Myalgic Encephalomyelitis Community
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Desperate for some help??

Hi everybody. i'm new to this ME forum. like most ppl with ME/CFS, it's a long story. i'll therefore, endeavor to make it as brief as possible.

i have had ME for some time. 3/5 yrs ago, I started having severe chest pain, collapses, headaches, swallowing difficulties (lost 1/5 stone in weight) & a number of other symptoms.

following the first collapse, my B/P dropped from a normal 137/70 to stay hovering around 100/60. it goes up when i go to the GP's & appears within normal parameters. the problem is my body reacts strongly to any kind of environmental change, so a small drop in B/P is felt v. strongly in my body & reacts accordingly.

fast- forward to this year. i'did eventually got referred to a Cardiologist, who did a 'Tilt Table' (TT) test in July 2015. that was to rule out POTs. there was no significant drop in B/P during this test. however, i had to ask to have the test stopped after approx. 12 mns as i felt so - awful nauseous & as if i'd pass out. coz the results of the TT was normal, i was discharged from the cardiology dept. back to the GP. i didn't realize this until i spoke to my GP.

I had been managing the low (for me) B/P by drinking 3-4 litres of fluid daily. however, after a series of repeated UTI's recently, that responded only partially to antibiotics, i drooped the fluid intake to reduce bladder irritation. subsequently, the B/P dropped and all the chest pain/breathlessness/ hemi cranial/occipital headaches have returned with full force, possibly worse. it feels like i've had a small stroke down my left side.

so, i'm wondering if anybody had a similar experience & what they did to help remedy the problem. my GP, either doesn't believe me or thinks i'm a hypochondriac & treats me accordingly - but in anice patronizingly manner. i've done the rounds of the Docs in the practice and there seems to be a culture of not taking ME/CFS seriously. in fact one of the GP's said it was 'Psychosomatic'. following that, i had a Mitochondria function test done. i had a bunch of abnormalities that i have tried to correct. the Mito. test said i was in Mitochondrial failure i.e. had 'cardiomyopathy'.

i was on b12 which helped enormously, but i seem to have developed an auto-immune response to same, so have had to stop supplementation.

i'd be most grateful for any suggestions. i'm at the end of my tether & have to house move shortly.

1 Reply

oh dear...........apologies if i have duplicated my post.........having a VERY FOGGY time presently?


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