FM Not Progressive?

Discussion in 'Fibromyalgia Main Forum' started by Chloe, Apr 22, 2003.

  1. Chloe

    Chloe New Member

    What scholar decided that FM is not progressive? One of the last sentences in my private insurance disability denial is that FM is not progressive and since I have lived and worked with it for the past 8+ years, I can continue to do so. Obviously, the deciding authority has had no experience with FM – probably only has read about it in some journal! Social Security had no difficulty in giving me disability benifits. But this ins co that I paid a monthly premium to has denied me twice. How do I fight this? I certainly do feel worse than I did 8 years ago. You can’t tell me that it was this bad at the beginning and I just didn’t notice! I was sleeping more than 3 hours at night; I wasn’t taking all this medication; I didn’t trip, stumble, and fall. My memory was in tact and verbal recall was not a problem. My body and mind were functioning then. I got my master’s degree at an internationally ranked university while going through a divorce, raising three kids, holding a full-time job, teaching college English 2 nights per week, and going to my classes 2 nights per week. I had a good job and was good at it – but not any more! I can barely stand long enough to heat a can of soup. I live alone and must depend on others for help in doing basic household chores, i.e., change sheets on a bed, empty a large bag of dog food into more manageable containers, change a light bulb that requires standing on a stool. I have severe difficulty analyzing problems and making decisions – even when I’m right, I no longer have the confidence to be sure of myself regarding the simplest of things. This is a terrible way to have to live. I have NOT been this way for the last 8+ years. Who gets to say that FM is not progressive? – what do they base it on? – is there any medical person of note who has FM and can speak from personal experience? -- sorry for ranting –I’m ticked!
  2. kadywill

    kadywill New Member

    and I think that there is a multitude of symptoms that I have that are all a part of this syndrome, from allergic reactions, pain, fatigue, hypothyroidism, body temp problems, weight issues, food intolerances, digestion problems, BP fluctuations, edema, headaches, dizziness, skin problems, depression, anxiety, panic attacks, anger, insomnia, muscle problems, adhesions, myofascial tenderness, yeast infections, visual disturbances, joint inflammation, fingernail problems, TMJ issues, spinal problems, dental issues, oral/nasal ulcerations, med intolerances AND med TOLERANCES, personality issues.....and so on and so on~~~~~~
    I read two books this week about Fibro/CFIDS. One is called, "Chronic Fatigue, Fibromyalgia and Environmental Illness." It is by Burton Goldberg. After reading this one, I was overwhelmed by the theories and treatments available and I decided that the ONLY way my garbled senses could formulate a protocol for treatment was to be treated as an in-patient by one of these specialists for about a year or so, giving them complete control over everything!!! There is no way I could make these decisions, choosing the right plan for way. I am just too tired and sick. They ALL make valid points, in this book, and it makes sense to me that all of my health issues are related.....all of them. BUT, the thing is, how to do the strict diets and choose the right meds and supplements and tear up your home to rid it of environmental toxins and stop working at a job that may be causing the "sick building" syndrome....all the while making your home liveable for the rest of the family and not making everyone else CRAZY while your life revolves around this and NOTHING else!!!!! I mean, you can easily become obsessed and find out that none of these therapies actually change a thing for YOU! In this book, there are 26 doctors who will "show you how they reverse these conditions with clinically proven alternative therapy." These make sense, but I had to go to bed after reading it; I was exhausted! I give up.......I'll treat the symptoms for now and try to read some more when I'm not flaring. The problem with that is, when not flaring, I actually HAVE a life in which I do not think about FMS or allergic reactions and I don't want to give the DD any more of my time! (The pain is always there, relating to spinal problems, so that's a no-brainer)
    The point I'm trying to make is: I am proof that this SYNDROME is progressive. Mine started with a simple case of hives during pregnancy in 1974 and has moved on to include all the above symptoms I mentioned above, over the years. The hives are still there. My body (not my mind) has a good memory for these things; it keeps the old and adds more all the time! I challenge Social Security or anyone else to defy me on this. I am not a malingerer, nor have I, knowingly, been accused of being such, and I am not a hypochondriac. My symptoms are real, as are yours. I challenge them to live in my home, at any time, or to put cameras in here without my knowledge....they'll see that this misery is unwanted and for REAL.

    [This Message was Edited on 04/23/2003]
  3. starstella

    starstella New Member

    I, like you, would like to know what "authoriy" has said that. I can recall reading (or maybe it was my diagnosing MD who said "some get worse, some stay the same, some get better". I read your bio, we have many similarities, except I had my three children begining at age 31 so they are three teenagers (well, one is 20 now,) who I am still finishing trying to raise. I have been thinking lately how I have spent about the last 10 years of my life looking for ways to feel better and just seem to be getting gradually worse instead. It breaks my heart because I was very in to advancing my nursing practice, am now doing some post masters work and my body is fighting me. I didn't think that I would have to deal with these issues at age 51.
    But...back to your rant.....go right ahead.....this is all an example of this dd treatment being influenced by medical misinformaion and various insurances riding on the misinformation bandwagon because the bottom line for all of these decisions is money.
  4. garyandkim

    garyandkim New Member

    Progressive. We have more and more new symtoms and things popping up as time goes on.

    Take care, Kim and Gary
  5. truthseeker67

    truthseeker67 New Member

    although now I am used to the pain and fatigue. I do notice more symptoms involved than before like thyroid and chemical sensitivities. I am in my 4th noticable year at age 35 and it scares me to think in another decade or two that I could be worse.

    I shall be interested to hear what others think.

  6. klutzo

    klutzo New Member

    This is a semantic problem. When it comes to legal definitions, you must be precise, because company lawyers are going to be and they will screw you on the basis of wording if they can.
    FMS does SPREAD, but spreading to every system in your body and causing more and more problems in every place it spreads is not the same as being progressive.
    If it were progressive, your muscle pain would get worse and worse over time and you would need morphine to get the same relief you once got with Tylenol. Your fatigue would progress until you were completely bedridden and helpless.
    Do you see what I mean?
    This is a technical way to get out of paying you, since having it spread everywhere and cause all sorts of problems can cause just as much disability as progression.
    I would recommend a lawyer who specializes in disability. They usually work on a contigency fee basis, so you won't have to pay anything unless you win. Usually insurance companies go along with the government on disability. Since the government has approved you, that is in your favor.
    Good luck and keep fighting,
  7. bre_ann

    bre_ann New Member

    that discussed fibromyalgia and it said it was not a progressive disease. However, in the last 5 years since I've started having problems, I have had MORE problems. I still am in pretty good shape compared to many who post here but I would bet money that most people would consider their disease progressive. I do wonder how I will be feeling 10 years from now and how many more problems I will have. I'm only 38 now.
  8. mamie43

    mamie43 Member

    Hello Chloe:
    I have had symptoms since a bad car crash when I was 15. It started with some nagging pain in my clavicle, which was fractured in the crash. I would experience tolerable aches about once every couple of months. It eventually spread to every part of my body, as it is now! I am 43 years old, and my pain went from not needing pain meds to ingesting 40mgs of oxycontin daily. I began with tylenol and gradually took something stronger every few years.

    I now suffer with irritable bowel d. and migraines, multiple chemical sens. fibro fog, myofascial pain syndrome, Temporalmandibular disease, ulcers, acid reflux, chronic fatigue...etc...the list goes on. These did not all come about at once, they were gradual symptoms that I and many other sufferers of fibromyalgia experience over the years. Some may develop these symptoms in a shorter period of time as others might.

    I have communicated with hundreds of fibromites over the years who all have spoken of having more intense feelings over time. I also had periods of non-pain for longer periods of time in between flares in the past, and no longer have a pain-free day ever. Oh, and I can't forget the spasms that I now frequently experience not only during the day, but while I'm asleep. ( especially in my calves )ouch!!!

    Tender hugs,
  9. kadywill

    kadywill New Member

    I took Tylenol in the 70's, Motrin in the 80's, Vicodin and Ultram in the 90's and Oxy, Mobic, steroids and Soma pain cannot be relieved by anything less now. THIS, my dears, is progressive in anyone's words. I'd fight anyone who tries to tell me otherwise. I worked through the fatigue until November of this year. MANY days, I am bedbound.....this, too, is progressive; I used to be able to work and raise kids and LIVE and just crash on my days off. I am only 47 years old and I feel much older now.
  10. Dara

    Dara New Member

    company for my private policy has said the same thing regarding my claim. They have received lots of medical documentation from four different doctors, so now there excuse for not giving me benefits is that I've had FM for a very long time and there's no reason why I can't keep working since I worked before... What is it they don't get? I hate hate insurance companies, I think they are the lowest of the low. But, Yes, I certainly know in my case that the FM is very progressive.

  11. tansy

    tansy New Member

    When a have a major flare-up which always go on a long time my disablity becomes more severe.. Whilst I may improve a little over time I never get back to where I was previously.

    Although not been diagnosed as having FM I have all the symptoms on top of those more typical of CFS.

    I used to be told it wasn't progressive and that it would all go away in it's own time. So far this has not happened but the subsequent physical disablity is now so severe no one argues about that. But docs still cannot grasp the other invisable impairments which effect my ability to cope generally and my quality of life.

    If this post gets lots of similar responses then that's a good point from which to make this clear to the medical profession. Perhaps then they will take more care of their patients right from the start.


  12. spresley

    spresley New Member

    I hate to hear that many FMS patients see this condition as progressive. I was diagnosed 2 yrs ago, and one thing
    that kept going is that it isn't supposed to be progressive. I work 35 hrs a week as a secretary, married with 2 kids (12 & 4) and I will turn 31 this year. I won't argue that I have a harder time bouncing back from a flare-up, but I feel in my case, some of this was inflicted. What I mean is because I wasn't exercising, eating right or trying to eliminate stress. In turn, my body suffered. I hope that the case is some people may progress into worse levels than others depending on how you try to manage it. I have done alot of research and hope that someday soon, by eating right, exercising and taking care of myself first, before anyone else, that I might be able to reserve some quality of life.
  13. Aisling13

    Aisling13 New Member

    they would know that this is progressive. I first wondered if I had it then I thought I had it until it took over my life and I had to get a DX for my own piece of mind. I just went back to school for a nursing degree because I couldn't do my old job which I had a degee for. Now I wonder if I will ever be able to really be productive the way I once was. I just had two days off. The difference is immense.! If Fm doesn't get you all the other things that go with it will take over. I spent three months in the bathroom and lived on liquid until I found out now I have microscopic colitis.::snort:: Fake That??!!
  14. TNhayley

    TNhayley New Member

    I agree that it's semantics ... or doctor and health insurance double talk. Maybe because it doesn't kill us ... we're just the walking dead in many cases. It is a scary thought for those of us fairly new to this DD. You get a handle (you think) on one SX ... only to face more and more. And then to deal with the condescention of so many docs who say you are just underconditioned or overweight or whatever else they try and tell us to cover up their own lack of knowledge about our problems. Opps... didn't mean to start to vent. Anyway, I just wanted to say I feel the frustration of hearing this is not progressive too.
  15. lorgirls

    lorgirls New Member

    I too feel FM is progressive.I used to work and do so much more. My good days are getting less and less.I hate it when Dr.s say you just need exercise and to loose weight. My physical shape Im in now is a direct result of my fibro. I used to be in shape until the fibro got worse.My being overweight and out of shape didnt cause fibro,fibro caused it.Sometime I wish the docs had fibro so they would understand better. I get so upset. Everyday is an effort.How would they feel if it was work just to get going every day. My being only 36 dosnt mean I should feel well.
  16. anchor

    anchor Member

    Hi - I recently attended an information workshop on Fibromyalgia and this doctor stated that he believes it is progressive degeneration of the soft tissue around the joints (muscles, tendons, ligaments, etc).

    He went on to explain so much more about this Dx and all rang true for me . . . degeneration is exactly what I feel in my knees feel, for example.

    He had some great thoughts on treatment as well.

    Thanks, Anchor
  17. All I can say is BULL! This dd sure is progressive, it sure might not kill you, but it is sloooow torture and gets worse as the days pass by!