Can fibro get worse?

Discussion in 'Fibromyalgia Main Forum' started by Musica, Nov 24, 2005.

  1. Musica

    Musica New Member

    Someone told me FM doesn't degenerate. In fact, I'm not sure if I was also told that here. Is this true?

    Of course, there can be flares that make you more symptomatic, but does the actual severity of FM not get worse? If you start with mild FM will it stay mild? If you started mild have you stayed mild? Those of you who have bad FM, did it start bad?

    What I really want to know is, if I am not too bad now (assuming I have FM), does that mean I will stay functional? Or is it possible for the severity of FM to worsen?
    [This Message was Edited on 11/24/2005]
  2. abbylee

    abbylee New Member

    It depends on where you are now.

    I just got over a 10-day flare that was the worst I've ever had. I'm better now but not as good as I was before the flare.

    That tells me that I may have more problems from here on than I had before. I just hope the flares are few and far between.

  3. smiffy79

    smiffy79 New Member

    hi musica
    i think its down to the individual so i will tell you about me :)

    i have had fm for 17 years and there have been times when ive sobbed in pain trying to get up the stairs or walk on the path.
    but there have been times although few and far between where i felt like i could take on the world which of course will be what sends me into another flare as i over do it and go mad with the house work :)
    a reasonable day for me means i wear make up lol

    when i had had this for nearly ten years i was still playing rugby! as for now i would love to get in a drop kick and a scrumage but alas no hope :)
  4. karatelady52

    karatelady52 New Member

    I think a lot of it depends on what the underlying causes of your FM are.

    Many with FM/CFS actually have viruses and bacteria which have become chronic and can cause damage to our immune system.

    When we have times in our lives that are overly stressful or some accident or injury has happened, these infections can go from becoming dormant to active.

    My fibro (which I learned this year was actually lyme disease and 3 viruses), became worse as I entered menopause. All my hormones were low, adrenals low and my natural killer cell activity was very low. I had immense muscular pain, nerve pain and stiffness all over my body.

    Lack of sleep can also make all the above worse since our bodies can't regenerate themselves without it.

    Eating the wrong foods can cause FM pain to get much worse because candida can take over in the stomach and move to other parts of the body becoming chronic.

    like you, I was always told FM won't get worse but for me, it definitely did. I guess I'm glad it did or I wouldn't have been as proactive about finding the root cause of my FM/CFS.


  5. Fudge43

    Fudge43 New Member

    ... I asked my rheumatologist this very same question (my general opinion of him as a doctor is good otherwise) .. he flatly refused to answer the question .. maybe because at the time I was just newly diagnosed and he didn't want to stress me out with the "truth" .. I would just like some honesty really .. what about you guys ? .. are they afraid we are going to give up and shrivel away ? opinions?
    Fudge in a Flap again ! : )
  6. laura81655

    laura81655 New Member

    Well, supposedly it is not "degenerative" such as RA, where it can further damage joints with time. Mine has been "progressive" in the way it has spread to differnt areas of my body since I was first diagnosed, so yes, it can get worse. Hope this makes some sense.
  7. patches25

    patches25 New Member

    Day to day it can seem to change --better, worse. But when I consider what I could do 5 years ago, or 10 years ago, or how much pain relief I need compared to the past, it certainly does seem to slowly get worse. And that is why a person has to keep learning how to take care of oneself. So everyone, take care. E.
  8. Bambi

    Bambi New Member

    there are still so many sites, and some supposedly GOOD ones, saying it is NOT a progressive illness. NOone started out on a cane, in a wheelchair or bedbound that I know of. The underlying viruses etc that many have probably account for some of the ones that get worse. Also anyone that doesn't get good pain relief can end up with permanently damaged nerves also.

    My advice to a new person would probably be too long, but in a nutshell I'd say;
    1. Rid yourself of all people, places and things that cause great amounts of stress in your life (easy to say!)
    2. Get a very understanding doctor who is willing to try everything until he finds something to fit your pain levels.
    3. See a nutritionist and have your doctor set up a reasonable mild exercise routine for days you are up
    to it.
    4. Pace yourself, rest between chores or work duties (even if you have to just "look" busy)
    5. Get and keep a good support group, this board is wonderful, but an in life one would be good too where you can see and touch your supporters.
    6. Read read and read some more, all you can find on the subject.
    7. Before you try ANY therapy, check every source you can find, even Quack Watch site (you have a mind to decide) and go from there.
    8. Ask others what has worked for them.
    9. Avoid anything that says it will CURE you, so far there IS no cure.
    10. Learn to do self hypnosis or some
    relaxation therapy you can do for yourself anywhere anytime.
    11. Don't believe anyone that says you can't get better or that you won't get worse..both things are possible.
    12. Get PLENTY of sleep and if you need a sleep aid to do it, get one.
    13. Don't let anyone force or prod you into doing activities or going somewhere if you don't feel up to it.
    14. Stand up to friends, relatives, kids, husbands..anyone who doesn't believe and support you.
    15. Don't try being a hero, if you get to where you can't stand the pain, find a doctor that will treat it seriously and properly.

    I hope you never get worse, and some don't. Prayer is good if you believe in it and so is a good hobby that can take your mind off sometimes. Bambi
  9. Musica

    Musica New Member

    Thanks for your responses. I figured there are no guarantees because not enough is known about FM. And except for underlying viruses or bacteria, so much of treatment is symptom relief.

    Bambi, that is a GREAT list of things to remember! I wish it could be in a permanent post somewhere for newbies.

    Fudge, I am someone who wants the truth. Perhaps it wouldn't all have to come on the day of diagnosis, but it's not a bad idea. I mean, most people would go home and google, and think the worst, anyway. I particularly would NOT want a doc to underplay things, then to become bad. Of course, it is hard for them to cover everything because it can vary SO much between individuals, but at least they could cover the main problems that people tend to have.
  10. cjcookie

    cjcookie New Member

    It has gotten worse for me. Even if it stayed the same, we should think we feel better as we get used to it. I have felt worse. I explain it to my friends by comparing it to MS - there are many different kinds of that disease. Some go into remission, some don't, some have very few symptoms, some have more.
  11. Fudge43

    Fudge43 New Member

    Reading these responses .. it looks to me that we are of the same mind for the majority of us .. give us the truth and we'll do our best .. our bodies are "our own".
    Each individual will do what they have to do for themselves, but support and sharing of knowledge and experience is vital !
    I say to the professionals, if you truly don't know ... say it .. but if you do know, say THAT !
    Treat us with honesty and respect !
    Fudge : )
  12. unbalanced

    unbalanced New Member

    For years I had little aches & pains, nothing that a tylenol couldnt take care of. I was pretty young, teens & early twenties, I always passed it off as I had overworked my body, I was very active, playing softball, basketball, etc. When I was 29, I had a migraine attack that was so bad I thought I was dying, I even remember the exact date 9-22-01. This migraine had me flat on my back in bed for 3 weeks, my spine throbbed, I was vommiting everytime anything went in my stomach, I literally had to lay on my back & not move, otherwise the pain that horrible pain, would completely take over. My husband took care of me day & night, I was finally well enough to travel to the hospital, where they did nothing(I was given a benedryl shot& sent home) It took a full month for me to fully recover, I had lost 20 pounds, was very weak. After the migraine was gone I noticed those "little" aches & pains were 10x worse, nothing helped, the only doc I had at the time was a OB/GYN , she gave me vicodin, this helped a great deal. Then the fight to find out what had happened started, my symptoms became worse over time & to this day continue to become worse, I do have good days, those are very few, I'm still fighting for decent relief of my symptoms, the one thing that I have done is accept my diagnoses, and I have taught myself how to cope a little better with the pain. I'm looking for a doc that knows FM exists, & where I live it is difficult, not many FM docs around here! But, I have hope, faith, & refuse to give up. Good Luck to you! unbalanced in GR
  13. Dee50

    Dee50 New Member

    Yea it sure can. STRESS! Will make it worse for me and having operations.

    Exsample: My daughter just when to jail and I just had a ruptured appendix with in 3 weeks of each other.

    My bodies reaction: Blood pressure down to 1/2 of normal.
    Pain meds not helping much.
    Body temp. 94.5 to 97.3

    I'm calling FFC Fibromyalgia and Fatigue Center in Salt Lake for help. I think I'm dealing with Lyme Disease I've been sick forever since Mono at 16 and I'm 50 now. All doctors told me "it's in your head, get used to it".

    Except my new D.O. Pain managment doctor but I need a Lyme doctor.

    Take care,
  14. pumpkinpatch

    pumpkinpatch New Member

    I was definitely getting worse. Heading towards the bedridden stage. Starting to feel better now through the FFC treatments.

    Dee Sounds like you've put your armour on and preparing to fight this! Good for you. The FFC will be able to help you. You'll be amazed at what they find out through the blood tests especially the infectious panel.

    By the way I'm terrible at handling stress. When a situation comes up that's all I can think about until I find a solution, if it's not out of my control. All these infections made my anxiety level way worse. Also my cortisol levels are really wacky and high throughout the day and evening.

    My temperatures were also chronically low and they are starting to come up.

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