Discussion in 'Fibromyalgia Main Forum' started by TUDY, Apr 25, 2008.

  1. TUDY

    TUDY New Member

    The more I read on this board the more I see a difference in severity of everyones symptoms of FM.

    There are low level symptoms where people can still lead normal lives, working, socialising, exercising, engaging in sports, etc. despite being diagnosed as having FM.

    Then there are those who have limited abilities but still manage part time work, light exercise,etc.

    Finally there are those, like myself, who struggle to even walk, in constant pain which is severely worsened when I try to do the smallest of things like make my bed.

    It seems strange that there is such variation in severity of symptoms despite there being a common cause of the condition.

    I feel this leads to the confusion that some really have FM and others really dont.

    It also adds to my own frustration "Why am I not able to walk a dog when you can, yet we are both supposed to have FM"

    Surely there should be stricter guidelines for diagnosis in the medical field.

    Would this not make it easier to claim Disability Benefits?

    What do you think?
    [This Message was Edited on 04/25/2008]
  2. greatgran

    greatgran Member

    Tudy, I have so often thought the same thing. I don't have an answer but am waiting to see what others post.

    I guess I am envious of those that say they have FM but able to work full time wearing high heels , walking their dog and always looking glamorus, speaking of my neighbor.

    If she has FM then I have something fatal well thats the way I feel.

    Sorry, I am of no help but looking for help.

    Good Post,
  3. charlenef

    charlenef New Member

    im one of the not so lucky like you im in bed most of the time.
    i no longer drive shop or visit im guessing how you became sick might have something to do with it.
    i have had pain my whole life nothing to bad but each time i got injured i never healed right and i just added to the pain before
    i found out later i also have chronic myofascial body wide
  4. TUDY

    TUDY New Member

    My point exactly greatgran,

    I know someone with 'FM' WHO wears high 4" heels and uses crutches! I'm sorry but that takes the biscuit.

    Surely if your in pain and need crutches high heels are a killer! I know cos i've had to ditch my KITTEN HEELS cos they don't support my legs.
  5. munch1958

    munch1958 Member

    There is your answer!


    Lyme has 3 stages!

    Once you get to the last stage or stage 3 the bacteria is everywhere. There is NO STAGE 4. It's very difficult to get rid of then.

    Some people have stronger immune systems than others. Some people have different coinfections cluttering the picture.

  6. TUDY

    TUDY New Member

    My question was regarding the diagnosis of FM not LYME.

    If there were stricter guidelines there would be no confusion.

    I have FM not LYME regardless of the symptoms being somewhat similar.
  7. luvdogs

    luvdogs New Member

    I think you're right, and I've noticed a steady downward progression in myself. I used to be able to take short hikes! I used to cook up a storm. I used to clean the house. Yes I felt pain and fatigue, but I didn't feel the illness was controlling my life. Now, I can barely walk the dogs for a few minutes, but my legs and feet hurt like hell. The house is a catastrophe. I no longer like to cook, because it's too exhausting. I only work five hours a week (I used to work 22), and that's all I can do. I sometimes spend the whole day in bed. I have difficulty getting out of the car, or getting up off the floor. I have severe pain, esp. in my legs and feet. Doctors say the disease isn't progressive, but I'm starting to wonder. If it's not progressive, there must be distinctly different stages.
  8. Kae88

    Kae88 New Member

    I have talked with my Dr. soo many times about this.He has always said that he has never seen anybody have it as bad as I do.Now he has 1 other lady that is close to my severity,but her meds. work wonderful for her.

    He has said that everyone is so different and no one really knows how they for sure got this DD.It just effects some worse than others.

    I pray someday for a cure & then maybe we will have answers to all the questions, we do have.

    I,too,had to give my job up. I can't take the pain & fatigue it causes,plus everything else it does to us.

    This is not the person I was. I always took a shower, everyday I did my hair, cleaned my house,went to work, cooked, did laundry, went shopping, I'm sure just like all of you did, and now there are many days I can't do one of these things! I don't understand it!

    I went to a support group,when they had one in town here. Well, these ladies were much older than me,which is fine,but not even close to having it as severe as I do.

    One woman was complaining that her thumb hurt her!Can you believe this? Her Thumb!! I would be embarrassed to say such a thing!LOL! I didn't go back. They don't have it anymore either. I can't imagine,why.LOL!

    I'm sorry this is so long.I do agree that it is progressive.Mine sure has been over the years.

    Sorry Again!

    Hugs, Jodie

    [This Message was Edited on 04/26/2008]
    [This Message was Edited on 04/26/2008]
  9. BlairLaw

    BlairLaw New Member

    I am never at a truly constant level with FM, so I may not have it afterall. Some days I can function almost fully and then there are weeks at a time that I can barely function. Then there are days, I can't get out of bed!

    What level am I? If I am not at a certain level, do I not have FM. They only diagnosed me with this because they don't know what else to call it apparently. I don't mean to offend those who are completely debilitated staticly. But if they don't call it FM for me, then they just call me crazy.

    Also, Every Doc I have talked to says the EBV does not play any role at all. Yet everytime I turn around someone who has been tested for it who says they have FM, has severely elevated EBV titers.
  10. raven5000

    raven5000 New Member

    I was only dx about 9 months ago. And now that I know what the symptoms are, I have had it for 23yrs or so. Never enough to keep me from working or doing ordinary things, but enough to say..jeez...why does my hair hurt??? Is this a heart attack or just really bad gas??? lol..

    It wasn't until I couldn't walk or lift or do anything anymore that I was finally dx'd w/ it.

    For me, if what they say about trauma causing it is true, then maybe it has something to do with how traumatic your event was??? I was pushed down a huge flight of stone steps outside a pub in london by my Ex..that was when I started to get first signs of it.

    Other different trauma's seem now, to have made it worse..and finally, when my Dad was dying, and I was taking care of him here with hospice help for several months, is when a couple of months later I became so bad and got worse and worse and worse.

    Just a thought
  11. Janalynn

    Janalynn New Member

    I'm not sure I'd call it levels of FM. Like many other "conditions" people suffer at different levels of severity. Not everyone who has RA or Lupus has it exactly the same or can do the exact same things all the time.

    One of the characteristics of FM as I understand it (or that has been true in my life) is the simple fact that without notice it can become 'worse' without notice or reason - somedays I can be okay (never fully okay, but in comparison)

    Unfortunately some people have it "bad" - their symptoms are unmanageable. Who knows why. But like the other diseases, conditions, syndromes, not everyone feels the same or is 'hit' the same.

    BTW- I'm not sure about the connection w/the Thyroid for everyone, I've had all levels checked more than once and mine are always on the good end of normal.

    This whole FM thing is still a mystery - A rheumatologist I saw recently said "we're not going to forget about you" -there is so much research being done - for that I am thankful.
  12. luvdogs

    luvdogs New Member

    Your ex pushed you down a flight of stairs? Oh my. I am so sorry. I'm sure that was an event you will never forget. But it sounds like you're dealing with things pretty well. I've had so many traumatic events that it's all starting to blur in my head (nothing like being pushed down a flight of stairs, though). I'm just trying to survive and keep fighting.

    Was your ex arrested and punished appropriately? I hope so. I am so angry at him, and at other partners (I wanted to say "men," but I better not) who can be so cruel and unsupportive.

    Eventually things like that (my mother died too, and I had breast cancer) wear on you, and then of course, the disease progresses. The body and the mind can only take so much.
  13. momof471

    momof471 New Member

    fibro progressive. You know the saying, hindsight is 20/20. Well I can look back now and see that it was slowly building up and then my injury, really put me down.

    I have good days and bad days. Right now I'm scared with the severe problems in my feet, I'm having a hard time moving around.

    I do still try to do what I can and avoid compaining to those around me, who knows they might think I'm 'faking it'. I try to push myself, I have 4 girls who still need their Mom, so I do my best to try and be as normal as possible.

    I can't hold down a job, but I do volunteer at school one day a week, it makes me feel useful.

    Its hard not to judge, but we deal with people who judge us and I don't think we should judge others, maybe the person in heels does not have the foot problem and she likes pretty heels when she goes out. I know I'm a croc girl myself and couldn't imagine myself and heels, but others can be different.

    They don't agree on what causes this, much less anything a bout stages yet though. Hopefully we will get some answers in our lifetime!

    God Bless
  14. nina_and_me

    nina_and_me New Member

    Tudy, this is a good question.

    My personal story is that I began suffering severe PTSD, major depressive disorder, and panic disorder in the late 90's.

    In March/April 1999, I was diagnosed, for the second time im my life with momo. Months, years later, my energy level is very low and the fatigue is oppressive.

    In May 2000, I started dealing with the psychological issues that brought on the PTSD, and by mid-2003, I was doing much better psychologically and returned to work after over a year long LOA.

    By the spring of 04, I was at my doctor's office in agony. I thought I needed a wheelchair, and I was so incredibly tired that I thought I had mono again - the mono test was negative. My PCP diagnosed FM on that day, but ran lupus, RA, and several other tests.

    I went on Intermittent FMLA in the fall of 04, and if not for the ability that law gave me to take timae off, I would have been unemployed in 2004. I had an understanding boss, and we worked it out.

    By 2006, I was on my 4th boss in two years. He had NO comprehension of what this illness was doing to me, and I believe that it was partly because two other people in our dept had FM, but they "took guafensin and were fine".
    They were able to work, stand up for long periods, and they didn't have fibrofog or the fatigue. I understand the frustration.

    I left my job on disability in June 2006, and things are much better. I can be tired, like I am not, and it's okay, because I can sleep all day tomorrow. I can rest, cry through the pain, save what little energy I have for bill-paying and light housekeeping. A lady from the church helps with the housework, at no charge, every two or three weeks.

    I'm a complainer, and I wish I wasn't - I wish I could cheer people up, but I can only do that sometimes.

    very sleepy, probably not too coheent, nina
  15. marti_zavala

    marti_zavala Member

    Illnesses ebb and flow and also go in to remission.

    Doctors are not familiar with fibro and some of the pain responses are subjective. Some people have high pain threshold and others have lower pain threshold.

    Your genetics or diet or past environmental exposures may make your illness worse than your neighbors but it is still fibromyalgia.

  16. loldershaw

    loldershaw Member

    I think a better question is why would you think everyone would be the same? If you look at anyone with chronic illness or even acute illness - their bodies manifest the symptoms, degree of severity and effects differently in each individual.

    One child gets chicken pox with only a few pox, barely knows he is ill, and another is covered head to toe, with high fever and miserable. One person has rheumatoid arthritis and is crippled within a few years and another is hardly affected for a lifetime. Some people with MS have a very mild case for a lifetime....others progress rapidly being bedridden....and no treatment will change the outcome. It would be much more unlikely that FM manifest the same in everyone. I do not believe that has any bearing on the difficulty to get disability.

    What affects the issue of disability is the fact that no causitive agent has been found and there is no objective way to measure disability or anything about the disease for that matter.

    Mine started with a vengence and extremely severe for over a year, but I managed to work despite the misery.In fact managed to work another 5 years. My pain is much less now, however I can no longer work...can hardly take care of myself. Go figure.
  17. JaneSmith

    JaneSmith New Member

    I usually just observe daily but I have to put in my thoughts to this post:

    I've had FM for 41 years. I was dx in 1981 when it was called Fibrositis. (I thought I had MS). My recent doctor says I have severe FM. I starting reading all the books I could get a hold of at the time. (It didn't help) - but I sure got educated. I couldn't find a doctor who could help me. All they said was to exercise. For me, everyday is different. The pain is different everyday. Some-days I cry because the pain is so bad. Some-days I just live with the nagging aches. But I've never missed a day of work because of it and I raised 2 children and I clean my house and cook and have people over for special occasions.I've been know to put ice packs all over my body afterwards. I will not give up my life because of it. And my pain some-days are very severe and I don't know how I make it through the day and the pressures of work that I have. The exhaustion is terrible but I haven't stopped living and I haven't stopped wearing my high heels and I haven't stopped making myself look attractive. I'm 56 years old and I look like I'm in my 30's, I'm told. I feel on days that I'm 110 years old. I put up a good front and I don't complain. Everyone is different on how they handle the misery of this terrible illness. (Sometimes I can't move my neck, sometimes I can't walk the stairs, sometimes I can't type, sometimes, my low back hurts, sometimes my hips are killing me, sometimes I have such pains in my forehead that I feel like there is a knife in my head. Sometimes I feel like my entire body is being punched all at once. There are months at a time I sleep with a heating pad. And then sometimes, I'm good.......It's a very crazy illness and I hate it! My opinion, there are different degress but it doesn't mean we don't have FM.

    Warmest Regards,

  18. lil_angel1198

    lil_angel1198 New Member

    I hate feeling like I am being judged because I can do some things that others can't when we both have FM.

    Like you, I have days when the pain is severe, I have a hard time walking or even getting out of bed. The house doesn't get cleaned as well.
    There are other days when I feel good and I do my hair and make up, and dress nice.

    For anyone else, My 3 sisters also have FM and each of us has different symptoms and severities of those symptoms.
    Does that mean that not all of us have FM? Or does it mean we all just respond differently to it?

  19. texasrose204

    texasrose204 New Member

    I am like most -- pain all the time it has progressed from when i was first dx 1 1/2 years ago I stopped working in oct 07 took medical leave, 12 weeks and was not able to return. I have always been a go getter. Now my go getter is broken and i am not the same person. Days i can't get out of bed. few days i feel little more normal then i usually overdo and end up in bed days after. but it feels good at the time to do stuff i usually can't. I lost most my friends like maybe they think i made this crap up??? don't know realized what kind of friends they truly are? 2 weeks ago my rhuem tells me i have sle lupus. Great like fm isn't enough he says fm is usually secondary to something. I have been fighting with my disablity through work hoping now with this extra dx i will help in getting some results. Not like i am happy to have lupus but i can't work am thankful for what i can do around house. Cobra is getting harder to pay so hopeful ! I think we are all different so the way are bodies react to sickness, stress, pain are all different . But as for me i know mine feels like it gets more painful and harder to walk. The severity of pain is so bad at times and meds don't touch it! Anyway hope everyone is well and thanks for the post Tudy!
  20. lillieblake

    lillieblake New Member

    I am leaning toward thyroid being part of the fibro pic also. I had been on synthroid since 1984, had my thyroid removed in 1990. Just last year I was switched from syntrhoid to armour and my health went downhill from then on. Turns out my body couldn't recognize the armour. I was put back on synthroid and am now almost up to the level I need, and feel halfway human.

    But I still ache with muscles, sharp pains, rubber band feelings, headaches, numbness, that are not part of the thyroid picture that I know of.

    Good luck with this DD.