Discussion in 'Fibromyalgia Main Forum' started by Iamnotgivingup, Dec 2, 2005.

  1. That is what a physical therapist told me last year. I think he was misinformed because I feel so much worst this year. I can hardly function. Like if the laundry gets done I cannot do anything else. I can only manage one task a day. If I push myself I feel soooo tired and nauseous and all in pain . I am sure I am not alone, but I am certainly getting very fustrated.
  2. dakotasweett

    dakotasweett New Member

    I have never been told that FMS doesn't get worse---but I would challenge anyone who told me that. When I experienced my first symptoms they were not terribly painful and occurred more infrequently. Now it is a daily battle and is excrutiatingly painful.

    I can empathize with your frustration...and hope that you are able to find a way to cope with this DD.

    Soft hugs,
  3. Jeanne-in-Canada

    Jeanne-in-Canada New Member


    That therapist, and the medical community at large is woefully misinformed.

    i esp. hate the bupkus about it is just harder to cope w/ as we get older. I'm only 38 and it was manageable for about 10 yrs, but slowly progressive and has been kicking my butt for the last 10. Sixty five year olds are working circles around me.

  4. hagardreams

    hagardreams New Member

    Oh yes. I can tell each and every year. Over 10 years ago, it was something that I didnt know I had, but I could manage. It is even much worse this year by far. Anyone that doesnt understand is not worth our time. Its really sad that people have to be that way. Whats worse is when you get a doctor or a nurse that tells you "Oh it doesnt hurt that bad". I try my best to be a good person, but I wish them to feel this pain, just for even one day.
    Maybe thats what judgement day is about. Sorry if I sould crewl, but I am just tired of people that say it doesnt get worse, because it does. God bless, Julie
  5. sydneysider

    sydneysider Member


    This guy is definately misinformed. If you need examples just ask the people on this board.

    Don't despair, however, as it is possible to improve.
  6. lenasvn

    lenasvn New Member

    Dr Devin Starlanyl is good at explaining what's going on. She mentions what you guys are discussing about worsening and her point of what it is that is worsening. make sense? Fibrofoggin''LOL!

    Trigger Points and Tender Points: Why the Difference Is Important to You
    by Devin J. Starlanyl © 2004 Page 1

    When you have a TrP in a muscle, it causes pain at the end of range of
    motion when you stretch that muscle, and it weakens the muscle even
    before it causes pain. Your ankle, knee or hip may buckle, or your grip may
    fail, depending on which muscle is involved (these symptoms are not part of
    FMS). You then avoid stretching this muscle because it hurts. Muscles are
    designed to work best with motion. Since you don’t stretch the muscle, it
    becomes less healthy and your range of motion lessened. Circulation in
    your capillaries, your microcirculation, becomes impaired around the TrP.
    Nutrients and oxygen can’t be delivered easily, nor wastes removed. Your
    lymph system depends on muscle movement to move lymph, so that system
    begins to stagnate as well. Other muscles do the work of the TrP-weakened
    muscle. These overworked muscles develop secondary TrPs. Satellite TrPs
    develop in the areas of pain referred from the primary TrP. These additional
    TrPs cause the false impression of a progressive disease process unless the
    TrPs are recognized. Nearly everyone who sees the cover of my last book
    recognizes some TrP referred pain patterns as their own. They don’t always
    recognize that the patterns are not FMS.

    Secondary and satellite TrPs can spread until overlapping pain patterns
    cover three or all four quadrants of the body. At that point, although they
    are still regional in nature, the TrPs may be misdiagnosed as FMS. In a
    study of 96 patients, seventy-two per cent had both FMS and CMP. This
    study was done by a doctor who understood the difference between FMS and
    TrPs. Thirty-five percent of the myofascial pain patients in this study had
    generalized pain in three or four quadrants, but they had chronic myofascial
    pain and not FMS. Among the FMS patients in this study, twenty-eight
    percent had FMS with no TrPs. Some clinicians mistakenly think that all
    FMS patients also have TrPs and that these conditions are the same. This is
    not a difference of opinion. This is an error that can have significant impact
    on the quality of patient care.

    For example, you can’t strengthen a muscle that has a TrP. People with TrPs
    who are sent to work hardening and weight training get worse because TrPs
    cause muscle fibers to be shortened even when they are at rest. Muscles
    with TrPs are contractured (physiologically shortened.) This means that you
    cannot voluntarily relax these muscles fully unless something occurs to
    change the physiology. That means TrP specific treatment. The area around
    the TrP is in severe energy crisis and is releasing sensitizing substances that
    irritate, aggravate and modify surrounding sensory and autonomic nerves.

    (14) “Strengthening” exercise causes them to shorten and tighten even more.
    Inappropriate exercise is one of the most avoidable of TrP perpetuating
    factors.(14) It can be harmful to a patient if a doctor, physical therapist,
    occupational therapist or other care provider does not recognize a TrP for
    what it is and know how to treat it.
    A muscle that harbors a TrP cannot be strengthened because it is
    physiologically inhibited. You must be out of pain with normal range of

    Trigger Points and Tender Points: Why the Difference Is Important to You
    by Devin J. Starlanyl © 2004 Page 2

    motion for two weeks before strengthening exercise is initiated, and then it
    must be gentle and introduced very gradually.
  7. chellchell

    chellchell New Member

    I agree, as far as I am concerned my Fibromyalgia has definetly progressed since I was diagnosed in 2001. It's harder each winter to get done what I was doing the year before. I'm not sure why they think it's not progressive but the medical community really needs to re-evaluate that statement.

    [This Message was Edited on 12/02/2005]
  8. Musica

    Musica New Member

    is the pits, isn't it? Yes, it gets tiresome and no wonder it wears us down!

    Unless it is my imagination because I am thinking about it more, it seems like the last six months has been a little worse than the six months before. It seems I have more skin sensitivity and have gotten nauseous from pain where it didn't used to happen.

    I have heard, and it makes sense, that not using our muscles because they hurt causes more weakness, more pain, not being used... It can be a never-ending downward spiral. Still, I do think things CAN worsen! It's hard to believe that everyone in wheelchairs or bedridden is like that simply because they haven't been using their muscles!

  9. onnaroll

    onnaroll New Member


  10. onnaroll

    onnaroll New Member

    I misunderstood sry a lttle tierd tonight
  11. onnaroll

    onnaroll New Member




    for me it was extreme pain in the first couple years.

    now im dealing with all the damage done to the muscle
  12. kimfibro

    kimfibro New Member

    i've always wondered that myself! my symptoms began in my 20's and i'm 47 now, diagnosed this past summer after deciding to put a name on my condition.

    it HAS gotten worse over the years. and not certain WHY. is it a combination of things, is it the slow aging process adding to the symptoms.

    all i know and see and feel is that certainly my condition has worsened, the pain is more intense.

    as the years go by, i have found the need to ADD SYMPTOMS to the fibromyalgia list and that latest one is sleeping troubles which for most all of my life i could have slept through just about anything! and i haven't had any change/additions to medications i'm taking.

    any thoughts about your own condition over time???
  13. CanBrit

    CanBrit Member

    When I think back, I had so many of the co-existing conditions, certainly back into my 20's.

    Now, at 49, I feel like I constantly have something. Pain here, fog there. In the last couple of months it's been something every day. Sometimes one thing will last for months and the other things come and go.

    If it's not progressive, then there's something else definitey wrong with me!

  14. kimfibro

    kimfibro New Member

    very well said! we are in the same boat on that one!

    wait, there's fog. lots of that YOU? in my boat? and where are we going????? haha.

    relate? i truly wish i had started a journal back in my 20's and kept it up until now. that would be very revealing and valuable info.

    but because there's no way to recall day by day symptoms i am just so certain this is progressive! absolutely it is.

  15. hopeful4

    hopeful4 New Member

    Just because the physical therapist told you that does not make it true! You are the one having the experience, and it is true for you and many of us here, that FM is, in fact progressive.

    I'm sorry that you are having such a difficult time, and hope that you get some help and some relief soon.

  16. darude

    darude New Member

    I have a friend who has had MS for twenty years and is more active than I am. She still works fulltime at 55 and runs a household. I can't work and can barely manage around the house.I've had this for two years and everyday there is more disability.
  17. Bambi

    Bambi New Member

    websites that were still putting out that phoney baloney information. I had the insomnia and growing pains etc growing up, then horrible periods with pain that kept me home for two days every month, then PMS, then the pain started but was easy to overcome in a couple of days. About ten or 11 years ago it just got horrible, HORRIBLE. I was in excruciating pain 24/7 and eventually was suicidal as well as having an inflated BP and pulse. It was 110 for 2 years due to the pain that doctors said wasn't there.

    Since I got pain control the BP and pulse returned to their old "normal" ranges. I tried ALL the theories before I got relief through medication and self help activities as well as a few supplements. The Trps theory is something that helps some but I've heard more who got worse from it than better. I gave it a FAIR trial and WANTED it to work, it didn't. The pain accelerated on and on and at the end faster and faster. I wasn't old or sitting around knitting. I was quite active and was walking three miles a day every day twice a day when it got to the SEVERE point.

    IT JUST DOES get worse for some of us. I don't think all. I have a friend who has had it longer than I have who goes all over the place, does her own shopping, prepares big
    family meals etc etc etc and she only takes a Motrin when "it gets bad". Why one of us gets SEVERE and with pain I would not feel bad about comparing to cancer pain, or what I think it has to be. The pain I had was plain and simply intolerable. It was doing damage to my body and my mind. I could NOT have gone on living with it the way it got.

    The pain control I have does not take away all the pain nor do I ask for that. But I am again able to do so many things that I couldn't do on a bet before. I have some degree of my life back and that is ten times more than I ever expected to have again.

    Don't let anyone tell you it "can't" get worse because it doesn't for a few. It CAN and DOES and gets VERY bad for some of us. Change doctors!
  18. smileyfacecookie

    smileyfacecookie New Member

    I was always a active person..worked all my it is all I can do to just walk very far...I would much rather be the active person I use to be...HOW CAN THEY SAY FIBROMYALGIA DOES NOT GET WORSE WHEN THEY SAY THEY DON'T KNOW MUCH ABOUT IT TO EVEN TREAT USE FOR IT!!!!!!!! BLAH..BLAH..BLAH...WONDER HOW THEY WOULD FEEL HAVING IT AND ACHING LIKE THE FLU ALL THE TIME...
  19. Jgavi

    Jgavi New Member

    I think we all have it right, as we get older the pain gets worse, as we gain weight from being less active the pain grows...many of us are not over weight but cant work out like we use to so we hurt more.

    Many medications cause pain as the side effect, even pain medications do!, most people dont even know this!

    right now I am going through the "TREATMENTS" are killing me...all these pills are made made posions but we have no choice but to take them, the catch 22 syndrome!

    Pills and more pills have ruined my liver, stomach and bones! To name a few PROGRESSIVE is the word for me- "I am getting Progressively worse from FMS/CFS"

    All I know I am worse off as each year goes by---its PROGRESSIVE in the sense of the TREATMENTS!

  20. lauralisa

    lauralisa New Member

    Dear iamnotgivingup,

    First I love your screen name. I totally agree with you and I have heard that too from some healthcare professionals that this doesn't get worse, but thank god my doctor listens to my symptoms and not this. I think everyone is different and I think FMS pain can go in cycles. I have found my pain can get worse due to some many factors such as weather, stress, how much I need to do and actually get done. Such as I like today, I barely made it to the grocery store and then came home and collapsed. I take what some people say with a grain of salt and I know my body tells me otherwise. LOL

    Take care,

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