am I going in the right direction? which way to go?

Discussion in 'Fibromyalgia Main Forum' started by lastormer, Feb 3, 2007.

  1. lastormer

    lastormer New Member

    I need a little advise, well I need alot of advise.
    I went to my family doctor to see what was going on with all the symptoms I have been having. My blood work was fine and he said my thyroid was ok. he refered me to a neurologist and also I am going to have a sleep study done due to the lack of sleep that I experience.
    right track? or not? should I be looking into seeing other doctors? such as a endo doc? Should i ask to be tested for Lyme? and if so so I ask the neurologist or my family doctor? what test should i ask to be ran on me to ensure or at least try to ensure a accurate diagnosis. I have read so many stories of misdiagnosis. Please any advise would help me before going to the doc Feb 12.
  2. kjfms

    kjfms Member

    I really do not have any advise except hang in there sometimes it takes a while because with FMS the physicians have to rule out other diseases.

    I was diagnosed in 1998 but it took me about 5 years to get a diagnosis and about 6-8 physicians if I remember right -- it's been a while.

    FMS is more acceptable now and I am sure it won't be nearly as long for you.

    Has any of the physicians checked you tender points yet? That is a pretty big indicator.

    I was diagnosed by a D.O. (doctor of osteopathic medicine)and one treats me now for my FMS she is great. Have you ever thought of going to a D.O. possibly? I have always have good experiences with them.

    I hope you find relief soon,

    Karen :)
  3. ravenpaige

    ravenpaige New Member

    I just found this last night an saved it for my own reference, but perhaps you and/or your doctor would also find it helpful. This is a list of "potential causes of abnormal fatigue" which came from "Chronic Fatigue Syndrom Guidelines found in the _Journal of Chronic Fatigue Syndrome_ Vol 11, No 1, 2003 The article was written by Kenny De Meirleir and Neil McGregor, and I found the article/journal issue by googling on "meirleir journal of chronic fatigue syndrome" (without quotes).

    As you will see, it's quite a long list. Your doctor has probably already ruled out many (such as diabetes, and the thyroid diseases) via blood work already done. A sleep study will help eliminate sleep disorders such as apnea and narcolepsy, which can both cause fatigue, so that is probably a good idea. Be aware, however, that many people with CFS do have subtle sleep disorders. Some people find that treating the sleep disorder brings them completely back to normal, and in that case, they had a sleep disorder causing fatigue. However, if they find a disorder and it's treated properly but you still have fatigue, then you may have something else that has caused the CFS, which then in turn causes the sleep disorder.

    As for Lyme, some people have had chronic Lyme, and when it is properly treated, they are cured. However, Lyme is a relatively rare disorder, so I don't think it would be the first thing I would check.

    Anyway, here's the list. Hope it will be helpful to you. I'd also love comments from others on the list about how helpful and/or complete this list might be.

    TABLE 1. Overview of the Potential Causes of Abnormal Fatigue
    Acute or chronic infections
    • Viral
    • Bacterial
    • Parasitic
    • Zoonotic
    Mood disorders
    Sleep disturbances inclusive of sleep apnoea
    Malignancy of any origin
    Cardiovascular disorders/conditions
    • Agranulocytosis
    • Anaemia
    • Cardiac failure
    • Congenital heart disease
    • Cor pulmonale
    • Endocarditis
    • Subacute bacterial endocarditis
    • Leukaemia
    • Mitral stenosis
    • Myocarditis
    • Thalassaemia major or minor
    Metabolic disorders/conditions
    • Avitaminosis
    • Diabetes mellitus
    • Electrolyte disturbances
    • Hyperparathyroidism
    • Hypothyroidism
    • Hyperthyroidism
    • Euthyroid sick syndrome
    • Menopause
    • Metabolic disorders
    • Phenylketonuria
    • Fanconi syndrome
    • Cystic fibrosis
    Endocrine disorders/conditions
    • Acromegaly
    • Addison’s disease
    • Hypopituitarism
    Connective tissue diseases
    • Rheumatoid arthritis
    • Lupus
    • Scleroderma
    Chronic allergy reactions
    Heavy metal poisoning (e.g., lead, mercury, arsenic)

    • ME/Chronic fatigue syndrome
    • Cushing syndrome
    • Myelodysplastic syndrome
    • Sick building syndrome
    • Post-polio syndrome
    • Temporal arteritis
    • Ulcerative colitis
    • Malabsorption syndromes
    • Hodgkin’s disease
    • Cerebrovascular accident
    • Head injury
    • Multiple sclerosis
    • Myasthenia gravis
    • Myelofibrosis
    • Osteomalacia and rickets
    • Parkinson’s disease
    • Polycythaemia (rubra) vera
    • Polymyalgia rheumatica
    • Polyneuritis
    • Rheumatic fever
    • Cirrhosis/Uraemia
  4. xchocoholic

    xchocoholic New Member


    Knowing what I know today about how food affects our bodies, I would start by looking at your diet ...

    At least you'll know you are doing something while you are waiting for your sleep study ...

    First eliminate or at least cut back on all the obvious offenders, like caffeine and alcohol. And foods that you know bother you ...

    Then, if that doesn't help OR you just want to get to the bottom of things quicker, try eliminating gluten, dairy, soy, corn and eggs. These are common food sensitivities.

    It is possible you'll feel better very quickly after getting the gluten or allergens out of your diet. I was no longer hyper 24 hours after getting the oats out of my diet. And haven't felt sleepy or slept all day since getting the wheat out of my diet.

    My sleep problems (myoclonus / seizures ) and ataxia were completely resolved approximately 1 year after eliminating gluten (wheat, rye, barley, and oats) from my diet.

    Gluten and food allergies are common in CFIDS and FM. Or you might be a celiac (gluten intolerant) especially if you have other family members who are ...

    You don't have to have digestive problems to have problems with foods ... Runny noses, congestion, headeaches, fatigue, etc ... are common too ...

    Good luck .. xchoc

    ps .. the tests for food sensitivities and celiac are not reliable so you really have to eliminate the food to see if it is causing a problem for you ...

    [This Message was Edited on 02/04/2007]
  5. hi there.yes i think you are going in the right direction as regards lack of sleep making your condition worse.

    ive only known i had fibromyalgia and ME chronic fatigue syndrome,for 12 years.the hospital specialist said the hospital have known ive had it many more years,but had chosen not to tell me at the time.

    anyway,to cut a long story short.

    after many years of them fobbing me off.i was told last year WHAT THEY REALLY THINK CAUSED MY ILLNESS.

    im in my 50s now.when i was 10 years old,id foolishly played near train lines,and had walked into what i thought was turned out to be a chemical that was corrosive,it was used for cleaning out boilers on trains.

    anyway,i was wearing plastic sandals (it was the style back in the 60s)and when i walked into this stuff,it burned my feet.i didnt lose the feet,but the stress of the accident was major.

    a few years later, id woke up with boils on my knees.these boils turned out to be the start of psoriasis.

    from age 13 to 45 i then had most of my body covered in psoriasis.

    so anyway,last year my doctor said that in my records,its stated that my fibro/chronic fatigue syndrome,was caused by me living years with disturbed sleep patterns,caused by the itching in the night,due to my body being covered in psoriasis.

    it kind of makes sense to me,as having the itchyness of psoriasis night after night,for many years,did nearly drive me insane.

    but now im older,and only have small patches of the psoriasis on my elbows and one knee.this rash is kept under control and doesnt itch.

    im taking one/50mg amitripyline tablet at 4.30pm each evening,and have been on those for 12 years now.they help make me i can drift off to sleep easy at night.

    i work part time in the illness wouldnt allow me to work in the early mornings,because of the muscle stiffness.

    the sleep issue is a major part of this illness, i believe.but i know i didnt have chronic fatigue syndrome back then,maybe i had the fibro more that 12 years ago.i had the aches and pains back then,and the lady region problems,you know with the ovaries and womb problems.migraines with vomiting.hyperactivity.

    but the chronic fatigue symptoms came after id had a total hysterectomy in 1995.then i went on to have a flu virus that made me HAVE to sleep,anytime any place.and fatigued me after doing small chores.

    im happy to say that,im still mobile,and in pain every day,but ive some how managed to train myself to push the pain thoughts to one side,and just get on with my job.i do crash and burn some nights,after work.but as long as im able to do my job,im happy at that.

    i dont work weekends,and i make sure im in bed for 9pm every night.

    i wish you luck in the future,and i hope you can get some good quality of life,even if you arent able to get cured.

    kind regards
  6. lastormer

    lastormer New Member

    I would have never thought sleep affected so much..well so seriously

    PITATOO Member

    I doing a sleep study is a step forward in the right direction. You may get asked this of other Dr.'s if you go to others so get er done. You may have sleep apnea and or sleep apnea along with your fibro. I think this can tell a lot. Good luck - Bobby
  8. fungirl2100

    fungirl2100 New Member

    What type of bloodwork did they run? I would find that out. You may have already been tested for Lyme, MS, Lupus,
    plus countless others. I would try to find that out.

    How much pain are you having? I know lots of people see Rheumys, but I am not one of them. My family doc is internal medicine/family practice (bar none the best) and my doc for my fibro & pain probs is a Pain Management Doc.
    He is an Neurologist, Anesthialogist, & Fellowed in pain managmenet who by the way runs the clinic i go to.

    It's really up to you & you may want to talk to your doc about it. Your doc may need to refer you to a certain doc before one will see you especially a pain doc. or it might be an insurance requirement.

    I need more bloodwork already had the M.S. lupus, Lyme tes. I think I need a genetic bloodwork lab done up. Hellow million dollar work up to go with the MRI's and X-rays he wants. Oh well. Thank god for Insurance.

    love your friend, fun

    Hang in there. It will be okay.

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