recognition, and awareness

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by wiggo, Nov 29, 2012.

  1. wiggo

    wiggo New Member

    I am in a relationship, with a lady who has, many symptoms of Fibromyalgia. She does have good days, and bad days, and try`s desperately, to keep active, but always, eventually brakes down. Now the doctors are slow to diagnose something, that they do not, clearly understand. My girl, has had tests for practically everything they thought, her pain, fatigue etc, could be the result of. And found nothing, apart from the fact, that she`s double jointed?!! She is unable to work for very long without pain, and so is unable to hold down a job. She want`s to work, but is on sickness benefit at the moment. To me, it is obvious, she needs help. The benefits people, want her to go for a medical. They will examine her, as other doctors have, and once again, find nothing wrong. But, she is still in pain, and some days, is unable to get out of bed. The problem "there" is, if they do not see a problem that they recognize, or accept as fact, they will sign her off, and leave her with no income at all, and thus, expect her to find a job, and earn a living, as other`s do. The only problem being, is that she is not like other people. She is unwell. Does any one know a way around this problem? Is there anyone who can help? I am not sure, that she can take much more.
  2. rosemarie

    rosemarie Member

    I understand the pain is horrilabe and it is never ending. I have had tests and as you say every thing is normal. Well from some one who feels like death warmed over I am so sorry that she is going thru this. I am so sorry your friend has this DD and I wish that I could tell you where to find a doctor that would /could help her but I have not found one myself.

    I don't know what to say to you or where she can get help. I wish I could be of more help. I understand how horrilabe fibromylaigia is and it is horriable to live with. But each of us are unique in how this disease affects us. I wish I could help you better and give you some real help.
    You and your friend are in my prayers I Hope that she can find a doctor that can help her.
    HUGS.
    Rosemarie
  3. IanH

    IanH Active Member

    She must ask for a referral to a rheumatologist. Even if she does not have fibromyalgia the rheumatologist is most likely to test her for it if her pain shows no signs in standard tests. A rheumatologist is the most likely specialist to give a diagnosis. If she has ME/CFS then she needs to see a neurologist but the likelihood of a diagnosis is low.

    This can be very frustrating but insistence on a specialist referral usually works.
  4. Mikie

    Mikie Moderator

    Can she file for SS disability? If so, contact the best SSD atty. in your area. He or she will refer her to a doc who will document her condition and get some help for her. Good luck.

    Yes, rheumies are the best for diagnosing but not necessarily the best to treat. Check to see whether there is a doc specializing in our illnesses in your area.

    Love, Mikie
  5. Kittyweird

    Kittyweird New Member

    Most of us with this illness have encountered some version of your friend's problem. The first doc I saw after becoming so ill told me that I needed to see a psychiatrist. It took changing doctors twice for one to finally diagnose fibromyalgia. Actually though, it was a chiropractor that first diagnosed me. The diagnosis which seemed to matter most to the powers that be came from a rheumatologist. With this illness or any other, you have to be very proactive & demanding of the medical profession. Ask for, no demand, a referral to a specialist!
    Also, I found that it helps to print out informative articles like those available on the Pro Health web site. Take those with you to doctors appointments, you can also make them available to her employers, when she gets a diagnosis. It also helps to have someone to go with to the Doctor's visits. A back up person can ask the questions that the ill person may forget. A back up person can offer support & give evidence of illness. I have found that a doctor is less likely to treat me as a hypochondriac if my husband is with me.
    Although this may not help with employment issues, make sure that your friend checks out the products available from Pro Health. Pro Health products have not cured me, but they have made my life more livable.
    Also changing how she eats can help. Cut out all fake fats, fake sugars, high fructose corn syrup. Eat fresh as much as possible. I got rid of all non stick cookware. Read all food labels. If you can't pronounce an ingredient, put it back on the shelf!
    In other words, be proactive, be demanding of the medical profession, do your homework, & do not give up.

    Dee