Why is there such a big disconnect?

Discussion in 'Fibromyalgia Main Forum' started by romanshopper, Jul 24, 2006.

  1. romanshopper

    romanshopper New Member

    Why is there such a big disconnect in the level of pain that I read expressed on this board, and torture that I know my sister and I both have with fibro, and the medical articles about it?

    I know it can be different for everyone, but at this point I find it hard to believe that people work and lead normal lives with this disease, and that it can be 'managed with nonprescription' pain medications and diet and lifestyle changes like so many of these articles I read.

    See - that is what I don't get about this disease. As bad as it is for my sister and me - and my mother before she died - I just don't GET that some doctors 'don't believe in it' or that THIS is JUST a LIFESTYLE problem.

    Maybe I am just ranting, but do you guys know what I mean? JEEZ

    If you google fibromyalgia - there ya go. 100 gaurenteed cures. Must not be a big deal to have it - it is SO OBVIOUSLY easy to cure. UGGGGGGGGG
  2. findmind

    findmind New Member

    It's all relative my dear...ooops, didn't mean that as a pun, with both you, your sis and mom having fM!

    What I mean is, we are all so individual as to how much pain we can endure and/or ignore.

    I'm so sorry you and sis are having a terrible time of it.

    Why don't you just go to the national FM sites and this site, and forget all the others that often are only trying to sell a product.

    proHealth has especially formulated products that really work, for very reasonable prices, if you need some.

    The guifenisen therapy has many advocates that claim it helps them enormously; it is in the store here, too.

    Yes, there's a disconnect about any disease that doesn't have a cheap lab test to prove it; you ever watch medical mysteries on tv?

    I know what you mean, dear one, and I'm sorry it is this way right now; however, I do believe research is going in the right direction(s) now, and answers are coming soon, ok?

    Hang in there, There's always hope!
    findmind
  3. Marta608

    Marta608 Member

    Frustrating, isn't it? I feel the same way when I read about people here working, playing, traveling, eating what they want, drinking what they want - living pretty normal lives with CFS - while I stagger around ignoring my carpeting and hoping to at least get to the grocery store this week. It's a matter of degree, I guess.

    When you really think about it it's in-our-face proof that even those who have the illness to a lesser degree cannot or do not imagine those who are even more sick. No wonder the general public doesn't get it.

    As for "cures", somebody's always going to try to make money off of those less fortuante.

    Gosh. I guess I need to go back to bed and begin this day again...

    Marta

    I actually did that and now want to add that I know there are many people more sick than I am, too.
    [This Message was Edited on 07/25/2006]
  4. pammy52

    pammy52 New Member

    I went thru my share of nonbelieving Drs. in the early years.
    Now I have a good PCP who has worked with me for the past 4 yrs to find what works for me.
    I have recently started seeing a DR. who works at a clinic that deals with chronic illnesses and although I am doing my best to follow a dietary plan and recommended supplements, I am seeing little positive impact.

    I am one of those who works...but I far from live a normal lifestyle.
    My nonworking hours are mostly spent in bed. I rarely do anything with family and friends and if I do, I know that I will pay dearly for a few hours of fun.
    My house is a disaster.

    Even the 'good' docs I have now encourage me to keep working since they feel staying home will lead to more inactivity and increase my symptoms.

    I am home today because the office I had to work in yesterday had AC that was so cold that I became physically ill and ended up leaving an hour early.
    This triggered major pain and I barely slept last night and am hurting at an 8-9 on the pain scale.

    My life has changed dramatically over the past 4 yrs. and I do not see how to stop working or how to go on the way I am.

    I totally get your frustration!!

    Pammy
  5. tandy

    tandy New Member


    100%


    I wonder everyday if I've been mis-DX with Fibro.
    and that really,.... I have some horrible terminal illness.
    I know it sounds negative or pessimistic on my part.

    But I have so much pain somedays that I'm finding it very hard to believe that I have FM.
    This illness is thought of by most as a "nothing' disease
    and for me its HUGE !!!
    My life is nowhere near what it use to be 5 yrs ago.

    Most days my pain levels are 7-10.
    I have'nt experienced nothing below a 6 in yrs!!!
    not even WITH meds.
    (course I have a anti-narcotic Dr) uuuuggghhhh is right.
    sorry to say it but if I could buy pain relief on the streets I would.
    Desperate??? yea I am.

    Great topic BTW.
    Thanks Romanshopper~


  6. pearls

    pearls New Member

    I thought I had a terminal illness too. I taught school for two and a half years of pure Hell before I retired. I would have done it sooner, but it would have cost a lot more than it did when I finally retired. As it was, my lifetime income will be much less than had I stayed for thirty years instead of 27. I am able to function because, for one thing, I'm not working anymore.

    I just wrote in another post that compared to what I used to feel, I feel wonderful - by comparison - I need to emphasize. I don't feel wonderful compared to everyone else in the world. Everything I do has to be thought of in terms of this disease. If I travel anywhere, I'm wiped out for awhile. My sleep is disrupted, and we all know what that does or us! If I have guests, I'm wiped out for days or even weeks, yet I love to see my family - well, most of them, anyway.

    When I first came down with this (at least when the big, I'm-sick-and-it-won't-go-away thing hit me), I was so terribly sick. When I went to bed at night, I'd lay there, not able to breathe (it was my chest pain, apparently caused by trigger points in my back muscles). My skin felt like it was on fire, and my feet sweat profusely and with a lot of odor. My chest was killing me. I'm going to stop my list now in fear this will turn into a book.

    Also, I found several doctors who made light of my fibromyalgia. Two of them wanted to send me to psychaiatrists on my first visit. A doctor in the emergency room wanted to argue with me about some forgotten point about fibromyaglia. My internist later said I was right aout that. You need to find doctors who will take you seriously.

    You are not alone. We are not all functioning well.
  7. StephieBee

    StephieBee New Member

    On this one. I too work. I got SSDI at the age of 21 and was on it for 3 years. I have learned that at this age, I must find a way to work. I am lucky to have a doctor that understands and helps me. When I first went off of SSDI, I was having somewhat of a "remission" Now I have NEVER been totally pain-free since this DD struck my life, but I was "functioning" on a higher level than the prior years so I got a job. Ive held this job since April of 2005, full time. During this time I had a huge flare up, and I stuggled through it, taking days off and some days barely making it into work. My rheumy helps me alot. Without him I would be bedridden. My non work hours are spend bed-ridden like Pammy said. I lead far from a normal life outside of work. I somehow have to come to grips with the fact that I got this DD at an early age and I will have to live with it for the rest of my life.

    I do think it is a combination between the severity of they condition, one's pain tolerance, if one is being treated effectivly, and also one's mind.

    Stephanie
  8. pammy52

    pammy52 New Member

    I am sorry that you have been hit with this illness in such a big way at such a young age.

    I have been dealing with FMS for over 30 yrs..
    25 yrs ago was the first time someone gave me an inkling that I was dealing with an elusive and possibly debilitating illness.

    During raising my children I had many bouts (which I now know were flares) of miserable pain and fatigue.
    I pushed myself all the time to do what had to be done for kids, marriage and work.

    The past 10 yrs have been a downward slide in terms of pain and fatigue and the past 3 have pretty much been a chronic flare.

    I often feel overwhelmed at what my life is all about so to hear you too are simply existing outside of your working hours makes me sad for you but comforted by knowing someone else really gets what I am living.

    Hugs, Pammy


  9. lovethesun

    lovethesun New Member

    I have severe fibro and I take morphine and neurontin among other things.I can funtion a little.I think my meds have controlled the pain as much as they are going o.It's like being on a boat that's afloat but you don't want to rock it.linda
  10. StephieBee

    StephieBee New Member

    It is hard being so young. When I was first dx'd, I was very bitter and angry. Over the years I have learned that I could have easily been dealt a much worse hand of cards than I recieved. I can now just try to be thankful that this DD is not as bad as alot others out there.

    Take Care,
    Stephanie
  11. onlythestrong

    onlythestrong New Member

    I really wish I didn't,but I refuse to let this DD win.And the only meds I take for pain are ibuprofin everything else makes me sick and I don't have a doctor who knows much about fibro,I live in the middle of never,never land so I've no choice.
    I will NOT let this win!!!
    Hugs at you,
    Mary
  12. BlueSky555

    BlueSky555 New Member

    Hi romanshopper,

    I'm sorry you're having to deal with the tarsal tunnel and also the FM. I can relate to your pain, somewhat, as I have chronic low back pain along with FM and there is NO way I could even function here at home without the pain medication. Believe me, I have tried.

    I was taking the med prior to being dx with the FM but who knows how long I've had the FM? It's strange but I had just read about tarsal tunnel on the internet when my heel began hurting. I had an injection, but of course that didn't last long and it still continues to be painful when I first get up and some during the day. I have no idea what it is but don't think it's the tarsal tunnel, but then, I'm not a Dr.

    I wish you and your sister the best.

    BlueSky555
  13. Amarie3

    Amarie3 New Member

    I did some research on the origins and history of fibro and it seems that it used to be called "articulating rheumatism" in the early medical journal citings. Apparently it was a disease that was only dehabilitating to the wealthy who became 'sickly'. The lower classes who had fibro pain couldn't afford doctors and had to keep going to make a living or keep up their households. I'm speaking of the 1700's thru the industrial revolution here.

    Women's work of cooking, canning, baking, laundry and cleaning before the advent of electrical appliances involved quite a bit of physical effort every day. These women had no choice but to do the work, even if they were in pain. They did have helps in the form of tonics and syrups, patent medicines that often adressed 'female complaints' and contained opiates and alcohol. But they still had to walk most places, climb stairs, wring out laundry, chop wood, lug water and carry heavy pots. This may explain why there has been an explosion of fibro in the past 50 years or so.

    We do very little physical exercise unless we budget the time to do it. We all have cars, washers, dryers, central heating and hot water heaters. We seldom walk farther than a turn around the grocery store or mall. Yet most of us have found that we get better sleep and feel better with some form of regular gentle exercise. When it was determined that I had fibro as well as diabetes I added the swimming of laps in a pool to my routine. When our budget problems forced me to quit the local pool last year my fibro symptoms increased respectively. I'm back in the pool again and hurting lots as I rebuild my stamina, but I'm sleeping better.

    IMHO gentle exercise helps with coping with fibro. We're going to be in pain anyway, but at least with exercise we have the benefits of increased flexibility, healthier circulation and better rest. Hope this helps someone.
  14. jole

    jole Member

    and have had FM since childhood, just not diagnosed. Working is hell. Like the others, I am in bed by 6 in the evening and up at 6 a.m. for work. I have no life other than work and pain.

    But the stress of it all finally caught me, and I recently quit working Wednesdays. Did it help?? No, it did not. I sleep most of Wednesday, as I do on weekends, just to get the rest I need. The only difference I see is a lessening in the stress level I have to endure. The pain is just as great.

    If it weren't for antidepressants, pain meds, etc. I would be in bed constantly. My life has very little pleasure, but without the work we would have no insurance and I work for that. We also need the money, so close to retirement and nothing back, but I would gladly give up the money to stay home and try to heal if it weren't for the insurance.

    I miss work often, and don't know how long they will let me continue. I would rather be home with my husband who understands than at work with the unbelievers who think I just want time off. I can't walk without hanging onto walls and furniture, shake badly at times, my voice is "gravely sounding" from pain, muscle spasms constantly, and trouble eating because the food won't go down at times, plus problems with my bowels and kidneys.

    No it is not easy. I have had to go to the restroom at work more than once to cry because of the pain and fatigue. I'm sorry your life is so difficult, and I am fighting as hard as I can to not become homebound, but I feel it coming. I know where you're coming from, and I honestly think some of us will be where you're at very soon.

    Others will never be there, and I think we need to say "Thank God". The fewer, the better. But doctors to need to understand there are different degrees of fibro and stop lumping everyone together.

    Friends - Jole
  15. pammy52

    pammy52 New Member

    I agree with alot of what you posted but I do have to say that up until last Oct.,my work was very physically demanding.
    On my feet,walking,lifting, moving around all day.
    I also took care of a family etc., including having grandchildren to take care of.
    I did it because it was what had to be done and because I refused to give into how lousy I was feeling.

    I was always a very active person.
    Hiking,softball league in my late 20s early 30s,bowling,roller skating etc..
    One of those moms that all the neighborhood kids wanted to come out and play.

    Over time I just struggled more and more to get thru a work day.
    Outside of work, just getting grocery shopping done is exhausting.
    I was prescribed aqua tx this summer but had to quit because I could not take the class and then go to work after...too sore and too tired.

    I work in a physical therapy dept. and the PTs are very aware of the need to pick and choose what you save your energy for with FMS.
    I do know the rare times I have been able to take a few days off other than weekends I find a bit more energy.
    Unfortunately I rarely accrue enough vacation time since I have to use days here and there for Dr. appts. as well as days I just can't make it to work.

    I know with time off I could focus on building my strength and stamina thru resting as needed and swimming or walking.

    For now I have to do my best to muck thru by eating as healthy as I can, taking supplements and a number of meds in order to keep working for a roof over my head.
    I just pray every day that I can keep up the routine enough to get by.

    Pammy


  16. cjcookie

    cjcookie New Member

    we can ignore issue". I think it's more of a level of severity thing. Just like MS and other diseases, there are differnt levels and types. I know several people with MS. At one extreme, one is in a wheelchair and there is another that has a flare from time to time with pain in her feet. I think that's what it's like with us. If a person can work 40 hours a week, they probably don't have as severe a case as you or the others that can't work. Some are lucky and can control their problems with over the counter meds and diet and others take 12 medications. Everyone is different.
  17. Lolalee

    Lolalee New Member

    My sister has had Lupus for almost 20 years and has worked the entire time. It has been very difficult at times, but she has learned how to manage her illness and is able to work. My friend's brother has Lupus and and has not been able to work since he got sick 15 years ago. He can barely walk and is in and out of the hospital. Even his speech has been affected.

    I agree that it is a matter of level of severity. And that makes it very difficult for those of us who are very ill. A friend called me a couple of days ago and left a msg on my phone recorder about a product that I must try because she read a testimony about it helping someone with Fibro. Right now I am in bed most of the day and seriously doubt that a supplement is going to make me well. But, oh how do I tell my well-meaning friend that I don't want to try this product. I feel like "chicken little" because I've put off calling her.

    Yes, I too have often wondered if I have some horrible disease that is not FMS or CFIDS.

    Lolalee
  18. pammy52

    pammy52 New Member

    who have info for us about the new supplement they saw advertised or if you would just eat a better diet or go to the gym or...........

    It is frustrating...some really care and are frustrated for us and others just have no concept of what this illness is really about.

    I know because those around me have seen my decline over the years, they assume I am just not trying hard enough to get well or that I am somehow using my illness to not do things.
    Good grief...if they only knew my panic every day of just getting thru the work day because I don't know of any other way to keep things afloat.
    And they don't see my sadness and frustration when I am lying in bed or in my recliner for most of the time I am not at work.

    There are several questions that I dread when at work.
    The ever popular..how are you and what did you do this weekend or did you have a good evening last night?

    Pammy