Fibromyalgia

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  • I, too, have fibromyalgia
    I'm glad I found this posting regarding fibro.
    I'm new to the site (only a few days) so am doing a lot of reading here.......this site is so vast!

    Anyway, I've had fibro for a number of years and have had various antii-nflammatories which either didnt help or upset the stomach too much. I have been on Celebrex now for a number of years (I take one per day) and it works quite well for me. If I forget to take it,
    I know it within a few hours. I'm hoping that it does not get taken off the market!

    There is alot of things I cant do anymore. Presently, I am not working....I have been trying to help paint a room here at home; had to give up and quit yesterday.....I'm paying for the little bit I did do now! Even sitting here at the computer for any length of time bothers me. My problems are all in the upper body..........shoulders, neck, upper back, arms. I go to massage therapy and it does a wonderful job......I am full of huge knots all the time. I would go weekly if I could afford to.

    Thats it in a nutshell for me. Anyone who would like to chat about their fibro sometime, let me know. I'm still trying to find my way around here and figure out how to do things.

  • I feel your pain,
    for me it's all over.
    I can't even do a few dishes without horrible pain in my lower back and spine.
  • Insurancelady, I was wondering if the Milk Thistle could be used as a tool to release toxins from your liver...heavy metals, iron, etc. I also know that the more you are overweight, and have fat in the abdomen..the more likely it has infiltrated your organs too..

    My liver enzymes, and cholesterol are great..are yours?


    NanaBCat, I haven't found anything to work for my Fibro pain. Sometimes a very hot shower helps for a short while..and I know of other sufferers that use a hot tub and that helps...No pain meds help me, and Elavil makes me like a zombie..so I just suffer through it..I am trying different vitamins now, and trying to get a better sleep cycle...I also found out that a 10 mins walk helps...unless it is your feet that are flared up!

    Does anyone have any other health problems along with Fibro?

    Hugs, janet
  • Fibro
    I'm taking Guaifenisen for my fibro and it helps - doesn't cure, isn't 100%, but it **helps** a **lot**! Only problem is, if you take Guai, you can't use products with mint, aloe or other plant extracts in them. Can't take aspirin, either.
    More detailed info at:
    Fibromyalgia Treatment Center
    http://www.fibromyalgiatreatment.com/

    Other health problems that tend to go along with fibro are: hypoglycemia, irritable bowel syndrome, and chronic fatigue. the symptoms accomplnying hypoglycemia are often frightening - "fatigue, irritability, nervousness, depression, insomnia, flushing, impaired memory and concentration, anxieties, frontal or bitemporal headaches, dizziness, faintness or actual syncope, often blurring of vision, nasal congestion, ringing in the ears, numbness and tingling of the hands, feet or face, excessive gas, abdominal cramps, loose stools or diarrhea are frequent. many complain of leg or foot cramps." The thing is, those with hypoglycemia will experience any of these even when their blood sugar is normal! It's a chronic condition, and it takes about 7 - 10 days to begin see results from dietary changes. The minute you relax that diet, the symptoms come back. No fun!

    I take no pain meds except on the worst of days - then I only take them at night. I don't take an antidepressant at this time - all of them have made me "dopey." But I've heard some really good things about Effexor, and may be looking into it sometime soon.

    Hope this helps!

    Cheerio!
    Elizabeth

  • Elizabeth, I tried Guaifenisen..it actually made me feel worse, maybe due to the fact that I have other overlapping illnesses.. early on in my Fibro..I was able to go into remission for months at a time..with minimal pain, and fatigue..not any longer...it is with me every single day..I try not to focus on it..and try to not let it rule my day.

    Are you able to hold a job?
    If so, what type of work do you do?

    janet
  • Quote: Elizabeth, I tried Guaifenisen..it actually made me feel worse, maybe due to the fact that I have other overlapping illnesses.. early on in my Fibro..I was able to go into remission for months at a time..with minimal pain, and fatigue..not any longer...it is with me every single day..I try not to focus on it..and try to not let it rule my day.

    Are you able to hold a job?
    If so, what type of work do you do?

    janet
    I've had Fibro for over 30 years - diagnosed about 20 years ago. Guai will make you feel worse for about 6 weeks. You may have been taking too much. Some people can only tolerate up to 300mg a day! As another Guai user says, "Guai ain't fer the faint of heart!" There are a few people who can't tolerate it at all, and you may be among those.

    No, I can't hold a "traditional" job, but thanks to FedX, UPS, the US Mail and the Internet, I am able to work as a legal nurse consultant. Attorneys send me the medical records of people who have personal injury claims or think they may be the victims of malpractice. I analyze, review, summarize, and explain the meaning of the medicals. I'd say about 85% of the cases I review turn out to NOT be malpractice, but that 15% - Hoooo boy! Now this is after the initial screening the attorney gives the records - he's already rejected about 1/2 of the records that have come to him, so medical and nursing malpractice aren't as frequent as some people think they are.

    I've fond that I have to give myself about an hour in the mornings (sometimes more) before I can accurately assess what that day will be like. Thunderstorms and major weather changes, especially when it's cool, will throw me into a "flare." I have a "window of opportunity" that usually lasts from about 10AM to about 3PM during which I can get things done. On "good" days, that may start at 8:30 instead of 10 and last until about 4:30 or 5pm. On "bad" days, I may not even have that window.

    I have found some things to "distract" me when I'm having up to moderate pain (6/10 on "the scale"). When it gets higher than that, however, nothing seems to help except taking pain meds and being "dopey" for a day. After I come out of the "drug fog," I usually have several "good" days in a row. So, if I have a major effort ahead of me (like presenting a n all-day workshop, which I have in October) I'll often take pain meds over a weekend and just fog out for a couple of days. I use Ultram, Skelaxin and Percogesic (OTC pain med) at night to "break" a pain cycle. Otherwise, I take little but Tylenol. I just don't have the time to be "dopey." (I spent a year on daily doses of Ultram and Skelaxin along with Desaryl (trazodone). I was in a "haze" the whole time, and couldn't even drive. My business went into the trashcan. So I decided to taper off of all of it - and did over a 6 month period of time. Not fun!)

    Most of the time, however, I just use my tried and true distraction techniques! These include using classical music (especially Mozart and Bach), taking 5 min breaks every 30 min (I set a timer), taking a 2 hour nap every morning and every afternoon - I'm up at 4:30am, make coffee, get hubby up and out, then nap from about 6-8, exercise for 10 - 20 min, work from 9 or 10 to 12, take a 30 min lunch break, work until I "give out" (usually about 2pm) and nap from then until about 4pm - then DH comes home and wakes me up. I do a little more exercise when I get up - usually just walking around the house swinging my arms. He and I take turns making supper. I also use computer games (Freecell, Mahjongg, minesweeper), letter writing, reading, etc to concentrate on something other than any pain I may be having.

    Everyone with fibro has a somewhat different experience with it. Some have more pain and less fatigue, some have less pain and more fatigue, and some have serious pain with serious fatigue. Some don't have much "fibro fog" but others have a lot. The main thing all of us experience, however, is a restricted lifestyle. Those who can still work usually can't get much else done in their lives. And those who are married often have difficulty getting their husbands to understand the "real" nature of this waxing and waning condition, and its unpredictability. I know of a number of divorces that resulted from one spouse having fibro and the other spouse being unable to understand, accept and believe what was going on. I'm very, very fortunate that the ol' curmudgeon accepts my "bad" days as "real" and not some made up story to avoid doing things!!

    I work on not letting fibro "rule" my day, also. That said, I accept the fact that I have it and that I will always need to adjust my activities to what is "realistic" for how I'm doing that particular day. So to that extent I suppose one could say that my fibro "rules" my life - it's a reality and it affects most of my waking moments - and most of the time I'm trying to sleep.

    Do all these things "work?" Not all the time. But I'm able to continue to work at my little business and to have a pretty good relationship with my family. (3 adult, married kids and 11 grandkids.

    Probably TMI (too much info)! LOL!

    Cheerio!
    Elizabeth
  • Elizabeth, sounds like you have a great schedule to work around your fibro...I was able to work for a few years..then the fibro started to stay with me..on a daily basis. Which I always thought Fibro was to come and go?

    My doctors do not believe in pain meds of any kind..so I take alot of Aleve. To me it allows me to get the edge off of pain...and then I can get to sleep at night, for a few hours.

    I think the worse part of this illness is how it affects all aspects of your life...for me, not working, is the worse.

    Do you take megadoses of vitamins? Just curious..for I am currently trying that, under doctors care.

    Hugs, Janet
  • Quote: Elizabeth, sounds like you have a great schedule to work around your fibro...I was able to work for a few years..then the fibro started to stay with me..on a daily basis. Which I always thought Fibro was to come and go?
    Yes, mine is "with me" all the time, too. Some days are better than others, but not a day goes by without major pain somewhere. I just deal with it through coping mechanisms I've developed over the years. I've had symptomatic fibro for nearly 30 years now (probably had it all my life), so I've had lots of time to "practice" which things help and which don't!

    Quote: My doctors do not believe in pain meds of any kind..so I take alot of Aleve. To me it allows me to get the edge off of pain...and then I can get to sleep at night, for a few hours.
    I have gone through all the NSAIDS. It is interesting that, just like rheumatoid arthritis and other "recognized" autoimmune diseases, there comes a point when a particular NSAID no longer works and you have to switch to another one. I've gone through Butazoladine, Indocin, Ibuprophen, Naprosyn, Voltaren, Celebrex, and Vioxx. Vioxx lasted the longest, and made me feel better than any of the others. I was really torqued out when it was removed from the market. I hoarded my remaining Vioxx, and used it to get me "through" stressful times until I finally ran out. Now, I'm struggling without an NSAID until the next one comes down the pike. No fun!

    Quote: I think the worse part of this illness is how it affects all aspects of your life...for me, not working, is the worse.
    For me, not being able to predict how I'll feel on a particular day is the worst. It makes planning for the work I do very difficult. There are days I have to work from bed (Praise God for laptops!) in "spurts" of 15 - 30 minutes with 30 - 60 minute naps between. I take Flylady's philosophy to heart: "you can do anything for 10 minutes." That's how I get through many days - 10 minute blocks at a time with however much rest I need between.

    The fatigue is also miserable. I think the fatigue component is often worse than the pain component.

    Quote: Do you take megadoses of vitamins? Just curious..for I am currently trying that, under doctors care.
    No, I just take a "Senior formula" vitamin everyday. But I add a few things - 1000 mg Lysine (I have had shingles); 50 mg Zinc twice a day (I have geographic tongue and have taste problems); Omega3 with Flax and Borage; and a super B complex supplement. I'm considering adding mega-dose niacin to see it that will help me deal with the osteoarthritis I'm developing in my fingers and thumbs - interferes with typing. I read that 500mg every 3 hours (day and night) for several days and then 500 mg 4 times a day thereafter makes all the pain and lumps go away. I've tried Glucosamine Chondroitin, but it didn't help noticeably - I took it for a year and decided it wasn't worth the $$$.

    Everyone is different, and everyone's experience with fibro is different. Guai has been the most help for me, but certainly isn't a "cure" for all the effects of fibro.

    I wish you much success in finding medications and coping methods that work for you. Have a great 4th of July! And make the decision that fibro won't "rule" you - you will "rule" your fibro!! Yeah!

    Cheerio!
    Elizabeth
  • Hi Elizabeth, Hoping you will catch this message..I wanted to tell you I had a spinal block for a procedure, and I was fibro free for 3 weeks! What a vacation! I forgot what it was like not to have pain in your life.
    My doctors were afraid I would do too much since I was feeling so great! lol

    Now, I am trying to research that and see if I can find out how exactly how that works? Is it from having my CNS numbed for 6hrs, any thoughts?

    Fibro is back now in full force.

    But thankful for my 3 weeks of bliss!

    Hugs, Janet
  • Fibromyalgia, Sleep Apnea, Insomnia, Restless Legs, Osteoarthritis, Migraines

    I would love to join you Janet in a fibro support group. I have all of the above and I am really miserable and need all of the help I can get from anyone that is suffering from these horrible diseases.
    Thanks,
    Wilmalee