Medication - What do you take for Fibro?

gavians
gavians Posts: 72 Member
edited October 7 in Social Groups
What type of medication have you taken for fibro? What works? What doesn't work for you?
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Replies

  • gavians
    gavians Posts: 72 Member
    Cymbalta
    I was originally prescribed Cymbalta by my neurologist about five years ago. It seemed to help a little but made me very tired and robbed me of any energy I may have ad left. It also caused me to have hot flashes, excessive sweating, and erectile dysfunction. I finally stopped taking it in July 2011. It was a complete nightmare to get off this medication. Please be careful taking this for fibro. I think the minor benefits are not outweighted by all the side effects. Has anyone had similar or better response from Cymbalta?

    Malic Acid
    I read about Malic Acid for fibro and started a couple years ago. It was amazing how much better I felt. But the problem with just Malic Acid it seems like you need the correct coctail along with it to get the best benefit.

    Fibro-Response
    Now I am on Fibro-Response (OTC - Amazon.com) and seems to be the best thing I have tried. It contains Malic Acid and other ingredients with just the right "multi-vitamin" to help with the symptoms. They are monster and nasty pills and I take four every morning. But believe you me, I know if I forget by the end of the day. I still get sharp pains occasionally but it really helps with the long grinding aching feeling I would feel all day.

    Sometimes I feel like I should get stock or a paycheck for Source Naturals. But nothing has helped me like Fibro-Response has without any noticeable side effects or prescription. Check out the reviews on amazon.com: http://amzn.com/B000GFSVJQ
  • mschelle
    mschelle Posts: 240 Member
    Lyrica - Worked OK at first. Even cured my near-daily headaches. Then I started getting really foggy and it stopped helping the pain.

    Cymbalta - Thought it was working but looking back I don't think so. Side effects weren't great either.

    Savella - Just started this and have yet to notice anything. It did help me come off the Cymbalta with no issues.

    Ambien - So I can sleep through the night (very important!!)

    Tramadol - I hate hate hate it but it definitely works. I hate it because it makes me a little manic and gabby and when I come off of it, I feel just as bad, if not worse, than before. I try not to take it more than a couple days in a row, but sometimes you just can't fight it.

    (Not a medication but...) Massage therapy every 2 weeks. I have to take a tramadol first or it's very painful, but if I don't go, I get so stiff I can barely move. My guy's a whiz and has loosened the worst of my knots.

    (Also not medication...) Hot tub with lots of epsom salts. It's amazing how much this can help.

    Ibuprofen, Tylenol, and Aleve have zero affect on me. I tried Vitamin D and Magnesium supplements for awhile but saw no difference. Now I just take a multivitamin daily and some sublingual B12.
  • gavians
    gavians Posts: 72 Member
    Massage - Definitely something in my treatment plan. However, I just go whenever I an feeling really stiff and sore. It usually makes me feel worse the next day as I recover of the pressure but on the third day I feel much better. Reminds me, I should schedule another appointment. :)
  • i found the tramadol causes me huge headaches from sleeping to hard the next morning. so i only take it when i have to as a sleep aid. it does nothing for my mood swings.
  • ibuprofen - for pain, mostly headaches and such. hate tylenol and only take it if i'm out of ibuprofen.

    methocarbamol - muscle relaxer. it has really helped those horrible twisty excruciating crotch to ankle cramps that would hit me in the morning or the middle of the night while sleeping or just waking up. i still get get the catches in the ribs that feel like an alien is trying to push it's way out from between my ribs, but not as bad.

    tramodal - but only for sleep as needed, not depression. i have noticed it does nothing for me when it comes to depression. but i only use it when the methobarbamol doesn't relax me enough for sleep because i wake up with a horrible headache on one side of my head/neck and shoulder. i think it's from sleeping to long and hard on that one left side.

    ranitidine - i get horriblly excruciating indigestion and acid reflux that likes to wake me up 1 hour exactly from sleep if i don't take it before bed. i do eat celery with some peanut butter for this during the day sometimes and it helps, but doesn't get rid of it long term.

    the rest of my meds are for asthma & allergies.
  • gavians
    gavians Posts: 72 Member
    @nancyinfernle - Wow! You have a lot going on. My thoughts are with you. One thing you may want to look into is sleep apena if you haven't. I hate it and it isn't very sexy but I sleep so much better when I use a CPAP -- it is amazing. If you are having a lot of problems sleeping you might want to ask your doctor for sleep study. They really help keep you in a deep sleep if you snore at all. Sometimes it does backfire because I know when I sleep I don't move a muscle all night and can sometimes wake up stiff. So I have learned to fall asleep in about three different positions and I alternate every night to keep from getting too stiff.
  • greybeh
    greybeh Posts: 72 Member
    I'm in Limbo-land but I thought I'd join you. Limbo-land isn't such a bad place to be right now. I was diagnosed with fibro in 2007 and really had awful troubles. If I didn't get medication, I wouldn't have been able to continue working! Well, I had the pain that moved all over the body, the burning sensations, tingling, sound and smell sensitivity, headaches, overactive bladder, unrefreshing sleep, brain fog, crushing daytime fatigue, coordination and balance issues... I'm probably missing a lot but I had lots of classic "fibro" symptoms.

    In 2011, I got diagnosed with mild to moderate sleep apnea and upper airway resistance syndrome (which I still don't know a lot about but is probably related to my allergies!). I started CPAP therapy in July. A lot of my pain has greatly diminished, and it certainly does ramp up if I my sleep gets interrupted. Two of my doctors say that they think I have "sleep-deprivation-induced fibromyalgia" but they admit they really don't know what CAUSES fibro. I think they might be right and having been diagnosed with fibro, I looked into research and found out that a study in the 70's by Modolfsky showed that depriving "healthy" people of sleep can cause fibro-like symptoms.

    So, I guess that's where I'm at... Walking a fine line where sleep disruption puts me over that threshold. I've got a lot of other pain from knee troubles, osteoarthritis, cervical spondylosis, and mal-alignment problems, headaches... but most of my pain lately has been regional and I can usually "assign" it to a potential cause that makes sense.

    My meds are:

    Soma - I take 1/2 of one at night for sleep and muscle spasms. I started out with flexeril which interacted with another med I took at the time.

    Ultram-for pain.

    Prozac-reduces back pain from a torn disc, reduces foot pain from neuropathy (which has to do with my badly broken ankle in '92), reduces migraine pain, and "lady-issue" pain and also helps with my mood.

    Mobic-a NSAID for osteoarthritis

    Melatonin-for sleep

    Magnesium w/ Calcium and Zinc - reduces muscle spasms

    Vitamin D, Fish Oil, Vitamin B Complex - general health, and Vit B for energy

    I've been through Lyrica, Neurontin and even Topamax. While the nerve pain meds typically do work very well on my symptoms, I don't tolerate the side-effects. Lyrica caused me to feel fatigued and possibly depressed, and Topamax definitely made me depressed even though I had no more daily headaches.

    Been through flexeril, trazodone, amitryptilline... Tried Cymbalta for 10 days but didn't feel right on it at all. I was taking Restoril but have weaned myself off of it now that the CPAP helps me get better sleep.

    I still get trigger point injections in my upper back, for "myofascial neck pain" and recently I was diagnosed with the cervical spondylosis, so that's probably a major cause for the spasms.

    I'm sure a lot of us have a complex medical history. I wanted to share because I'm definitely not 100% by any means and I still have to pace myself and respect the limitations imposed on me by my health. The weird thing is, I was checked for apnea in early 2008 just after I got my fibro diagnosis, but I think the sleep lab had different standards and it sounded like I had apneas but "not statistically significant." Besides, I walked in there and told them I'd just been diagnosed with fibro, so I probably influenced their interpetations. I do have to say that finding a highly-recognized local sleep doctor and following her recommendations about what sleep lab to use made a difference. Apparently, too, sleep apnea is under-diagnosed and I was surprised to hear that a lot of folks with fibro also apparently have sleep apnea but don't know it. So, not sure if it's a co-morbidity for me or if it stressed my body out enough that I ended up with, as the docs say, "sleep-deprivation-induced fibromyalgia."

    Spent so many years looking for "the answer" -- so I know how frustrating it is to have doubts raised. I went kicking and screaming to the sleep doctor and to the sleep test. But my rheumy referred me because he wasn't comfortable that I was still so wiped out despite the sleep medicines he tried that were in his comfort zone.
  • actually i would love to take a sleep study. but i have trouble sleeping in controlled environments. most of the time my insomnia springs from a backwards body clock. normal ppl sleep at night. i normally sleep during the day. when i could i worked swing shift. my kids are swing shift too. my grandson is not. lol!

    i will ask my RA about a sleep study and see what she says. i have been sleeping much better since i got the muscle relaxers.
  • gavians
    gavians Posts: 72 Member
    A drug induced sleep does not give you as well of rest when you can get it naturally. The key is to get into REM sleep as long as possible. I don't think any pharmaceutical sleep adds allow much REM sleep.
  • conidiring
    conidiring Posts: 230 Member
    I take no meds for Fibro. I am very hypersensitive to any meds, so they don't really work for me anyway. On occasion when it's really bad I'll take ibu or tylenol. I try to watch my diet and exercise and that helps keep things in line.
  • yeah so a sleep study wouldn't work for me unless they could do it at my house and then i would be to keyed up by anybody being there. lol!
  • bouquet77
    bouquet77 Posts: 39 Member
    actually i would love to take a sleep study. but i have trouble sleeping in controlled environments. most of the time my insomnia springs from a backwards body clock. normal ppl sleep at night. i normally sleep during the day. when i could i worked swing shift. my kids are swing shift too. my grandson is not. lol!

    i will ask my RA about a sleep study and see what she says. i have been sleeping much better since i got the muscle relaxers.

    Hi can I suggest that if you like them that you eat a BANANA 1/2 to 1 hour before sleep I was once advised by a sleep counsellor to do this and have to say may it be mind over matter i dont know sems to work maybe 7/10 times and its healthy x x
  • greybeh
    greybeh Posts: 72 Member
    I have a tendency toward hypoglycemia. I used to have a banana with lunch, but I had to quit when my body started acting funny. Like, two hours after lunch, I felt nauseated, shaky and yeah, really tired.

    If you have normal blood sugars, the banana probably wouldn't be a big deal. Especially just half. If you tend toward hypoglycemia, apparently the banana really spikes your blood sugar and then you have a big, sudden drop.

    Bananas and I don't ALWAYS get along, but lately I've been ok with them.

    I have a little turkey lunchmeat before bed sometimes (a little sodium, tho!). Sometimes I have cherries or cherry juice.
  • sure, i love banana's. i'll have to try it before bed. thanx!!!
  • I take 75 mg of Lyrica - this really helps my nerve pain and just pain in general. I used to always feel like I was getting the flu - ached soooo bad.

    I take 50 mg of Savella twice - morning/night. This also has really helped combat my pain.

    Then 100 mg of Nucynta X 3 - I have increased this med from 2 to 3 times a day. I am one of the lucky ones and find this helps me greatly for pain. At first they were just giving me the Lyrica and Savella - which did nothing for my lumberradiculopathy and horrible back pain.

    I take Zanaflex 4mg x2 and bed time. This helps me sleep. I can't sleep without it. I thought this was for my pain too which I guess it is, but I was surprised when my doctor asked me if I sleep better now. When I said yes, he replied oh good the Zanaflex is helping you! :)

    I find that I can even exercise finally. For 2 + years i dealt with so much pain I couldnt do any workout at all.
  • I take Cymbalta and LOVE it! I had to move taking it to lunch time rather than breakfast or I would get so sleepy in the afternoon. This way I get sleepy at bed time and get a good night's rest finally. I also was diagnosed with restless legs syndrom. Now that I'm not doing the hokey pokey all night it really helps as well.

    For me once the sleep is under control then my pain levels are generally lower. I do have ultracet for bad days.

    I underwent gastric bypass last week and was shocked I didn't have a major flare. I had to sleep on my back for several days and was in bed a lot, but the hospital had a very cool mattress. Every couple of minutes the air would shift the pressure points, so nothing pushed a specific point for long. Now I'm up and about. I can't go far or fast, but I walk several times a day to keep things moving.
  • TAMMYCLARK62
    TAMMYCLARK62 Posts: 98 Member
    I take Lyrica 3 times a day 50 mg's each time plus I take Elavil 30 mg's and Zopiclone 5 mg's a night to sleep... I take venlafaxine for depression....also I take b12's daily because I have low B12. In February I started exercising slowly and changed my diet......I feel like crap when I eat junk food (chocolate and salt kills me). Now I walk about 60 minutes a day and do some minor strengh training.....I have lost 15 lbs so far and I only take 2 Lyrica a day now. Yoga for Beginner's helps alot too especially back pain. I feel much better since making these changes in my life. I want to be in control of my life not Fibro in charge of me. Hopefully I will eventually be able to take minimum meds and lose about 20 more lbs. All I know is this is the best I have felt in a very long time. I wish everyone lots of luck and keep trying until you find the right thing that makes you feel better.
  • hsmithway
    hsmithway Posts: 191
    It's not a medication, but I recently got one of the little electric pulse massagers (like TENS), and so far, I'm liking it. Really helps with the pain in my lower back / SI joint.
  • TrailRunner61
    TrailRunner61 Posts: 2,505 Member
    It's not a medication, but I recently got one of the little electric pulse massagers (like TENS), and so far, I'm liking it. Really helps with the pain in my lower back / SI joint.
    Where did you get your TENS? Do you have to have a prescription for it?
  • mugsisme
    mugsisme Posts: 127 Member
    I was up to 200mg a day of Savella, and it really helped with the pain. However, my bp was up, my resting heart rate was so high, and when I had a biopsy done, I developed a HUGE hematoma. Took me forever to figure it out it was caused by not weaning off the savella before the procedure. When I finally got a doctor to listen to the whole mess, he took me off it immediately and switched me to cymbalta. We just upped it to 60mg a day, and I am just starting to see results. However, I am soooo tired. Exercise now is a joke. So either I can be in total and complete pain, and have the energy to exercise, or I can be in less pain and drop dead tired all day.

    I am trying to see if food affects my pain at all. I cut out caffeine this week. (Maybe THAT is why I am so tired???)
  • tig_ol_bitties
    tig_ol_bitties Posts: 561 Member
    1200mg Etodolac/day
    20mg Cymbalta/day
    800mg Gabapentin/day
    100mg Lyrica/day

    And those are just my Fibro meds. Don't even get me started on what all I take for my Lupus!
  • kimiel51
    kimiel51 Posts: 299 Member
    I was up to 200mg a day of Savella, and it really helped with the pain. However, my bp was up, my resting heart rate was so high, and when I had a biopsy done, I developed a HUGE hematoma. Took me forever to figure it out it was caused by not weaning off the savella before the procedure. When I finally got a doctor to listen to the whole mess, he took me off it immediately and switched me to cymbalta. We just upped it to 60mg a day, and I am just starting to see results. However, I am soooo tired. Exercise now is a joke. So either I can be in total and complete pain, and have the energy to exercise, or I can be in less pain and drop dead tired all day.

    I am trying to see if food affects my pain at all. I cut out caffeine this week. (Maybe THAT is why I am so tired???)
    [/quote

    The Savella meesed with my heart too. I had a lot of palpitations and pounding heartbeat. I really don't think it helped anyway, so I weaned off. I haven't been back to the doctor to try another drug yet. I'm just doing the Meloxicam for pain. I think tired just goes along with the Fibro! ]
  • gavians
    gavians Posts: 72 Member
    I was up to 200mg a day of Savella, and it really helped with the pain. However, my bp was up, my resting heart rate was so high, and when I had a biopsy done, I developed a HUGE hematoma. Took me forever to figure it out it was caused by not weaning off the savella before the procedure. When I finally got a doctor to listen to the whole mess, he took me off it immediately and switched me to cymbalta. We just upped it to 60mg a day, and I am just starting to see results. However, I am soooo tired. Exercise now is a joke. So either I can be in total and complete pain, and have the energy to exercise, or I can be in less pain and drop dead tired all day.

    I am trying to see if food affects my pain at all. I cut out caffeine this week. (Maybe THAT is why I am so tired???)

    Cymbalta is definitely the cause of being tired. It completely wiped me out for the first several months. It does it better but you never really have the energy you have without. Getting off Cymbalta is just as bad if not worse. I don't think the minor incremental benefits of Cymbalta are worth it -- at least for me.

    Caffeine doesn't bother me but I know that diet coke does. I gave up all pop but drink a lot of coffee. I am off all fibro meds now with exception to an over the counter medication based on Malic Acid for fibro. I think between the Malic Acid and no more asparatheme, I almost cured. I still have my moments when I get tired or very hungry it starts kicking in. But I am finally able to work out again without the impacts I used to.
  • Amazon_Who
    Amazon_Who Posts: 1,092 Member
    I took Gabapentin for a while but the weight gain was counterproductive and I never felt good on it.

    Now I take several thing intermittently for relief form symptoms: Flexeril, Ibuprofen, Ambien CR and rarely Vicodin.

    I have been taking a homeopathic product http://www.trpcompany.com/fibromyalgia-relief.html
    It also contains Rhodiola rosea. When I finish the bottle I will make a final decision but so far it has not helped.

    I am going to look into the malic acid thanks to this thread.
  • CharisSunny
    CharisSunny Posts: 276 Member
    Hey all, new to MFP but not that new to weightloss.

    I'm currently on Gabapentin and Magnesium malate. Tried Lyrica, caused weight gain. Tried Cymbalta did nothing for my pain or my depression.

    Indirectly I'm on Wellbutrin just recently for depression and anxiety not sure how that's doing just yet.

    I take Nise and Neurobion for pain...those work on and off.

    In a bad place right now, meds are just a formality...working through the days
  • linder4866
    linder4866 Posts: 11,430 Member
    Hello - any advice? I have fibro and have been through 2 doctors. The 1st gave me an antidepressant and a muscle relaxer. The 2nd doctor said after the initial flare it will never be that bad again. Ok, so I stopped taking the antidepressant . I took 6 - 8 500 mg Tylenol every day for years but this Spring, I weaned myself off of them. I also only take Flexeril when I truly *have* to. I talked to my doctor again this year and he doesnt seem to think this illness is worth treating. Or maybe he doesn't believe it's real? I don't know. Opinion based on your experience??? I'm in a lot of pain right now---should I try Tylenol again or Flexeril? Or just tough it out? Thanks.
  • VonaAnn
    VonaAnn Posts: 6
    :) Hello Everyone!

    I just found this site about a week ago. I use to track my calories on Sparkpeople, but I like this site better.

    I have Fibro, CFS, and symptoms of Lupus however not enough symptoms to label me as having Lupus. I currently take, Savella, Trazadone, Celebrex, Vit D, Tumeric.....and I think that it is. (It's enough that's for sure) The Savella works for me. I was worked up to 100mg twice daily, but it made me feel sick, so I take 50mg twice daily. The Trazadone helps me sleep. I'm able to vary the dosage as I need it.

    My weight has gotten out of hand since I've been diagnosed with Fibro. I currently have to really lose weight or else I'll have to go on BP meds. I just started doing Zumba on the Wii, and although I'm super sore, it is fun to do. My daughter and I take turns and I go low impact. A little shaking of the hips here and there, and some clapping and I'm sweating up a storm. It isn't much, but it is something!

    Gentle hugs to everyone!
  • VonaAnn
    VonaAnn Posts: 6
    Hun, it took me awhile to find a Dr. who was capable of treating my fibro. I would suggest asking around and looking for a new provider. Many people suffer way to long than they should!
  • linder4866
    linder4866 Posts: 11,430 Member
    Thanks for the comments. I'll just keep on keeping on and try to use the resources I have. I am curious to know about Zumba on Wii. I don't have a game console right now. I heard you have to wear some kind of belt with the remote in it when you do Zumba with the Wii system?? How's that work? I see the Zumba web site shows Xbox Kinect now and apparently you do not have a belt or anything for that system. Again, thanks for any info. I haven't had a game console since the old Playstation days. (I mostly use my handheld Nintendo DSi---can't Zumba with that.)

    Wishing everyone wellness and success.
  • VonaAnn
    VonaAnn Posts: 6
    Yes you have to wear a belt. The Wii has been sitting until I decided I wanted to use to to lose some weight. My son has an Xbox, but we don't have the kinect, and I'm sure I would need to schedule an appointment with him to use the Xbox. I've tried the Wii Yoga and liked that one as well. I think we all have to try and move somehow, and it's a trial and error game. I'm super sore today, but it isn't Fibro sore, it's from moving sore. (If that makes sense) When I tried the Dance Dance Revolution on the Wii board last week, it made me Fibro sore!
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