desperate for some help.

[Hidihi]

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.

thanks in advance.

H

[Fibrofoggiest]

Hi Hidihi,

You have clearly been through an awful lot of problems, which must have been very scary for you, so kudos to you for getting through all that.

I'm not in any way being unfriendly when I say that this forum is not one specifically for ME, but there is one within the HU community called Myalgic Encephalomyelitis Community and here is the link for you healthunlocked.com/meandcfs... where you will find people with much more knowledge specifically of ME rather than we who know a fair bit about fibromyalgia, though we do have members who operate in both forums.

I really hope that you get the support you so need, and I'm sending you lots of positive, healing and soothing vibes 😀

Foggy x

[Hidihi in reply to Fibrofoggiest]

oh dear, apologies, i've signed onto the wrong one - foggy brain. thank u for telling me.

H

[Fibrofoggiest in reply to Hidihi]

No problem at all Hidihi, wishing you all the very very best 👍🏻😀😀

Foggy x

[TheAuthor]

I genuinely and sincerely hope that you find the answers that you are looking for. If the other forum cannot help you maybe somebody on here may have some answers for you.

All my hopes and dreams for you

Ken

[Hidihi in reply to TheAuthor]

thank u - most kind.

H