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CFS/ME/Fibro/spoony support thread 2

447 replies

LivingInMidnight · 19/04/2016 21:57

Old thread here

OP posts:
bootygirl · 19/02/2017 11:23

I have fibro ten years now first three were the worst. But I have worked part time for last seven. I also have endometriosis ovarian cyst and fibroids.

I have 2 teen DS both have ADHD and younger lad has Aspergers..

DH is overseas and I am struggling at the minute with running a home, kids and job.

Not being negative 👎 just very sore today! Triggered by using a steam cleaner on floors yesterday 🙄

CFSKate · 21/02/2017 21:17

interesting video research update

MyVisionsComeFromSoup · 03/03/2017 14:37

Hello, I'd like to join if I may? Diagnosed with fibro a couple of weeks ago (although the consultants letter phrases it as "you have x,y and z symptoms, and we would generally refer to this combination as fibro". Just got back from the hospital having had lots at least a million vials of blood taken, but at least she's being incredibly thorough in case it's actually something auto-immune or inflammatory.

EDS/JHS in the family, although I'm "just" hypermobile, and she didn't seem impressed with my flamingo knees which are much better than DD2s (who has a "proper" EDS diagnosis") Grin.

Has anyone come across book? I've only just started reading it, but it seems to go into a lot of depth about diet, vitamins and supplements. What makes me cautious, is that in her other book "Living with Fibromyalgia" she advocates homeopathy, and this one talks about leaky gut which is not necessarily an actual thing, so I'm wary of making massive dietary changes on the basis of one book ifswim?

bibbetybobbetybooo · 05/03/2017 01:01

Place marking whilst exhausted so I can read properly tomorrow x

CFSKate · 06/03/2017 21:23

London conference agenda June 2017

CFSKate · 06/03/2017 21:26

Colloquium agenda

CFSKate · 12/03/2017 21:48

petition.parliament.uk/petitions/166601

fizzingwhizbee · 12/03/2017 23:46

Hello

May I join you all?

I have MS, diagnosed in June 2014. Currently pregnant with DC2. DC1 only just turned two. So it's hard work.

Chronic illness can be a lonely place to be. It's good to find support where you can.

Hope you're all as well as poss

bootygirl · 13/03/2017 14:59

fizzing welcome!

I have endometriosis for thirty years its autoimmune & fibro ten years. Feeling sorry for myself today! Had to ring in sick today as had a bad night/morning/day. I have worked part time for seven years but sometimes I can't even manage the four hours 😔
I feels like I am letting everyone down, I ve 2 teen DS's. With ADHD & youngest has Aspergers. They are not doing well at school at the moment and I feel it's my fault for not being more on top of it..
Really struggling at moment cos my DH is overseas & I am doing all alone.
Sorry I did nt mean for this to turn into a pity party 😳😳😳

InFullSail · 18/03/2017 14:58

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

CautionHormone · 20/03/2017 00:34

Hi all,

I was wondering if I could join?
I've been diagnosed with Fibro for nearly a year now. Not pregnant/don't have a child, although I hope to in the near future, & would like more info (if possible) about how pregnancy affected you & your conditions...

Hope you're all as well as can be! 😘

VelvetGreen · 20/03/2017 15:44

Hi Hormone! I've had fibro for 30 years now and the one and only time i have been completely free of symptoms was during pregnancy, especially after the first trimester. It was actually one of the things that helped me get a clear diagnosis. It is apparently not uncommon but it certainly doesn't happen to every sufferer.

The birth itself however was hard to manage and afterwards as my symptoms returned was like being repeatedly whacked with a large shovel. Pregnancy was wonderful though - my dh has often said it was like i was a completely different person - it was a little glimpse of me as i'd be without this condition.

Happydappy99 · 20/03/2017 15:50

Please may I join? I've just been diagnosed with CFS and am bit lost to be honest. My GP emailed me over a link to patient info on the condition but didn't give any other info. Will go and read through the thread

WoodYouBeHappy · 22/03/2017 12:38

Good article CFSKate. Have read this viewpoint so many times before. How many of these will need to be released before the world changes the way they think about ME/CFS?!!!

me-pedia.org/wiki/Welcome_to_MEpedia

Just came across this. Apologies if it's already been linked

Have a good day everyone Flowers

CFSKate · 22/03/2017 15:56

Happydappy99 hello, I posted these earlier but will put them here. This thread is named after the spoon theory -
spoon theory described on South African news about ME

That news report features Ron Davis whose work is detailed here

guidelines for ME

the above is on the Invest in ME website. They are also setting up a Rituximab trial after successful small trials in Norway.

A really big ME forum is forums.phoenixrising.me/index.php

SplitInfinitive · 24/03/2017 13:48

Can I join please? I have CFS and suspected fibromyalgia. I've undergone every conceivable test for the past three years with no positive outcome. I saw a rheumatology consultant at hospital a few weeks ago, who says she is pretty sure it is fibromyalgia but had to eliminate other things first.

I used to be quite fit but now I can barely manage the five minute walk to school and back. I am permanently exhausted, can't manage housework any more, am asleep in the evenings often before the DC go to bed.

A few months ago I suddenly developed pain in both elbow joints which won't go away. The GP suggested tennis elbow but another doctor has said it's a symptom of fibromyalgia. The pain is often so bad I can't even lift a mug of tea :(. And then there's the headaches, burning foot pain, aching knees, hip, chronic back pain and just when I thought it couldn't get any worse now I have palpitations which started two days ago and are worse when I try to lie down to sleep.

I have a return appointment with the consultant in just over a week's time but I'm not hopeful that she will be able to do much to help. Is there anything I should be asking her specifically? DH will be coming with me but I'm not convinced he really gets how bad I feel.

I know I've rambled on a bit and I am slowly working my way through the threads. It's helpful to find others who have the same/similar problems. Trying hard not to feel teary and depressed but it's so hard :(

KinkyDoritowithsparkleson · 26/03/2017 12:05

Is anyone else Hypothyroid with Fibro. I have DX for both and have burned out recently. I've had to give up my career; I'm managing a bit of work on evenings but I can't do much during the day. I'm at the stage of not being able to walk out of the house in case I can't make it back Sad.

My levo dose has just been doubled, so hopefully that will help, but I'm wondering whether anyone else has any other methods that they use to help themselves?

NancyWake · 26/03/2017 17:05

If anyone with CFS/FM or MS would like an infrared portable sauna as recommended by Dr Myhill, or knows anyone who is looking to buy one, I am selling one that I bought for my mum.

She's hardly used it as her arthritis is so bad that she found it difficult to get in and out of it (she's 80).

Feel free to PM me.

SplitInfinitive · 28/03/2017 13:02

I have a question about palpitations and their connection with fibromyalgia. At the weekend I was taken into a&e after experiencing three bad days of palpitations with no let up. The out of hours gp service said that was too long and wanted to check nothing else was going on. I got checked and had ecg, bloods etc and nothing untoward found. But they said to make an appointment with my own gp on Monday if still getting palpitations.

I saw gp yesterday and she pretty much dismissed me as a paranoid hypochondriac with anxiety. That made me cross because as I pointed out to her I was only anxious because I had unexplained continuous palpitations which were making me feel exhausted, dizzy and nauseated Confused. She even queried why I had been referred to a rheumatology consultant for the fibromyalgia, saying that they normally diagnose it at the surgery. Well I didn't think she was being terribly helpful there (was a previous gp surgery where we used to live who had made the referral).

So my own theory (which seems as good as any :)) is that the fibromyalgia shifted from elbow joint pain to heart palpitations on its journey of attacking joints and muscles in turn. The palpitations have eased today but I have the elbow joint pain back and an evil headache which won't shift despite four ibuprofen today so far. Am I sort of on the right track here or wildly wrong? I'm guessing that fibromyalgia symptoms are different for everyone anyway.

I also have an underactive thyroid and am on medication for that (levels have been checked very recently).

NancyWake · 28/03/2017 15:10

Does your GP know anything about POTS, and have you been tested for it? Was your BP normal?

My GP also referred me to a rheumatologist to diagnose FM, (I didn't know GPs were qualified to do so.)

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