caution.
    ajnsmom replied to dollbug's response:
    Hi Mimi,

    Thanks for the quick response. I'm going to ask the doc about taking a magnesium supplement like you suggested. If that could get rid of this numbness, I would really be a happy camper!!! Years ago I had low Vitamin D and the doc told me to take a supplement, but I haven't thought to have it checked recently. They took blood this morning but I doubt that was part of the test. So that's another thing I can discuss with my doc at my next appointment. Thanks again,

    Linda S.
    missist replied to ajnsmom's response:
    Linda S..
    There's a lot of things that could cause those symptoms--not necessarily just one thing. I'm on gabapentin too--and actually do have those same symptoms--but-- there are different causes.

    I drop things due to stiff neck and hands--but also due to a problem in my brain that causes seizures and also twitches and jerks. Still-- I really thing most of my dropping has to do with my neck--I know this cuz it stiffened up this past week and voila--I started to drop stuff. That problem precedes my gabapentin use by about 4 years.

    Balance--I have awful balance--it really has to do most with my legs/hips/spine being so stiff. I keep exercising them and if I am faithful to do all my stretches every day in am. ---they are better for much of that day.--but I fell just before Christmas--and I think it is in part due to that, but also due to a little dizzyness from a new med-- keppra--and possibly my shoes. I do stretches in my hot tub--which is perfect for me. I was attending a water exercise class over a year ago and my balance was improving--the instructor would test it. I began with the worst balance in the class ( of all people 10-30 yrs older than me!) I was not on gabapentin at that time--so preceded it.

    If I were you--I would actually push to see a neuro--cuz they know just what to test for. Mine ran an eeg & mri and some labwork and pinpointed exactly what was wrong and also what vitamins I needed to increase. I was very impressed.

    Unfortunately- I did find myself reacting seriously to the first med I had from her--but the 2nd seems to be working out better.

    Neurontin might be the reason--but it might not.
    missist replied to mnjeepguy's response:
    I do agree with what Cory is saying--I do take drugs for various issues--but always try to make it just the ones I really need and no more than I need.

    Balance issues really can be just from fibro itself. If your muscles are tight--which is standard with fibro-- that in itself can cause you fall.

    Best of luck!
    ajnsmom replied to mnjeepguy's response:
    Hi Cory,

    I agree with you about being cautious. I have read a lot about fibro, neuropathy, etc., and it is hard to know what to do at times.

    Linda S.
    ajnsmom replied to missist's response:
    Thanks, Mary! It will be a while before I can see a neurologist since I don't have insurance. There's a different free clinic that I have to apply to be seen, then that clinic may be able to refer me to a neurologist. The free clinic I went to this morning could refer me, but the doc said it would cost a lot, especially the MRI and other tests.

    Also, I just remembered something the doc said. She said my muscle relaxant could be causing the balance issues, but what's weird about it is that I've been taking that for around 3 years also without any side effects other than drowsiness. I don't understand why my fibro would be getting worse if the fibro itself is causing the numbness, etc. Ughhh... Well, time will tell as I try different things. Thanks again for your quick response. I hope you had a good day.

    Linda S.
    sean4461 replied to mnjeepguy's response:
    agree on drugs are not always the answer
    I've been living w diagnosed fibromyalgia for 20 years with out taking drugs for it Its def been challenging but a lot is a state of mind
    Anon_10089 replied to ajnsmom's response:

    Sorry to hear about the numbness issues. My mom has Type 1 diabetes. Numbness could be from the diabetes itself. She has taken extremely good care of herself yet is getting numb spots in her feet (she does not have FM). I know the neurontin is prescribed for that, but maybe it's been keeping it at bay for awhile and is not working as well? Don't know, just a possibility.

    Watch out for your feet that you don't get skin injuries where the numbness is and not feel it. That's the big danger. I'm sure you know all this from your diabetes doctors!

    Anyway, though I'd throw another possibility into the mix!
    Anon_10089 responded:
    I think it is enormously dangerous that doctors first give prescriptions for medications that cause weight gain . . . to a group of people known by the medical world who already struggle with weight gain!!

    Many anti-depressants and anti-convulsants not only cause weight gain, but also can affect blood sugar, insulin tolerance, and cholesterol.

    I'm not saying these meds shouldn't be used. I think they should come with more of a warning. They are hard to get on and hard to come off. It seems like these side effects take many people by surprise.

    My advice to anyone starting a new medication is to obviously read the information about it but also read actual people's experiences with it. Keep in mind that usually people post something on the internet if something bad happens, so take everything with a grain of salt. But educate yourself so that if something strange starts happening with your body, you might know what's going on. Perhaps limit yourself to reading only 5-10 minutes of other people's experiences. I agree with Bette that our minds can become our own worst enemies.
    ajnsmom replied to Anon_10089's response:
    I agree with you. I usually get online to check out meds before I start taking them. I have done more research and I now think it could just be low potassium causing the numbness because of a water pill I started 2 weeks before the numbness began. I'll let you all know if that was it when this is resolved. Thank you for your kind responses.

    Linda S. (Jax, FL)

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