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Original poster

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:
PurpleDaisies · 17/09/2015 23:37

Forgot to say, thanks for the support the other purple and you're most welcome on this thread. Smile

Groovee · 17/09/2015 23:40

Been diagnosed with fibro for 6 years! Struggling just now. Gentle hugs to you all X

TheExMotherInLaw · 17/09/2015 23:41

Hi. ME, fibro, osteoarthritis and some badly herniated discs here!
I went downhill slowly for years, then a major crash 3 years ago when I had an exceptionally bad sore throat on holiday. Interestingly, one of the others on that holiday who went down with the sore throat has also been diagnosed with ME. I'm an empty nester, dh is retired and looks after me - I potter about, and do what I can.

fuzzpig · 17/09/2015 23:47

I'm sorry to everyone suffering. I know sympathy doesn't help, but I am, I wouldn't wish this on anyone, nor on the parents here who are seeing their teens go through it. Thanks

I've already phoned in sick for tomorrow, and yet again I was asked how I can possibly home ed when I'm ill. Facepalm. If they knew the state I'd be in after every single school run (an hour on my feet walking between home and two schools and waiting around... twice a day rain or shine) - collapsing on the sofa, usually in tears, unable to move for a couple of hours - they'd know it was a crazy question. And that's without the stress of dragging two unhappy children into a school they didn't feel safe in, the meltdowns they'd have every day after being stuck there, the constant worry about the bullying. Things are SO much better since we started HE, but because my health has worsened again the managers seem convinced HE is to blame :( it really really isn't.

HE is beautifully flexible, if I'm having a bad day the DCs love bringing their work to the sofa and snuggling up with me, and when I need a rest they go and play. I guess people think I'd need to be just like a teacher, but it's nothing like that - it's only 2 kids I have to help, not 30, it's a world apart and actually doesn't use much energy. In fact it helps me because it exercises my brain a bit as I love coming up with ideas. There's only been one day lately where I've really had to not do any HE at all, which was Tuesday when I'd pretty much lost my voice. They had a Lego/DVD day.

Cold doesn't seem to have been too bad though, touch wood it's not gone into my chest this time and I'm over the worst. Horrific head/neckache though, can't move my head really and nothing is shifting it. I am getting sick of the 'one thing after another' feeling. The reality is that I'll lose my job soon, it's becoming more and more unavoidable :(

/end rant, sorry.

WeirdCatLadySaysFuckOffJeffrey · 18/09/2015 07:54

Morning all. Hugs all round and a hope for an okay day x

fuzzpig · 18/09/2015 09:57

Hi Weird :) hugs to you too.

Still off work but at least I've picked up my letter proving my diagnoses - work had insisted on it. Don't know why since they already have letters Hmm but at least they didn't charge for it, I'm sure it should've been £15. The GP made a comment on it about giving me amended duties too.

But I've just had it confirmed that we need to go to the next stage of absence management. I just don't have the energy to be upset about it really. The only really depressing thing is that there's a special event coming up that is like my 'baby' IYSWIM - my idea, my plan etc, it's all coming together brilliantly thanks to the specialists who took it on, and what if I miss it? :(

Oh well got 3 quiet days in a row now.

Sending spoons to all. Although that sounds really weird if you don't know Spoon Theory

Citrasun · 18/09/2015 13:58

Spoons gratefully received Fuzzpig. It's good to hear that you have an understading GP.

A minor crisis in our business today has had me rushing around on adrenaline. A great way to cope and get things done today, but I know I'll pay for it and have to rest up all weekend. Thankfully we have no plans for the weekend.

Hope everyone else is coping.

fuzzpig · 18/09/2015 22:08

Ooh I hate that 'I'm gonna pay for this later...' feeling! Hope it's not too rough on you.

Does anyone here get the flu jab? Every year I've dithered and ended up not getting it, as I am just not sure. On one hand, if I get flu I am utterly screwed - it was flu that kicked off my first big flare up in 2012 so obviously I'm scared of it and luckily haven't had it since then - but on the other, I've spoken to people who are sure their symptoms were made far worse or triggered by the jab (because of the way it 'tricks' the immune system, which is messed up by illnesses like CFS anyway).

[rock] me [hard place]

Any thoughts please?

icklekid · 19/09/2015 02:27

I got flu jab when pregnant and will hopefully get again this year if I can face it! (Hate injections! )

Know that adrenaline feeling. Had an awful day at work on wed colleagues were very unprofessional in a meeting and I was quite shaken by it...starting to recover but dreading mon already. Insomnia is back too. Totally exhausted

Pleasemrstweedie · 19/09/2015 09:28

If you can avoid the flu jab and instead take basic precautions, wear gloves when you're outside the house, wash hands when you come in, stay away from people who are ill etc and protect your immune system with a daily dose of vitamin C, you'll be better off than if you hit your system with the jab.

It's also important to ensure that your vitamin D levels are good. Supplements are cheap and the benefits are remarkable.

gingerbiscuitandacuppatea · 19/09/2015 09:47

I had a flu jab a couple of years ago and it caused a relapse that lasted over a month. I won't be having one again. Last years was only 37% effective anyway, so I don't think it is worth the risk. The ME Association is going to update its advice on flu jabs soon, be interesting to see what they say.

fuzzpig · 19/09/2015 10:02

Thanks for the replies :) it's a relapse that scares me the most, since I'm already mid flare up! I didn't realise that it had a low success rate either.

I do need to get back on with the vitamins. I'll see what's in the cupboard as anything new will have to wait til payday!

I'll keep an eye out for the new advice - it'll be good to have something official, as I'm really worried that if I got flu then my managers everyone will be all 'well you should've had the jab shouldn't you' IYSWIM! I don't mind injections at all, and I guess I'd get it free anyway, so it's really just the fact that I can't predict if it'll mess up my immune system... it's irreversible if something goes wrong. But then catching flu is too. Hmm.

This virus was just a cold that thankfully didn't spread to my chest, I'm just back to sniffling a bit now but the muscle aches are pretty intense. But it's laundry time now.

WeirdCatLadySaysFuckOffJeffrey · 19/09/2015 11:04

Dd has the flu jab every year and doesn't have any after effects.

overthemill · 19/09/2015 14:20

Our specialist in CFS says have the flu jab. Last year had no ill effects ( that we could tell). He says far far better than getting the flu. We all have one - us free as her carers, her brother because of asthma anyway and sister as I pay plus her boyfriend as we just can't risk bringing flu in. We also don't allow anyone in the house with sniffles or bugs of any kind - her immune system is so low ( alms it's always neutropenic) we take no risks at all

futureme · 20/09/2015 15:43

I get the flu jab as getting flu would be so difficult for me and take far too long to recover from.

Citrasun · 23/09/2015 07:30

How's everyone coping today?

I had a nice relaxing weekend and recovered nicely from my overdoing things at the end of last week, but have now caught a cold. I hate getting colds as they don't follow the normal 'cold' pattern that I used to get. Instead I am just bunged up with aching sinuses, sore throat, headaches and muscle aches that can last for weeks.

I had been shying against getting the flu jab, as I feel it could make me worse. I can't imagine how bad I could become if I actually got the flu though.

fuzzpig · 23/09/2015 10:59

That's the thing isn't it, it's the Big Unknown either way. Do I risk getting the flu, which would definitely make me very ill IF I got it, or do I get the jab which might make me ill NOW?

I'm very grateful for everyone's responses and experiences about it BTW Thanks I am still mulling it over. But due to current circumstances (see below) I may take a chance on it this year since I'm going to be off anyway.

Sorry about the cold, Citra :(

I'm off again, I went back for a bit but couldn't handle it :( I'm seeing the GP later and will let them sign me off for longer this time (as she already wanted to, but I was silly and stubborn and said no Blush).

I think, in terms of my job, this will be the beginning of the end.

KevinAndMe · 23/09/2015 14:51

As I said before, this is very early days for me.
The counsultant I saw confirmed the 'diagnosis' a few weeks ago and told me a few 'tricks'/lifestyle advice to get better.

I feel that been able to say 'I'm ill and I have a diagnosis' is making a huge difference for me. If I stop and rest, it's not because I'm lazy (Im looking at you DH!) it's because I'm ill.
Now that Ive been allowed to rest (or allowed myself) to not always be on the go, it seems that I can look after my spoons better iyswim?

KevinAndMe · 23/09/2015 14:52

Re the flu jab, I wuld look at whether it will really protect you or not. There was a lot last year about the fact it's actually protecting very few people from the flu.
So I would wonder if getting the jab is worth it with that in mind too.

fuzzpig · 23/09/2015 16:44

I think the strain of flu mutated or something last year, partway through the season (I'm crap at science though so don't hold me to that!)

I'm glad having a diagnosis is helpful - when an illness is so invisible it's hard because people might think we are making it up or exaggerating. Being able to say 'I have this' is good. I do sometimes wish it wasn't called Chronic Fatigue Syndrome though, as I don't think the name accurately reflects how bad it is and how it's not just being tired!

I hope your DH can become more supportive.

I have seen the GP and she was so lovely. She signed me off for a month in total so I'll be back towards the end of October if I can. IF.

KevinAndMe · 23/09/2015 19:01

fuzzpig that's great re being signed off. Sometimes you DO need to take the break and rest says fer who haven't been able to do so until now...

Pleasemrstweedie · 23/09/2015 19:02

The flu jab in any one year is based on the virus that was around the year before. It's a live vaccine, so that's inevitable. It's also the reason why you can have the jab and still get flu.

It's worth asking yourself honestly how many times you have had flu in your life? DH and I have never had it.

lastuseraccount123 · 23/09/2015 19:03

Hi all waves

I had this badly in my early 20's and spent 2 years off work. It was horrible and frustrating.

lastuseraccount123 · 23/09/2015 19:05

mostly "recovered" now but when I get sick, I am floored and have to sleep sleep sleep - the OH is frustrated by it but i'm like, if I don't take care of myself now I could get really ill again.

Chronic illness blows.

overthemill · 23/09/2015 19:06

For us we think the flu jab is worth it - dd has had swine flu plus flu most years of her life ( one of the markers for predisposition to the illness so apparently ) as well as chicken pox twice and all manner of other things! So we all have the jab and pray

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