Fibromyalgia Thread

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

  1. SeaSpray

    SeaSpray Disney World fan since 1976

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    Thanks so much for all of that info. I firmly believe that my fibromyagia, RA, and IBS are all related. When I feel bloated and nauseous, those are the days when my joints and muscles hurt the most and I feel the most fatigued. It seems like a huge task to try and find out the offending foods, but I really am going to put in more effort.

    :grouphug: Hugs and pixie dust to all. pixiedust:

    Edited to add: A few weeks ago I started to take probiotic capsules, in the hopes of improving my stomach/intestine issues. I thought they were working fairly well until the last couple of days.
     
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  3. rosanab1031

    rosanab1031 Mouseketeer

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    Thanks for the great info! A few years ago I completely cut out soda and have felt much better. About six months ago I cut out most fast food and definitely saw a difference with that. I most recently cut out potatoes because things like potato chips and French fries are very addictive to me and I will definitely over eat :/

    I feel that something others need to look out for are artificial sweeteners! I have been speaking against these for years to my family members who swear by them and recently one of the top brands has been proven to cause cancer in rats!

    As far as checking in: I volunteer each year for Camp Ronald McDonald and just came back from camp today after 8 days! It is such a beautiful place and everyone is so understanding there. I worked my butt off but had an amazing week! In a bit of pain now and extremely exhausted but its totally worth it. Now to recharge! Gentle hugs to everyone and much love!
     
  4. tiggspring

    tiggspring DIS Veteran: When I stop talking you'll know I'm d

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    sorry I have been mia. somehow my phone unsubscribed me! Now its taken me 45 minutes just to get to last page . Dis and my phone really dont like each other. My dd8 goes to dance nationals today so i may be mia a bit more.
    Carie so sorry it been so hard :( sending pixie dust your way.

    well phone really acting up. just know you guys are always in my thoughts
    painfree vibes and pixie dust to all!;)
     
  5. carrie6466

    carrie6466 DIS Veteran

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    Thanks for all the support. I had a biopsy done and an ultrasound. they wouldn't give me the us results, but I know they are looking at two 'things' because I could see them. One is a cyst on the ovary and the other is a polyp in the uterus. Two weeks for the biopsy to come back, then I'll know for sure.

    I quoted the above, because I totally agree. I feel terrible some days, have the worst stomach aches and that causes everything to ache and it seems like it takes forever to g
    feel better!
     
  6. rosanab1031

    rosanab1031 Mouseketeer

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    Hope everything turns out for the best! :) :grouphug: :cheer2:
     
  7. rosanab1031

    rosanab1031 Mouseketeer

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    So even with the fibromyalgia it has always been a dream of mine to participate in the Amazing Race! I know it will be hard for me to do but I have the determination and drive to do it. My sister and I have always talked about doing it together but now that she has gotten back together with her ex she ONLY wants to do it with him :/ She keeps telling me I "can't" do it and it really bums me out that people automatically count me out. I know the fibro will make it hard, but I know I would be able to handle it as long as I get to take all my meds with me. Haha. I'm just bummed that she's being a brat about it. Also, she now wants to postpone OUR trip to WDW and use MY DVC points to go on a cruise with her bf :furious: So yeah... sorry if that is a little off topic. Much love and gentle hugs to all! :love:
     
  8. SeaSpray

    SeaSpray Disney World fan since 1976

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    How great that you volunteer at Ronald McDonald Camp each year! I'm sure that the kids and families truly appreciate all that you do there. :) I hope that you've been able to get some rest and are feeling a bit better now. :)

    Hi tigg, I'm glad that you checked in! I hope that your DD has a good time at the dance competition. :dance3: Sorry about your phone troubles, that can be annoying. :headache:

    Hi carrie, have you gotten the official results yet? I hope that whatever it is, its nothing serious. :hug:

    I'm sorry that you sister doesn't feel that you could compete in AR. :( I think it's extremely difficult for anyone, let alone someone with fibromyalgia and all that that brings with it. But nobody should tell someone that they "can't" do it. I'd be upset too about her wanting to go to WDW with her BF instead of with you, especially since it's YOUR DVC! If you need someone to go to WDW just let me know. :rolleyes1 :cool2:



    :tinker: Pixie dust and hugs to everyone. :grouphug:
     
  9. brighteyes

    brighteyes DIS Veteran

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    Carrie, I hope the biopsy come back and everything is ok for you. :hug:

    Tigg, Glad to see you and I hope your daughter does well at the dance competition, and nice to see you.

    Rosanab, I agree with you about sweeteners and potatoes. I think my almost daily consumption of potatoes is in part - part of my problem with all these issues. Potatoes are extremely bad for autoimmune conditions. I am also eliminating nightshades which I tend to eat a lot of too. :( Chocolate and coffee are almost out too now.

    I am sorry to hear about your troubles with the AR. I think that is awesome that you are motivated to even want to do it.

    Kudos to you for volunteering at such an important place.
     
  10. rosanab1031

    rosanab1031 Mouseketeer

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    HAHAHA! Thanks SeaSpray!

    Camp Ronald McDonald has become a very important part of my life and I go there for the kids as much as I go for myself. Haha. Camp just always makes me feel so much better! Granted I was VERY exhausted after words. Haha. Funny how that works that way :rotfl: I think it was because it was really cold this time around :confused:

    My sister actually wants to do a cruise instead of our WDW trip so that she can bring her bf with her and wants me to bring my bf. I do want to do a cruise, but I want to do our WDW trip too. I am at a loss. But yeah it is my DVC and I will do what I want! Lol!

    We should totally have a "Fibro Support" weekend! Or week! Haha! It would be great!

    Wishing a painfree day to everyone! :love:
     
  11. katrina1122

    katrina1122 My Tag Fairy Tag went bye-bye :(

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    Day 4 of a mild migraine. Woohoo.

    So I'm wondering, does anyone else have lots of popping and cracking in your back and neck? I know it can be arthritis related too, but my xrays don't show it too bad, but the cracking has been getting worse and even painful sometimes now...which of course just sets off the fibro pain.
     
  12. tiggspring

    tiggspring DIS Veteran: When I stop talking you'll know I'm d

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    Could it be the way you have been sleeping? A while back I was having terrible jaw pain. After taking flexeril for my back my jaw pain disappeared and I notice the way I was positioning my head at night was putting pressure on my jaw. Seems like when we make ourselves comfortable for one ache or pain we sometimes create another problem. I get a lot of popping/cracking in my ankles and I do not have any arthritis so it might be that.
     
  13. SeaSpray

    SeaSpray Disney World fan since 1976

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    This sounds good to me!! :sunny:

    I hope that your migraine has subsided by now. :hug: They changed the location of my desk at work yesterday morning and by noon I had the worst headache because of the overhead lighting causing me to squint because it felt like the sun was in my eyes. :headache: It never went away and I woke up this morning with the headache too. I took some ibuprophen and went back to sleep for another hour and fortunately it has settled down to a dull ache now. I may have to request that they move me to another location because there's no way that I can work like that every day. :sad2:

    I have a lot of cracking and popping all over; mainly my neck and shoulders. I blame it on my rheumatoid arthritis but it could also be pain from fibromyalgia. Most of the time I can't tell what causes which pains.

    This has been my experience, too! You should see the way that I have to set myself up each night. Let's just say that it includes 3 pillows, 2 wrist braces, and a large plush Mickey Mouse under my left arm. :lmao: DH comments "how cute, sleeping with your Mickey Mouse". :laughing:
     
  14. mommasita

    mommasita DIS VETERAN Moderator

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    :yay::yay: HI all. I also have been MIA.. My boy's Grad went well, it just took up time, and many spoons :)...

    Thinking of everyone, although not always around..

    Just booked a vacation (which we all need).. Leaving 6-14th for St. Lucia..

    Just hoping I can sit comfortably somewhere.. I started pysio for my rotator tears, and it was amazing, not after though :scared1:... I go once more this week before I leave..

    Giant gentle hugs :hug::hug:
     
  15. SeaSpray

    SeaSpray Disney World fan since 1976

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    Yay! I'm so glad that your son's graduation went well!!!! Congrats to the Grad and his mom. :hug:

    I hope you have a wonderful time in St. Lucia :sunny: I hope that you can relax and enjoy your vacation to the fullest; you sure deserve it. :beach:
     
  16. mommasita

    mommasita DIS VETERAN Moderator

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    Thank you!!
    I hope you are having less pain, along with everyone else..
     
  17. carrie6466

    carrie6466 DIS Veteran

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    Hi all.

    For a quick update, the biopsy results didn't come back, because they didn't get a big enough sample for the biopsy. So I get to do it again. Next time they are going to knock me out, do a d & c and get the sample that way. I'm being knocked out because I'm having another surgical procedure done the same day, by a different doctor. They coordinated it so I'd only be under anesthesia once. The other one is the plastic surgeon, who is going to clean up my non-healing mess and stitch it closed. It's an area that never healed properly after my surgery in March due to infection and other issues.

    They are going to do all of it on 7/22. 28 or so days before my trip ::sigh::

    I should be going home the same day, barring any complications. I should also have all my results back in a week or so following the surgery. I can't stand this anymore.

    I hope your are all doing well. I haven't really been keeping up here, this is the first time I've been on the computer in days!
     
  18. tiggspring

    tiggspring DIS Veteran: When I stop talking you'll know I'm d

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    Happy 4th of july!!!


    Hang in there Carrie (((HUGS)))
     
  19. mommasita

    mommasita DIS VETERAN Moderator

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    :hug: Poor thing. Maybe being out will be easier on you.. Keeping you in my thoiughts and prayers
     
  20. disneydork3

    disneydork3 Obsessed with Disney

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    Hi everyone. I'm 36 and was diagnosed in Feb after months of unexplained pain in my joints, nerves and muscles. I didn't even want to move because i hurt so bad. I tracked my symptoms for 6 months and noticed they would start a few days before my cycle, last for about 2 1/2 weeks and slowly fade allowing relief for about a week or so only to start all over. All blood tests and X-rays came back ok but my rheumatologist's touch test confirmed the diagnosis. I'm not the norm but my obgyn said most cases are chronic but some are also hormonal. He advised me to eliminate gluten from my diet. I did extensive research and found it helped a lot of people. Pain meds were my last resort so I went gf march 1st which has helped tremendously. I still have flare ups, sometimes deep tissue pain, sometimes joint pain, sometimes my whole body hurts. But I can honestly say eliminating gluten has helped me personally. Good to know I'm not alone on this wild ride.
     
  21. SeaSpray

    SeaSpray Disney World fan since 1976

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    I'm sorry that you have to have the biopsy done again. :( I hope it goes better this time, and that you get great results before your trip. :)

    :welcome: This is a great group of friendly people here. Sometimes we post a lot, and sometimes we don't. It comes with the territory;sometimes its hard just to try and put our thoughts in to words.

    I'm glad that going gluten-free has helped you! :) I've been trying to cut down on wheat/gluten products, too. I have rheumatoid arthritis in addition to fibromyalgia, so anything that reduces inflammation helps.

    I saw my doctor today. After being on Adderall XR for the past 30 days he increased the dosage. So tomorrow I'll see whether I feel a difference or not. I told him that I definitely have noticed a difference in my concentration this past month, and I feel a little less fatigued during the day.

    I hope everyone is doing well. :grouphug:
     

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