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)

www.washingtonpost.com/national/health-science/with-his-son-terribly-ill-a-top-scientist-takes-on-chronic-fatigue-syndrome/2015/10/05/c5d6189c-4041-11e5-8d45-d815146f81fa_story.html

I finally sorted out all my pills. So many are out of date! I now only have iron, calcium/magnesium, and cranberry extract. All sorted for the week along with my regular meds.

First on my list to buy are vits B and D I think.

Vitamin D is fat soluble, so you need softgels rather than tablets. Lots on Amazon. I take 2,000 iu a day all year round and that has made more difference than anything to the way I feel.

A good B complex should make a difference as well.

The other things that's made a difference to me has been giving up caffeine. I find that my fatigue is much more levelled throughout the day rather than being artificially boosted by caffeine and then crashing once the hit has gone. I drink a couple of glasses of water first thing in the morning and it wakes me up in the same way that tea did.

Hi - can i join? I have fibromyalgia and have been suffering with it since my late teens though it took to my 40s to get a diagnosis, after years of having other things ruled out.

I only usually post on mn if i have something helpful to say, but i'm so bloody miserable with it at the moment i hope you don't mind me just feeling sorry for myself for a bit. On top of the usual physical pain, fatigue, fog, anxiety etc, i've had two really nasty viruses in quick succession (since ds started at school) and am just on the floor.

I lost my career because of this illness and struggle to even work from home. I can't plan anything because i don't know how ill i will be. I've become completely dependent on my dh, financially and practically, and we barely cope on either front much of the time. Every time i feel like i'm about to crawl out of this hole i find myself back in it again. No-one in rl seems to have the first idea how awful it is - i find myself having to explain over and over again even to those closest to me, so it's nice to offload here where you do understand, if sad that so many are suffering in similar ways.

I'm naturally quite a dynamic, optimistic person. I could achieve so much if it wasn't for my crappy health. Today i would settle for being able to take my own boots off and get up the stairs without crawling.

Sorry for being so negative - self pity isn't very helpful is it?

Felt good to get it out though .

velvet you're allowed to have a moan. Life with these illnesses is crap. Sorry it's so hard at the moment for you

Don't apologise velvet - it really is one step forward, two steps back. I dont think anyone can understand if they haven't experienced it - my mum always asks if I'm up to anything at the weekend despute the fact that she knows I have no life due to the illness - I think she just desperately wants me to have a 'normal' life so its not done maliciously.
Have got adequate pain relief sorted?

It's so much better to vent in a forum where others actually understand you. I don't have to deal with the exhaustion and pain of being ill as most of you do, but do have to deal with a child who does and the sadness of not being able to make it better for him (except in small ways) and the irritation of having all the parents/teachers/doctors around me offering all sorts of silly suggestions because they just don't understand. If I had a dollar for every time someone asked me what my ds did over the weekend and then looks at me blankly when I say "he slept and caught up with schoolwork" like somehow his depressingly unexciting weekend was my fault or his fault. I guess somehow they do just want me/him to have a "normal" life, but reminding me constantly of what we're missing is not terribly helpful.

Thanks guys. I think i may feel a little brighter today so hope that yesterday was the bottom of that particular hole. I had a bit of a frightening trip getting ds from school yesterday afternoon, and it left me feeling very low and inadequate, hence my rather miserable post.

While it is not easy living with this illness i would rather that than watch my child go through it. That must be so hard Sofia. I worry though about the impact on ds seeing me like this - but then i worry about everything, anxiety being another of my more prominent symptoms!

Re meds, i've been pretty restricted on that front as i've been breastfeeding for the best part of 5 years. Previously treatment has been targeted at the various individual symptoms rather than the overall condition, so unsurprisingly has had limited success. I've been prescribed fluoxetine now the bf has stopped, but am a bit apprehensive about starting them - i had a long spell on ad's before (different sort though) and the side effects caused almost more problems than they solved. I'd be interested in knowing if anyone has any positive experiences of using ad's for their therapeutic rather than anti-depressive properties?

As long as i'm not ill with anything else i can more or less manage the basics of living for at least some of the time, but any additional sickness knocks me sideways for ages. I understand about the expectations others seem to have that you have a 'normal' life. Maybe it does come from an attempt to be positive for you, or maybe it is just a lack of understanding. I think in part it is because so many of the symptoms of cfs and fm are things that most people experience to a degree so they think they do understand, hence the belief that it just means you're a bit tired or a bit achy. Oh that it did.

I'll have a proper read back over the thread - i only came across it randomly yesterday, but it was just what i needed, so thank you again.

Hi Velvet and welcome

I'm just popping on to say I've got a meeting arranged at work. To discuss my absence which is now officially classified as 'long term'. Shit. :(

I've had another set of "Well it's not that" blood tests back

I do get down as I feel CFS/ME/FM is a bit of a "it's not anything else" diagnosis & as my brother has RA I am always concerned they are 'missing' something

The supplements I am taking seem to help but I'm never sure if I should add things as I have reactions to stuff either food intolerances or actual skin allergies

Sorry to hear that Fuzzpig - that's just crap

Hi Velvet. Definitely look over the thread and read the links that I posted. I think there is info about bfing and most of the mitococktail supplements are perfectly fine to take while bfing. I hope the advice in the thread is helpful.

velvet just a quick post from me re ad's for pain relief - I'm on nortryptaline for pain - at higher doses it is for depression but at low doses 10 - 40mg it is used for pain relief for a number of conditions - neuraligia, fibro, nerve pain. Perhaps ask your gp to try that first? Its worked wonders on me - I can now walk a few 100 metres rather than the 10 I could hobble before.

I take amitriptyline for the same reason :) I also take sertraline as an actual AD.

Thank you Katy - I'm gradually coming to accept it and I won't fight it if (ok, when) it happens but it really is a lovely job with lovely colleagues. At least since it's a public place I will still be able to go there with the DCs anyway, but I'll still miss the work side of it. In some ways though I kind of just want it to be decided one way or another now, as I feel horribly 'in limbo'. Although better financially I suppose to stay on the payroll for the moment but TBH I'm kidding myself if I think I'm going back so maybe I just need the band-aid ripped off. If I went back now I wouldn't last a single shift :(

I totally know what you mean with the diagnosis. It's a diagnosis of exclusion and TBH I think a lot of CFS is misdiagnosed anyway - even before I heard of mitochondrial dysfunction, I heard about a lot of people who actually have POTS (little understood in some circles despite having really clear symptoms) and other stuff. Personally I think I should be classed as having Fibro rather than CFS, as pain is a much bigger symptom for me than exhaustion - apparently if I'd seen a different specialist I would have a different diagnosis. Although some people say it's one and the same anyway.

In fact I know someone who just got diagnosed with RA 4 years after being told it was something else. I hope you can get some proper answers and help .

When's your work meeting fuzzpig? Is this the outcome of your OH call?
I'm supoosed to be on the fibro end of cfs spectrum. The pain was causing me to lose sleep and fatigue was related to living with the pain. The nortryptaline definitely helps me sleep and I find that I dont really have any side effects anymore - well, it's hard to differentiate between what's cfs and what's a side effect :o

Hello All, another Fibromyalgic here!

I've had it 13 years and am not going to moan about my lot except to say that, just like yourselves, life goes up and down. I've been reading your threads for a while and found them to be really helpful, though i'm sad that you're all suffering too.
So, on discovering this link (below) I thought I'd share it with you and see what you think, particularly if you click on the link of Integrated Tissue Dynamics as the report is in more detail....hope it helps in some way.

I know it's from 2013 but I found the report interesting as my hands and feet in particular can go from normal to a maddening raging, burning itchy red in a matter of seconds, which seems to link with what is said in the report. I'm going to follow this closely and see if I can find if more progress has been made on this.

www.mumsnet.com/Talk/general_health/2469596-Chronic-Fatigue-Syndrome-ME-Fibromyalgia-for-support?msgid=56953312

Sorry - brain fog kicking in there.... correct link below!

www.healthline.com/health-news/aging-scientists-find-physical-cause-of-fibromyalgia-062113#1

It's a week today Hey - I don't think I will be given the heave-ho this time, as they have a whole load of stages to go through to make sure it's all above board. But I expect it will be seriously discussed (which it wasn't really the first time in 2012-13, because at that point I was FT and we had the obvious fix of reducing my hours).

Welcome Pottery :)

Incidentally my DCs have started learning about blood as a home ed project, I'm thinking of moving on to cells in general (we've done red/white blood cells etc) as I think it would be really good for them to learn about mitochondria and that Mummy's might not work very well :o

Thanks fuzz

Thats interesting pottery I have raynauds syndrome but also get incredibly sore and red itchy hands - I put it down to some type of contact dermatitis.

Ive got a work meeting coming up so will be with you in spirit fuzz

fuzz mitochondria are really quite fascinating. Make sure you get up to date information to show them, because even a 10 year old text book will not have the new juicy information about mito dna. a good but simplistic video from the mitoaction website. It might be a good starting point.

Always worth going back to re-read A Wrinkle in Time too.

Hey I am guessing that the sore and red itchy hands may also be partially broken autonomic stuff....ie blood rushing to your hands and then not leaving once they are warmed up....or something of the sort.

wow, weird the video link I put in showed up as a picture in my post!