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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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    So sorry you are having rough time, Physio a complete waste of energy in a flare. Wish more Drs would get that. Exercise when good daily activities AS exercise when in flair. Well walked around town in sun glasses last night LOL. Yep I'm so cool gotta wear shades at night. Feel hung over and have sore throat but no major headache just low hum. Hopefully yesterday was the end! This cold is a killer here too 20below w chill here 47 below well thats crazy.

    If you can get disability take it we all wait too long to make that step IMHO.

    Thanks for pixie dust! Will let you know what we find out.
     
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  3. carrie6466

    carrie6466 DIS Veteran

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    Thank you so much

    Sorry about the migraines, that is not fun at all. Hopefully they will find something that works for you.

    I never understood how they can say how wonderful PT is when you don't have the energy for anything. And the cold, for me anyway, just makes it all worse. My back and shoulders have felt broken for the past few days. The doctor put me on a muscle relaxer temporarily hoping that will help.
     
  4. SeaSpray

    SeaSpray Disney World fan since 1976

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    Hi everyone :wave2:

    I've been reading a bit these last couple of weeks but the thought of typing everything that I *want* to type, to properly respond to everyone, is exhausting before I even begin. But, I'm going to give it a shot because all of you are worth the effort. :)

    For me, in a nutshell, the last few months, and the last few weeks especially, have been the worst that I've ever felt in my entire life. I have an appt with the rheumatologist in a week and a half. I barely do anything these days. I had been using all of my daily energy for work, but last night I called in sick, and tonight is my day off. I actually went food shopping today and that was a huge accomplishment. lol

    *hugs* and pixie dust to everyone. I've been thinking of all of you, and I apologise if I miss replying to anyone specifically. :grouphug:




    Hi Ashley, and :welcome:

    My doctor thinks I may have lupus. I'll find out more when I see my rheumatologist on Feb 5th.

    I take carisprodol (sp??) each night at bedtime. It's a muscle relaxer. I take it mainly to help with my teeth clenching during sleep which was causing me extreme pain, and caused several of my teeth to crack.

    I've been sleeping almost continuously lately, with a couple of hours awake here and there. When I do fall asleep, the pain wakes me up and I have to move and change position, and try to fall back to sleep.

    I've had a lot of confusion issues lately, too. It's a bizarre feeling to be at work, talking to a customer over the phone, and while I'm talking to them I'm simultaneously thinking that I have no idea what I'm saying. LOL I guess the fact that the customers respond in a normal manner lets me know that my brain goes on auto-pilot or something. lol

    There must be! I'm 51 and within the past year have started to miss periods for a couple of months, and at the same time my symptoms have worsened.

    I agree with you regarding diet. I'm glad you felt better while you were away. :)

    Our hormones seem to effect us in so many ways, and this menopause garbage is worse than puberty! lol

    I had irregular periods before I had my DSs. I wasn't ovulating. I went through infertiliy treatments for a few years before I had my sons. After my younger DS was born (almost 22 years ago), my periods became more and more regular and I got to the point where they were exactly a month apart. Until last March, that is! I missed my period for the first time in 2 decades, and actually went out and bought a pregnancy test! :lmao: After 3 months I got it again, and had it monthly until December, and I haven't had it since. :confused3

    Sorry to hear this. I hope that you can get some relief after the surgery.

    Amen! Why do they think that when we have NO energy, that getting up and doing things will help? Do they think that we haven't already tried that?! I know I have! When we'e in a flare, doing anything more than necessary makes it worse. They really don't understand this. :(

    Tigg I'm so sorry about all those days of migraine. :( I hope it doesn't come back. I'm starting to wonder how much longer I can go on like this, regarding work.

    The cold weather feels like "death". It makes all of our symptoms so much worse. :(

    I hope that your DH can get some relief. I feel the same way that you do, that I'm basically a lost cause at this point and age. :worried:
     
  5. mommasita

    mommasita DIS VETERAN Moderator

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    Seapray..I know what you mean. I felt like a louse because although I was reading and feeling for everyone, I just had no energy to respond. I would lie in bed feeling horrible about it all.

    You are not a lost cause, none of us are. I think the winter just really throws us for a loop..My pain is tenfold. GIANT hugs to you.

    Tigg: I hope your head got a little easier as the day went on. I wear shades ALL The time. With the Sjrogens I have photo sensitivity, plus it hides the exhasution and pain::yes::

    Carrie. Exactly. Well, I didn't do the physio, they were actually :scared: when they saw me. I broke down crying.

    I am SO sorry if I missed anyone else. It is not purposely done.

    Well, my Rheumy got me in tomorrow at 1. Now I am a little freaked (like usual) because I can't sleep thinking of what I want to say. I faxed a request for this appointment, and then I get there and seriously look stupid. I just tense up. Today they Pysch told me she never saw me this way, and I did speak up A LOT. I hope I can tomorrow.:(

    Gnight and hugs everyone.
     
  6. tiggspring

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

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    Sea Spray,

    Its soo good to see you! I have many days when I just lurk too. I might post something quick someplace else but here I want to make sure my post makes sense so I wait.

    Well as of this am its day 15. Awoke with migraine. Last night DD13 argued with me then left the room. It got so bad I just cried and cried. I could not wrap myself around the pain. All the control techniques were useless. Its been tooo many days and I just couldn't hold it together. In someways it felt good. I don't realize how hard I have to concentrate to control all my pain until I lose control and cant get it back. Still it freaks the kids a bit because they never see me cry. They might see a day here or where I tear up or even and have a few stream down my face until I can catch my breath but full out sobbing well that hasn't happened in two years.

    Things look GREAT with new DR. My got she is the first one that actually gets it. I mean full out gets EVERYTHING and has good scientific reasons as to why. Since I worked in the medical field and have a good grasp of advanced bio I know when I'm being bs'd. Bad part is OMG its expensive. Yesterday 450 oop for visit (3hr alone w Dr.) couple of supplements and a IV vitamin/anti fungal IV. She only added two things to the cocktail of supplements I give DH (when he takes them and I can sort them out without brain fog. He will be on a. 3 stage antibiotic regimen unless his second visit in 4 weeks results in reassessment . Thank god the insurance picked up the first round of meds one antibiotic was $400 for 30 days! The antifungel for yeast was picked up for 10 days ..he needs 30 because she feels he has a yeast infection from all the antibiotics and because he is now on stronger ones to boot. We gotta call Insurance today to get that fixed. Hopefully we can get reimbured for some of visit. We will submit the forms and see how it goes. So I think treatment will be at least $3000 oop to start and then increased costs due to diet and supplement changes. Today he get full blood work up. Like 20 viles! I hate to see that co pay! But its to test for all possible hormone, infection, viral issues for all these unexplained issues. She doese them once instead oll all back and forth other drs do plus lots or hormone stuff that others just dont do. Well gotts get kids up or going to be late. Will explaine the specifics of treatment later. I think you guys
    will find it intrersting.

    Pain free vibes and pixie dust to all1
     
  7. mommasita

    mommasita DIS VETERAN Moderator

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    Ugh on the headache. Sometimes the good old cry is just necessary, and I agree it does feel good. I hope it released something for you. My daughter is the same age, and isn't always the easiest of times;)

    I'm sorry about the migraine :worried:. Hoping it eases up somewhat, if not all, but I know the reality of that.. :hugs:

    That is amazing about the new Dr. It is SOOO wonderful to have someone just get it. It sounds like you guys are on the right track.

    Have a nice day everyone.
     
  8. SeaSpray

    SeaSpray Disney World fan since 1976

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    How is everyone feeling today?

    My IBS has been acting up today. Blah. :sick:

    After sleeping almost non-stop for the past week, I was able to go to work yesterday (2pm - 7pm), but I didn't really make dinner because I was exhausted and fell asleep after work. One of my DSs put frozen chicken in the oven, and DH heated up some clam chowder.

    I feel a little accomplished today though. I went to the food store, then came home and put (fresh) chicken in the oven AND put a frozen pot roast into the crockpot for tomorrow's dinner.

    It's snowing right now and I'm not looking forward to going to work in a couple of hours and having to deal with clearing off the car now, and at midnight when I get out of work. :cold:

    I hope everyone is ok. :grouphug:
     
  9. tiggspring

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

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    Thanks for all the support. looks like the worst is over. Sat almost go head ache twice but fended it off and made it out to dinner then a movie that we had been trying to see for several weeks. Sun felt bit hung over from weeks of headache and almost got a significant one but again managed to fend off with meds/ice. (YEA!) Today got out and did some much needed shopping. I havent done real grocery shopping since Christmas just pop in/out when I could manage it. So today it was odds/ends wed will be grocery because I have to focus on bills and getting list together because I'm out of everything. Thanks god for a pantry and upright freezer that store enough for couple months because there was no way I was shopping for 5 past two months. Isnt it amazing how good it feels to get somthing simple like groceries done?

    On the DH front he seems to get better every day with the new antibiotics. His snoring is way down (maybe swelling in throat from infection) and he is generally more put together. We are definitely on right track! Now he starts yeast treatment because she thinks he has yeast infection which of course gets worse on antibiotics. He has to basically go on low carb diet and give up the booze lol. This might make him feel worse as toxins leave but I'm sure it will go fine. He is a strong guy.

    So for the moment all good in Pa.

    Hope warm front coming in makes you all feel better.

    Sending pain free vibes and pixie dust to all.
     
  10. mommasita

    mommasita DIS VETERAN Moderator

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    HI all. Sorry about the IBS SeaSpray, that isn't fun at all.

    Tigg: So glad to hear all this. A little bit at a time. I hear you on the little things getting done make a big difference.

    Well, I am trying Celebrex AGAIN. So far it has helped. Saw the Dr for an emergency appt and he told me I looked quite bad. He is referring me to that neuro who specialized in rare muscular disease. I may have written this already :rolleyes1. MEMORY..lol.. And that she wants to do an open muscle biopsy. She thinks along with this I have a rare muscle disease where it atrophies after effort, while most stop during effort due to pain or whatever. I do it, and then I a pay like a who know what.

    But, the Celebrex has taken that horrible flare off, and I am left with soreness, but manageable. Actually made supper tonight, we ordered 5 days last week, and not only is that horrible, it is NOT in our budget. I also baked cookies, cleaned and vacuumed.

    Tomorrow we are expecting FREEZING rain, ice pellets, and some more wacky weather. I have changed my pysio from Tomorrow to the next day. NOT driving 2 hours in that.

    Sending gentle hugs to all.xo
     
  11. tiggspring

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

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    Mommaista,

    Glad you had functional day. This morning my whole body feels like it is vibrating in pain but no migraine :). Keep feeling like I will get them but don't. I realized last night that that period where I
    cant decide if I will get it IS a headache by most people standards. I usually get pressure behind eyes on side of head etc I just don't consider it one. Tell you how much we write off as normal most people would consider a reason to complain.

    Why did you stop celebrex? My dh wants me to try it but I had a rough time with its cousin vioxx and its expensive!

    On the weather front its 60 today! But in 30s tomorrow....Hope this doesn't take me for a spin.

    Seaspray has your IBS improved?

    Sending pain free vibes and Pixie dust to all.
     
  12. mommasita

    mommasita DIS VETERAN Moderator

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    I am right there with you on those headaches, and symptoms.
    I am in it right now, but it is "just' a headache you know? Hope it stops there.


    Surprise here, ;) I don't remember why I stopped taking them..LOL. I have tried at least a dozen, and have had many different effects. Desperate beyond belief this time, I am trying. He gave me 10 packs with 3 pills in each, and to call his office for a prescription if I need it. So far so good. I think I will call at the end of these. I don't know the price, too bad I couldn't get them and mail them to you.

    Well, off to Plan a Tan, as this is my new bone therapy. XO TO ALL
     
  13. tiggspring

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

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    Well finally had a good day!!! YEA!

    Got to sleep late as kids had 2hr delay then out to finish this months grocery shopping that I had to break up into 3 trips. Now feeling pretty good :) Maybe tomorrow I can CLEAN! That would make me sooooo happy. I see stuff all over and on floors and it drives me CRAZY but no bending over with headaches and kids get away with alot then too so house looks like it could be on the show hoarders! LOL

    Oh it feels good to take a breath and not be in severe pain.

    Momma how was your appt?

    Carrie do you know anymore???

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

    mommasita DIS VETERAN Moderator

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    SOOO happy to hear that! Don't overdo it now (in best mom voice ;) )

    I had a pretty good day also. Got all the housework done, bedding and all. Groceries done last night with my son's help..

    My next appt is the 7th with the neuro, so this upcoming week. I am going to force myself to remember all that I have to ask.

    Weird thing. I had a MIGRAINE of all migraines the other day, took my maxalt, and for the second time had a full out nose bleed. 2 hours, so going to ask about that. I took my pressure, and it was fine, so maybe the maxalt????

    Thinking of everyone, and wishing you all a painfree and happy weekend.:):hug:
     
  15. SeaSpray

    SeaSpray Disney World fan since 1976

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    I will probably end up getting fired from my new job. I had to call in sick again tonight. :( I worked all last week, but the week before I only worked 2 days. They have a strict attendance policy.

    I have my rheumatologist appt tomorrow morning. Yesterday was actually a pretty decent day so I thought that I was going to start feeling better, but today is the worst day in a very long time; IBS, fibromyalgia, arthritis, headache, etc. *Everything* hurts. BLAH. Shoot me now.

    I hope everyone is feeling ok. :grouphug:
     
  16. tiggspring

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

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    Seaspray hang in there. I remember the day that I got a note from my boss saying I needed to plan my time better because I missed a deadline....I was in the ER! Not sure how you pencil that in in advance :( That was the day my Dr put me out of work. It was financially very hard. We lost all my income at a time when DH had to take a 30pecent cut for new job he needed to get his social work licence. It was a crazy sad time but I really feel that working so hard for so long was what landed me bedridden for more than two years...Is it time to take a break from work even if its temporary disability?

    Your not the only one all over the place. I had an hr last Saturday I felt so good I was dancing. That lasted only until the next weather front came in an hr or so later. This week has been complete up/down. Getting lots of shopping/errands done then CRASH by 4pm Still better than 15 days of migraine!

    Pain free vibes and Pixie dust to all!
     
  17. mommasita

    mommasita DIS VETERAN Moderator

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    It is so hard especially with a new job. Sorry you are having such rough times. It seems winter plays such havoc, and make things so much worse. Good luck with your appointment. I was happy I was at my worst when I saw him (if that makes sense) because this way I actually said what needed to be said, as I usually am not all that good at that part.. Hugs to you
    The weather really does suck, and make this soo much worse. I am with you on the crashing. I had pysio today, and did a load of laundry, ending up on the couch for 2 hours and picking up supper. Had it all out to make and everything..:mad: Couldn't do it. Up now with the monthly usual nightmare lately, and go in Tuesday to see the Dr about a decision on this.

    I see the Neuro on Thursday of this week. I am just about seen by every Dr in the city it is starting to feel like.

    Can't do this pysio, and it was my goal. It is just kicking my butt royally.

    Hugs,, and energy to all.:grouphug:
     
  18. tiggspring

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

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    I'm so glad my Dr 20 yrs ago told me flat out that physical therapy would make me worse. That the purpose is to make progress weekly and therapists just couldn't help but push us Fms pts too hard. I still bought a treadmill and tried for a yr to improve weekly..Of course that didn't work. :(

    Dh's new Dr had a great explanation.... of course right now I cant remember everything she said :( What I do remember is that she said when they were running the FMS clinic they found during sleep studies pts never got to full rem sleep even when they thought they slept well.( I haven't dreampt in nearly 20yrs..used to have very active dreams). When that happens your body cannot complete the vital functions to repair cells. This means we heal slower (I know breakouts take weeks to heal instead of days). This effects exercise in that we create small tears in muscle etc, we deplete energy within the cells when we exercise and if we don't heal at night we get worse. She also explained that while many of us have normal thyroid levels Drs rarely ever test for the hormone that regulates the t level that enters the cell. Apparently there is a hormone that acts as a gate keeper. When present it stops T levels from entering the cells many of us have high levels of this thyroid hormone makeing the normal thyroid level irrelevant and us tired and unable to recover.

    Hope this explanation makes sense

    Sending pain free vibes and pixie dust to all!
     
  19. tiggspring

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

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    Ok my explaination was bugging me so I went digging.:surfweb: The hormone the Dr refered to is Reverse T3.Look at the symptoms....does this look like all of us or what? Here are two explainations the first from a thyroid web page the other from a discussion board. Why I was never tested for this I dont know. I saw "the best" endocrinologist in Pittsburgh several years back but never got this. Our hospitals rate in the top 10 in the country so you think I would have gotten a more thourough exam since it had been going on for 15 yrs and on my Dads side of the family there are 4 siblings 2 had hypothyroidism requiring removal of their thryroid and a 3rd had thyroid cancer. Can you say family history???!!!!


    http://www.stopthethyroidmadness.com/reverse-t3/

    http://forums.webmd.com/3/thyroid-disorders-exchange/forum/290





    I have lots of energy right now BUT......getting a migraine:mad: I have all this laundry housework I am eager to do but DO NOT want to trigger major Migraine episode. Excedrine, ice and Coke better work soon. My eyesite is getting more blurry which in not a good sign GRRRR
     
  20. North of Mouse

    North of Mouse DIS Veteran

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    Physical therapy and exercise does work, and it's the only thing that keeps me going. The physical therapist *must* be trained in how to massage a person with fibro and also how long. Both are *very* important. Also, my dr. has me exercising 5-7 days a week. I use a elliptical machine or I go for a walk or bike ride. Does my body want me to? No, it doesn't, but I sure feel better in the long run to be able to function and stay as limber as possible.

    I have NO intention to giving in to fibro, and will stay as active and productive as possible for as long as I can. I'm thankful to have an understanding dr. that encourages us to not give in, but to push back as much as possible and stay positive.
     
  21. tiggspring

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

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    It works only when I'm stable. Last year I was able to exersize 5 days a week for 4 months and it felt great. I have learned what my body feels like when my body can do that... usually in 6 month cycles evey once in awhile. I was an athlete when I got sick. Power walking 5 miles a day, playing volley ball and bowling in legues. I lettered in HS sports which was a big deal as girls just got the right to play as I was entering middle school. I know how to play hurt and figh through pain. So I MISS exersizing and my size 8 body. The problem is many of us are not stable or in flares and then it doesnt work. My migraines are frequently triggerd by exhersiton and when you have them 2-4 times a week that is a big deal. I really think it depends on how severe your FMS/CFIDS is and how stable you are in the moment. Exersizing in the begining for me added to my time I was bedridden and literally crawling to get to the bathroom. When I started considering daily activities a form of exersize I started to get better. The fact is after 20 yrs I've learned that when I push I crash period.

    I'm glad that it works for you thats great!:thumbsup2

    Everything is worth trying at least once in fighting this disease.
     

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