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Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

(1000 Posts)
Katymac Thu 17-Sep-15 11:27:36

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)

CaptainSubtext Thu 17-Sep-15 11:36:39

Hi Katy smile thanks for the fluffy thread. I was on a Spoons thread a while ago under a different name but stopped posting as I just kept denying that I was really ill, I was shying away from it IYSWIM? But I need to be more honest with myself.

I have a diagnosis of CFS (oh how I hate that name... like I'm just tired eh? hmm) and another condition called POTS (postural orthostatic tachycardia syndrome).

Currently working very minimal hours but starting to feel it's not practical anymore. Even the easiest of shifts leaves me in pain, dizzy and exhausted. I have no life. I'm now off sick yet again and have failed my absence targets, so I don't think I'll last much longer sad it sucks as I love my job.

I'll stop droning on now. blush


futureme Thu 17-Sep-15 11:36:48

HI Katymac - I'm coming across from the other thread! I recognise your name - is it your daughter who is the dancer?

I "forget" I have me/cfs and my husband picks up the slack and I get cross with myself that I'm not on top of the house/finding work/retraining/life.... Then I remember its this. It just feels like such a "nothing" diagnosis in terms of why and how to recover!

Luckily I'm not housebound like when I first had it (2007) and can walk 10-15mins without too much trouble most days on the school run. I also "crash" often though.

Katymac Thu 17-Sep-15 11:47:14

Captain that kind of negativity is fine - it's the 'other' sort I don't want grin
I went Self-employed which helps me

Futureme - Yes DD is away at Performing Arts college and a dancer

I think it's important not to forget & deny this sort of condition - although I too am guilty of it - better days come with acceptance and adjustment imo

PurpleDaisies Thu 17-Sep-15 11:53:24

I'm another refuge from the other thread! I'm having a rotten couple of weeks-diagnosed a few years ago, steady improvement (currently working part time hours self employed and managing to exercise) but as usual just as I think I'm back to normal again I have a relapse and feel rubbish again. It's a combination of a busy end of school holidays and a cold that's floored me.

I'm totally exhausted at the moment, trying to rest but can't seem to switch off or think straight. Really hoping this doesn't last too long.

I'm really glad there are others who get it (even though I wouldn't wish it on anyone).

fuzzpig Thu 17-Sep-15 11:55:11

Thanks Katy smile and hi Future smile

I am started to get some self employed work by tutoring - not doing a lot at the moment but it's good to know that if my job does fall through I have something more flexible and physically easier (and much better paid in terms of hourly rate) to fall back on.

I think I know which other thread is being referred to - I did have a look but on reading the OP I closed it, I didn't want to read any more! If I was in a better place I'd be arguing against the negativity too but due to the work issues I'm pretty wobbly ATM.

Acceptance is vital, I learned a lot about that in group therapy (I had a package of treatment at St Barts in London), we did mindfulness training which has helped with my MH issues as well.

fuzzpig Thu 17-Sep-15 11:56:06

Oh well that namechange failed didn't it. Crap. blush I'll just stick with fuzzpig then!

fuzzpig Thu 17-Sep-15 12:02:00

Hi Purple sorry you're down with a cold too, I'm the same. Been without one for several months which is very unusual - it was an unexpected benefit of the DCs no longer going to school I think as they no longer bring all the germs home (we started Home Ed in February) grin

But it is horrible how something as simple as a cold, which many people can work straight through, can build up to something really horrible if you have something like CFS. It's like I can literally 'feel it in my bones'!

fastdaytears Thu 17-Sep-15 12:15:24

Thanks for starting this! So good to know people understand

PurpleDaisies Thu 17-Sep-15 12:22:17

Thanks fuzzpig. I'm sure it'll go-the timing is rubbish though. I'm a private tutor too (started after I was well enough to do something but not well enough to be back in school) and I've just picked up a few new pupils. I absolutely hate cancelling sessions, especially when I haven't really got to know them. I'm really dreading some A level tomorrow that is a tricky topic at the best of times, so doing it with fuzzy brain won't be much fun. We'll see how it goes, it might have to be a reschedule.

KevinAndMe Thu 17-Sep-15 12:33:08

I've just been diagnosed with ME after years of feeling rely tired but still ploughing through as best as I could.
I ended up going to see my GP last spring as I felt I was getting worse and that my DH clearly though I was just being lazy. I just couldn't stand anymore comments on how if I was exercising a bit I would feel so much better!!

I'm very slowly coming to terms with the idea and most importantly to how we live our life as a family having two very energetic/outdoorsy children, it's hard to find things we can do altogether so I'm not left at home all the time whilst they go out and enjoy themselves.
It's nice to hear frompeoe with simar issues though.

futureme Thu 17-Sep-15 13:25:04

Another tutor here.... bit of a pattern! I teach Adult ed GCSE at the moment and havent a clue how I used to teach A level. I'm not really sure my mind was ever good at memory issues. I'm seriously thinking I might not be capable to return to teaching. Especially as the stress etc it causes aggrivates energy issues.

icklekid Thu 17-Sep-15 13:34:18

Whispers hello

Had CFS horrendously a few years ago, very slow steady progress and been doing well recently however after an awful day at work am feeling pretty awful again today...coping with a 1 year old now is making life much harder sad can see the TV may be on this afternoon...

PurpleHairAndPearls Thu 17-Sep-15 13:43:49

I don't suffer from ME exactly so I'm not really here grin I just popped in to say I was on that other thread, and like many of you I'm sure, reported the OP. MNHQ said they will be dealt with, so hopefully Olivia is bollocking them giving them guideline advice right now smile

We all have enough crap to deal with without goady fuckers. Just wanted you to know that there are people without the condition that do understand smile

claraschu Thu 17-Sep-15 13:54:05

Hi Everyone, my 13 year old daughter had a year of hell suffering with CFS. I never thought such a devastating problem illness could attack her, a lively, healthy, strong girl with an excellent diet. She had a post viral reaction which turned her into a person with so many weird symptoms who lacked the strength to eat, walk across the street, watch TV, or brush her hair. I followed some of the old threads on here, but never posted as it was too difficult for me.

I am writing because she is completely better. I know how annoying and unhelpful it is when people talk about what you should do to get better, without having any understanding, but I thought our experience might possibly be helpful to someone...

After trying all the woefully nonexistent conventional advice, my daughter was helped by a wonderful doctor in London who is both traditionally and naturopathically trained, and who agrees with Dr Sarah Myhill about some of the treatments for CFS. If anyone is interested please PM me.

It is good to see this thread starting up, especially after some of the terrible things I have read recently-

Citrasun Thu 17-Sep-15 14:55:13

Hi, lovely idea to have a supportive thread.

I have ME/CFS. I was only officially diagnosed during a long crash a year or so ago, but realise that I've suffered with ME, on and off, since a bout of glandular fever in my early teens.

I run a business with my DH, so am lucky in that I can work flexibly, & have 2 DC who are 11 & 13, so able to fend for themselves (and me!) if need be.

I'm also feeling pretty crap with a cold that just exacerbates my ME symptoms too.

overthemill Thu 17-Sep-15 16:04:49

Hello! I have a severely affected dd now 16 who is totally bed bound, can't speak, can't eat, can't sit up, can't brush her teeth, doesn't know her own name etc etc. it's very very hard. Had 17 weeks in hoppy and nursing home recents but we had to come home because it was awful for her hypersensitivities: noise, light, smell, taste and touch ( can't hug her as it is agony for her). Waiting to see what hell the CCG puts us through next in their efforts to prove I have made her ill through my desire for attention. I didn't like the other thread much

WeirdCatLadySaysFuckOffJeffrey Thu 17-Sep-15 17:35:22

Hi everyone <wanders in and passes around cake and brew>

Am I allowed in? I don't have CFS myself (I did have ME back in the early 90's when it was delightfully referred to as 'Yuppie Flu') but my darling daughter is 14 and has suffered from CFS since she was about 7.

We had a hellish few years pursuing a diagnosis and ended up having to home educate as school were spectacularly unhelpful.

Dd is under Dr Crawley and her team down at Bath which is good (that was a battle to get our local PCT to sort that). Dd also has hypermobility and depression/anxiety (from the shit that is CFS).

She has just started at a local college part time doing three GCSEs which she is loving but really takes it out of her. It's only three afternoons a week but is probably going to be too much for her (she does nothing else).

CFS sucks ass. It's not fair. My poor girl was so bright and bubbly and CFS has ravaged her and completely sucked the life out of her. We have no idea whether this will be her lot in life or if she will somehow get better.


WeirdCatLadySaysFuckOffJeffrey Thu 17-Sep-15 17:39:08

Overthemill I presume you have been accused of having Munchaussens by proxy. I was. School refused to believe the letters from the hospital and sent social services to my door. The stress put me in hospital with a suspected heart attack.

I strongly recommend you contact AYME, he association for young people with ME. They have dealt with this (far too) many times so will be able to help.

Hugs x

overthemill Thu 17-Sep-15 18:44:16

Thanks * weirdcat*. Yes I have been accused of that but that's hopefully dealt with. Now just battling others who say I am wilfully limiting her food and that I am sabotaging her treatment ( of which there is none by the way). Dd is so ill that Bath won't take her nor UCLH so we have lovely chap who comes to our house and he just ticks us over trying to keep crap off our back while dd dozes and tries to get better. Ayme involved and very helpful- but even they can't move mountains but we have an investigation underway by the Ombudsman for both Health and Local Government who is trying to get to the bottom of it.

fastdaytears Thu 17-Sep-15 21:27:46

Gosh you are all amazing. In a lot of ways, I think it's been harder on my mum when I was bad than on me. And that was me in my twenties. How the mums of teens are coping I do not know.

I feel very lucky reading this that I am doing well at the moment. I can't say that I feel "fixed" though because the anxiety and depression have stuck around, and I'm constantly alert to symptoms coming back.

Hi Purple thank you for posting! Nice to have support from outside "the club" as GF called it!

gingerbiscuitandacuppatea Thu 17-Sep-15 21:30:47

Hello all,

I've had ME for 24 years, since my teens. I'm in a relapse and am pretty much housebound. I have two kids 12 and 9.

I saw the other post and stayed out of it, too easily upset at moment.

Overthemill I'm sorry your daughter is still struggling so much - I remember us talking on an awareness day thread - hopefully being at home will be better for her and she will start improving. I can't imagine how horrible it must be to have to face all those accusations, I'm glad you have support and hope you win your case.

overthemill Thu 17-Sep-15 22:34:52

Thank you gingerbiscuit. She's got so much worse since Christmas when she went to London the first time- when we had to go back for tube feeding at Easter the consultant hardly recognised her! She was amazed at how much worse she was. It's heartbreaking as all her mates have abandoned her ( I don't blame them, not really, she last saw them when she was 14) and they are now in sixth form. But she doesn't take it in at all. Still wants to be better, still trying so hard to think of ways she can do that but I have no idea. I wish someone famous and rich would get the illness so research would be funded. Teenagers struggle so much. And I can't leave her not for more than a couple of hours

fuzzpig Thu 17-Sep-15 23:17:43

Just catching up with the thread now (yes, I should be sleeping...) and just wanted to say thank you Purple you're very kind to post in support. It's much appreciated smile thanks

fuzzpig Thu 17-Sep-15 23:19:19

Oooh two purples. This is too much for my foggy brain! grin

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