Undiagnosed...Wondering If I Could Have ME/CFS

Discussion in 'Fibromyalgia Main Forum' started by Chereese, Oct 11, 2012.

  1. Chereese

    Chereese New Member

    Hello, For the past 2-1/2 years I've been suffering a variety of symptoms. Every time a new symptom appeared, I went to the doctor. They'd run blood tests, the blood tests come back "normal," and the doctor says everything is fine, not to worry. My symptoms are: extreme fatigue, numbness/tingling feeling in fingers, legs, toes, muscle and joint pain and soreness, slight chill, headaches, dizzy spells, stomach problems, strange puffiness/rashes on skin, depression, anxiety, malaise...A few things that have stood out in my blood work in the past year or so is a slightly below normal Red Blood Cell count and White Blood Cell count on low end of normal, and slightly elevated Sed Rate. Also, my Vitamin D levels were moderately low and TSH a little high. I'm being treated for hypothyroidism. My concern is how can I have all of these symptoms - yet the doctors (I've seen several) so far keep telling me there's nothing wrong and/or I need to focus on my psychological health. Is it possible I have ME/CFS? Is there a specific blood test that can diagnose ME/CFS? I was diagnosed with Fibromyalgia in February 2004.

    Thank you all! God bless.
  2. MicheleK

    MicheleK Member

    Hi Chereese,

    So very sorry to hear you are going through so many symptoms without any real answers from your doctor. This is not unusual at all for FM or ME/CFS. Your symptoms as listed sound more like FM. Did they do ANA testing? Do your feet and hands get red and hot or cold along with the tingling?

    It is good they are addressing your thyroid and Vitamin D levels. You would be surprised how many symptoms just those two things being out of whack can cause.

    I have had ME/CFS, FM, and POTS for 2 decades and my blood tests come back mostly with flying colors. I work for a major ME/CFS/FM specialist and that is the way it is for even the most severely affected patients. Our blood does not tell our story the way it does for say, diabetes. If it did, we would not have been disbelieved and ignored all these years and there would be more effective treatments for us.

    ME/CFS usually involves a chronic sore throat, often with a red cresent line across the top rear of the throat. Also a crushing exhaustion that lays you out flat after doing things. It's a more severe exhaustion than Fibromyalgia. Neurological symptoms are usually very prominent too.

    You might want to look up www.treatcfsfm.org to get some more insight from a ME/CFS/FM specialist. It's a free self help website. Hugs, MicheleK
  3. mbofov

    mbofov Active Member

    Michele has given you some good information. She's absolutely right - for most of us, our blood work is fine. It doesn't tell the story of what's going on. My white cell count has been slightly low for years and years and it was almost hte only abnormality.

    My MCV (mean corpuscular volume) was elevated (though within "normal" limits), and this indicated a B12 and/or folate deficiency, which no one ever picked up. I'd taken B12 for years with little result but when I added in folate (metafolin or methylfolate, NOT folic acid, which is synthetic and can actually cause a folate deficiency), my energy finally started to pick up. After years and years of no help from the docs.

    Also found I was low in potassium, again with no help from doctors, but low potassium also can cause severe fatigue. My levels were at the bottom of the normal range, so no one mentioned this either. We have to educate ourselves and learn to read our own blood work, and look at everything, even those things in the "normal" range.

    There is no specific blood test for ME/CFS, unfortunately.

    Most doctors know next to nothing about CFS/ME and I strongly urge you to see an integrative medicine doctor - they're about the only ones who know anything, or a naturopath too can help. acam.org is a good website and can provide names of integrative medicine docs in your area. Scroll over "health resources" at hte top of the page and you'll find a link.

    Good luck!

  4. IanH

    IanH Active Member

    If you were diagnosed with FM (with surety) then what you now describe as your symptoms are most probably ME. In my opinion and experience, you had ME in the first place. It is very common for ME to be diagnosed in the first instance as FM because the pain is more prominent than the fatigue (and you probably reported the pain as being the problem). Also more doctors are accepting of FM and Rheumatologists are the specialty that this illness is allocated but ME has no specialty. The WHO have attempted to allocate ME to Neurology but in my opinion that is a short term solution but a long term mistake.

    Not all people with early ME have sore throats or swollen lymph nodes (some do some don't). However that does not mean you may not get those symptoms at some stage. Also quite a few have pain as their prominent early symptom, not fatigue and can easily be labelled FM.

    The bloods done in a typical clinic will not pick up ME. A research clinic could diagnose ME via blood analysis together with your symptoms.
    The test must measure :
    NKcellbright activity
    RNase-L fragmentation
    IL-6 and IL-12 or IL-18 levels over time These are immune system signalling chemical markers on cells such as lymphocytes
    There are other numerous markers which indiccate certain cells in the immune system are up-regulated and do not switch off.
    In addition a reasonably reliable test is a respiratory gas stress test.

    If you put all these together they can diagnose ME but the cost is prohibitive and needs specialized labs to do the work. In the mean time we have to put up with many doctors not knowing enough. Generally the knowledge of neuro-immune functions is poor in primary care doctors.
  5. MicheleK

    MicheleK Member

    I disagree with Ian on this. You could have FM with Renaud's Syndrome, or FM with Lupus. Those things absolutely have to be ruled out. It is a mistake to assume you have ME.

    The top ME/CFS research doctors do NOT diagnose based on blood testing. You would need to actually be seen by an ME/CFS specialist and have your entire illness history taken. Do not assume you have ME/CFS, when you have not had other illnesses ruled out. All the symptoms you described fit a number of illnesses that there is actually some effective treatment for.

    Get those other illnesses ruled out. (Lupus can take a while to be diagnosed with, due to doctors having to rely on a symptom pattern and numerous ANA testings over many, many months.

    Also numbness, tingling, chills, and the other symptoms you described do actually occur in Fibromyalgia patients.

    I lead a support group of almost 10,000 patients with both illnesses. I work for one of the top ME/CFS specialists in US, and I run a couple other patient based groups. In my opinion it is a big mistake to assume you have ME/CFS when there are so many other illnesses that mimic the symptoms you described. If at all possible you should travel to see on of the "real" ME/CFS specialists to be accurately diagnosed.

    Those centers are in Miami, New York, Utah, North Carolina, California, Nevada. If you can travel and need more information, I would be happy to provide it to you.
  6. IanH

    IanH Active Member

    No one should assume they have ME.
    What I was pointing out was the fact that FM is often diagnosed when ME is the illness. And when that happens it is not only confusing for the patient but also leads to incorrect therapy, possibly making the ME worse - which I have seen happen in a few cases.

    "The top ME/CFS research doctors do NOT diagnose based on blood testing"
    They may not "diagnose" but they do now select subjects (patients) on the basis of those blood markers. As they must if we are to move forward in research. A diagnosis made by a clinician is only a rough judgement as is seen when a Rheumatologist diagnoses FM when the patient has extensive spinal stenosis, or ME.

    I did assume that Anti Nuclear Antibody tests would have been done to more or less rule out SLE. It would have very remiss of a Rheumatologist to not rule this out given the symptoms, before diagnosing FM. The issue then being that FM is far more often "diagnosed" when it should not be. (Also my point).

    Lastly, without blood markers one cannot be "accurately" diagnosed with ME or FM by any clinician no matter how "real" or famous.

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