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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:
AliceInUnderpants · 28/10/2015 22:32

I hate that people still think like that article. I hate that people will still read that article and believe it. It sucks Sad

Yseulte · 29/10/2015 10:47

I simply do not care any more what people say any more, just ignore it.

I know what I've had to deal with, I know what nonsense some doctors talk.

fuzzpig · 30/10/2015 00:12

I hope I can learn to ignore that stuff. I nipped into work today and it was painfully clear which colleagues 'believe' and which don't.

AliceInUnderpants · 30/10/2015 11:36

It's horrible isn't it fuzzpig?

I don't work, but do get grief from the likes of the Parent Council at school - they think I should be available constantly because I don't work, instead of considering the reasons why I don't!

HoneysuckleAndJasmine · 30/10/2015 20:17

That article is rubbish. I have pretty much fully recovered from ME/fibromyalgia because of not pushing too hard and listening to my body not setting GET targets. I'm so grateful that my neurologist told me this early on. And for the fabulous advice from mumsnetters (waves thankfully at Magiso)

Sorry to interrupt your thread but No-one should be made to think they're not trying hard enough to get well if they don't engage in GET bullocks.

HoneysuckleAndJasmine · 30/10/2015 20:19

I mean bollocks! Oops

Citrasun · 31/10/2015 12:43

Hi everyone, I started posting at the beginning of the thread, but have not been MNing recently. As a recap, I have ME/CFS and am mild to moderate. I'm currently in a bad (for me) relapse and have spent the last two weeks mainly lying on the sofa watching trashy TV.

I'm lucky in that DH and I have our own businesse, so I can be flexible, but it does have it's own issues sometimes. For example our VAT return was due on Friday, so I had to do a few hours work, despite feeling dreadful, as only I knew what needs doing.

Just a few thoughts on then thread. I recently saw Dr Myhill give a talk & she was highly inspirational. I'm not sure that I agree with entirely everything she says I.e. She is very pro eating a paleo diet, but although I've tried it, I seem to feel and function better with a slightly higher carb intake and some dairy. Her main point was about mitochondria and how CFS patients have much lower amounts than most people. She also talked a lot about how convential doctors treat symptoms rather than finding a cause.
She recommends taking supplements to improve mitochondrial function, along with diet and pacing to help with CFS. She was qute clear that its not an miracle cure, but said most of her patients improve considerably.

She also said that although she is too busy to take on new patients, you can go onto her website and order blood tests that we can use to help ourselves.
I intend to do this once I'm back to my 'normal'. I have started to take the basics supplements that she suggests, so will keep a log of how I feel.

The other interesting comment on the thread was links to ASD, as my DS1 has ASD, ask well as numerous others members of my extended family.

I was also disgusted and really cross about the telegrapgh article. My DH told me not to get worked up about it & said anyone who knows me, knows how real it is. But as I pointed out to him, how can we expect investment and research into the causes, and hopefully a cure, if it is still being questioned as something that a bit of exercise and positive thinking will sort!

Sorry, a much longer post than I meant to write!

Yseulte · 31/10/2015 23:00

The way I see it, it's just like racism.

Some people are ignorant about race, some people are prejudiced, some are both.

The Telegraph article is both ignorant and prejudiced, so don't take it personally. It's not as if anyone involved knows what they're talking about.

SofiaAmes · 01/11/2015 16:23

Interesting you should say that Yseulte. I am now getting much of the care and accommodations that my ds needs by threatening to sue (I'm in the usa - this threat works) on the basis of discrimination against someone with a disability and the violation of his civil rights.

Citrasun · 01/11/2015 18:53

The thing is "Yseulte" the Telegraph wouldn't get away with printing a racist or homophobic article, so why should they get away with this. The annoying thing about the article wasn't just that it was reporting on a highly dubious trial, but they actually misreported the results of the trial. I know we shouldn't worry about it & that the papers spout rubbish all the time, but it can be incredibly damaging.

Yseulte · 01/11/2015 19:17

The Telegraph gets away with printing sexist stuff and to be honest I've seen stuff that's knocking on racism too. Why not this?

There's masses of misreporting of scientific, medical issues in the media, not just CFS to be fair. And there's misrepresentation of disability issues too.

Yseulte · 01/11/2015 19:20

Btw I'm not denying it's extremely damaging, I've lived this illness for 25 years, and I'm still gobsmacked by medical ignorance let alone the media.

But it doesn't bother me like it used to.

You know what you've experienced, fuck everyone else!

Good luck Sofia btw, I hope you can get everything your son needs.

KinkyDorito · 01/11/2015 21:02

Marking place

Citrasun · 02/11/2015 08:23

I know you're right Yseulte (and apologies as I've just realised that I put you name in quotation marks in my earlier post - brain fog!) and it really isn't worth wasting any energy on this type of crap.

KinkyDorito · 02/11/2015 17:28

Signed off for another fortnight and feeling really fed up. Just want to be back to normal.

Occupational health seemed to think it was rare for people with Fibro to work, which has made me anxious.

I think I need to learn the condition and my limitations, just hope that I will still be working. I can't afford not to really.

AliceInUnderpants · 03/11/2015 14:23

Sorry you've been signed off again Kinky Obviously for a reason, though, so please rest up!

A friend of mine has been diagnosed with hypermobility this week from rheumatology. She showed me the tests that were done on her and says she's as certain as she can be that I am also hypermobile and that could be contributing to a lot of my pain. Is it worth mentioning to my GP? I know it's a slightly different 'treatment plan' that with fibro.

AliceInUnderpants · 03/11/2015 14:24

*than with fibro

HeyMacWey · 03/11/2015 14:43

Just posting quickly as really suffering atm, but has everyone signed and shared this petition re: pace trial?
my.meaction.net/petitions/pace-trial-needs-review-now

AliceInUnderpants · 03/11/2015 15:46

Signed.

Yseulte · 04/11/2015 11:38

Signed.

Good article on the weekend:

www.telegraph.co.uk/wellbeing/health-advice/me-and-me/

AliceInUnderpants · 04/11/2015 14:52

That's a much better article Yseulte

KinkyDorito · 04/11/2015 15:48

I would mention the hypermobility Alice, it will bring its own issues and you should be getting treated for it. Thanks

fuzzpig · 04/11/2015 16:08

I haven't caught up with the thread, but just wanted to say I was diagnosed with Aspergers - thought I'd mention it as we were talking about the links to CFS earlier in the thread! The assessment was utterly knackering - slept all afternoon - but really glad I did it.

Spoons to all x

AliceInUnderpants · 04/11/2015 16:34

Thanks Kinky. I have an appointment booked for Friday morning.

fuzzpig How are you feeling about your diagnosis? Give yourself time to let it sink in. A friend of mine has been diagnosed with Aspergers and ADHD in her 40s and it's been a tough journey. I understand the thought of the assessment being exhausting with experiencing it with my DC. I have my first appointment with the clinical psychiatrist on Dec 30th

KinkyDorito · 05/11/2015 08:25

Strange about the Aspie link. I'm suspicious that I am. DD is and DS is currently being investigated. I had many issues when I was younger. I've ironed some of them out but there are many things I still find difficult. DD (17) and DH both think I am, but I realise they aren't really qualified to make a DX Grin.

I'm pleased for you fuzz, I'm sure it answers a lot of questions for you.

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