hAS YOUR PAIN INCREASED OVER TIME?

Discussion in 'Fibromyalgia Main Forum' started by Bonnette, Sep 19, 2003.

  1. Bonnette

    Bonnette New Member

    I WAS CURIOUS TO KNOW IF OVERTIME YOUR PAIN HAS BECOME MORE INTENSE. I KNOW PEOPLE HAVE DIFFERENT LEVELS OF PAIN. I'VE BEEN ON MEDICATION FOR ABOUT A YEAR AND I AM DOING FAIRLY WELL. I WAS JUST WONDERING WHAT TO EXPECT IN THE FUTURE. I KNOW PEOPLE WITH FMS HAVE DIFFERENT LEVELS OF PAIN. SO FAR I HAVE BEEN ABLE TO CONTROL MY PAIN AND FATIGUE BUT THE "FIBROFOG" IS SOMETHING ELSE. THANKS FOR ANY INPUT YOU HAVE.

    BONNETTE
  2. ksp56

    ksp56 Member

    I can only speak from my own experience, but I do believe my symptoms have increased over time. There are periods when it isn't as bad and I thank heaven for those times. It does seem to appear out of the blue when I least expect it, probably after I've over done and not realized it!

    As to the 'fog', it really is irritating isn't it! I think any cognitive skills have 'left the building.'

    The fatigue is what is kicking my butt right now. I see my rheumy next week, and am going to tell him I belive I have chronic fatigue also.

    I'm praying your symptoms don't increase. Be sure to get rest, try not to overdue, listen to your body and drink lots of water!

    Hugs,

    Kim

  3. Bonnette

    Bonnette New Member

    HI KIM,

    I APPRECIATE YOUR ADVICE. ONE QUESTION HOW DO YOU MAKE YOUR FAMILY UNDERSTAND THAT YOU CAN'T OVERDU IT ON DAYS THAT YOU FEEL GOOD. WHEN I HAVE A GOOD DAY MY FAMILY SEEMS TO EXPECT ALOT MORE OUT OF ME. THEY DON'T SEEM TO UNDERSTAND I NEED TO PACE MYSELF. MY FAMILY IS SUPPORTIVE BUT IT SEEMS I HAVE TO HAVE A BAD DAY FOR THEM TO REALIZE THAT I DO HAVE FMS. ANY ADVICE ON THIS?

    THANKS
    HAVE A GOOD DAY

    BONNETTE
  4. jadibeler

    jadibeler New Member

    Everything has increased over time and new symptoms develope all the time. In '77, when I was finally diagnosed, the rheumy told me I would probably "grow out of it" by the time I was 45. HA! Not much was known about it back then. He just said it was hereditary.

    As for my family, I lost a husband and 3 children several years before I was diagnosed. Everyone said I was just lazy. At the time, my mother was still under the impression that she had MS and she had a blind spot (denial) where my health was concerned, even though I was showing symptoms of MS. After I was diagnosed with FM (fibromyalgia in those days)my immediate family started to understand but I fought with friends about it for years. After Mom's "MS" was rediagnosed as FM, I could tell my family I had the same thing as Mom, and everyone was used to her being ill.

    But don't base your expectations on the future by my life. So much more can be done for FM now - as I'm just learning from this board - and the people suffering now are likely to find relief in the combined knowledge of our board members and the increased knowledge of holistic doctors and some medical doctors.

    JoAnn
  5. loriRn

    loriRn New Member

    I've been diagnosed for a year now, and I also seem to be able to keep it at a managable level. But I've noticed that the pain is spreading to areas that never hurt before and becomming more intense. The fibro fog stinks. Ican never find the word I'm looking for.Sometimes i feel like an idiot.LOL. I also find the fatigue the hardest thing to deal with. At least we're all in this together. Lori
  6. ksp56

    ksp56 Member

    In regards to making family understand....... My husband is wonderful and supportive. He can tell by looking at me when I am not doing well. Now my two children ages, 21 and 16 are another story. Sometimes they are helpful and other times, I think they don't want to deal with it. This also goes for other members of my family and some friends. I'm trying to get to the point with those who 'don't get it', where I just ignore them and don't talk about it. Easier said than done!

    Hopefully, you will be able to express to your loved ones what it is that you feel and need from them. It isn't in your head, you are not lazy, you are sick. Let them read some of these posts if they are negative.

    There is a good thread regarding 'my family doesn't understand.' It's long, so you can tell it really touched a nerve with many of us, but well worth reading and possibly copying!

    I wish you understanding and love from the people you care about the most.

    Hugs,

    Kim
  7. tandy

    tandy New Member

    I can only speak for myself...hopefully this is'nt something you'll experience. My FM has gotten way worse.
    For the first 5 years it was'nt so bad.(although I thought so at the time) But compared to now!...I'm so much worse its scary!!The pain is way more intense,daily.And new spots are becoming sore.Its very widespread for me,and mostly its at about an 8-9 daily~(no control over this at all!!)but thats my crappy drs. fault~She does'nt treat the pain. I'm set up to see a pain specialist in Nov. With a bit of luck I can get back some of my life~
    Take care :)
  8. toots2

    toots2 New Member

    I am much worse now than when diagnosed 7 years ago. Up until two weeks ago, my pain was waist down in my buttocks, legs and feet. Now, it is in my upperbody mainly in my arms. One thing I strongly suggest is that you try and keep exercising, even if it is only taking a walk or stretching (taichi by video is great). I think my muscles have atrophied (sp?) from lack of use. I am still active, do things, and lead a busy life, but I hurt so much more than I ever did before. I think if I had exercised more, I would be better off. I have always been able to swim with the fibro but no more. I just end up in too much pain. Please, please try and exercise some everyday to keep your muscles in shape so you won't end up like me. Toots
  9. fullarmor

    fullarmor New Member

    My pain and fatigue have definitely gotten worse. The fatigue is getting worse and worse, and the pain is changing and spreading to different areas. At first it was in my legs, feet and hands. Now it's legs, arms, chest wall, upper and lower back, and joints too a bit at times. I've only been diagnosed for 2 years, so i'm very afraid too of what the future holds. I truly hope you can continue to keep yours at a good level. good luck!
    fullarmor
  10. CreateHope

    CreateHope New Member

    I think I have managed my pain better over the last two years since I was dxed with FM, but my fatigue level has increased.
    New pain for me is joint pain in my knees especially when I sit down or stand up.
    I've known people with FM to "get better" and go back to work and then relaspe. I think everyone's an individual, because I know some people here manage to work full time.
    Kate
  11. catgal

    catgal New Member

    don't make the same mistake I did. I am 54 and have had FM/CFS since I teens. It has definitely progressed and gotten worse over the years, and the fibro-fog & memory loss has become critical. However, the pain and fatigue continually assaulted me.

    I was so used to aching, and hurting, and having bad flares that I blamed every ailment on the FM/CFS and, therefore, didn't get it checked out. Meanwhile in my 30's, alot of my additional pain ended up being due to osteoarthritis, psoriatic arthritis, and rheumatoid arthritis. I mistook all the joint pain, swelling, and inflammation as part of having FM.

    Then, in my late 40's, my back, neck, and shoulder areas started hurting unbearably. And I started having one FM flare after another. The pain became so debilitating that I had to quit my good full time job and get a part-time job with much less pay, no benefits, no retirement, and trying to cram 5 days work into 3. I went downhill in rapid speed.

    Finally, 4 years ago at age 50--the pain in my back, neck, and shoulder areas got so bad that I couldn't function, missed alot of work, and was bedridden whenever not at work. The pain became so excruciating that I couldn't sleep, eat, or put my clothes on without assistance. It was then I realized that *something else* was terribly wrong.

    I got x-rays, an MRI, and other tests and discovered I had such advanced degenerative disc disease that no surgery could help me. I had waited too long believing it was all FM/CFS.

    Now, I function & continue to work 3 days a week with the help of potent narcotics which I've developed a physical dependency to, and that has troubled & conflicted me a great deal~~~until I saw a Pain Specialist last week. He has become my "Miracle Man".

    Please don't assume that all your aches & pains--especially new ones--are all FM oriented. If it persists and causes you alot of pain or bad days--have it checked out. We have become so used to aching, hurting, and flaring that we overlook other possible causes. I waited until it was too late for surgery to help.

    And because many of us take pain killers, they can mask additional pain or changes in intensity that are warning signs that something else is wrong with us.

    Pay attention to the changes in your body, in different areas & levels of pain, and the differences in intensity.

    And as far as trying to make family & friends understand your needs.....give them educational information on FM/CFS, and stop repeating the same explanations or apologizing over & over again. If they haven't caught on the first 10 times--they don't want to. Live your life the best way you can, attend to your needs, and don't waste any more of your precious energy trying to make them 'hear' you. Enough is Enough. And don't occupy your mind & thoughts with guilt. It puts too much stress & strain on you and drains you of any possible happiness. For we need & deserve all the good moments we can get.

    Take care, and God bless you all REAL GOOD! Carol....
    [This Message was Edited on 09/20/2003]
  12. Hinemoa

    Hinemoa New Member

    over time I appear to be developing FM symptoms. Pain, which was not one of my major symptoms at first has lately become persistent and insistent.

    Sandra
  13. HoaxedTotem

    HoaxedTotem New Member

    I'm actually starting to wonder if it actually CAN infact kill me.

    I am no longer on any pain medicine , unfortunately these Dr's around here are uneducated about treating it , and even on good pain meds there's still pain . It's a start to get some pain meds to help , but I really think they need to be working on a cure !


    [This Message was Edited on 09/21/2003]
  14. Mikie

    Mikie Moderator

    I have been sick for 13 years, but had a lot of symptoms before my CFIDS and FMS were triggered full blown. Two and one half years ago, the fatigue and pain had gotten so bad that I had to stop working. I was on Morphine for pain.

    I decided to start the Guai treatment. It took quite a while for it to help with the pain, but it helped tremendously with Fibro Fog almost right away. As the Guai started to help with the pain, I needed the Morphine less and less. I just had a flare and had to take one Morphine tablet and that was the first time in almost a year. I usually take nothing for pain now.

    I also take Klonopin which helps with sleep and that helps with the pain. Quality sleep is when our muscles repair themselves. Klonopin is also believed to interfere with pain signals in the brain.

    I still suffer from some fatigue and cognitive problems, but they are slowly getting better. I am on a very aggressive treatment plan for the CFIDS which, I believe, is responsible for these symptoms. If all I had were FMS, I believe I would be about 80 percent healed.

    What has worked for me may not work for everyone, but I do know others who have gotten so much better on the Guai treatment.

    Love, Mikie
  15. sealevelheaded

    sealevelheaded New Member

    Hi Bonnette,

    I got worse initially, but after finding out what to do from a local fibro support group like not overdoing it, stretching, etc. I started living within my limits and the pain improved.

    Unfortunately the local support group became pretty negative and it brought me so low emotionally that I had to stop attending. I was the only one who was working and not applying for disability, and so much of the conversation was about how to apply for disability and what to do with so much time on your hands.

    The best improvement, the most dramatic, came after I read two books on nutrition...Foods That Fight Pain by Neal Barnard MD and The pH Miracle by Dr. Robert Young and Shelly Young. The later sells stuff via an MLM, but the diet recommendations are sound. By eliminating certain foods that were triggering my fibro flares and eating primarily an alkaline diet, my pain has decreased quite a bit.

    I know this won't work for everyone, but I thought I'd share what worked for me.

    Keep thinking positively and laughing a LOT. Those endorphines do wonders!!!

    Be well, Lisa
  16. MrsRoseFromKy

    MrsRoseFromKy New Member

    Bonnette,
    I was diagnosed in July with FMS, But, I have had this problem for years.
    But, Yes my pain has increased.
    As for the " Fibro Fog " It seems that it is getting worse all the time.
    Judy
  17. Mtnflower

    Mtnflower New Member

    My pain is increasing. I was diagnosed 25 yrs. ago and spent a long period of remission when I was younger but now there are no periods of remission. Of as I have gotten oder I have picked up some other problems to make the pain worse. I have osteoarthritis,sleep apnes, restless leg syndrome,and a nerve entrapped between two vertebrae.
    Amen to Catgirl's advice.Don't blame it all on fibro.
  18. Riomio

    Riomio New Member

    I HAVE HAD FIBROMYALGIA FOR 20 YEARS AND IT HAS GOTTEN WORSE OVER THE YEARS. I HAD TO QUIT MY JOB LAST YEAR. I AM SO USED TO LIVING WITH THE PAIN THAT IF I KEEP BUSY I TRY NOT TO THINK ABOUT IT. I DON'T MEAN BUSY DOING HEAVY HOUSEWORK BUT HAVING MY MIND OCCUPIED WITH THINGS OTHER THAN THE PAIN. I DON'T THINK IT WILL EVER GET ANY BETTER AND JUST ACCEPTING THE FACT THAT I HAVE IT AND IT IS PART OF MY LIFE HELP ME TO LIVE WITH IT. I GET A STEROID INJECTION ONCE A MONTH AND IT HELPS ALOT. I HAVE TRIED ALL THE PAIN MEDS THAT THEY HAVE AND THEY DON'T HELP MUCH. WHEN LIFE HANDS YOU A LEMON MAKE LEMONADE.

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