Do I have Fybromyalgia?

Discussion in 'Fibromyalgia Main Forum' started by alison1972, May 24, 2003.

  1. alison1972

    alison1972 New Member

    Hi all

    I have been lead to believe by my so called doctors that I have IBS...I have suffered from the following symptoms for 14 yrs and am now 31 yrs old:

    Abdominal pains, very severe at times
    Lower back pain
    Constant fatigue with no energy and feel like I could sleep forever!
    Aching limbs
    Very weak bladder
    Hot and cold sweats for no apparent reason, not matter what the room temperature is i.e. my skin can feel hot enough to fry eggs on and I'll be submerged under the covers with a hoy water bottle shivering!
    Nasty "turns" i.e. sitting on the loo, constipated one minute, the next it all comes out at once! This is accompanied by nausea and pains that make me feel I wanna curl up and die, the room blacks out, very cold sweat, and if I am not careful I pass out before I make it to lie down afterwards when i just wanna sleep forever! Incidently my mother and her mother have suffered from these "Turns" but my older sister doesn't. Is this a hereditory thing?
    Very bad short term memory
    Dry skin
    Sores on my inner thighs (look like boils, but very pussy and painful when touched)
    Raging thurst most of the time
    My weight goes up and down like a yo-yo!

    I have been diagnosed as having anything from a fever for the last 14 yrs, to being too stressed out! What a load of crap. I am as laid back as they come. I have tried colonic irrigation, have had a colonoscopy (clear), blood tests for who knows what (my doctors didn;t even tell me what they were testing for!), I have discovered I have allergies to various food types and have abstained from them for the last 8 months but still no change in my health. I have been off work for the last 4 months and am desperate for answers. I have also tried taking suppliments that I can't even remember coz my memory is so bad!

    If any one is or has been in this situation, with my symptoms, before, or can tell me if they think it sounds like Fybromyalgia or perhaps CFS, I would love to hear from you. I gave up on my docs years ago, and am convinced that self diagnosis and research is my only option. My docs just write me off as a hypocondriac!

    Please help :)

    Many thanks , Ali xxxx
  2. Princessraye

    Princessraye New Member

    Some of your symptoms sound like Fibro.
    If I were you I would see a rheumatologist and an infectious disease Dr.
    As for finding a good one, you may want to check out the Good Dr. list on this site or do some research on the internet for Dr.'s in your area.

    I had terrible IBS for years and it ended up being an overgrowth of yeast, which I got rid of by taking Diflucan for one month and now I take acidophilus. I am getting ready to try a product recommended bu some on this site called Candida. For the most part I don't have IBS anymore which is like a miracle as it was hell on earth. Many people (and Dr.'s ) do not believe overgrowth of yeast can do this but it happened to me. I took way too many antibiotics all my life, which is most likely what caused my problems and for the last few years I avoid them.

    Good luck to you !
  3. loopyloo

    loopyloo New Member

    I have CFS and i have all these symptoms except the sores on legs i do have all the other symptoms and the doctors here in the uk will diagnose it if you have more than 6 months unexplained pain but it took me 5 years to get diagnosed so dont give up i think i have fm as well but havent been diagnosed with thay yet i am to see a doctor in sept for cognitive therapy as my memory is so bad and i have been of work with stress and high blood pressure trying to cope with it all both the symptoms for CFS and FM are very simular done give up ask for a second apinion
    ((((((((((big hugs))))))))))))))from the uk
    Loopyloo xx
  4. alison1972

    alison1972 New Member

    Hi and ty for your responses :)

    I know there must be a light at the end of the tunnel, if only I could find it! I really don't care what I have anymore, as long as there's a way to relieve the symptoms, I'll be happy. CFS does sound the most likely candidate so far, and I just hope I can get my doctor to sit up and pay attention to me for once. I have even burst into tears in the dr's office before, explaining all my symptoms yet again and saying I need something done about it...and all my doc says is "you'll just have to live with it!!!"

    Fingers crossed, and thank you so much for all your help, will keep you posted :)

    luv n hugs


  5. Princessraye

    Princessraye New Member

    It makes me emotional too so I take a list and give it to the Dr.
    I don't list every minor detail just the major ones. Then in the discussion with the doc I bring up the other.
    Good luck
  6. Shirl

    Shirl New Member

    Hi Allison, wow, you do have some serious problems.

    Some I can relate to, especially the bowel problems. I keep a heating pad in the bathroom at arms reach for those times I get those terrible cramps.
    Yes, I have actually fainted from the pain in my stomach. I don't get diarrhea thought, I was very constipated instead.

    I have actually craweled on the floor to get from the bathroom to the bed many times.

    What I think caused it, is IBS, and I have to agree with one of your doctors, it can be brought on by stress! BUT food plays a large part in it also.

    I stay away from any foods that are gastric, like cabbage (I love it!), broccoli, chinese foods, MSG will kill me, garlic is also a no, no.

    I take Noni Juice, and Probotics help a lot. Most of all I make a big effort to say away from people or things that cause me stress or make me angry. No fast food or packaged foods at all.

    I have Fibromyalgia, but it sounds more like you have CFS? Gee, I am no doctor but your symptoms sound a lot like our memebers with CFS.

    I also used to get those sweats bad. One minute I was hot the next freezing cold. At first I was told by the doctor that it was menopause, but hay, that does not go on for 16 years!

    I have had FM for 20 years now, have made the rounds of doctors too, I can honestly say that I am so much better since coming to this board over two years ago,reading books, doing my own research, and treating myself than I ever got from doctors. I know there are many good ones around, but I have not been lucky enough to find one in my area.

    I know lots of our memebers here can relate to how you feel, and they will be glad to share what they are doing to help themselves.

    Lots of knowledge around here.

    FM's have horrific pain in the muscles, sleeplessness, IBS, sinus attacks, allergies, fatigue, hot flushes, fatigue(but not as often as CFS's), achy all over, and also the Fibro Fog.
    Your post sounds a little different from this, but then again we do have cross over symptoms.

    The board is slow on holidays and weekends, so be patient if you don't get replies soon, but do keep your post bumped up on the first page.

    I hope we are able to help you, as much as I have been helped here.

    Again, welcome to the board, and I do hope you have a good
    day today.

    Shalom, Shirl
  7. alison1972

    alison1972 New Member

    Hi shirl and all

    Ty so much again for all your responses already! Only posted here today and already have got lots of info to work with :)

    I think CFS sounds most likely and I understand what you say about the self research because the docs are useless!!! I must admit I thought I might be having a premature menopause, what with the hot flushes etc etc . I really don't know, but talking to you guys and gals has made me really determined to get some answers from my doc at last!

    Thanks again all, lots of luv n hugs


  8. layinglow

    layinglow New Member

    Ali, I have Fibro and CFS, and certainly know how aggravating it can be to get a diagnosis. I finally got my DX'es, and found a wonderful Doctor, so I want you to know there is hope.

    I, too had terrible IBS, keeping me housebound.
    I had a stool tests run, and it showed that I had horrible candida overgrowth (yeast).
    I can now say, I am free of the symptoms and have been for many months now. I took Berberine Complex, (has natural ingredients and works in the gut and systemically, too) to kill the yeast, as I could not tolerate the antifungals Nystatin, and Diflucan, they made me very sick. Not only that but my candida infection was systemic. Prescription Nystatin and Diflucan both have limitations as one works well in the gut, and the other systemic. I posted a short article about the differences below.
    Anyway, that is the first step, finding out if you have candida overgrowth, and treating it.
    The second step is to replace all the good flora in your gut that has been destroyed. This is accomplished with a probiotic (get the kind that needs refrigeration, guarantees live flora) I use a probiotic that has acidophilus and bifodobacteria, which restore the natural health to your gut. This I continue to take. I did make dietary changes as well. I am symptom free.

    Keep trying to find a Doc knowledgeable in CFS and FMS, it makes all the difference in the world.

    Best wishes, LL

    Diflucan and Nystatin are very different in their
    action. Diflucan is a systemic anti-fungal that
    reaches the yeast mainly by way of the blood stream.
    Although swallowed, most Diflucan is absorbed into the
    blood stream through the intestine wall and works
    systemically. Unfortunately, very little remains in
    the intestine, so intestinal Candida may be supressed
    but will not be eradicated by Diflucan.
    Nystatin is actually extracted from bacteria and does
    not pass through the intestinal walls. It therefore
    remains in the intestines at full concentration. If
    used simultaneously in both mouthwash and tablets
    form, Nystatin will kill off GI candida from the mouth
    to the anus, but will not affect any Candida outside
    the GI tract.

    [This Message was Edited on 05/24/2003]
  9. KittyCat

    KittyCat New Member

    I've experienced many of those symptoms myself. A few months ago while at a friend's home for dinner, I suddenly (after eating something sweet) got an attack of lower abdominal cramps and the big 'D.' Then I broke out in a cold sweat. I didn't know what was going on. I felt awful! Interestingly enough, my friend asked me if I had fibro. (She has fibro). I told her I didn't know. I do have CFS though. Who knows? Maybe these could be symptoms of Fibro as well.

    Take Care!

  10. alison1972

    alison1972 New Member

    Hi all
    Thank you once more for all your responses.

    It's so conforting to know there a kind knowledgeable people willing to help myself and others through this.

    It seems from what I have read on various web pages that IBS is one of the symptoms of CFS. Is that the case with Fybro? If it is then they really are very similar and I guess I just have to hope my doc picks up on the right one :)

    Take care all, lots of luv n hugs, Ali

  11. alison1972

    alison1972 New Member

    Hi again

    Just a thought, as I have just been on the phone with my mum discussing the possibility that I have turns out she has a lot of the symptoms too! Does anyone know if CFS can be hereditory? I have searched loads of web pages but not found an answer to this question

    Take care, luv n hugs, Ali

  12. spatialbean

    spatialbean New Member

    Have your thyroid levels been tested?

  13. alison1972

    alison1972 New Member


    I know I wondered myself a while ago about my thyroid levels and questioned my doctor. He got the nurse to take some blood and the test came back negative. Are there any other tests for thyroid levels apart from blood tests?

    Off to the docs in an hour or so, absolutely dreading it! Will let you all know how I get on :)

    Take care all, luv n hugs, Ali