Are you a FM LIAR too?

Discussion in 'Fibromyalgia Main Forum' started by debfee11, Jan 30, 2006.

  1. debfee11

    debfee11 New Member

    I have severe FM. I won't go into how crappy I feel but I am so sick and tired of people noy understanding FM or realizing just howq much pain I am in constantly. This includes family and friends.. SO I have now resorted to saying that I have LIME and now there is a bit more respect for the fact that I am a different person now. There is no one who gets the fact that I am so tired or that my brain is fogged up. Oh I guess I just want to know if anyone else feels like people think you are a hypochondriac unl;ess they here it's a disease that can be tested. Debness XXX
  2. kellyann

    kellyann New Member

    I know how you feel. Have you been tested for Lyme?
    Kellyann
  3. lolee

    lolee New Member

    I have never been put into that position, but I can understand how you would feel that way. I have been to the "edge" at times.

    It isn't a pretty view from there. I hop eit will get better for everyone and that we will get the support, encouragement and medical help that is so desperately needed.

    I sometimes wonder about how many other diseases that are now considered "mainstream" (for lack of a better word) were at one time dealt with like this also at one time, even PMS . . . . . .

    Who can think of others? I would be interested in knowing?

    In the meantime, hang in there, we are here for you. Truth rings free here for us.

    Love,

    Lolee
  4. lurkernomore

    lurkernomore New Member

    When first diagnosed, I shared what my DX was with anyone who asked how I was doing. But after noticing people, family, friends and church members slinking off and never asking me this again, I changed my answer. Now when I am asked that question, I lie and say "oh, I am fine and how are you?" It is wrong, I know that it is wrong to lie.

    As a result of this, now people are wondering why, if I am so fine, why I am still home all day, not out working and missing church as often as I do. So my lies have not helped me. But then, neither did the truth-it simply drove people to avoid me altogether. So really, I have no idea what the perfect solution might be.
  5. debfee11

    debfee11 New Member

    Yes I ahve been tested for Lyme but it came back neg. I am such a classic case of FM that I could be the Poster Child well, adult. How do your friends treat you and your smptoms? Debness XXX
  6. lurkernomore

    lurkernomore New Member

    There once was a time when diabetics were called fakers. As for epileptics, bless their hearts, they were often locked up in institutions and called crazy or shunned because their seizures were called "fits brought on by posession of the devil." It just goes to show that lack of education and awareness can cause even more pain, emotional pain and loss of quality of life. Someday fibromyalgia will be understood and validated. I only pray that this occurs in our lifetimes!
  7. lolee

    lolee New Member

    epilepsy AND diabetes!!!!!!!

    I can't wait to hear what else this group knows!!!

    Just goes to show ya' it's always something!!!!!!!

    Lolee
  8. gypsysoul

    gypsysoul New Member

    I am a Big Liar............I tell everyone I have arthritis really bad. In fact I have FM. But I also have arthritis. It's just an easier cop-out. No stares, no whispers, no............."But you look so good".
  9. kjfms

    kjfms Member

    ...I am not a liar but I am a downplayer (is that a word) of my diseases. I come from a family that believes if you "get up and stir around you will feel better". Well this is true for me-most of the time. I have my moments where I just want to say to "heck" with and give in completely. I am only speaking of myself and not anyone else.

    I guess I might be a little bit of a liar, though-I will say anything but FMS when I call in sick at work-usually that I have a "stomach flu" or a migraine, which is not really fibbing.

    I have thought about and have asked questions about SSDI, but that is really not an option for me. I have to work to support myself, I can't afford the 6 months of not working in order to qualify, if that makes any sense. I like to call my self "the little engine that hopes it can"...LOL :) I get up everyday-move like a ninety year old to the shower..ah..the hot water feel so good! Then I take my OTC pain reliever, Synthroid, vitamin C and E, and multivitamin-every 3 weeks I give myself a B-12 injection. I have started taking prescription Naprosyn 500 mg twice a day this past week to help with body pain and headaches.

    Sorry I got off topic, I get side tracked very easily...LOL

    So...yes I guess I am a FM liar to an extent. I just down play how I am feeling.

    Good question,

    Karen
  10. pepper

    pepper New Member

    I'm different! I have CFS and FM but tell everybody I have Fibromyalgia! It seems that most people I come into contact with have heard of FM and know something about it. CFS is still considered "psychosomatic". I even had someone say to me, "Isn't Chronic Fatigue Syndrome a psychosomatic illness?" Duh!

    So now I say that I have Fibromyalgia and people seem more understanding. Obviously my experiences are very different from others here.

    By the way, MS was in the same category as diabetes and epilepsy. Those poor people were dismissed as fakers and often locked up in institutions too.

    Some day our DD's will be recognized for what they are.

    Pepper
  11. Shannonsparkles

    Shannonsparkles New Member

    Me? Not really. I describe what I have, but don't give a name to it. If I'm talking to a professional person, like a like a doctor's secretary about wait times, I'll say, "I have a medical condition that makes me unable to sit for long periods of time." With random people, it's things like, "I'm not well." "I'm housebound due to a severe medical condition that makes me very weak." "I have a disease that impairs my cognitive ability, could you please repeat that?" I don't mimimise what I'm feeling, but if I use big words and speak in a level tone of voice, I usually don't get hassled.

    If some bright cookie asks WHAT medical condition I have, in the same no-nonsense voice I say, "Chronic Fatigue Syndrome" and pause as though daring them to doubt me. ;) Then, if they ask questions about it, or say something backward and wrong, I go into my proffesional mode as "Self-Appointed Representitive For All FM/CFS People Everywhere" and give a consise and respectful yet technically worded explanation of the causes of the disease, and answer any questons they have. The goal is to leave them informed and accepting. If I help one person to see that our disease is real, who knows how many of us that person will treat kinder because I took some time with them.

    If the person is outright rude or brainwashed by the bad press we've received, then I don't waste my energy on them. Just be nice, and get by them as quickly as possible. And maybe vent about it here. ;) They may be more willing to listen another day.

    If I really don't want to talk about it just then, I joke off the question and ask how THEY are. People LOVE to talk about themselves. ;) And believe me, when you're housebound, you want to listen.

    If I was out there in the community though, I don't know how I would handle it. People are incredibly cruel to you all. I can just hang up the phone on anybody I don't like, but you still have to be out there with them. Even your relatives. (((( )))) :(
    [This Message was Edited on 01/30/2006]
  12. jake123

    jake123 New Member

    I have actually caught my mother in law and my step daughter laughing about me "and my doctors" practically in front of my face. I told my husband about it and he brought it up with my MIL and my stepdaughter and said that's it-that's the end of it=never let me hear something like that again.
    I told my shrink and said I wasn't even speaking to them and he said I didn't have to, just show up for state occasions.
  13. hagardreams

    hagardreams New Member

    Boy do I understand this one. I am 45 and I ride the carts around the store when I shop, and get a lot of stares, and remarks because they dont understand that it hurts to walk too far.
    I have had to tell others that I have arthritis, and leave it at that. If they seem to want to listen, I will explain fibromyalgia as having the flu, and arthritis.
    Those people that make fun of us, or that try to downplay this disease, one day they will have to face the music. I truly believe that some how God will teach them a hard, a very hard lesson. Just like the nurses that accued me of being hooked on pain meds, and not really needing them. Oh if only they could live one day with the pain that I do. Between the diabetic neruopathy and the FM, I have days that I just dont see the point. They would never make it, never.
    It isn't worth our time letting them get to us, put it in Gods hands and pray for them.
    God bless all of us, Julie
  14. kellyann

    kellyann New Member

    I think most people get tired of me saying I'm sick. I was relieved to get a postive test for lyme, at least it is something that there is a test for and most people understand. I also tested postitive for epstein barr, chylmidia pneamonia( my spelling is awful today) cmv virus and mycroplasma. Which I think is all fairly common with FM and CFS. I am taking tons of antibotics, amoxicillin and ciprofloxacin. I couldn't take doxycycline as it upset my stomach too bad. I am supposed to start famvir, but I am too sick to drive myself to the doctor to get the prescription. So fun. My FM doctor prescribed it for me and I can't afford to get it unless I go try to get a prescription through my regular doctor because he is on my insurance and the specialist I see for my FM and CFS is not. Sorry if this doesn't make sense, I brain is real foggy today. Since I have been on the antibiotics the pain has gotten nearly unbearable. It used to be mostly in my joints, now it is all over and burns. My doctor says this is the die off reaction from the lyme. I used to tell people I had artritis a lot, just so I wouldn't have to try and explain.
    Take Care!
    Kellann
  15. TeaBisqit

    TeaBisqit Member

    She tells everyone it's Advanced Lyme. My Lyme test was borderline, but I never had a full positive. I was bit by ticks as a child, so I really don't know. I have classic Lyme arthritis. But, that wasn't how my illness started, so I'm skeptical as to if that's it. Plus, I took tons of different antibiotics and they didn't fix me.

    None of my relatives are sympathetic at all. They do not believe I'm sick. Even my cousin, who is only nine months older than me, she thinks I didn't go to her wedding out of choice. To this day she still thinks I'm not sick. At the time of her wedding, I couldn't even leave the house. I was way too ill.

    Everyone seems to think that because I do not look sick beyond the weight gain that if I join Weight Watchers that will fix all my problems. They have all forgotten what an exercise-aholic I used to be. Before I got sick, you couldn't get me out of the gym. I used to be very active. Anything I was doing, I never wanted to stop. I used to swim hours and hours longer than everyone else around me. They'd all be ready for dinner or whatever and I'd stay in the pool. I was the person who could be relied on for emergencies. I was the stable one. And as soon as I got sick, it was like, "Oh, you've had a breakdown. Have some antidepressents, go to a shrink, go to Weight Watchers, get your act together." I wish it was that simple.

    I used to pray my blood work would show something, anything just to prove to these people that I am seriously ill. I don't think it's fair that no matter how severe my symptoms, the blood work always comes back with nothing the doctors consider severe. I did have terribly high EBV and HHV6 in my blood work. The doctors didn't seem to care. Then when I showed up with really high thyroid antibodies and was diagnosed with Hashimoto's, the doctors still didn't seem to think that was a big deal. Nothing where they would say, "Yes, you are very ill."

    The only time I got any true understanding and compassion was once when I had to apply for food stamps, since the disease has me completely poverty stricken. My case worker at Welfare was so sympathetic and understanding that I just wanted to cry. She said that she would personally rather be dead than have this disease. She really understood how severe it was. And she has been the only person I've ever encountered who didn't have it that understood.

    I don't believe we will ever have any validity with people until the name of the illness is changed once and for all to something that sounds real. And it's been too many years already, the name should have been changed twenty years ago.
  16. leomonkey

    leomonkey Member

    I found that due to my own issues with being so ill, I down played my illness for years (I have CFS).

    I now tell people in a matter-of-fact way the way my life is.

    What is most concerning is the people I have known for years who just will not see it... perhaps they block it because it is too horrible to fully realise... how someone so full of life is now mostly bedbound. I shared another's story to these friends and they understood the severity of the condition yet several of them continue to suggest activities that I haven't had the capacity to do in years.


    I appreciated all the people that shared... so much of it I could relate to... I have a web site I am creating to help increase the awareness of CFS (CFIDS). I would love to quote some of your responses. If you would be open to that, please go to this website www.clik.to/CFIDS and send me an email! TIME TO SPREAD THE WORD
  17. lease79

    lease79 New Member

    I tell people that I have Fibro, but don't mention the Chronic Fatigue. It seems that if I say 'Fibro' that most people don't have a clue what I am on about, so I explain that it is like arthritis. But if I say Chronic Fatigue, I'm more likely to get the eye rolls & 'knowing' looks :(
  18. puggymom

    puggymom New Member

    My family is very understanding, but outside of family, I have an "arthitic condition". When I call in sick, I don't say what's wrong, just that I don't feel well and I'm taking a sick day. By law, you don't have to say why you are sick. Once my boss, who is a good guy, asked what was wrong, but out of concern not nosiness, and I said my back was bothering me, he was very sympathetic as he has back problems.
  19. dancingstar

    dancingstar New Member

    No, I don't lie. I tell it like it is because I want so badly to do so much, and my body poops out on me, and I have to stop everything. I'm often embarrassed that I can't keep up with my friends and bummed that I collapse early or sometimes am not able to get up at all, like I'm 30 years older than I am. I'm glad there's some reason for this behaviour.
  20. Sheila1366

    Sheila1366 New Member

    I mostly get that treatment from my mom,dad,brother and sister.I grew up feeling bad all the time so I am the family hypochodriac.

    My daughter has FM/CFS.My mother asks how she is doing all the time but never asks how I feel.The other day I had to wear my wrist brace.My dad asked what was wrong mom just acted as if it wasn't there.

    As far as people asking.I just don't talk about it anymore.All the people that need to already now.I just grin and bare it.Even if I am gritting my teeth at the same time.

    Sheila