Fibromyalgia Thread

Discussion in 'disABILITIES Community Board' started by toocherie, Apr 30, 2009.

  1. toocherie

    toocherie <img src=http://www.wdwinfo.com/dis-sponsor/images DIS Lifetime Sponsor

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    Talking with some ladies on another board it appears that there are quite a few of us with fibro--and I know others have posted on this board about it as well. I thought it might be good to share our ups and downs with this disease and new developments.

    Welcome!

    I was diagnosed about thirty years ago by a rheumatologist who was on the cutting edge of the disease. At that time it was called something else (which I can't recall) but he did the point test and told me I had it. I was re-diagnosed a year or so ago.

    I also have OA so the medications I take for that seem to help the Fibro. I need more exercise (I know, I know) and when the weather changes I have a lot of pain.

    What type of symptoms do you get and how do you relieve them?
     
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  3. Boo Bear

    Boo Bear DIS Veteran

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    :wave2: I'm Bridgette, I'm 24 and I was diagnosed a little under 10 years ago when I was 15

    I suffer from chronic headaches among many other things.

    Another thing that could possible be attributed to fibromyalgia is reoccurring stress fractures in my feet. In my right foot, where it primarily happens, it's in my second metatarsal and gradually happens when I wear shoes without arch support in combination with being on my feet for long stretches of time.

    During seasonal changes into the colder months I get severe joint pain in my hips, wrists, spine and ribs.

    Right now I'm having a lot of trouble with my chest area radiating through to my back. I keep thinking that I need to take my rescue inhaler but it doesn't work. When I take an anti-inflammatory like ibuprofen it helps a little.

    I've taken Lyrica but it made me really agitated so it wasn't worth it. As of right now I just cope. I also break a Loritab in thirds and take that when needed. I usually don't take more than 1/3 a day.

    I just began Topamax for the headaches and it's REALLY helping. So the headaches are probably more migraine than Fibromyalgia.

    I continue to have chronic severe pain at the base of my skull more than anything else. It is constant and rarely ever subsides. There are days where I struggle with the pain over control of my life. I always get through.
     
  4. toocherie

    toocherie <img src=http://www.wdwinfo.com/dis-sponsor/images DIS Lifetime Sponsor

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    Bridgette: I've also had repeated stress fractures in my feet. and now my feet are "morphing" (I don't know what else to call it) and the toes are turning in while the rest stays normal (which makes shoe buying a real pain!)

    Other than Mobic, Advil and occasional prescription painkillers I just cope too. Rain is awful. The day or two before I'm really in pain--I am my own barometer. The other weird thing is that when I lived in Utah I always knew when it was going to snow because my nails would all snap off!
     
  5. Boo Bear

    Boo Bear DIS Veteran

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    Yeah I'm my own barometer too. Usually when its about to storm I feel like my eyeballs are going to pop out :eek:
     
  6. toocherie

    toocherie <img src=http://www.wdwinfo.com/dis-sponsor/images DIS Lifetime Sponsor

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    Omigosh--so humid here--threatening rain--and I ache all over! Of course, that hasn't stopped me from clothes shopping, puppy shopping, tomato plant shopping and cat food/litter shopping. So far the only thing I wasn't successful at was the puppy shopping (but I have an appt. with a breeder at 4 p.m.)

    I've found with fibro you just have to push through the pain . . . .
     
  7. arminnie

    arminnie <font color=blue>Tossed the butter kept the gin<br

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    I have a friend who will call and say "How are you doing?" Sometimes when I automatically say "Fine" -she will reply "No you're not - the weather is changing so I know you feel awful like I do."
     
  8. Boo Bear

    Boo Bear DIS Veteran

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    Keep at it Cheryl, you'll find your corgi! (I read that somewhere, right? or did I dream that?)
     
  9. goofy4mykids

    goofy4mykids Mouseketeer

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    Hi Im Kim and I was diagnosed about 3 years ago. I take Evail for the pain and that seems to help. I also had Cyber knife Radiation on my brain in 06' so complications from that can make it hard. I push forward and thank the lord I am here.. I have a DS 9 who has Asbergers Syndrome and a beautiful DD 4. I am tired of being tired all the time... I feel bad when I tell the kids or DH I dont feel well enough to do something or that it hurts when the kids want to hang on you... any advice on how to get through the bad days without feeling like you are letting your love ones down?
    TIA-I am glad you started this thread!!:grouphug:
     
  10. Boo Bear

    Boo Bear DIS Veteran

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    Nice to meet you Kim. I'm sorry that I have no advice for you about not letting your loved ones down, as I'm still trying to figure that one out for myself. I've never heard of Evail... what is it like? Any side effects?... Duh! What doesn't have side effects?! *sigh* It's been a tension headache filled headache for me today and yesterday. It hurts badly behind my ears today especially. :grouphug: to everybody. Keep staying strong!
     
  11. toocherie

    toocherie <img src=http://www.wdwinfo.com/dis-sponsor/images DIS Lifetime Sponsor

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    Hi Kim--welcome to the thread. Could it be Elavil that you are taking? I know that Elavil is a commonly prescribed drug for fibro--it has been used for many years. I guess when it gets bad for me I try to be happy with the things that I CAN do--and I'm thankful for that. I'm sure your family understands and that they would rather have you not in pain.
     
  12. toocherie

    toocherie <img src=http://www.wdwinfo.com/dis-sponsor/images DIS Lifetime Sponsor

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    Yeah--it's really weird--especially when its going to rain. Just ache all over.
     
  13. bookwormde

    bookwormde <font color=darkorchid>Heading out now, another ad

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    I know this is not a practical solution for most people but a best friend and business partner actually moved to Florida (west coast island) and it made all the difference in his quality of life.

    bookwormde
     
  14. Momelie

    Momelie Mouseketeer

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    ROFL!!! I live on the west coast of FL, and while I really do better here than I do at our other place in TN, remember that FL has the rainy season in the summer - every single day!!!!! And yes, the fibro is an absolutely accurate barometer, I can always tell the minute it starts to fall!
     
  15. goofy4mykids

    goofy4mykids Mouseketeer

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    ooops! Sorry It is Elavil that I am taking! We moved to GA a year ago for the warmer weather... I love it.
     
  16. stampin_fool

    stampin_fool Mouseketeer

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    HI Everyone,

    I was diagnosed about a year ago and have been on Cymbalta for about 5 months with no relief in my symptoms. I am going to the doctor tomorrow to hopefully get her to give me something else to try so I am glad that I ran across this thread. I also take hydrocodone for the pain and that doesn't really help at all either. Like some of you said, I am tired of being tired and I am tired of being in pain to the point of tears some days. For those of you on the Elavil, what kind of side effect have you seen and has it helped you at all for the pain? We also live in GA but this winter has been so cold I don't think it has helped at all. Thanks.

    Ronda
     
  17. goofy4mykids

    goofy4mykids Mouseketeer

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    Hi Ronda! I have been on Elavil for over a year.. It has helped a great deal It took about a month before I felt any relief. It is also a Antidepressant. I started out on 50 mg and now take a 100mg about an hr before bed. Side Effects :it helps you sleep which is a good thing and it also helps with my headaches. I still am in pain daily (feel like I have the flu) the Elavil helps me manage it.

    Today with the rain was a bad day... I get real snappy with the kids when I am in pain.

    This was my first winter in GA, Im glad the weather here is not supposed to be this cold.....Although it was better than NJ!!
     
  18. stampin_fool

    stampin_fool Mouseketeer

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    We moved here from MA six yrs ago and it has been warmer than there. This is the first year I have been freezing during the winter. It certainly doesn't help the fibro. Does the Elavil help with the Fibrofog. I wouldn't mind if it helped me sleep since I can't seem to do that at night. Now during the day, I could fall asleep at the drop of a hat! I will have to ask my doctor about this tomorrow. Thanks for the info, I appreciate it!!!

    Ronda

     
  19. goofy4mykids

    goofy4mykids Mouseketeer

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    Ronda

    I couldnt say about the fibro fog cause I have other issues with the brain, ie swelling and some scar tissue.

    Good luck today at the Docs!

    Kim
     
  20. michelle9343

    michelle9343 DIS Veteran

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    I was diagnosed with Fibro 3 years ago and lupus 2 years ago. I am currently taking way too many meds and everytime i go to my rhumy he just wants to add more....My biggest triggers are stress and being over tired. I use to be the energizer bunny now I am much more like eeyore!!!!
    My feet, ankles and hips hurt the most and my headaches are horrible....I started going to a massage therapist but it cost way too much and it was only temporary relief.
    It is really amazing how debilitating Fibro can be.
     
  21. Boo Bear

    Boo Bear DIS Veteran

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    Just checking in today. I hope everybody is having a better day today. I've been having a hard time the past couple of days. My core is still very sore from my sternum straight through to my spine. I am still short of breath and I have a pinching pain at the base of my skull that even the narcotics or naproxen won't soften. Nothing new for me really, but it's dampening my spirit because I finally have a free stretch of days to work around home to prepare for my move westward.

    WHEW! Ok, I feel better now that I got that out... Now I'm going to go get to work! :yay:

    I was put on Cymbalta once and I just couldn't deal with it. I felt like I was crawling out of my skin so I went off of it. I am happy with my anti-depressants so I'm not sure if I should try something else?

    I'm exhausted with the hydrocodone option as well, I take loritab because it has less APAP than the vicoden ex. Sometimes it gives me digestive upset too. :sad2:

    I'm happy that your new home has been better for you during the winter. I know what you are talking about with the flu like symptoms. Sometimes I feel drained as though I have a fever or the flu. Hang in there!

    Massages help me too, but they're a band-aid and it is frustrating not to be able to find a permanent solution. I got a deep tissue massage and it was HORRIBLE but the relief lasted awhile longer than a regular massage.
     

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