Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

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

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)

Kampeki, I'll have a think & I'm sure others will too

It's nice of you to think that way

Sofia"he doesn't make enough energy to run all the parts of his body at full function all the time." translates nicely to "I don't make enough energy to run all the parts of my body at full function all the time!" & is the best description I have ever heard for it!!!! Thank you

Thank you Katy. The mum has been a good friend to me in the past, so I'd like to do something for her now.

Thanks Katymac. I used to use the analogy to a brown out, but it seems that unless the person has spent considerable time in 3rd world countries, no one knows what a brown out is anymore. ....
Kampeki, I will write more later...just running out, but I can certainly give lots of suggestions of what works (and doesn't work) for my ds. I think the hardest part for my ds (and probably everyone here) is that Mito Dysfunction is a hidden disability and therefore it's hard to get people to take it seriously. And the disability is not actually what's registered on the official disability lists (at least here in the usa), it's the symptoms like migraine or bipolar or cyclical vomiting which makes it very piece meal to explain on official documents. I am currently trying to complete the disability accommodation paperwork for my ds to take the College Board exams. Their paperwork is very much directed at a specific thing that needs to be accommodated, not "he gets tired at random intervals and therefore might need, or not need, extra time to complete an exam because when he's tired, it takes longer to drag his pencil across the page and formulate the answers to complicated essay questions."

Kampeki that is a kind thought. I don't know what the child's symptoms are but stuff that as helped us as a family ( and dd who is very severely ill, bed bound) has included:
Soft thin blanket to add warmth not weight
Egyptian cotton bedding washed a lot of times for softness and smoothness
No scents at all - we are working towards being a scent free household
Ear plugs
Eye mask ( for darkness)
Cooling eye mask ( like they sell for headaches)
Microwave hot packs (from Amazon) for aches and pains - scent free gel ones with soft fabric covers
Ice packs you can freeze for aches and pains
Silk pot plant for colour but can't die in dark room!
Ginger tea bags
Understanding about cancelling plans
Ditto about popping round just for 5 mins
Offering to sit so I can go out ( I spent 38 weeks at home 24 hours a day before social services paid for a sitter)
Offering to shop/ cook/ walk dog etc

Oh and AYME have useful info and forums but they are quite rigid in treatment options but forums aren't.

Maizie - i came across this page on Dr Myhill's website that was linked to earlier, suggesting FM may also be a mitochondrial disease. She recommends a low carb diet.

I think my problems started when i had a rta in my teens, quickly followed by glandular fever, after which my immune system crashed. I had a diagnosis of arthritis in my late teens, then colitis in my 20s, depression and anxiety in my 30s, then sciatica a few years on (etc etc etc). I tried a yoga diet to deal with the colitis rather than relying on steroids, and it worked very well. This is what i followed - may sound a bit cranky, but it was more or less a case of avoiding stimulants and eating pure foods. I would struggle with a paleo diet as i'm vegetarian - would be vegan if not for halloumi!

My brains feel a bit scrambled with trying to understand whether FM is caused by mitochondrial disease or not. I've read other stuff which suggests that it is down to undiagnosed hypothyroidism or down to excessive fine nerve development. My gp reckons the symptoms are caused by a combination of low serotonin and high levels of neural pain transmitters, though of course can't answer what causes that in the first place.

Glad your meeting went well fuzzpig, and hope yours does too next week Hey.

Kampeki

The Young ME sufferers trust

the last few pages has Letter to educators & agencies regarding young people with myalgic encephalomyelitis (ME)

for those with severe ME

Invest in ME, lots here

forums.phoenixrising.me/index.php?threads/uk-mea-calls-for-get-false-illness-beliefs-cbt-to-be-ditched-as-primary-treatments-for-me.37782/page-7

That looks good kate
The whole cbt thing is a crock of shit. I can see benefits for helping people stop feeling guilty for letting people down etc, but not as treatment for a neurological illness

Fascinating & that is from May this year!

The other 'standard' treatment accordiong to my GP is ADs. I pointed out I could understand why people would need ADs when they aee suffereing from such a serious chronic condition but I doubted that it wouold change anything to the symptoms themselves.
His answer was 'But that's what the trials say...'

In fact, I think that some AD's can be problematic for people with mito issues.

My father just sent me a scientific review from last year that links mitochondrial dysfunction with fatigue. I don't think there is any way to post the pdf here (please correct me if I'm wrong), but if anyone wants to PM me, I'll send it to them.

pacific ad's such as tricyclics are used in low dose rather than a dose suitable for treating depression and these help with pain management and getting you to have better quality deep sleep to give your body more of a chance to heal. They are for treating the symptoms not the illness itself. I wouldn't be able to have the quality of life without mine- they are also prescribed for many other illnesses where pain is prevalent.

Oh yes I agree re pain management. It's the 'curing effect' I was more about.
(I've had them prescribed too for recurring headaches)

Hi All. Been a lurker for a while but this is my first post. I am a mum to 5 lovely kids. Was diagnosed 2 years ago with fibromyalgia after years of putting it down to 'just having so many kids', then a bout of a flu type bug left me completely knocked off my feet since.... So many symptoms, too many to list. The hardest thing I struggle with is accepting that I can't do everything I used to do! I am only 34 and I feel 94 some days!

Doctor told me to try CBT, had it before for other issues and didn't find it useful. Tried dosulepin, 30/500 co-codamol, naproxen, gabapentin. The gabapentin was prescribed after I suffered stroke like symptoms over the new year, they made me feel dreadful, like a zombie. The naproxen helped the constant headaches but didn't help with my other pain. We have recently (well....6 months ago) moved to a new area which was incredibly stressful as we were actually homeless for 4 months before that. But not we have a nice house which I am gradually trying to make 'home' and we are all still together and safe.

Anyway, just wanted to say Hi!

Hi Mummylovescakes - enjoy our whinging

Major whinge coming up; I am tired, fed up, poorly (not ill) and a bit down but I am also planning a new business, working too hard and running round after DD like a mad thing
My solution more B12 & maybe another set of bloods to see what else is low
GP solution Prozac

How does that make sense?

Hi all - would like to join.

I am struggling atm. Had biggest fibro flare up ever before summer (it has never caused such problems before, I'm still quite a 'new' DX), had time off, got better and was doing really well and then got a virus a few weeks ago. Five days off, went back and struggled, ended up signed off for a week. Went back today and feel like I've been hit by a truck. So fed up. Was allowed to come home a bit early and have slept, but still feel I'm looking at the world through glass - everything is distant, head is thumping and my whole body hurts. Work have put some things into place to make my days easier this week, but not convinced I'm going to make it. Just want to cry. I need my life back .

Welcome new people

Oh Katy that does sound rather short sighted of the GP. FFS.

Tired. Achy. Blah.

Got to take DS to Beavers now, pissed off as DH has had to stay at work yet again (short staffed) I made dinner but that was enough to really do me in. I would just keep DS home TBH but he's being enrolled officially tonight. SIGH. Got the most insane week and just really want it to be over with.

Had a visit today and it was lovely chatting etc but OMG it really wore me out. And I don't know them well enough to say 'actually I'm too tired for this' IYSWIM.

Oh, big fucking fail. Not going to Beavers. Bus didn't arrive and I was too tired and dizzy to get there. Feeling like a spectacularly crap mum right now. DS really upset :(

fuzz It's so hard having to try and do these things when you're ill. I frequently feel like shittest mother. Do Beavers know that you're ill? Perhaps another parent can help out? I've volunteered to help at a disco this week and DS is delighted. There is no way I will be able to do it if I still feel like this. Once again, he will be let down.

fuzz (((hugs)))
I hear you and I know too :(

Dh has been away for work for the last two weeks. I haven't been feeling as tired as that for a long time (Got a virus a few weeks ago I haven't recovered from).
The worst is when the dcs are so used to me being so exhausted that they tell me 'Oh that's OK mummy. Don't worry if we can't go to xxxx' when I know full well they really really really want to go. (And Yes we did go but at a high cost to me. That plus having to deal with the whole HW/School/food is getting too much. I wish I could justv take some hols and go hidding someweher for a long while)

Katy that was a crap response wasn't it.

I always thought if you asked someone what they would do when the 'got over' depression what they would do - you would get no reply

Whereas if you asked someone who was pissed off/down/fed up/physically ill they would list what they were waiting to do....I'm not sure if that's true - but it makes sense to me

I got up with energy did 2 hours (ish) & then went to bed

I have been Told the same thing.

This am I got up, got the dcs ready and was knackered too by the time it came to 9.00am.
Except that I had a full day in front of me at work so I went there instead.
I haven't been feeing as ad as that for a long time. I'm dreaming to be able to crawl under a stone and fur people to just forget about it.
God I can't wait for DH to come back from his work trip. I can safely say that I'm not coping on my own. :(

Signed off again for the rest of the week. Pounding head, really sore eyes, but all I can do is rest it off. Sigh. It feels like it's never going.

Pacific must be tough being home alone.

Sympathies pacific
My dh is away atm too and I'm exhausted - its only been three days as well and still 10 more to go - I'm used to him working long and odd shifts but he picks up so much slack that I really notice it within days.
Have my work mtg tomorrow - hoping that we might be able to find some way through it - I'm still signed off for a few more months and know that there's no chance of me returning to my previous hours any time soon. Also have parents eve to contend with on Thursday so lots of extras to knock me sideways. I've upped my painkillers to get me through.
Im wondering if the colder weather is affecting us all - I certainly feel worse when it's damp and cold.