Fibromyalgia (At least so they say) any others have it how do you cope?

  • 2weeks on the newer medicine, Cymbalta (I think that is how it is spelled) he has me on a lower dose, by he I mean my Rhumatologist. I am being tested for a few other choice things half of them I can't even spell but the cymbalta seems to be working! I finally do not have the days where I ache to the point I can't get out of bed, most of my spells are accompanied by low grade fever... I was diagnosed with costochondritis as well (inflammation in the joints where the ribs meet the sternum) so sometimes I have severe pain but regardless the Cymbalta is helping I think. That and class (Ballet)

    For those that have Fibromyalgia what are some of the things you do to help when you have a down day? They thought for awhile I had hypothyroidism but then the endocrinologist was a quack that just wanted to shove expensive protein shakes down my throat and get more money out of my wallet NOT going to happen But Deciding regardless Not going to have an excuse to sit on my butt any longer!!!!! would love to talk to others and get some ideas on exercises you guys do that is considered easy on the joints... when you have a rough day do you stay in bed or force yourself out??
  • I was originally diagnosed with Rheumatoid arthritis about 10 years ago but this was recently changed to Osteo arthritis and Fibromyalgia.
    When I lived near the ocean I could swim for exercise but now finding water is more challenging.
    I have found walking inside on carpet works for me, sometimes its very painful but I have also found I can walk through the pain. Since I have been walking for an hour a day I rarely get the awful leg pains I was getting at night so the exercise has had an extra benefit.
    They say that exercise outdoors burns more calories but I have been steadily losing weight with the indoors walking.
  • Lakota...I, too, have fibromyalgia (and trying to diet...). I have had it for 12 years and think I have learned to cope somewhat. For me, the regime that works fairly well is Effexor,Celebrex and some pain killers.

    A great author of fibro books is Devin Starlanyl. I am reading her book, "Fibromyalgia and Chronic Myofascial Pain Syndrome." She talks about trigger points in there (which are not the same as the tender points), and I am trying the "tennis ball" on these points.

    Devin also wrote a book on coping with fibro...and it is a great book for someone that is newly diagnosed with FMS.

    A few things that work for me (thru trial and error)...high doses of potassium if the leg cramps are bad. Don't know why it works. Sometimes just keeping my muscles warm (electric blanket or heated throw) will help me thru a flare.
    I also use Theralgesic to rub on the muscles if it is awful. You can buy it just about anywhere. My husband used to bring me some home from the fire dept before you could buy it in the store. A heating pad for me is essential. D3 has helped me (3,000-5,000 units).

    I found a great website...but don't know the link (gotta try to find it again)..but it is called Daily Strength. I got some wonderful feedback on the difference between tender points and trigger points. Plus they had a lot of info on different "treatments."

    Hope this helps. Is there a library on the base? Even my tiny one has some books on fibro.
  • Lakota...it looks like there is a lot of info just on this site. Look at the top of the page of "Obstacles." There is a sticky that is for fibro...plus scrolling thru the forum, I found fibro mentioned in many posts...you are not alone in this.

    In my stash of "things I buy but never use" -- I found a DVD yesterday called "Yoga for Aches and Pains." I watched it last night, and I think it could be doable. I am in a big black boot on my left leg right now (achilles tendon) and am supposed to be resting the leg...but I thought this might work until I am back on my feet again. I also saw one on Amazon.com that was "Yoga for Fibromyalgia" or something like that. It was pricey, tho. (I didn't buy it).

    Also, I always have to stretch in the morning...I had a massage last week, and that seemed to help (I have been having a lot of flares due to a lot of stress, I think).

    Hope this helps. This seems to be a great site for people struggling with obstacles. (I had never looked here before even tho I have been with 3fatchicks on and off for the last few years).
  • Hi I do not think doctors are ever really sure. I have taken Lyrica and celebrex and my doc wanted me to try Cymbalta but I refused. I do take Neurontin/Gabapentin for the fibro and I take Plaquenil for my auto issues.

    I have not exercised in about 4 months as the fibro trigger points in my bum and lower back hurt too much. I am now allergic to nearly every pain pill but I am now on an over the counter and one from India called NISE. With these I have gotten some relief and have started walking again.

    My rheumy recommended low impact-walking, swimming, but on the days i can, I do the Wii More Workouts (cardio boxing, squash, tennis, step aerobics). On the day I can't, well I just don't. Above all listen to your body and you will be fine.
  • My doctors put me through loop hole after loop hole and diagnosed me wrong twice (acute pancreatic disease and also removed my healthy gallbladder. P.S I was 20 years old when I was diagnosed)

    They put me on tramadol (which i got addicted too) cipralex (anti depressant) and eventually lyrica. I had to drop out of college and I couldnt drive, work or anything.

    After a year of taking lyrica I found out that it actually kills your nerve endings that make you feel pain in your body. I confronted my doctor about this (because she originally told me it was safe) and she admitted that she lied to me. I eventually stopped all my medications because my symptoms went into remission and that way a year and a half ago.

    Be careful with meds. I honestly found that the meds made everything worse. I couldn't do anything but be a sloth. It was when I stopped the meds and started exercising that I felt I could get through everything. The doctors told me I would be on meds for the rest of my life. It was complete bull crap.

    Try natural options if you can. Eating better, exercising and getting plenty of rest. If you have problems sleeping try melatonin supplements. For pain try something that won't hurt your body in the long run (narcotics can do major damage long term). Get massages and start seeing a chiropractor once Or twice a month to make sure your body is in proper alignment.

    Send me a PM if you wanna chat
  • I'm actually allergic to most of the meds for fibro, so I've never been able to take any long term. Plus, lots of nasty side effects, which is a major turn-off. I think yoga helps a ton (I do mainly ashtanga) and low impact cardio (like using an elliptical trainer) helps me--some studies have said cardio helps in general. Weight loss is good, I think it just helps relieve some of the other pressures on the body. Getting enough sleep and trying to keep the stress down is a must, too! For sleep, I have a "sleep sound therapy system" that can help distract me enough to fall asleep on an average night.

    And, I think the main thing that helps me get around is knowing that no matter how much pain I'm in, it's not really harming anything, y'know? So pushing through it isn't destroying anything, really. Even though it sucks when I AM injured and it takes seeing blood or something to realize it lol
  • For fibromyalgia I take LYRICA and it helps, I am also taking CYMBALTA for depression. Pain seems to be under control. Problem is because I have RA, I take PREDNISONE and that hinders weight loss