Did anyone else have trouble being diagnoised?

Discussion in 'Fibromyalgia Main Forum' started by jenni_w7, Oct 14, 2008.

  1. jenni_w7

    jenni_w7 New Member

    As a child i suffered from CFS this seemed to get a whole lot better when i was a teenager and and my early twenties. When i hit 25/26 years old i started to suffer from anxiety and depression problems, and for the last two years chronic fatigue, headaches and achy joints and body. some days i can hardly get out of bed. My doctors said it could be FM but is really reluctant to give a commit to a diagnoisis of it. I'm at my wits end, i feel so rough and just want to know what's causing it so i can start coming to terms with it and research what could help me.

    Did anyone else have difficulty being taken seriously and being diagnoised? Any advise? I'm at my wit's end, i keep breaking down in tears because i just don't know what to do with myself.

  2. WhoSaid

    WhoSaid New Member

    I am even more sick and tired of being called lazy. Being told it's all in my head. Being told that I just need to take anti depres meds.
    Finally a month ago a doctor finally said "I think you might have FM" and gave me Lyrica for it.
    The same for the cronic fatigue issue. They keep giving me thyroid medication that does absolutely nothing. They look at the blood test and say everything is ok. NO IT ISN'T!!
    I still am in the vicious cycle of over do it ... crash ... get to feeling better then ... over do it. Well, you get the idea.
    If nothing else at least you know that you aren't the only one going thru it.
  3. cyndeebee

    cyndeebee New Member

    I, too, am recently diagnosed. I've been fatigued and sore, felt like I always had the flu for about the past year. I've been sent for physio (which didn't help), had X-rays, blood tests, heart monitor...
    Finally my family doctor said "Stand up," and he proceeded to do the pain points test...
    Finally a diagnosis. I had no idea about what FM was until he sent me home with literature about it, told me to go on the Internet.
    There's a bit of relief, knowing I'm neither crazy or dying...
    But what I notice is that when I'm having my good days, well-intentioned friends will think I'm recovering. It seems to reinforce their idea that there's really nothing wrong with me.
    What I think is that we all need to be assertive when talking to doctors, family, friends, employers...
    You know your body. You know what you're feeling emotionally and physically. If your doctor won't listen to you, switch doctors.
    As far as family, friends, etc., I think the key is to stay calm and pleasant, but assertively tell them "This is how I'm feeling...and thanks for your input." And then e-mail them some literature about your illness.
    At some point, I think we have to stop worrying about how others react and respond, and take care of ourselves...no outside distractions. For me, the key is staying optimistic and listening to my body. When I'm feeling sore and fatigued, I stop what I'm doing and I rest. I haven't given up my goals and dreams...Instead I've altered them to suit a more restricted lifestyle.
    I know it's hard to constantly listen to people who doubt or worse, treat you like you're looking for an excuse or something to be lazy, but put it on the back burner. We may be limited in what we can do, but I think we have to focus on what we can still do (and maybe do better), we have to become a bit more self-absorbed and self-loving/caring, and we have to tap into resources such as this where we do find people who understand, accept what you're going through, and give you the support you need.
    Wishing you the best.
    Put your feet up. Relax. Do something nice for yourself...

    One of the most important things people can do for themselves is "self care" and we're entitled to do just that.

    Maybe this disorder is the Universe's way of saying "Slow down, child. You've worked hard enough with your body. Discover new restful pursuits...and know that you have my blessing."
  4. greatgran

    greatgran Member

    I spent about 3 to 4 years trying to get a Dx other than anxiety/depression. Then was finally Dx with CFS later FM.

    Oh, how I can relate to you breaking down, I always thought if I just knew what was wrong then I could deal with it.

    Well, got my Dx but go into the "doubting mode" every time I crash. I never have a feel good day, some are just better than others.

    I had luck with a D.O. doctor who listened then sent me to a rheumy. The D.O. was more helpful than the rheumy, the rheumy told me to go home exercise and take tylenol. What a joke. The D.O. was the one that came up with CFS but admitted he didn't know what to do for me but has been willing to work with me and try different things, which I haven't found any that worked other than xanax.

    The only Rx med I am taking is Xanax, I feel I could use an AD and my anxiety/depression is so bad but can't tolerate them.

    I do wish you luck, but for me I have found my family D.O. to be the most helpful,maybe because he knows me.

    For me the depression/anxiety is worse than this horrible disease and I can't seem to find anything that works.

    Just keep trying and I do hope you will find an answer.

    Sorry, I'm of no help but sure can relate to what you are going through.

    God Bless,

  5. Engel

    Engel New Member

    It took YEARS and many many DRs
  6. tpilgrim

    tpilgrim New Member

    I have constant headaches all the time but doctors can't find a problem. I like you are not taken seriously. Doctors think I'm a whiner. I aslo suffer from anxiety and depression, mainly becasue of the headaches.

    The headaches are with me 24/7.
  7. EttaUK

    EttaUK New Member

    Yes, I did, and still feel only have the vaguest diagnosis. For ages I kept leaving the doctors in tears but I have got better at controlling it over time so that am at least able to speak clearly!

    I have come to accept that medical knowledge is not advanced enough yet to give a clear diagnosis. My doctor told me it is a bit like the autism spectrum - or a venn diagram, or a soup! Lots of symptoms floating around and as they group together they might come under one term. Then they might change and be something else. They have told me I have undifferentiated auto immune disease because although I have one confirmed auto immune symptom, it does not as yet tick the boxes for a particular disease.

    My rheumatologist also said that they simply don't know or understand conditions like FM and CFS, but that he feels they may have an auto immune cause so that is why they overlap with symptoms from other conditions.

    It is really frustrating not being able to tell people what you have in a clear way, I know, but on the bright side sometimes a diagnosis carries with it a prognosis you might not want.

    Make sure you tell the doctor how things are, and that you need to know where to look for more info.

    don't give up hope of another recovery or big improvement, it does happen for people. So whats their secret i wonder?

    don't know if any of this helps at all. Probably not, but good luck!
  8. Esperanza25

    Esperanza25 New Member

    but I think everyone else knows how frustrating it is to go to the doctor to be told that is all in your head...I saw a therapist, psychologist, and a psychiatrist until one day I was referred to an oncologist for a tumor that I have on right pelvic bone because I thought that the tumor was causing my pain but the oncologist said that it was fibromyalgia so my primary doctor started believing that my pain was real I was sent to a pain management class where they taught me that I will live with the pain for the rest of my life and how deal with it. So I was told to pace my self and do slow exercise that swimming is the best exercise for people with fibromyalgia. So don't worry we all go through the same thing. Just be patient and continue to look for a primary doctor who is compassionate and understands fibromyalgia.

    Good luck. It took me a while to get an understanding doctor. :)

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