What A Journey!

Discussion in 'Fibromyalgia Main Forum' started by techno, Feb 22, 2006.

  1. techno

    techno New Member

    Hi all..........

    Decided to describe my experiences with the medical community over the past six years.

    I began 6 years ago with severe irritable bowel syndrome, followed with extreme fatigue, memory problems, cognitive dysfunction,intermittent balance problems and off and on painful episodes involving different parts of my body.

    At my first Dr's visit the Dr. thought I had some sort of
    intestinal parasite and so, sent me for a stool sample.
    Nothing found.
    Next .... referral to a Gastroenterologist. 6 month wait!
    Oh! After interview with Gastro. .... he recommends colonoscopy.
    6 months wait again for colonscopy.
    Results ... nothing wrong there.
    Conclusion of Dr. nothing wrong so go away!

    Total period with no answers so far 1 year.

    After suffering with bad gas(Flatulence) which ruined my social life and caused me unbelievable humiliation in public & social functions, work etc.
    Again I approach another Dr. for help.

    This time Dr. thinks food allergies.
    Puts me on a cave man diet. No milk products, grain or sugar or other carbohydrates.
    Boy! was that diet rough.
    Result nothing !

    Refers me to another Gastro. Wait another 5 months to see him.

    Sends me for more stool tests... results nothing.

    Wait another six months to get a full colonscopy and
    gastroscopy(down throat).
    Results nothing!

    Total period with no answers 2 years now.
    Still suffering.

    Meanwhile being treated for a suspected intestinal
    yeast infection.(candida)
    Tried nystatin, ***azole, wild oregano, olive leaf, etc
    No difference.

    Get reservations at the hospital for a liver biopsy,
    takes another 4 months for a time slot.
    During operation, which is basicly inserting an enormously
    thick needle into your side and coring(like an apple) a piece of your liver which is the sent to a lab to check for disease.
    Nothing there!

    The best part of that experience was the fact that I went into the operation in a flare and was suffering from Neurally Mediated Hypotension(low blood pressure).
    Well just when the Dr,(poor bastard) was pulling out the "Apple Corer" I passed out as my blood pressure crashed,
    Well the panic was on as they thought that they had punctured my lung. Not fun for me as when I came to I had 4-5 Dr.'s around me sticking more needles etc into me etc.
    As soon as they got my blood pressure back up
    I got the hell out of there!

    So, Gastro gives me prescription for digestive enzymes,
    as he says, that it's probably your pancreas not functioning
    properly. Strange thing... they helped... still taking them.

    Total period no answers 3 years.
    Still suffering in silence.

    One day at 4 years into this nightmare, I'm going to my Gastro for my regular visit and just happen to have what I thought was another flare up of my back(degenerative disk disease).
    He sees me and notices how much pain I'm in and immediately
    refers me to another specialist, a rhumatologist.
    6 months to get appointment..........

    Well, here we go again.....
    Although this woman(DR.)was very kind and sympathetic I'm back on the blood tests, x-rays, etc
    I'm first on Vioxx but that didn't agree with me,so I switched to Celebrex.(on that for 2 years) then switched to Bextra.
    Those Coxx 2 inhibitors worked good for controlling my pain
    but did little for my other symptoms.(Fibromyalgia)

    Then one day I wrote down all my symptoms on a sheet of paper and handed it to my Rheumy.
    Well guess what! A final diagnosis of Fibromyalgia!
    Halleluyah!

    I refused to take narcotics, so she put me on Neurontin
    what a great drug for Fibromyalgia.
    But, now am on a newer version of the same kind of drug
    called Lyrica and its working great.


    Total time 6 years in LIMBOLAND!

    I'm just grateful to have a final diagnosis!
    My guess is millions of people don't ever get a diagnosis.
    What a shame!
  2. sarahann61

    sarahann61 New Member

    Sorry, that it took you so long to get a dx. , and I do know how it is... I can relate, to all of your symptoms.

    I have had strange symptoms ,and when they would run a test, with nothing found, I would usually drop it.

    Some , I never got an answer, since I have been on the boards, I realized I have had FMs ,a very long time.

    I got laughed out a lot of times, because I didn't understand things, very quickly. Since ,I was blonde , got wrote off as dumb... But, if I could just concentrate, I could understand everything............. Sometimes, it was if the brain ,would not click on, or it was having a hard time......

    I had the IBS everytime ,I went shopping, sure it was stressful.. But, I was wanting to enjoy it, not spend the day, in every bathroom at the Mall.......

    I am glad ,after all you went through, you finally got the help you needed.. Hope you respond to the meds, and can lead a fairly, normal life. I noticed that you were a firefighter... a volunteer, or a fulltime job??? I bet it is very stressful..... ,sure makes it harder for me... Sooner, or later, I am going to flare,big time.......

    [This Message was Edited on 02/22/2006]
  3. techno

    techno New Member


    Thanks for your comments Sarah Ann ......

    I often wonder if because of our cognitive dysfunction
    and fibro fog we get dismissed easily as hypochondriacs
    or just plain malingerers looking for attention.

    And yes I am a permanent Firefighter and this disease
    has made performing my job so much more difficult.

    But, we march on with courage don't we.

  4. techno

    techno New Member

  5. sarahann61

    sarahann61 New Member

    We do keep marching on, and I think ,that everyone would have more respect for me, if they could understand, what I have been through..

    But for me, don't know if it was courageous, or just didn't have a choice.

    I was dx. with RA in 1995, you think people would uinderstand that, but they don't .... If they have any kind of arthritis or aches and pains ,then they have what I do.. If they are able to keep going , then so should I.

    I think the Fms , has been more debilitating than the RA. You have a dangerous job, and I admire your courage, and fighting the DD's , too...... It would be very tough...