Discussion in 'Fibromyalgia Main Forum' started by nan2bart, Dec 27, 2006.

  1. nan2bart

    nan2bart New Member

    Hi friends...I am 65 yrs. old and I have been taking drugs for FM for 16 years.
    I am wondering what I might feel like if I were to be off all drugs.
    I have always gotten the impression that if you have this DD, you need drugs. The funniest part is that in all these 13 years I haven't found anything that really even eases my pain enough to notice a difference. I am always somewhat depressed, but even as a child I would have mild mood swings. Back then, you just got yourself out of a bad mood by singing, walking, playing with other kids, helping Mom cook or shop or playing the piano. That was then, this is now.
    Since we know the reputation that FM has had in the medical field for so long, and we were all begging for help, it seems strange to me that now since becomming an accepted group of people, with many different types of problems, there are as many drugs to fit each problem.
    Please do not think that I am against any of us trying anything to find relief, because I have been searching a long time too, but never been that successful in finding help.
    Now my doctor has switched all of my neurological/depression drugs and I am going more nuts than before. I am experiencing side effects that I didn't experience from my other drugs and I feel no difference in my depression or my pain.
    To be quite honest, the only drug in all this time that I know for sure will help with depression, anxiety,sleeplessness and gives me the ability to manage my pain to a point, is Ativan. My dose is 1 mg. 2X a day. I have not become addicted to it or had to up my dose as I have had to do with all the others. I also feel no bad side effects.
    Has anyone ever tried to get off all their drugs, and if so, how has it worked? I also mean to very gradually try this.
  2. cjcookie

    cjcookie New Member

    I had to stretch some of my meds. One I know I never want to do without is my Zanaflex. When I cut down on this, I started having the worst muscle spasms ever - I mean ones that would throw you out of a chair. My doc was right - they were helping with my muscle problems.

    Even though I don't think my pain meds help much, when I didn't have them, I realized how much they really were working.

    I hope I never get into that predicament again.
  3. nan2bart

    nan2bart New Member

    I do feel nervous about stopping my meds, because I ask myself, "If I feel this bad on the drugs, what will I feel like off of them?" The only thing I can do is try. It can't hurt too much since it doesn't seem to have helped.
    Thank you for writing back and offering good advice to think about. Also to mention to my doctor.
  4. Diva55

    Diva55 New Member

    Hi Nan
    I have taken all sorts of meds for years - many did not help but I kept trying as I believed a magic pill would appear! The side effects were also horrible for me on anything I took.

    I did find a magic pill, for me, in Lyrica which after awful side effects finally kicked in and kept the pain under control most days. I also take Anti depressants (Amyl type). I've taken Lyrica for 2 years now and just this type of Anti depressants for a few months.

    I decided about 6 months ago that my life was "on hold" with no energy and in bed for up to 20 hours a day. So I decided to cut back on Lyrica BUT in conjunction with trying natural remedies in the form of Recuperation (which I had researched for many months)

    I did this only after checking with my doctor who gives me a repeat prescription and leaves me to regulate the dose acording to my needs.

    The withdrawal symptoms were sometimes as bad as the side effects were! So I was very careful and you MUST do the same - with guidance from your doctor and guidance from your body.

    I've had some very bad panic attacks & plunged in a milli second into a deep depression and know this is withdrawl as Lyrica affects the brain, so it is very powerful.

    But the good news is that after 6 months I can get away with just one 75mg pill every day or alternate days. I was at one time on 600mg a day but averaged out at 300mg.

    The reason I can do this is because Recuperation has controlled my pains. I do trial days without taking both Lyrica or Recuperation to test the pain level (really bad!!) - then tested Recuperation one day & Lyrica another day & am pleased to say that Recuperation works almost as well as Lyrica.

    So I'm still trying to get off Lyrica completely and am adding some natural supplements - Spirulina & Probiotics.

    My next step would be to come off the anti depressants & try 5HTP as Melatonin is banned over here.

    I appreciate the advice that's been given on these boards.

    So remember to talk to your doctor & listen to your body when coming off any drugs. Look into supplements & plan around what you think your body needs - never easy to get finally get down to what helps but great advice on this board.

    Good luck

  5. MamaDove

    MamaDove New Member

    While being hosiptalized for Crohn's and after 13 years of trying everything for pain, depression, anxiety, spasms, etc...I begged for a 'valium' to calm me down...

    My doc wouldn't hear of it...can you imagine? Finally, I asked a nurse about it...Somehow, a few hours later, Ativan was brought up...I was on solumedrol and 3 antibiotics trying to save my life, couldn't sleep, writhing in pain and unable to take any pain meds due to side effects and in comes this little white pill that my doc doesn't think will help me...

    I SLEPT for the first time in years...My swelled, knotted up gut relaxed for the first time that I could remember, I stretched out in the most uncomfortable hospital bed on the planet and slept for 4 hours...

    Doc came in the next day and I said, HOORAY FOR ATIVAN!!! He looked at me as if I were nuts! I said "I told you if I could just relax for 10 minutes, things would turn around...No, he kept recommending that with all my health problems, I go on remicade IV, seea shrink, etc. etc...

    Since I have come home from the hospital, I take one a night along with my 'monkey', 70mg of prednisone and colazal for inflammation...What a winning combo for me...also doing some supplements slowly and hope to be a whole lot healhtier in 2007...

    Back to the ativan...My gastro would only give me 21 pills, now what? I see him next week and will beg him if I have to, or beat him, whichever way I have to get these lil pills that help my mind, body and spirit...ONE LITTLE MG. PILL has changed my life...And no side effects either, not that I would recognize due to the zombie effect of the prednisone...UUUUGGGGGGHHHHH!!!!! But I can't complain, I came back from hell and home for Xmas and I am on the mend and life is pretty friggin good for now...

    Still IMHO, the less of any chemicals we put in our bodies and the more we concentrate on healthy eating (what goes in, sometimes doesn't come out, leading to ill-health), the better off we will all be...

    PS. No fibro symptoms at all since this abdominal issue flared...To be honest, I would trade it back in a second for the worst fibro flare ever, but one thing at a time...tehe

    Love to all, Alicia
  6. twitcher

    twitcher New Member

    I personally refuse to take most drugs. The only thing I take is something for sleep and I only take it about 3 times a week. I admit I did try Cymbalta for a few weeks. It did nothing but give me side effects. I think the narcotic pain meds just cause dependence and really do not help anyway. Yes, I live in constant pain but I've learned to live with it. I would be willing to take a specific med for an objective, diagnosed problem. For example, if I had high blood pressure I would take medication for it. However, just trying meds to see if they help is not for me. Especially since I question the fibro diagnosis and there is no confirmed cause of it. I would treat the cause if I knew what it was. Everyone has their own feelings about medications. This is just my own personal feeling.

  7. nan2bart

    nan2bart New Member

    You have no idea how much better I feel after reading your post.
    I finally went to the doc yesterday because the inner muscle spasms I was having were keeping me awake all night long. I really have to agree with the fact that poor sleep does make my FM worse. My skin began to do it's itching tricks too so I just called the doctor and said I needed some help. She said I was having an allergic reaction to the Cymbalta I had begun taking 2-3 weeks ago. She took me completely off of that and put me back on my old tried and true Prozac, added some lunestra for sleep and decreased my dose of Neurontin (almost the same as Lyrica) and I slept like a tree trunk, not just a log, all night.
    I told the doctor I was wishing I could gradually quit all the FM drugs since no one, even me, knew what part of the disease was being helped. She said she in no way was she trying to keep me on drugs, but she said that the brain chemicals that I am not producing or producing too much of, needed regulating and by going off all drugs to do with depression would wreck havoc on those chemicals.
    I completely agree with your thoughts on taking a drug for a specific problem. I do take meds. for high BP and I take Ativan for anxiety and panic attacks. They are 2 meds. that are needed. I guess I'm changing my mind on my original post of trying to get off all anti-depressant/neurological drugs because I do have my brain chemicals and sleep problems to consider, so I will take the least amounts I can get away with to live my life happily.
    Thank you for responding and I hope and pray for a 2007 that brings you all good things in your life.
  8. twitcher

    twitcher New Member

    I hope you continue to sleep ok. Not being able to sleep is intolerable and just makes all the other symptoms worse.


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