CFS was wrong diagnosis

Discussion in 'Fibromyalgia Main Forum' started by 4merloverofexercise, Oct 17, 2008.

  1. 4merloverofexercise

    4merloverofexercise New Member

    I had all the symptoms of multiple sclerosis and already had a diagnosis of Chronic fatigue and fibromyalgia. Then I happened upon a doctor who told me I have hyperventilation syndrome and he referred me for treatment (breathing exercises). Those of you who have a diagnosis of CFS need to ask your doctor to test you. Basically you are to take 20 deep breathes in a row. By number 6 I felt so ill I cannot even tell you; that is how he knew. After 8 years of laying in bed I am very slowly getting my life back; I can even run around and do errands now and it has only been two months. Please take the info I am sharing here very seriously because there are a very large number of you who I believe have simply been wrongly diagnosed and this illness can be reversed.

    Renewed life
  2. greatgran

    greatgran Member

    How were you treated for hypervenlation syndrome? What type of doctor did you go to? Where there any other test?

    Just regular deep breaths, I did those and felt nothing.

    Never heard of this, very interesting .

  3. doggymommy

    doggymommy New Member

    So I just sat here taking deep breaths as I'm sure most people will do upon reading this lol

    After about 11 I got dizzy and just didn't wanna do anymore...
  4. ulala

    ulala New Member

    thanks for this very interesting info! Here is one link to read about this :

    I also used to LOVE exercise, I lived for it, but now don't do any exercise. I wonder if CFS/FM/Lyme can cause this, which brings us back to which came first the chicken or the egg.

    I think that many of us have this, but it's not the cause of what we have.

    Thanks again!
  5. TESTS? any/how many test results have you or did you have over the course of 8 yrs, if you don't mind me asking, with the utmost respect, (and true happiness for ANYONE who gets any piece of their former life back!)

    If you had any abnormal labs, urine, blood, or otherwise, MRI scans, evoked potentials, ANYTHING... please do share what they might be, and are they being checked to see if any will be normal again, through this breathing exercises?

    By "ALL" the symptoms, MS is a pretty severe one, do you truly mean things like Optic Neuritis, loss of bowel/bladder, and things such as that? Or sensory stuff, like numbness, tingling, parasthesias, myoclonus, hyper/ hypotonia, etc...

    I'm diagnosed with all 3 as well, but, glad my TREATING neuro, does not even mention MS now, to me, after 6 (?) yrs, nearly, of treating me symptomatically... we do MRI's when he feels they may be needed, as well as EEG's, or other tests.. but, I do have a 'couple' of lesions, and some abnormal sensory tests, (ENG, SSER, clinical exam ) etc but, the main focus from mid 2003 besides intention tremors, spasticity, etc has been TRIGEMINAL NEURALGIA, and that is 99% of my visits with him- tons of anticonvulsant treatments & changes, for that condition, often, but not always related to MS, I was dx'd with the TN at age 24-25, and have had 3 horrendous surgeries/procedures for that, making it the main focus normally, for my visits, treatment.

    Anyways, I'm 30 yrs old now, and have as many diagnosis' (if not more) than I have, years on this earth.. so that's enough about me, but, I too, have been disabled 8 yrs now, as of August 08', and 95% housebound, and 100% of that time, in bed, or at the computer, as tolerated..

    Interested to hear of any and or all abnormal tests you may have had in the past, and what your doctor says about any of those, or if they've been checked at all now..

    Glad that ANYTHING works for ANYONE, ((((cyberparty)))) for you!

    Congrats, sincerely, Laura M. aka "AintAsGoodAsIOnceWas"
  6. 4merloverofexercise

    4merloverofexercise New Member

    Oh my gosh, I've had them all. I spent a week at Mayo too. I've had multiple visits to the hospitals over the years with chest pain. I was told it was panic and/or anxiety but I don't panic and I'm not anxious?? Over and over I was sent home with no findings. I did very well on the stress test but if someone had bothered to check me 24 hours later they would find they couldn't wakie me up. I was pushed in a wheel chair one time for one test after another. I did well on the test but in between my head hung forward in the chair; it was like I was in a coma. No one noticed and I was too tired to say anything. I've been poked for every type of test. See, when you don't get enough oxygen your entire body reacts; though it varies from one to the other. Typically the symptoms are on the left side only. I was deathly ill; weak and major bowel probles. Ironically, I complained about everything from head to toe, but never my breathing and then find out I have a breathing disorder. If you got to 11 and quit it is very possible you have a problem. You should still go up to 20. I felt horrible at 6. That's all they need to see to determine if you have a breathing problem. It takes quite awhile to correct but I'm telling you-I've been given my life back and every day is absolute joy.

    Renewed health
  7. 4merloverofexercise

    4merloverofexercise New Member

    I had two MRI's and they showed some white matter. My legs would give out on me (leg, I should say), was seen at the hospital for optical neuritis, bladder and bowel problems, speech problems, tingling and burning in my left leg and hand; especially the palms and tips of my toes. Dizziness, numb patches on my leg. Cogniive problems; severe at times. I was too damn tired to live and barely dragged myself to work and home-direct to bed. It bcame so serious I could no longer work; I was deathly ill. This doctor has me doing 200 breathing exercises a day and though it is a very slow process, it is working. Can you imagine getting your life back after more than 8 years mostly in bed.

    Renewed life.