Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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weight gain, IBS, cloudy urine

Discussion in 'Gastrointestinal and Urinary' started by diwlo, Oct 25, 2014.

  1. diwlo

    diwlo

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    Belgium, Europe
    Hi,

    I have been diagnosed two years ago with ME/CFS but I am still having a hard time accepting this diagnosis - mainly because a whole range of symptoms described as frequent in ME/CFS-sufferers are missing (no post-exertional malaise, no muscle pain, no swollen lymph nodes, no sore throat...). I had to reduce my workload by 50%, tried supplements, antidepressants, exercise, but nothing seems to help. Physical activity is absolutely no problem for me, but cognitively I feel as if I was on drugs all the time.

    My main symptoms are extreme fatigue, brain fog, heavy, burning legs, feeling sick, changing bowel movements, weight gain and episodes of cloudy urine (once/twice a month). I also had temporary skin issues (e.g. oral thrush). Lab test results are fairly normal (slightly elevated amylase, slightly reduced igg, but high cholesterol).

    Doctors think that my problems hint at ME/CFS, but they say that I am not experiencing the classical manifestation of it, which makes it difficult for me to accept this diagnosis. I was wondering if some of you were experiencing similar problems. Especially the recurring episodes of cloudy urine are puzzling...

    Thank you for sharing your experiences with me!
    diwlo
     
  2. misskatniss

    misskatniss Senior Member

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    Germany
    Hey there, how about adrenal fatigue or some thyroid prob? That can cause all that too but without PEM and especially the weight gain makes me think of those glandular things. If you don´t experience PEM, I could imagine that you might develop ME if not cured but still can avoid ME if the problem is found and treated properly. I am no doc thou! On which basis did the doc diagnose ME when you miss at least one of the two defining criteria?? That´s puzzling, indeed. I hope you find some help. Did your doc exclude those things? All the best,
    missk
     
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  3. Tammy

    Tammy Senior Member

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    New Mexico
    Yeast problem perhaps?
     
  4. CantThink

    CantThink Senior Member

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    I would say if it were me in your situation... Your thyroid needs proper testing (free T4, free T3, TSH, and antibodies for graves and hashimotos). Tests for b12, iron & ferritin, plus vitamin D3 would also be useful. If you join the forum Thyroid UK, even if you're not in the UK, they'll help regarding reading blood tests and where to go from there once you've got them (you might already have some test results for these from general testing by the doctors who diagnosed you with M.E.). Request a copy of any blood test results for your medical file - it's really helpful to be able to refer back to.

    High cholesterol can go hand in hand with hypothyroidism so hypothyroidism should be excluded based upon your symptoms and the high cholesterol IMHO.

    Unfortunately doctors sometimes say thyroid results are okay when a person is developing a thyroid problem or else may be just inside a range but for them it equates to being poorly - as everyone is different. So even if you've been told your thyroid is okay, I would still double check and get hold of results.
     
  5. diwlo

    diwlo

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    Belgium, Europe
    Thank you very much for your replies! I got the ME/CFS diagnosis basically after exclusion of a whole range of other diseases. Thyroid tests came back okay, but I don't know about Graves and Hashimoto. I'll check that. Actually, what one needs is to find a doc who is "really" interested in what is going on inside your body... Well, you all know that...
     
  6. Abha

    Abha Abha

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    UK
    [
    My main symptoms are extreme fatigue, brain fog, heavy, burning legs, feeling sick, changing bowel movements, weight gain and episodes of cloudy urine (once/twice a month). I also had temporary skin issues (e.g. oral thrush). Lab test results are fairly normal (slightly elevated amylase, slightly reduced igg, but high cholesterol).

    Doctors think that my problems hint at ME/CFS, but they say that I am not experiencing the classical manifestation of it, which makes it difficult for me to accept this diagnosis. I was wondering if some of you were experiencing similar problems. Especially the recurring episodes of cloudy urine are puzzling...

    Thank you for sharing your experiences with me!
    diwlo[/quote]

    Hi Diwilo
    Check on PTHP too....One of the main symptoms there is weight gain.......
     
  7. OnTheMend

    OnTheMend

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    I am thrilled to know I'm not the only one feeling confused by her symptoms. I've self-diagnosed chronic fatigue because it's been 2 years of varying symptoms with brain-fog, fatigue, a swollen abdomen and steady decline in post-exercise recovery being among the most troublesome. My amylase levels have been around 130 ( 30 - 118 U/L are the lab ranges) and I also have intermittent cloudy urine and experienced an unexpected weight gain. Often a strong odor in my urine as well which no doctor seems to find at all concerning? Thyroid and adrenals are not an issue according to my tests. I've had low ferritin, which I am supplementing for and feeling a bit better. I started Fredd's protocol 2 weeks ago and am seeing some benefits (mood improvements, less stiff muscles, fitting into my smaller clothes) though it feels a bit like shooting in the dark sometimes. I have a naturopath guiding me to help navigate. I am working on the premise that the issues associated with CFS are systemic and some systems are triggered for some people and others are not. For me, pancreas, kidney and even ovaries have been impacted and I'm hopeful that restoring ATP to my body cells through the methylation protocol will remedy these symptoms.
    diwlo, keep us posted on your progress as well. Best of luck.
     

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