Fibromyalgia Thread

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

  1. tiggspring

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

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    Well it seems like I can never get on my computer lately unless its to pay bills :(. Sorry its been so long since my last post my phone died giving me one less outlet to chat. Anyway new phone and completely insane schedule. Both my son and youngest daughter had birthdays in Oct. Then came the storm which we were so blessed to get 10 inches of rain but no loss of power YEA!. Did set me back two days to prep for a 10day outage that was forecast. I feel so bad for all those families near where I grew up.

    Basically I am all over the place. Had to go off diet due to kidney pain but am back on it and lost another 3 lbs. House is cleaner and more organized than ever and ready for my friend and her 4 yr old to stay while we go with dd8 to Disney: next week. However, I have stable days where whole chunks of day just feel like the bottom falls out in such a way it scares me. feels like I'm falling off a fibro cliff :(. I find a way to rest and it stops but I cant help feeling its an omen of a really bad episode like the one I had 4 yrs ago where I even had heart problems they cant explain. Mostly I ignore the symptoms til I cant .

    Well in less than two weeks I will be in wdw to watch dd dance in the parade. Would you believe they didn't have the steps ready for the little ones 8/9 til last week!!!! dd learning her steps well but omg this is quite the way to start her dance team experience at wdw and soooo little time to prepare. we are practicing every am for half hour or so and then again in afternoon. Cant say she isn't ambitious since this was what she asked to do Monday morning after her first real practice of her second routine. First routine is for the parade and they all do the same thing then they break off by age and do two specialized routines. I think the actual routine is supposed to be secret so I will keep my mouth shut for now ;)

    please send out so pixie dust for my dh. His Lyme is not improving and they will not give him more antibiotics even though they said if he was symptomatic they would. He has symptoms(pain/fatigue/irritable) and 3x normal titer yet they halted treatment (?????). Now we are like a really old married couple fighting over nap times and how much pain we are in LOL. I really worry if this trip will be too much for him making my fibro worse to boot. Tomorrow he sees another Dr. hopefully he can get on a real course of antibiotics long enough to kick this. I don't think it would take long ( maybe 6 weeks) but it has to be consistent not 10 days on 4 days off 14 days on 30 days off 14 days on....duh they made him antibiotic resistant by giving the bug a chance to grow in between doses. They say he cant have more because he SHOULD feel better but if he had a ear infection and the blood work said he had an infection and he still had symptoms they might switch meds but not stop them! But with Lyme everything says infection and they say nope not possible (HUH????) .

    Hope all of you are doing a bit better. It seems like this has been a rough year for many of us here. I feel blessed to have had a productive year I can be thankful for. I just wish I could chat more with you all and talk a. bit more to family and friends on the phone. I seem to have gone months without talking to many people at all. Just no energy. It all went to my kids this year which isn't bad just a bit isolating.

    Wish us luck with DR . hopefully I will post around Thanksgiving.

    Sending pain free vibes and pixie dust to all!
     
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  3. mommasita

    mommasita DIS VETERAN Moderator

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    Bonnie. Thinking of you and DH and the family.. Throughout it all, Dr, WDW..

    1) Happy to hear you didn't have much damage.

    2) I hope he saw the other Dr, and has something to help...That sounds incredible rough...

    3) Wishing you all a MAGICAL trip, and hoping the stepss are all ready, and you all can take it at your own pace....:goodvibes And lots of pictures

    4) I hope you can get a little R and R in before you go. IT is always stressful prior.

    Sorry for the numbers, it is just that kind of day:rotfl2:
     
  4. tiggspring

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

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    Happy Thanksgiving!
     
  5. 5 at disney

    5 at disney Mouseketeer

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    Hi all-I am new to the thread but not new to fibromyalgia. I was diagnosed about 5 yrs ago. However if has always been "mild". A lot of joint pain but treated with medication and felt great until recently. I have had major stomach issues . A lot of tests to be told IBS. I never really did a lot of research on fibromyalgia but started looking to see if this is fibromyalgia related. I am so overwhelmed right now cause it appears a lot of issues I have been having keep going back to fibromyalgia . So can you recommend good books and am books on FODMAP diet. I guess it is time for change. I have been up since 2AM due to IBS flare up. Guess I need to take my head out of sand and deal with this. Long post so sorry. Jenn
     
  6. 5 at disney

    5 at disney Mouseketeer

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    Duplicate post.
     
  7. scojos

    scojos <font color=peach>I want to be Tinkerbell and fly

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    hi jen
    my ibs is triggered by my food allergies, as im in the uk, i dont know how ur medical system works, but can you get tested over there? im allerfic to alot of foods, seafood, fish, onions and pineapple are my worst triggers...

    i too as diagnosed with fm recently (may) and am struggling to come to terms ith the effects it has on my day to day life, to top it off have had flu for a week and feel drained (tho one good side effect was that i got a weeks sleep... back to the insomnia again for me... hey what else do u do at 330am but dis?? lol!!

    my only advice is to keep a sense of humour, easily said but i have got to the stage i cant cry anymore, so now i have to smile (oh and keep a good book in the toilet for flare ups!!!;)
     
  8. tiggspring

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

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    Hi guys back from Dance the Magic trip with DD. I will catch you all up when I can get to my computer.

    Jenn WELCOME!

    I was never diagnosed with IBS but when I first got sick I had awful stomach pains. Was tested for allergies but had none. After two yrs of taking double the prescription dose of zantac I read something online about garlic tabs. I figured what's the harm? I began taking a garlic supplements morning and night. In a few months my pain was gone and it NEVER came back! This began my supplement route to treatment. If you look back I have posted on supplements many times. I still take a few meds but for me supplements work better than meds but it is by no means a cure just takes the edge off my crazy symptoms. You will find that each of us has our own unique path to relieving symptoms . For me meditation, relaxation techniques, pacing activities and supplements have taken me from bedridden for two years to functional enough to do the basics for my family with ALOT of support from my husband. Learning your bodys unique patterns is key. If you cant find old posts through that answer your questions. I'll be back in a day or two and the gang here is GREAT! We have been having a tough year though so sometimes it takes a day or two for people to get back.

    Pain free vibes and pixie dust to you all!
     
  9. 5 at disney

    5 at disney Mouseketeer

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    Thanks for the responses. Well, I was laid up all day on Sunday. I felt like I had a truck run over my stomach. I was able to get an appt with my rheumatoid doctor. GI doctor wants to increase meds and i am reluctant. I trust my fibromyalgia doctor, so glad I can talk with her tomorrow. I am going to do the elimination diet to find my IBS triggers.
    I look forward to hearing others stories. Jenn
     
  10. mommasita

    mommasita DIS VETERAN Moderator

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    Hi Jenn, it can be so overwhelming indeed. I don't have any help specifically with IBS. Can you ask for a specialist? Glad to hear you like your Dr, SO important. How was the appointment?

    Tigg. CAN"T WAIT TO HEAR ALL ABOUT IT :cool1::cool1:


    I saw my Dr today for some results. I had a little pity party, and am just accepting what is. My results for my memory tests are quite bad. It is permanent damage, and they suggest counseling to learn how to adapt and deal with this. Many other tests were poor, but I guess the sound of anything permanent, and they don't know if it will continue sucks to me, at least today it did. I see my Neuro on Thursday, and will try to remember what I forgot to ask today, as well as ask for a copy. My Dr said he was happy? to read the report, and that it does have some play with my insurance, that 90% of reports state depression causing this, but mine is completely void of that, and he states that it is good proof for me. I think I am exhausted and rambling.



    I start physio and Ergo therapy 3x a week this week. Hoping for the best, and have a positive outlook. I was supposed to start last week, but it was a bad week pain wise.

    Thinking of everyone...Gentle hugs to all
     
  11. 5 at disney

    5 at disney Mouseketeer

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    Went to rheumatoid doctor on Tuesday morning. She feels that my stomach issues may be related to the Relefan. I am trailing going off of it. We will see. If I cannot make it without it then my prilosec will get increased to combat the side effects of Relefen. We will see. I really really like and trust her. I always try and go with the least invasive methods first. She saw my mouth was very dry and I did not tell her. She is just gresy, just very intuitive. Anyway, I am hopeful again that I will get this bad spell pushed to the curb. Thanks for all the support. Jenn
     
  12. tiggspring

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

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    Well Jenn my Fibro brain did it again:sad1:
    I posted to your responce within minutes of you posting...however I did it through my phone upon reading an email transfer from Dis. I responding via email which I know doesnt work but....anyway here is a copy of my responce 5 days late

    Jenn

    Thats great! A place to start. Sounds like your rumey is a keeper. Always better to take the less is more approach since more usually has a price to pay. You might want to look into things to support your stomach/urinary track health to decrease pain. Probiotics, cranberry juice and the garlic I mentioned before might be places to start. Sassy water is great for water retention and bloating..tastes good too! I posted recipe quite awhile back.

    I haven't had a dr I can partner with like that in a very long time. Mine has been fine to keep me stable, allowing me to keep the meds that work for me. Unfortunately during my last visit my Dr. seemed to show he wasn't really looking for a solution just falling back on depression/anxiety which luckily for me I have never had. So I need to have a frank discussion this month and possibly look for another Dr. I can't be helped right now but I definitely think there is/will be something and I don't want to miss an opportunity to get better because I have a Dr that has given up. It has been 18yrs and I haven't given up yet!

    good luck coming off the meds. I had a hell of a time back when I took meds on a schedule. took almost a yr to fully come off ativan my body got so dependant on it that the pain was AWFUL. Luckily i knew that was a sign I needed to get off not go back on. Two yrs later I used it again briefly found it worked great and so now all my meds are "rescue" meds. I never take them more than a week or so in a row on a consistent schedule (like on vacation) the rest of the time I use them only when I just cant stand the pain anymore and relaxation/meditation techniques, showers, bengay etc just cant keep me moving anymore. Not a great way to live but better than being an addict. Dh has been taking celebrex for his lyme disease and it has helped alot. Anyone here take it? I took its cousin vioxx and it made me mean...like raging at a toddler mean so I got off asap. Considering asking for sample of celebrex since its $100 month copay. I don't want to pay and find out in a week it makes me crazy angry. It would be nice to have something I could take everyday. My experience has been nothing works on same dose more than a month or two then I need to go up and risk addiction or come off and take as rescue med...and so it goes :)

    Jenn let us know if the lower meds work for you.

    Sending pain free vibes and pixie dust to all!
     
  13. Earstou

    Earstou <font color=336699>The Tag Fairy sends you pixie d

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    I used to take Celebrex until the insurance copay got so high. Hoping when kids are out of college I can afford it again!
    I really liked it. I have side effects from so many meds and I didn't with Celebrex. I was happy on it, as it relieved some of my pain and put me in a better mood.
     
  14. tiggspring

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

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  15. tiggspring

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

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  16. tiggspring

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

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    MERRY CHRISTMAS!

    Wishing pain free days and boundless energy for Christmas and the year to come!:santa:
     
  17. RNMOM

    RNMOM BLEEDING HEART LIBERAL

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    Hi all! Happy New Year to each and everyone of you. I keep forgetting to visit. I haven't been DISing much lately.

    I had my monthly blood work done Fri. and my Rheumatologist called me from her home on Sat. am. My white count has been below normal for several months and went down to 3.0 now. I also have elevated liver enzymes. I am on Methotrexate for 6.5 years and can't take any of the biologicals due to my borderline liver function. What am I going to take if I have to go off the MTX?? I am also on Effexor and Plaquenil. I can't imagine going without anything for my psoriatic arthritis.
    Have to go, my router is closing me down for an update!
     
  18. mommasita

    mommasita DIS VETERAN Moderator

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    Happy Holidays to everyone...

    I wish for the most pain free possible for each and every one of yo.

    :hug: to all
     
  19. tiggspring

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

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    So sorry to hear of your need to change meds.. Always scary to have something work then need to stop and not know what to do next. What have you tried? Have you tried anything non conventional? I hear acupuncture works great for lots of our weird symptoms but I have never been able to afford uncovered treatments :( . Not sure what supplements my help with psoriatic arthritis. Hang in there you will find something in time. Gotta keep that liver healthy!

    My New years resolution is to get back on Dis Mondays and Fridays and see if we can get this Fibro board buzzing. It was such a help to me and I would like to be more available to our newer members and keep in better contact with old friends. My life has been crazy and I find I use my phone more than my computer these days. unfortunately its harder for me to think long thoughts on little screen than big one.. if you know what I mean. Its crazy how little things impact our ability to do daily tasks isn't it? My brain works better on the computer...makes no sense but there it is. Anyhoo if my kids will stop staying home sick (son in hospital today for test-possible lyme) I might get something done. DD did fantastic at wdw and we got to see her on tv! just a quick look but it was fantastic. Lots to tell when I get back on my computer.

    Pain free vibes and pixie dust to all!
     
  20. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi everyone :wave2:

    I apologise for not posting sooner. I have been reading the DIS a little here and there, but not posting much.

    I started my new job on the Monday after Thanksgiving, and I am totally exhausted every single day (and night!).

    I work 6pm - midnight, and don't get to sleep until around 1:30am. Then I get up at around 6:30am with DH to see him a little before he leaves for work, then we chat on the cell phones while he's driving in to work. Then I usually fall back to sleep, and sleep most of the day away. :(

    I start getting ready and dressed for work at 5pm, I leave around 5:30pm, and before that, I have to try and make something to leave for dinner for DH and DSs.

    Fortunately they aren't picky, so I just make/leave easy things for them to eat. Once in a while I actually cook a meal. LOL

    Anyway, the exhaustion is from the fibromyalgia. It really stinks to be so exhausted all of the time. Fortunately I'm ok during the 6 hours of work in the evening, since that's generally always been my best part of the day.

    The job is ok; I'm working for a company taking orders for products from people calling in. It's mainly a company selling wigs, and women's apparel. I like the job itself, even the occasional grumpy customer. LOL The job is physically comfortable, which as I'm sure all of you can relate to, is important. And it's only a 10-minute drive which is great. :)

    These days most of my pain is coming from dental work that I need to follow up on. I really need to schedule appointments for the dentist and then KEEP the appointments. In the last couple of months I've ended up cancelling due to exhaustion on the day of the appt. :/

    :welcome: to all of the new posters. This really is a wonderful thread, and I do want to contribute on a more regular basis. Just having people who understand what you're going through is such a great thing.

    *hugs* to all of you. :grouphug: And pixiedust of course. pixiedust:
     
  21. 5 at disney

    5 at disney Mouseketeer

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    Happy New Year!!
    Just thought I would check in. Does anyone here eliminate certain foods from their diets? Do you find relief? I am trying to live a healthy life style and have started removing foods.

    Also, just wondering if some people notice that you fibro is worse during that time of month? I am having a high fibro day. This morning even touching my scalp hurt.

    Thanks all!
     

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