I am really desperate, if anyone could help I’d so appreciate it.
I was diagnosed with ME in 2008. By 2011 I had to stop working as I couldn’t function even with reasonable adjustments. (I also have endometriosis and adenomyosis so chronic pain on top which doesn’t help). I had a few very bad years but after a few years of light self employment, things were much improved.
DH and I decided to try for a baby - he works from home so is around if needed and we had a great plan, but we ended up having twins and they both have disabilities. I’ve been through phases where things aren’t too bad but right now I’m completely on my knees. It’s been a stressful six months dealing with EHCPs but that’s coming to an end (until the six month review of course!) and various other things.
The last few days my fatigue has been so bad I’ve barely been able to move. Today has been horrendous - the twins have literally watched nursery rhymes on the tv all day while I lie on the sofa, only getting up to make them food, change nappies, get drinks etc. I feel like an absolutely useless parent right now. Nothing specific seems to have triggered it.
Anything medical that I can think of has been ruled out. Blood tests always fine. I had a pretty bad vitamin D deficiency but been on a high dose supplement for a long time now and my levels are fine. B12 fine. I was convinced it was my thyroid due to all my symptoms and have done several private tests which vary, but never out of range (I know normal range for thyroid is contentious - I had one private test where my TSH was 5.95, it has been as low as 1.4, but most of my private tests it’s about 3.8. Other levels in normal range including antibodies. Even if it is my thyroid it’s kind of irrelevant because no doctor in the U.K. will treat at the level I’m at - and all three times the GP has tested me in the last few years my TSH has been mid 1s and nothing else abnormal.
So maybe it is “just” CFS. What the fuck can I do about it?
Last time I saw a specialist about it was years ago. Has anything changed? I know other countries are trialling medications like stimulants or other things, is that happening here at all? Anything else I can ask for?
I cannot carry on like this. I honestly just want to lie down and never get up. Right now I’m too sick to care for my kids and my DH has to work - if he took time off every time I was sick he’d never be at work.
I will try anything at this point. Anything at all (within reason - I have a quite serious woo allergy after watching my mum get ripped off by so many charlatans in her final years).
I’m going to see the most sympathetic GP in my practice at the end of the month to beg for help. If anyone has any ideas for what I can ask for I’d be really grateful.
I had reasonable results from pacing but that’s no longer possible. I rest as much as I can whenever I can. I don’t know what else to do.