Fibromyalgia Thread

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

  1. mommasita

    mommasita DIS VETERAN Moderator

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    Hi pannm.. It breaks my heart to read that...

    I was diagnosed in my 30's, but I am SURE I had it as young as your daughter.. I can relate to every single thing you posted..

    When I was young I had episodes of not walking due to pain, the migraines, etc.

    I use heat for the aches and pains.. I find it is a temporary relief, but any is better than none.

    Your question about long flares.. Personally, they rarely have lasted months. Days, weeks, YEP... For me, and my Dr. is with me on this one, the changing of seasons brings out the absolute worst.. I am not sure how warm in the South you are.. I am N O R T H, and this time of year wrecks havoc.. I tend to just go with the pain, heat, rest, especially with the migraines..

    I wish I had so much more to say, but none of the pills have ever worked for me. Not enough to take daily..

    I am sorry if you covered this ( i have memory issues) has she had a brain MRI for those migraines, or a CTSCAN? Just to appease yourselves...

    And I wish my Mother had me speak to someone professionally for all that I was going through.. Especially when you seem to be the odd man out (so to speak).. I do weekly now, and it helps me SOOO much... If anything to just clarify I am not crazy, this is real, and it is happening.. Know what I mean?

    I can hear your hearbreak for your little girl.. I wish I had a magic wand... Sending lots and lots of gentle hugs to your family :hug:

    Please feel free to ask away!
     
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  3. pannm

    pannm Mouseketeer

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    Yes, we've done CAT scans, MRI, CT scans, every test imagineable pretty much. It's so crazy because some things show up- they look abnormal. But, it is so upsetting because nothing made sense in her test results. "you have this wrong, but not THAT wrong- so it can't be this disease..." We've heard it for a while now. The more I read about Juvenile Fibro (and fibro in general), the more things make sense!

    Next week, she changes her anxiety/depression meds. I am getting nervous about that. Last time we tried messing with her dosage, she fell into a major slump. We have to change it though in order to try her on some other medications for her pain control. It may take time to get it right. At least we're on the right track now though-
     
  4. niftywench

    niftywench Jenne From The Block

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    hello Fibro Friends!

    I just returned from 10 days at WDW and i am very proud to say I MADE IT!! I can't believe it. not ONE flare up! i was a wreck for weeks thinking I'd be in the resort every day not having fun. but i did it. i also had a day at Discovery Cove which was just a day of swimming and relaxing and it helped a lot.

    Of course, now that I'm home i feel like collapsing, but I went to my chiro this morning nd she helped me a lot. Does anyone else use a chiropractor at all? I truly feel seeing one has helped me gain a few extra spoons :)

    take care everyone.
    namaste!
    jenne
     
  5. rosanab1031

    rosanab1031 Mouseketeer

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    Yay! Glad you had a good time!

    I love my chiropractor! I always feel much better after I see her. Just wish the benefits lasted longer. My chiropractor also does a little massage which is great :)

    I also do acupuncture, massage, and muscle injections :)
     
  6. mommasita

    mommasita DIS VETERAN Moderator

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    Oh Jenne, how wonderful..

    I find the same thing when I go away.. Hey, at least you had an amazing time and a nice reprieve!!!!!!!!!!!!!!
     
  7. mommasita

    mommasita DIS VETERAN Moderator

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    Yes, you are on the right track.. It can't be easy for you either...

    What a wonderful Mom you are:hug:
     
  8. SallyDean

    SallyDean Earning My Ears

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    This sounds like my childhood. I am 28 now and yes I do have Fibro and Ulcerative Colitis. I also have an immune deficiency. I tried to read all of your posts an I didn't see you mention any testing by or for an immunologist?
    If not, I would definitely ask for it. All it takes is some blood work and it can give you some answers. In my own case I have had to have IV blood infusions every week for almost 10 years because my immune system just can't protect itself. That's just the way I was born. That's why I always had so many un-diagnosed problems.

    Also, I want to mention that it might help if you are comfortable with it to have her see a mental health professional. You as well, cognitive behavioral therapy can be helpful when presented with a new way of life. You have to change the way you think and approach things. And maybe you and she (and your family) will benefit from an outside perspective on this very frustrating time.

    You're a good mom and I wish the best for your girl.
     
  9. Aurora D

    Aurora D Mouseketeer

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    Hi all-I am a first time poster. I usually hang on the Budget Board and lurk the Dining Reviews. LOL. I've had fibro for about 6 years. It manifested after I had abdominal surgery. I've also had numerous fender benders, always rear ended, I feel like I have a target on my back. So I've had neck issues for about 15 years. Anyway....I have noticed a pattern of feeling pretty good during the spring and summer. My really bad symptoms don't usually start till about November. This year however I feel terrible already. I teach 2nd grade and I already called in sick today(only 3 weeks into school). I didn't sleep all night. Woke up officially at 4 am with a completely stiff neck and terrible leg pain. Before I went to bed last night I told my husband I would make him a sandwich for his lunch and leave in on the top shelf of the dryer. He looked at me a little funny. Haha. But I feel like here comes the fibro fog again....I feel so unfocused.
    Just wondering if everyone feels like their fibro is worse in the fall/winter? I don't take any kind of medication. I haven't been to the rheumatologist in about 4 years because if I won't take meds what's the point. Just looking for some commiseration I guess....and i have an appointment tomorrow night for a massage. Does anyone have experience with massage? Does it help?
     
  10. rosanab1031

    rosanab1031 Mouseketeer

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    Agreed! Mental health is just as important and in some cases necessary. I know it was suggested to me when I was first diagnosed. It did help.

    My fibro is always worse when it's cold. So annoying because I actually like the fall/winter :( I hate heat! Lol.

    I have fibro fog AND ADD. It's a bundle of fun over here!!! I really wish... um... I forgot! Lol. Wow. Okay moving on!

    I also choose not to take meds. I do take some ibuprofen and/or vicodin when my pain gets too hard to handle. I try not to do it too often.

    I use massage, acupuncture, chiropractic, and muscle injections. It's just hard to stay on top of all the appointments sometimes with my work so I don't really get all the relief I could/need. I'd say these things definitely do help but it's temporary.

    Much love and many gentle hugs to all! :grouphug:
     
  11. mommasita

    mommasita DIS VETERAN Moderator

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    Welcome Aurora, :flower3:

    On the cold issue. YES YES AND YES.. I have an almost perfect summer.. The changing of seasons seem to hit me HARD.. Right now the weather is just perfect (odd, but I will take it) and the sun and warmth just seems to go right through me and heal ..

    Not trying to be bossy, but I don't take any meds specifically for Fibro.. I have tried and all have either done zip, or made me react in a way of which I didn't like. Basically, they didn't help. I still see my Dr, but he is a godsend... Have you had an XRAY of your neck and spine? Just to see for a possible fusion or bone spurs? I recommend keeping in touch with your Dr.

    The memory.. Oh my.. well, I have had brain surgeries, a stroke in the last. And this lovely piece has left me with permanent memory loss.. Frustrating, I know.. I have lists for my lists... Alarms that go off to remind me... I have tried some memory games on the comp and in therapy, but I usually end up :scared:..

    :hug: to you
     
  12. onnawufei

    onnawufei The Girl With the Ninja Turtle Tattoo

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    This sort of thing scares the crap out of me. I've always been afraid to drive, so I've never even learned how. I always thought that maybe eventually I'd learn, but now that fibro has the habit of chewing on my brain meats I definitely do not plan on learning to drive. Between the fibro and the meds for fibro (it figures!) my memory and attention span are shot. I so do not need that kicking in while I drive.

    I finally broke down and told my husband I was thinking of getting a walking stick (which sounds better than "cane", at least to me). I told him ahead of time that he's not allowed to make fun of me for it though. We've always been the kind of people that tease and pick on each other constantly, (I've even noticed people thinking we were actually fighting) but there are limits. Maybe if I do decide to go with the stick and get comfortable with it, then I'll tell him it's okay to tease me. ;)
     
  13. rosanab1031

    rosanab1031 Mouseketeer

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    DO IT DO IT DO IT!!! Lol. I love my canes! :D

    I have two! The first one is one of the cheapos from Wal-Mart that I wrapped in zebra print duck tape :cheer2:

    My second one is a custom cut one that I bought at San Diego Comic Con this past summer from a guy who specializes in steampunk accesories :D I call it my classy cane :groom: And its gorgeous! Haha!

    I do get some weird looks especially at Disney but I don't care! Helps me get through my long Disney days when I don't feel like being high on meds. Lol. :dance3:
     
  14. SallyDean

    SallyDean Earning My Ears

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    I have a question. The last couple of posters have said they have decided not to take medicine specifically for they fibro. How and/or why did you come to that decision?

    I've been on meds for over 9 years and I'm running out of effective options. So I'm just looking for other ways to treat/cope right now.
     
  15. rosanab1031

    rosanab1031 Mouseketeer

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    All the meds made my fatigue worse. They made me so tired that I literally could not function. I was falling asleep EVERYWHERE I went with little to no difference in my pain level.

    I take pain meds like ibuprofen and vicodin when things get unbearable.
     
  16. Smileybug

    Smileybug Some honey for my old tags back

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    Hey ya'll. :goodvibes
    I have had fibro for about 15 years. For the most part I've learned to just make the best of most situations. But traveling is becoming harder and harder. Due to the sitting while driving and hotel beds. We usually stop more often now to let me get out and move. Other wise the stiffness becomes unbearable. Now the hotel beds.... do any of you travel with any type of mattress topper? If you do what type? I have to find something that works or our vacationing may be in danger. If any of you have any suggestions..... help please.
     
  17. rosanab1031

    rosanab1031 Mouseketeer

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    Yeah. Long rides whether in the car or on a plane suck! My lower back gets so tweaked and the rest of me gets so stiff. I am dreading the flight to Europe. Why don't we have instant transportation devices yet? Lol.

    I have lucked out so far with hotel beds so I never really thought a mattress topper :) Hope you are able to find a good one!
     
  18. mommasita

    mommasita DIS VETERAN Moderator

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    I say go for it.. I am probably close to it myself.. Glad you both have a sense of humor :)
    I have tried what seems like EVERY drug out there.. Either they didn't do squat, or they had some icky side effets.. One of my best friends is doing hot yoga, and swore to me she hasn't had a single flare in two months of it.. It sounds :scared:, and if I get the ok from my Dr (my rotators are torn) I may try it..

    I came to that decision, simply because nothing worked.


    HI there!

    I don't travel far by car, I coudn't.. I agree stopping will do you good, and keep your blood flowing.. I do bring my neck pillow for the plane, and my body pillow wherever I go... Good idea about the bed topper.. Hmmm, maybe an egg crate?
     
  19. SeaSpray

    SeaSpray Disney World fan since 1976

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    Welcome to the thread. I'm so sorry for what your daughter and you are going through. :hug:

    It is a relief to get a diagnosis so at least you know what you're dealing with. It seems that with fibromyalgia, it's mostly about treating the symptoms the best you can while trying to balance life so that you don't cause any additional flare-ups or prolong flare-ups.

    Maybe eventually more research will be done and with that more relief.


    I can remember back to my 20's starting with symptoms of fibromyalgia. I think at that age and time (the 80's) I mostly dismissed the varied symptoms and never thought that together they represented anything.

    I get vertigo from time to time and I have a prescription for meclazine (Bonine is the brand name) to take when that happens. (I also take meclizine every day while on a cruise, and I've never had seasickness or dizzyness after the cruise).

    This is so interesting to know! I know for a fact that my IBS (irritable bowel syndrome) started in my early 20's, and now it's commonly known that people will often have IBS and FMS. I also have been diagnosed with RA for several years, and again there seems to be a link. A lot of the auto-immune diseases, I guess. :/ I've also had mild fevers a lot during my life, always feeling like I'm on the verge of coming down with the flu or something, always feeling like I'm fighting something off.

    I seem to have flares that last for months, for the last few years. I only have the occasional good day or week.

    I use heat for temporary relief. I also will use Biofreeze for temporary pain relief.

    As for Lyrica, etc, they haven't helped me much at all.

    I'm so glad that you had an awesome vacation! I've had mostly very good experiences with flares while on vacation, I think it's the adrenaline that kicks in that helps. Then I totally crash when I get home. For WDW and for a cruise, the after-crash is totally worth it, but I've had to cut out on smaller vacations and trips because I can't stand the thought of the crash when I get home.

    Welcome to the thread. I think that massage would be great; I've had professional massages in the past, but not in the last few years. But when my DH rubs my back or shoulders, it does help. They just have to understand that they can't be too rough because our muscle pains are not the same as other peoples'. I hope the massage helps you.

    I see a psychologist a few times a month. I started seeing him for something unrelated to my physical health, but boy he's been great to talk to about having an "invisible" disability, so to speak. He's been a great help about encouraging me to tell my family and my primary care doctor how bad the pain really is, and to not be afraid or ashamed to take it easy on myself when I'm feeling really lousy. I had been keeping a lot of it to myself and only venting to him about it. He has several patients that he said he sees to help deal with fibromyalgia, and other similar diseases.

    I've found myself starting to daydream (for lack of a better word) while driving, so now I really make myself pay attention. And I don't drive too far for anything, fortunately.

    I like the idea of a cane but due to my RA and carpal tunnel, I'd end up splatted on the ground if I relied on the strength in my hands and wrists to keep me up. LOL


    Your cane sounds pretty cool!


    I tried amytriptline (SP?), Lyrica, and gabapentin. I didn't notice much improvement so I stopped taking them. I did try them for several years because I know they have to have time to build up in your system.

    I currently take Adderall XR due to the extreme daytime drowsyness and lack of concentration that I have. I have noticed a definite improvement, though not a miracle cure, so I am still taking that. I also take Plaquenil for RA. I don't know how much that's helping because I'm in a lot of pain every single day, but don't know if its from RA for FMS.

    I've to totally eliminate road trips. :( I haven't been back to NJ to see my family in about a year and a half, and I used to go a few times a year. I just can't bear the thought of that long of a car trip (about 5-6 hours), and then getting there and not feeling well enough to do anything with my family.

    Regarding beds, usually I don't have a problem but last year on the Disney Magic I don't know if it was me or the bed, but I had a hard time getting comfortable and ended up with a fair amount of pain from sleeping.

    Even at home now with our awesome pillow-top bed I have to place pillows under my legs, next to my sides, etc, just to get comfortable and not wake up in extreme pain. I wear wrist splints to sleep in for carpal tunnel and those things work great; I wish there was a body-cast type thing that would hold my entire body in the correct position while I slept. LOL But next time we travel I will ask for extra pillows to use.




    Hey, have any of you seen or heard from tigger at all? I hope she's ok!! :worried:
     
  20. mommasita

    mommasita DIS VETERAN Moderator

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    Hi SeaSpray..
    No, I sure hope she is ok, and just busy..:grouphug:
     
  21. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi everyone:

    Just wanted to stop in and see how everyone is doing and to say "hello".

    Not too much new with me; same old pain and fatigue, but now I'm also experiencing sporadic muscle weakness. This evening my arms feel like they're weighed down and it's an effort to even lift them to type. :confused3

    I only work 26 hours a week and some weeks I feel like I barely make it through. :faint: I called out of work today and basically slept most of the day, so I didn't even accomplish much of anything at home either. :guilty:

    Tomorrow is the 10th anniversary of my mother's death. My siblings and their families are all getting together in NJ, but we're not going. I just can't physically handle any kind of trip right now. I'll probably call and speak to all of them while they're having dinner together.

    I hope you're all doing ok. Please check in if you can, even just a quick "hello" post.

    Hugs to all. :grouphug:
     

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