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)

A week ago Sunday was awful I was tired, achy, in pain from my joints, muggy brain, out of sync, tummy rampaging & sleeping all the hours god sends

Today I am till awake & up (unheard of at this time of night), cognitively better, less aches, less pain, better tummy & I've been up for 14 hours with onlu 1.5 hrs nap......tuesday night I slept for 14 hours after a 2 hr nap at lunchtime with a 2 hr nap the next day

I love my B12 injection

May I join in? Was diagnosed with Fibro over a year ago. It's bloody hell.

Today, for example. Woke up in serious pain. Went to the supermarket with DP and was utterly fucked afterwards. Pain is so bad I feel like vomiting. Brain has been so foggy I can barely remember conversations that DP and I had last night. I have spent the evening in floods of tears, so frightened am I at the thought of trying to get myself up out of bed and out to work tomorrow. Lately I've felt exhausted before I even leave the house. There was one day last week I was such a mess, I spent my lunch hour wandering around in a confused daze.

Katymac, I understand completely re the dodgy tummy. Most mornings I get horrendous stomach cramps. I've stood waiting for my bus doubled over in pain. A fun new element to this is (as horribly embarrassing as it is to share) fecal incontinence. I've had numerous times lately where this has occurred, sometimes I'm terrified to leave the house.

I don't really know what to do anymore. I love my job but don't know if I can physically do it much longer. Every day feels like a massive uphill struggle. I'm only 30, how the fuck do I cope with feeling broken and living in the body of an 80 year old?

Shadows

Hi everyone - I have a bit of insomnia so I wrote this about my B12 injections - let me know what you think (if you have time and feel up to it)

Could I reference everyone back to the earlier discussion of Vitamin D, Omega 3's and other mitochondrial supplements. It really does help.

But Sofia, it comes down to what do I buy, where do I buy it & how much do I take?

I'm on B12, Vit D, Zinc, Iron, Folic Acid, Rosehip, Calcium & Magnesium.....I would add to it but I'm scared of being allergic and I just don't know/can't find enough out about it all

Thanks Katy. I'm glad to hear that the B12 is helping you. Even if it just allows you to feel like you have a normal life some of the time, it's an improvement, right?

Katy, you should add CoQ10, Riboflavin and L-Carnitine and if you can afford it, Omega-3's to the mix. If you pm me, I will tell you the recommended amounts. And you might want to take iron out of the mix. My understanding is that if you can get iron in your diet rather than from supplementation, that's one of the few that's better off that way.

Thanks Sofia- I do appreciate that

sofia - do you happen to know how these supplements interact with breastfeeding? I've been wary of taking anything extra (I just take Vitamin C and D) while DD still nurses.

velvet - I also used to have a monthly cycle. I noticed it mostly in temperature regulation. I was on the pill, and in the hormone-free week (with period) I would have difficultly regulating my temperature, trouble sleeping, and have massive night sweats.

My pregnancy was so horrid that I must say I wouldn't have noticed other effects, but I did notice that I wasn't get the night sweats anymore. I'm now on the mini-pill and don't appear to have the same cycle (you take hormones constantly with that one, but just progesterone I think?).

I've got some vitamin D softgels from the GP, I need to start taking them (and then have a blood test after 4 weeks). I was surprised to find out my B12 level was good.

I find it really hard to take supplements. I manage for about a week and then keep forgetting to bother with it.

Worn out today, DCs in a horrendous mood, just ugggh. Would rather be in bed (which in fact I still am)

And hello Shadows sorry you are having such a rotten time

It is far too good to be true to suppose that positive thinking and graded exercise should reverse a debilitating illness that, as with Mr Cornes, can last for decades – and it would be good to think the sheer implausibility of asserting otherwise could be the last hurrah for the psychological explanation for post-viral fatigue.

marking place to catch up

Thanks for posting that Kate - I think 12,000 negative responses is quite a good return for the other article

I was just coming in here to see if anyone had linked that article CFSKate. Nice to see a better article in the Telegraph.

Katymac your post on B12 was really interesting. It's horrendous, the difference to your life when you are obviously low in levels of B12. I have been looking into B12 a bit and from what I understand, you can get hold of the injections online and do it yourself. It seems to be understood that it is difficult to overdose on B12 as it's water soluble. Obviously you may not be willing to try this, but I think I was consider looking into this if I was you.

I'm still struggling to recover to my base level and I'm also really struggling with coping with 'missing out' on things. Trying to keep positive, but it is really hard.

It's the sharps bin that worries me; I'm a bit obsessive about waste disposal

I also would like to buy the B12 from somewhere 'safe' although how I define safe I'm not sure x2 I am a nightmare!!

I have a nurse friend who is happy to teach me how to do it - & I wouldn't be silly about it, I'd just shorten my gap a bit

There's some info on Dr Myhill's site About B12 Katymac
drmyhill.co.uk/wiki/Magnesium_and_B12_Injections_-_what_to_do_if_your_GP_refuses_to_give

Apparently you should be able to get a sharps bin & then use a GP's surgery or a chemist to dispose of the needles, but it might be a bit of a hassle if they are not supplying them.

I really really wish people understood this illness more. I was talking about my autism assessment to my manager and they basically told me off because I should've told them about it earlier, and seemed to be implying that it negates my CFS. And for the gazillionth time asked me how I'm managing with the DCs at home (because yeah dragging myself to school and back twice a day would be so much easier ). It was a horrible conversation and I'm a blubbing wreck now.

That's awful Fuzzpig. People just don't have a clue, do they?

Thank you fuzzpig. I'm really struggling at the moment. One morning last week, my bus to work was almost in an accident. I must admit, I had a moment of thinking 'oh, if only '. Because at least if I was in an accident, people would understand why I was fucked, unable to work, and struggling through every day.

I agree with you completely re wishing people understood it better. I find people think that it's all in my head, or if I only thought more positively, or fought harder, or was more optimistic or stronger, I'd be fine. Yup, cos I just love the fact that today I had to have DP lace up my boots due to my hands being too bloody sore. That every time I've stood up today I've cried out in pain. I can't even stand up straight, so sore is my back. Oh and I really love that one day last week, when my IBS was really bad and the stomach cramps hit, I stood up to run to the toilet and quite literally shit myself. What fun, sitting on the bathroom floor covered in my own mess, sobbing my heart out.

Before I discovered this thread, I posted on MN (in Chat, I think) some time ago about my health at the time, and the fact that I was struggling and that my family were less than supportive. I got some lovely support, but was also grilled by someone repeatedly asking 'hmm, you seem to have a lot of invisible problems, why do you think this is'? Like only visible health issues are valid.

Sorry, I'm wittering on. It's just great to finally talk to people who understand. Though of course I'm sorry that you all do understand, as I wouldn't wish this on my worst enemy.

I'm really sorry that you're dealing with such shite at the moment fuzzpig. I wish people understood it better too

Thanks horrid, fuzzpig. I guess the best we can do is ignore these people and hope they eventually get better informed?

Oh, something I meant to ask, what actually happens at an assessment for ASD? Did they ask you things? Have you fill out a questionnaire? Do stuff? Just curious, so I hope it's okay to ask. if you don't want to talk about it, that's okay too.

Hi shadows. Welcome, but sorry you have to be here Things sound pretty bad for you. It is very hard to accept that you can't do stuff; I struggle with this all the time. I still have massive ambition for things like promotion at my job, although the level of realism of that is mighty questionable...

Question for those who work: how many of your colleagues actually know what is going on? Very few of mine do, and things like my week off a little while ago probably raised a lot of eyebrows. As my weight-loss continues, I'm also having to field, "Hey, you look good, have you lost weight?" questions. I have so far taken the opportunity to explain that it's actually due to health problems, but I tend not to go into too much detail. I expect as it gets more noticeable I may get more of these, and not quite sure how to respond. I suppose I could take the opportunity to explain about ME and POTS and all, but I also feel weird thinking everyone will be gossiping about me ("Have you seen murmur? She's lost a lot of weight" "Yeah, it's because she's sick" or worse "Yeah, she says she has ME but I don't believe in that. I think she... [whatever they might say, I think I'll stop my imagination there]")

Thanks -> That's (sorry about that...)

Well I have emailed our local private hospital to ask for a second opinion (& how much it will cost)

I'm fucked. I had an MRI early yesterday morning which involved a longer drive on an unknown route, in shitty weather. I panicked during the MRI and had to have one of the scans redone, so was tense. As a result, both knees are knackered and one ankle. I had to cancel a weekly commitment last night as I physically couldn't stand .
I did manage to get out this morning for coffee with some friends but still feel meh.
Now I have my DD1 off school not feeling well, and DC2 was moaning about feeling ill this morning (nothing new for her!) so I'll guess she's going to be in a right shitty mood when she gets home too

Fuzz pig I think the trouble might be that most people just don't know how tiring it is to take children to school when you have CFS and your body uses up up its energy just to do that. For most people the holidays are more tiring because they have the children to entertain 24/7. I am so sorry your collegues do not understand.
Murmur action, I only work very part time, but if I need to say anything to anyone who doesn't know my health history ( which is everyone except 2 managers) I just say due to poor health or due to a health problem. If I need to say more I just say I have a health condition that means I have very limited energy and get tired very quickly, so I can look drunk, or struggle to speak as I tire.i've been know to whittle on about mitochondria if need be!
Alice I hope your dad is feeling better when she gets home. I had an MRI 2 weeks ago - its difficult to keep still for so long. It made my neck rather sore. I hope you feel less achy soon.
Hope you get something affordable sorted out.