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

    Joined:
    Apr 18, 2006
    Messages:
    1,910
    North of Mouse forgot to say:welcome:

    I think this is the first time you have posted here.

    If you look back I think you will find all the posters here are fantiasitc:thumbsup2. I never joined a FMS board before because they seemed to be a cosntant pitty party. I think the pixie dust makes all the defference ;)Here I hope you will find us very positive and supportive. There are alot of posts re new treatments, possible causes like XMRV and the thyroid post above. Most of us use this a a sounding board so we can get better treatment and get the frustration out of our system here so we can stay positive and focused at home/work. Everyone needs a place to vent and here everyone GETS IT;)

    Well the weather just changed and my head has cleared:cool1: Off to get laundry done:yay:
     
  2. Avatar

    Google AdSense Guest Advertisement


    to hide this advert.
  3. mommasita

    mommasita DIS VETERAN Moderator

    Joined:
    Aug 3, 2004
    Messages:
    19,225
    Thats for that Tigg. It does make sense, but I will read fully once the fog clears. It is that type of day. I need some huge glasses..LOL.

    Going to the movies tonigiht, my gf has a free pass for some new one which I forget the name..LOL...Haven't been doing a thing with a soul for months, so hope My head stays as small as it is now, and at least I get out of the house for some type of social activity.:thumbsup2

    Glad yours has cleared, and hope you have a great day.:goodvibes

    North of Mouse. I understand what you are saying. I have never once given in, even on the advise of my surgeon's and phys. We are a resilient bunch as Tigg stated. I had to wait this long for an attempt at physio, and my dr wished me luck, admiring my courage. ... I am about 2 months in, and will wait another month giving it a go, and then I think I am really throwing that flag in, and trying something else. Glad to hear about you though. I love positive stories.:) I also have Sjrogen's, and it really wipes out your immune system daily.

    Massages are a no no for me with my brain surgeries, and spine surgery. My Chiari is back in full swing, and there is such a list of DON'Ts, I need to find the DO List.. They don't know enough about this yet, and I hope and pray that will change in the future.

    Have a great day everyone. SNOW this weekend. :scared:
     
  4. North of Mouse

    North of Mouse DIS Veteran

    Joined:
    Mar 31, 2011
    Messages:
    6,786
    Thanks! :) I guess I have been fortunate as my headaches are occasional, and not migraines. Sorry that you have them so often. I do have flares when I have to drag myself from place to place :(

    I don't always *win the battle* to make myself do some form of exercise, but the days I can it is worth my while. All therapists are not understanding, and know how to handle fibro patients, but the one I used is gentle and very aware of *dos & don'ts*. She also stresses drinking lots of water after her sessions, also when I exercise - said toxins are released and need to be flushed from the body.

    It took 10 years for dr.s to finally diagnose me. I really thought I was nuts, or a hypochondriac (think they did too). This was 19 years ago, and of course it's part of me, but at least I (and they) know it's not all in my head anymore. :headache:

    The best to you, and mommasita also :thumbsup2
     
  5. SeaSpray

    SeaSpray Disney World fan since 1976

    Joined:
    Jan 11, 2001
    Messages:
    14,615
    hi everyone:

    first off, please excuse any typos because im typing with splints on both hands. saw my rheumatologist this morning and he reminded me that he had diagnosed me with cdarpal tunnel a cpuple of years ago but i never went and got the braces/splints/. so this tim,e he fitted me with them right there in his office. he said towear them at bedtime and any other time tht my hands finders wrists and arms hurt. and they def. hurt when i'm on the ;laptop. so far so good, except for the ty[ping. lol

    so regarding the RA/lupus: he put me on something called plaquenil to treat the pain and inflamation from RA/lupus. he said it should also help my pklantar fasciitis tpp. however, plaquenil takes 2-3 mionths before you feel any benefits so he also put me on prednisone to take for 3 months, then taper off. i'm feeling guardedly optimistic.

    also, i'm taking some time off from work to see if this can get all sorted out so that i can stop taking days off here and there. not sure how long i'llbe out for, maybe a few days or a week or two.

    have any of you taken plaquenil or prednisone? did it help?

    :tinker: hug and pixie dust to all. :grouphug:
     
  6. mommasita

    mommasita DIS VETERAN Moderator

    Joined:
    Aug 3, 2004
    Messages:
    19,225

    Thank you! I certainly hear you on that. It is just sometimes what we need, to put a name to something. To know there is a cause, and we are not not hypo's... One Dr told me I was just lazy, and needed to lose weight, and wasting the Gov money on MRI's. A week later my brain malformation was found:headache:. I wasn't happy, but relieved to know it was not made up... I am at my smallest in years, and still have all the FIBRO, if not worse, so for me it honestly had nothing to do with size. Happy to hear your headaches are occasional. Good thoughts to you.:goodvibes
    Ugh. Poor thing.. I was diagnosed with that, and also did nothing. Hope it helps you my dear.:hug:

    Maybe time is what you need (off work I mean). That way you can not stress in regards to that. Just worry about you, and not the job.

    I don't believe I have ever tried either of those. Hopefully someone else has some input..
    :grouphug:
     
  7. tiggspring

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

    Joined:
    Apr 18, 2006
    Messages:
    1,910
    Seaspray

    So glad you can take a break a try to get your bearings. I have never been on these drugs buy my mil was on pregnisone and it caused alot of water retention. Make sure you drink alot of fluids and watch your salt intake. Sassy water posted here awhile back can help with fluid, lemon water, lime water can all keep retention down.

    Well i'm feeling better today! :) Think I have a new crazy symptom. Had dental appointment for a cavity today...cavity was nowhere to be found. Apparently the pain/cold i was feeling in my tooth every time i take a breath is a nerve sensitivity in my tooth...Great now I have fake out tooth aches ;)


    Hope you all are having a good day!
     
  8. mommasita

    mommasita DIS VETERAN Moderator

    Joined:
    Aug 3, 2004
    Messages:
    19,225
    Tooth aches are just hard to deal. Happy you have no cavity, but totally get you on that other point.;)

    Rough appointment yesterday due to the fact that I forgot what floor the Neuro was on THREE TIMES. I went down they told me, I tried again, and so on. They found me roaming around looking like an in patient.:guilty:.. Time for some medical alert bracelets. Or a sticky saying, " HI, I AM MOMMA, IF FOUND PLEASE RETURN". . Just kidding today about it, yesterday I wasn't.

    Hope you are all doing ok, and fairing as well as you can in the storm. Snowing here, but seems we are getting off easy for once..

    :grouphug:
     
  9. tiggspring

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

    Joined:
    Apr 18, 2006
    Messages:
    1,910
    Well my toothache had babies lol now I have a couple teeth that are sensitive. Kinda blah day mostly because we have been dealing with irs for our private business. That would make anyone feel sick!

    We are just getting a dusting of ice.. no snowmageddon here! YEA!!!!!! To my NE friends stock up on those pain meds and get the shovels ready! Looks like blizzard of 1978 all over again ..that year the backside of house across from us had snow over the roof!! We were snowed in for a week.

    Painfree vibes and Pixie dust to all!
     
  10. tiggspring

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

    Joined:
    Apr 18, 2006
    Messages:
    1,910
    Well my tooth ache has had babies! LOL. Now three teeth feel that zing. Meanwhile a tooth on other side with a real cavity feels fine ;). At least here in Western PA we are just getting a smattering of ice.

    For my fibro friends in NE stock up on the pain killers and man the shovels! Snowmagedden is comming! Looks like one like we had up there in 1978. That year the house across from us had snow over the roof! Snowed in for more than a week.

    Stay warm and pain free.

    Pixie dust coming your way from pa and (((HUGS))) too
     
  11. tiggspring

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

    Joined:
    Apr 18, 2006
    Messages:
    1,910
    Sorry for dbl post. First time i posted said it dbl posted and nothing was here:confused3 .this time it just wouldn't run through and here are two posts:confused3

    My phone and the Dis dont like each other today :(
     
  12. SeaSpray

    SeaSpray Disney World fan since 1976

    Joined:
    Jan 11, 2001
    Messages:
    14,615
    Hello from the blizzard in Massachusetts :cold:

    We're in the area that is forecasted to get up to 30" of snow :faint:

    Lights are flickering and I hope that we don't lose power.

    I hope everyone is doing ok. :grouphug:



    Sorry to hear about your confusion yesterday :hug: Thats scary when it happens.

    Ugh, I hate tooth pain, and I can relate to the tooth sensativity. :(

    I am all stocked up here with my meds. lol
     
  13. mommasita

    mommasita DIS VETERAN Moderator

    Joined:
    Aug 3, 2004
    Messages:
    19,225
    Bunker down, and pray like crazy for no loss of power.

    We got some major snow, not as much as December, that seems to be what you all are getting. :grouphug: but I think we don't react the same. Stay safe friends..XO check in when you can..
     
  14. tiggspring

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

    Joined:
    Apr 18, 2006
    Messages:
    1,910
    Its not so much the snow its the type of snow (very wet/icy) and the hurricain force winds that are the problem. Add to that New Englanders think they can live through and should work through anything and you have recipient for disaster:headache:. We got just as much snow here two years ago but its light enough to take a broom to. Snow blowers have a tough time on the coast then you throw whole ocean tide thing and you have a mess. New England +Nova scocia really have very unique weather. Makes me Love W.Pa snow pretty and easy to handle. All my frends and family live in the major snow belt and all kept their power. Those right on shore got less snow but now no power

    I'm up/down today.

    Hope all is well with you all.

    Pain free vibes and pixie dust from PA!
     
  15. tiggspring

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

    Joined:
    Apr 18, 2006
    Messages:
    1,910
    Seaspray

    I just realized your home town is the Jersey shore. So sorry for what happened down there!!! We may leave but a little piece of are hearts always stays behind doesn't it? Hope your family and friends down there did ok.,
     
  16. tiggspring

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

    Joined:
    Apr 18, 2006
    Messages:
    1,910
    Well its Monday again. I think i'm feeling better. Trying to decide whether to enjoy my quiet time without the kids on one of only two days kids don't have activities or get up and get things done. Cant quite figure out if that will trigger a increase in symptoms...mmmmm

    How are you all today?
     
  17. mommasita

    mommasita DIS VETERAN Moderator

    Joined:
    Aug 3, 2004
    Messages:
    19,225
    Hi there.

    Spent a good part of the night up with a vomiting 13 year old. No matter the age, they want their Mom's.:cool2: She is better now, and I went to get groceries in this crapstastic weather. Ick. Snow, rain, ice, sleet. .. I am a little tired.:rolleyes:

    My step-father just called that my mother fell again, and is gone by ambulance. I am waiting to see. I am not wanting to go with the germs I am probably carrying you know? The usual is her wanting more morphine, so I will ride this out for now, and see if it is the same situation.

    I am doing ok except for one arm. It is about 2 days now I can't lift it at all. VERY sore. Hoping it gets better. Tomorrow I am off to the gyno for a talk about what to do about this nonsense. That is early (for me) 8:15. We did a check up in November, so this is a discussion on surgery. Then I have pysio Wednesday.:crazy2:.. Then nothing WOOHOO!

    I hope your head remained calm, and a wishing everyone a nice day.:goodvibes
     
  18. tiggspring

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

    Joined:
    Apr 18, 2006
    Messages:
    1,910

    Sorry your family is in such chaos right now. Not easy to get hit from multiple sides and deal with Fibro but somehow we do it.

    On a cooking note I tried something in my crockpot that worked really well. I had bottle of drk beer and apple butter in house. Took roast, cup of apple butter, 1 bottle drk beer and 1 chopped onion and threw in some baby carrots for good measure it came out great! Onion added nice flavor to beer/applebutter. If you have some frozen onion you have a meal together in about two minutes. Then 5hr to cook. Yum.
     
  19. RNMOM

    RNMOM BLEEDING HEART LIBERAL

    Joined:
    Sep 29, 1999
    Messages:
    4,208
    I was hoping all of you NEasters survived the snow okay. We in NE Ohio get one of those kinds of storms every decade or so. I kinda like having a heavy snow episode. We used to live in "the snow belt" which is infamous in Ohio. They get 3-4 times as much snow there as the rest of the area and there are still people who live there willingly!

    I know from experience to keep pretty well stocked up in the kitchen and bathroom areas in the winter as well as meds. There isn't much you can do but live with it so have fun. Bake cookies while you have power and make sure you have all your things charged up.

    I have been feeling better with my autoimmune and fibro stuff. My white count came back up with the lowering dose of methotrexate. The only increase in pain is my hands and toes. Unfortunately my face is a mess. I have very sensitive skin and the psoriasis has been getting on my face too. I think I need to see if my dermatologist will try some low dose steroids for a while. I tried her way with the tetracycline pills and creams. I was a bright red mess and it itched and burned. It is getting about half that bad now. I can't find a moisturizer that doesn't make it worse and my skin is actually flaking off. I have even tried olive oil and vaseline.
    I use Cetaphil to clean my skin. I have come to the conclusion that I am allergic to the base they put medicines in, the cream. I seem okay with the ointments but lotions and creams make me react. What a mess. I am tired of looking at it.
     
  20. mommasita

    mommasita DIS VETERAN Moderator

    Joined:
    Aug 3, 2004
    Messages:
    19,225
    TY Tigg. OH MY, that sounds SOOOO tasty!:thumbsup2 I am a lousy cook, and need to buy a crockpot for sure. I hope to remember where to find the recipe, or even to ask you.

    RNHOM. I have terrible hands and feet. I feel you there. Glad your white is back up, that certainly makes us feel weak and just plain horrible. My skin is sensitive as well. I can only use very few things, a dermo is a great idea for you.


    So what a freakinnnng day. I never gave in and went to the hospital for my Mother, and was certainly glad. Last night my back starting aching, and we had 3 hours of freezing rain. FFwd to this morning, and I was not able to move. DH actually left work early and we went to the ER. I have kidney stones, and they didn't waste any time with me. CT scans, etc. They actually tested me in the Triage by saying it was 5 hr wait. Well I crumpled and said NO WAY, thanks but I am going home. They said ok, we see, come in the back. So hours later I am on some pain meds, and hoping these suckers pass. I have had 2 children, brain surgeries, spinal surgery, and quite honestly the pain today was SO much worse.
    Mother is home and happy with some morphine :rolleyes:. Nothing broken, nothing wrong.

    Well wishing you all the best. :hug:Excuse anything weird. :hippie: The pills
     
  21. tiggspring

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

    Joined:
    Apr 18, 2006
    Messages:
    1,910
    I wish I had a good answer for you on the skin irritations. :grouphug:If it was breakouts I would recommend the Tanda Zap . It clears up my blemishes in hrs instead of a week or more.My daughters dance team uses mary kay cosmetics because they haven't had one girl react to it. Have you tired them? I seem to remember they have a moisturizer. Maybe you could get a rep to give you a sample.

    I dont know about you but the hardest thing for me to deal with emotionally is how this disease makes me look. I'm tough I can deal with a long migraine run and while I might have a day when I lose it, I'm not discouraged. But the weight (from 8 to 20) the major change in the size of my breasts (36b to 44dd. Larger at times:(...). These things change how people look at me. They make judgements that are not true and I find that very discouraging. I know beacuse when I lost weight right after the birth of my son I noticed significant difference in how people made eye contact when they talked to me in stores etc proving what I had felt for yrs but had chalked up to me being sensitive.

    I totally get your sensitivity re: Creams. I actually have significant breathing problems with foot lotions that contain Lidocaine yet no problem with Lidocaine injected for my 3 epidurals. I'm not allergic with them separate but together wow!

    Hang in there! Hope your face clears up soon.
     

Share This Page