Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Fibromyalgia sufferers... AIBU to think this isn’t it...?

56 replies

CrunchyKnot · 29/06/2021 19:36

The pain I experience is like I can feel all of my bones, right into my toes and fingers. My ankles feel like I have clipped them with a scooter IYKIWIM. I thought fibro was more muscular. I can also sleep for 24 hours. And then sleep again. Should I be getting a second opinion?

OP posts:
SingingInTheShithouse · 30/06/2021 16:48

Wow!! Your dd is so lucky she had a mum willing to do research and fight on her behalf! That's amazing!

Thank you, though she's a stroppy assed teen now, so forgets too easily & is in denial so often misses treatment & supplements & makes herself ill. Frustrating & a real worry after what she went through

Yes, there's this really rubbish, elitist, egotistical attitude from some doctors when you are chronically ill and start looking for answers, and they are too proud to say 'I don't know' or take time to do some more in-depth research. Some health professionals would rather gaslight you and the dreaded suggestions for antidepressants, referrals for mental health clinic etc start. I think women are treated quite badly in the NHS overall, treated like we're hysterical, and our hormones and how they relate to autoimmune illnesses aren't taken any notice of.

Oh absolutely, I've had that & then some myself recently & it's clearly sexist assed crap, just putting in a complaint this week about more of the same. It's rife unfortunately

Any improvement in my health is through my own testing with occasional private help. I'm sad to say every single GP I've seen has been pretty clueless and some have been downright rude and I suffered very poor quality of life for years as a result.

Almost ditto here, our GP is now great, but that took a lot of work. She listens & is honest when she doesn't know, which is so refreshing. Rest have been awful though

I've noticed so much attention given to fatigue associated with 'long covid' but virtually none given to people with ME, CF, post flu etc before this.

Me too, though that could be a good thing. ME. Society seem to think so & are sharing posts about it 🤞

Buttercup72 · 01/07/2021 17:49

I agree that fibro is just a go away diagnosis.

I found out online that Small Intestinal Bacterial Overgrowth is believed by some scientist to be what fibro actually is. I got tested privately (nhs treat SIBO but will not test if it fibro symptoms yet) and then got antibiotics off the nhs (ones they use for travellers diarrhoea). After 7 years of hell I’m absolutely fine - apart from being sensitive to gluten as a result of the overgrowth.

Please read online - some great studies were 90%+ participants with fibro were cured after treatment.

I was sceptical bacteria could cause so many issues but, in my experience it has worked.

Hope everyone finds there root cause x

weeme02 · 01/07/2021 17:54

@Buttercup72 can I ask what your symptoms were?

Buttercup72 · 01/07/2021 18:02

I had severe fatigue - sometimes would even eat or drink most of the day because I couldn't face getting up. I had several big flares were I was off for months and then went part time.

I had daily pain - especially deep in my hips and knuckles - but also more random pains, twitches, firework sensations in my ribs.

Brain fog, clumsiness, forgetting my words etc.
Lots of other small symptoms but that was the main 'everyday' symptoms.

DysonSphere · 01/07/2021 18:23

@SingingInTheShithouse.

Me too, though that could be a good thing. ME. Society seem to think so & are sharing posts about it

I really hope there's a positive knock on effect of any research, fingers crossed as you say!

nhs treat SIBO but will not test if it fibro symptoms yet

I believe the official position is one of scepticism. The NHS page only alludes to it as 'Leaky gut syndrome' it might have been updated but it was pretty rubbish last time I looked which was a year ago. Getting the breath test on the NHS is near nigh impossible except for in a few trusts. Most GPs will dismiss it altogether, but with an initial private diagnosis it is possible to get some help.

Honestly the NHS is way behind on many things, because I guess, it has to prove value for money

It's worth investigating why the SIBO happens in the first place and fixing that also.

NotTodaySatanNotToday · 01/07/2021 18:42

@CrunchyKnot

Would it show up in a blood test if I am peri menopausal?

The GP says it has been brought on by a sustained high stress living environment (abusive partner).

I don’t want to take pills for the rest of my life but it’s unbearable without them

I think so, I called my dr about some symptoms and I've been sent for 2 blood tests, prolactin and FSH. If they show something I need another one in 6 weeks. I also have fibro ( diagnosed Oct 21 by rhumotologist) but when I look at peri symptoms I fit those too.
New posts on this thread. Refresh page
Swipe left for the next trending thread