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Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

1000 replies

Katymac · 17/09/2015 11:27

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in Grin

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

OP posts:
moosemama · 21/01/2016 13:26

Apologies for the multiple posts, I was trying to break it all down into smaller, more readable chunks ... FAIL! Blush

HeyMacWey · 21/01/2016 17:51

Just a quick post as I haven't posted on this thread for ages as been struggling a bit, however just wanted to let you know there was a segment on women's hour today about friends and illness - one woman had me and another had fibro/hypomobility/pots. So much of it echoed so many of my feelings about friendships. It was the first item so you don't need to scroll through the whole programme.

murmuration · 21/01/2016 17:56

moose, oh I hate it when Dr's just think you're making stuff up.

Ages ago, I actually missed a job interview as I had long-awaited appointment with an endocrinologist. This was I first getting what I now know are the POTS issues sorted. She basically blew me off, and also spent a bunch of time telling me that I must have been lying about my food intake, as even 'morbidly obese' people metabolise 1800 calories a day, so there was no way I was gaining weight on 1400. Huh. I wonder what she would think now that I'm also eating 1400 and losing weight.

And there's that letter I complained upthread.

Oh, I'm also terribly clumsy, especially when tired. And it seems when I get that way there's some kind of negative feedback, such the harder I try to be careful the more I drop stuff or misestimate distance, etc.

moosemama · 21/01/2016 18:48

HeyMacWey sorry to hear from another one of us that's struggling at the moment. I do think the winter months are especially hard. Thanks for the info about Women's Hour. Can you find it online?

murmuration blimey, had they never heard of BMR. Mine is well below 1800 kcals a day and while I could stand to lose a stone or two I am a long way from morbidly obese.

I was so angry when that neuro just came out and said he didn't think I'd had a blackout because there was no-one to corroborate it. Angry Oddly enough he had no explanation for the fist shaped deep bruise on the inside of my left arm (the side I'd fallen) or the ones all over my ankles and shins, which has been caught up in the legs of an antique chair. Hmm

My Mum popped round this afternoon and while we were chatting, she mentioned a few things from my childhood that I didn't know. First she told me I had clear pre-syncope symptoms and actually passed out when we were living in this house (I have moved back to the childhood home I lived in until I was 7). That triggered a memory of me standing in this living room, with Top of the Pops on the TV and me explaining to Mum that the silver special effects they had on was almost exactly what I see before I faint (sadly not anymore, these days it's just peripheral blurring, greying out and then loss of vision). So that means I have had symptoms since before I was 7. Not sure what that means or if it makes any difference, but it's certainly very interesting.

Oh - and she also told me I used to faint in assembly at junior school pretty regularly. I have absolutely no recollection of this and when my consultant asked about assemblies I told him I thought we must have sat down a lot, as I couldn't remember passing out. Blush

We also did an active stand test on her, as she's struggling with shortness of breath when standing and has had heart and lung issues ruled out with extensive checks. She doesn't seem to have pots. She had a 15 beat rise, dropping to 12 and then slowly back to just above her resting rate - but - she was extremely breathless and trembly. We're running out of ideas of where to go next trying to get her help.

HeyMacWey · 21/01/2016 19:22

moosemama yes it's on the iplayer.

I think the winter is so hard isn't it - I just can't move as well when I'm cold - trying not to have the heating on too much as can't afford it.

Roll on spring time Grin

Badders123 · 21/01/2016 20:36

A gp told me he didn't think ME/cfs existed.
I moved practices.
I don't need such negativity and stupidity,
I struggle very much in the winter too...I am currently in bed rocking a thermal vest, pj top, flanelette pj bottoms and bed socks combo Smile and I'm still cold Sad
Dh away next week with work and I start my new job!!! As a dinner lady!!! An hour a day...about right for my energy levels atm!

moosemama · 21/01/2016 21:02

Badders I'm downstairs on the sofa, feet-up, wearing hiking socks, thick fluffy boot slippers, jeans, vest, sweatshirt, thick aran jumper dress and cardigan. The temperature in here is 21 degrees and I'm cold, even to the point of having chills - all except for my lovely evening facial/neck/chest flushing episode, which I have been trying - and failing, to catch on camera to show my doctor. Even without the flash it doesn't look anywhere near as bad on a photo as it does in rl. Such a pain.

At least the locum gp I saw did at least know what POTs was when I mentioned it, but then again, she said I couldn't have it, because it's rare. Hmm

Good luck with your new job.

Yseulte · 21/01/2016 21:35

A doctor once said to me 'I don't believe in ME'
I said 'Well I don't believe in crap doctors but unfortunately they exist'.

Grin
moosemama · 21/01/2016 21:51

Grin Well said!

I wish I was brave enough to come up with a come-back like that. Unfortunately I am spectacularly rubbish at standing up to doctors etc. I can do it for my dc, but when it comes to my own health I'm hopeless at it. Blush

ladybird69 · 21/01/2016 23:23

moose yes it wears me out having to go behind myself picking up things that I drop or knock over.
why won't Drs recognise these conditions? I too was super fit, was partner in my own business, wife, mother, daughter of elderly mother and now most days I spend in bed exhausted in pain. I know what caused it, I can pinpoint the exact day when I just crashed and burned. I am not 'me' anymore, it's awful, life is going on, things still need doing but my body says no. and no one cares. it's not visual so you must be making it up or putting it on you're just a lazy fat lump (my dxh words)
Flowersto everyone on this thread.

ladybird69 · 21/01/2016 23:42

murmur I am the same I manage to get myself one 'meal' each day ie soup, sandwich, salad etc yet I'm gaining weight!!! how the hell?????
about the brain scans and migraines I've suffered from hormone induced migraines for years is that a trigger? or are we more prone?
I've suffered extreme stress- marriage breakdown, horrific nightmare vicious divorce, bereavement, loss of career/income, house move (from self built dream home) ex insisted on it, over the past 3/4 years, is that the trigger( I think so). yes I am depressed, sad,upset but I think that the fight that I had to go through pushed me over the edge. sorry I didn't mean to offload but some of these Drs don't know what it's in the real world for the real woman.

ladybird69 · 21/01/2016 23:43

Yseulte good come back well done you.

AliceInUnderpants · 22/01/2016 09:38

My GP is hugely supportive as, 'fortunately', she suffers from chronic pain and hypermobility herself. However, my first appointment with my neurologist left me in tears as she suggested my symptoms were "a physical manifestation of anxiety"! This is the same neurologist who reluctantly agreed to a brain MRI (without bloody contrast!), then a follow up, then decided that my lesions require a lumbar puncture!

moosemama · 22/01/2016 09:55

ladybird Flowers

Alice I've never had an MRI with contrast either. I've had 5, now and each time they say contrast isn't necessary. The last one was done on a machine of a much lower grade than the others too, hence blooming Locum Neuro declaring my scan miraculously 'normal', despite having 4 others over a 6 year period that weren't.

AliceInUnderpants · 22/01/2016 10:09

I'm just pissed off about no contrast. The lesions were on the first MRI scan too, and now she wants to do the LP to see how old they are. Apparently if they'd done the repeat MRI with contrast that would have indicated if they were recent. It just feels like the LP is unnecessary for something causing me a lot of stress Sad

murmuration · 22/01/2016 10:17

My MRI had no contrast either. I wondered about that, as everything I saw online suggested that for MS you needed contrast. Now wishing I'd gotten the MRI in the US back when it was offered ten years ago, but I couldn't afford it then, and MS was a highly unlikely diagnosis - never imagined things would still be going on ten years later! Should have skimped and saved or something.

moosemama · 22/01/2016 10:55

I think they avoid doing contrast MRIs, if possible because a) they're more expensive and b) there is a potential for the patient to be allergic to the dye. Both my mother and mil have had reactions to the contrast dye, my Mum knew she was allergic to seafood, which is apparently a component but they forgot to inform her of that. Mil has never been allergic to anything, but still had a scary reaction to it.

I was pretty sure it wasn't MS in my case anyway, as the location of the lesions was too diffuse and although there were some close to the MS pattern, none of them seemed typical enough to me. I do think mine are down to either migraine or cerebral hypoxia:

"The brain requires approximately 3.3 ml of oxygenated blood per 100 g of brain tissue per minute. Initially the body responds to lowered blood oxygen by redirecting blood to the brain and increasing cerebral blood flow. Blood flow may increase up to twice the normal flow but no more. If the increased blood flow is sufficient to supply the brain’s oxygen needs then no symptoms will result.[6]

However, if blood flow cannot be increased or if doubled blood flow does not correct the problem, symptoms of cerebral hypoxia will begin to appear. Mild symptoms include difficulties with complex learning tasks and reductions in short-term memory. If oxygen deprivation continues, cognitive disturbances, and decreased motor control will result.[6] The skin may also appear bluish (cyanosis) and heart rate increases. Continued oxygen deprivation results in fainting, long-term loss of consciousness, coma, seizures, cessation of brain stem reflexes, and brain death.[7]"

Sounds suspiciously like POTs to me, although obviously with POTs, as soon as you collapse or lie down the hypoxic episode ends, so there's no danger of it progressing to coma or brain death etc.

My big blackouts in 2012 (two back to back) involved seizure-like jerking and were mistaken for seizures by the Acute Medical Unit at the hospital. I assume this was due to prolonged hypoxia. I don't know if any of my previous blackouts included the jerking, as typically, I was alone for quite a few of the worst ones and not near anything that would cause bruising. The 2012 ones were in a very fancy hotel bathroom, with antique furniture like chairs and wash-stands. I was black and blue after those ones. Fortunately I haven't blacked out since and we think we know what precipitated them, so I won't be repeating the experience.

W3ndysims · 22/01/2016 20:13

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LivingInMidnight · 22/01/2016 20:46

I don't know about anyone else but I have enough numbing and tingling to be going on with wendy Hmm

Yseulte · 22/01/2016 20:48

Reported spam.

Don't you have the ethics not to try to sell products to ill people with lies?

LivingInMidnight · 22/01/2016 20:50

I'm not sure if I posted on here before, but I have fibro and hypermobility. I just got passed over for a job because of it (not said outright but made pretty obvious). Feeling pretty low today.

W3ndysims · 22/01/2016 20:56

Ha... Living in midnight... That's what my hubby said as well... It was just something that helped him... Sometimes.. Depending on what pain he has at any given time.

Badders123 · 22/01/2016 21:08

Reported too

Badders123 · 22/01/2016 21:18

My fibro - or whatever it is - is really playing up atm
No idea if it's cold related...could be?
Such pains in my shoulders and hip. Been taking paracetamol all day
Headache too
X Ray of thigh last week was OK thankfully

Badders123 · 22/01/2016 21:22

I've had contrast ct scans done twice
I'm allergic to shellfish but never had a reaction
It uses iodine I think?

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