Could I have [mild] ME?

[Christmastreedelivery]

Hello.

have had a bit of a light bulb moment this week. I am starting to wonder if I might have ME, in a mild form?

I have noticed that I seem to go through cycles of being ok. When I am in a cycle of not being ok, I have the things in my list going on.

Aches. Mainly joints, it hurts to walk up and downstairs. My wrists ache, and I get shooting pains through my long bones. My back aches in a tired muscle sort of way. My pelvis and hips ache like I have been running, even when I am just sitting.

Tired: No matter how I catch up on sleep, or get a normal amount of sleep for me, I feel dog tired. Like jet lag, I feel myself nodding at traffic lights.

Words: I get them mxed up, and use the wrong ones. I start a sentence fine and then it runs away from me and I can't finish it without really concentrating and stumbling through.

Skin: Sore. That's the only way I can describe it, especially over my cheeks and arms.

Sweating: I have days [the bad days] where no matter what I do, I just pour sweat. Only my armpits, but still. Could do without it!

Palpitations: yes. These are there on the down days, at rest. I've had a 24hr tape, it was fine. Naturally I didn't have any during that 24 hrs!!

Treacle: Feels like I am wading through treacle. Not surprisingly on these down days I am grumpy and horrid mummy

The thing is the cycle. That's what got me thinking. Yesterday I was great, baked, did crafts, did some plannning for work, tackled some jobs that needed doing [phoning for appointments and stuff like that]. I thought to myself last night, 'OOO you'll pay for this good day tomorrow' and that rang an alarm bell. I shouldn't be thinking like that should I?

I went to town for a 6 hour shopping trip, and seriously I had to go to bed for 2 days afterwards.

What do you think?

BTW, I am very unlikely to be anaemic, and I have had thyroid checked in the past.

Have Dr's appointment tomorrow. Will he think I'm a moaning bored mum who whould loose weight and get out more? I'm scared of getting the face!

less pain today but eyes are still giving me jip.

magso do you use anything with alot of mint or cinammon in it.

Crikey! everyone seems to be on a downer right now.
Magso, I used to attend Barts, not for years now though.

solo - did their unit help? Hope you are feeling a little stronger today.

Didn't help me magso, but I think it was helpful to most of the others in the group. I was the only one with nobody in my life to help me, only single parent, only full time worker...so the odds of it helping me were slim to start with.

I'm feeling pretty crap atm. Just rang Mum to check she was Ok and she saiid I sound disjointed...ho hum.

we are all here to chat to solo

im a single mum too solo. have been for 16.5 years.

Hi all.

I'm sorry to hear so many low sad voices. Tough days, I hope they pass for you all.

I am feeling ok, I've been lucky enough to have some help from my mum.

I'll be back soon, off to bed now. Should hopefully be about tomorrow for a proper catch up. Then nights again.

night evryone

how is everyone today?

Hi all

I'm not so great tbh. No energy or power. Dont seem to be able to move. Bloody awful timing, half term

Hope others are better?

sorry you are not so good tree. can your mum give you some more help?

Hi alypaly. My dh has the week off work - which is great. Except I'm sleeping until noon everyday, so he is getting no rest and we aren't doing anything. Had all sort of plans for this week.

This is shite!!!

I think the ad's are really kicking in, in a bad way though. I feel so horribly sick in the morning. Real fuzzy and jet lagged, and like I'm about t sit an exam. Tummy flips.

Anyway - hope everyone else in in a better place

hope half term is making life a bit nicer with the children etc

How is everyone? I survived half term although the house looks very neglected and I have not enough energy or strength to tackle it yet!

Hi all. I was directed to this thread thanks to a link from a helpful MNer. It has taken me ages to read it and am now thoroughly exhausted. But I'm so glad i've found you and can't help feeling somewhat relieved that you guys are here. I was diagnosed with CFS/ME in earlier this month after struggling for what seems like ever. I have identified with so many of the posts here and what you have been going through.

I don't have the energy to write much today...which is pretty much the same as every day. I tend to spend most of my time lurking on MN with the occassional post thrown in whenever I have the energy to write something which is usually round about midnight when I can't sleep despite being thoroughly exhausted for the whole day.

Anyway I just wanted to say hi and to let you know that this thread has been a huge help to me in every way. I'm off work just now and have been for 6mnths. Like OP I have to work 12hr shifts with a mixture of days and nights every week. I am going to have to go back to work for financial reasons but don't know if I physically can. It's a terrible worry and strain on me when I'm already so ill. Which you all know from being there too.

So I wonder...can I join you?

Hi Magso, also survived the holidays - just about! Had dh's 40th party this weekend - big fancy dress do, for which I had to spend 48 hours baking and decorating cakes beforehand. Have been pretty much horizontal resting ever since, apart from a couple of loads of washing and packing the schoolbags last night and am really appreciating the peace and quiet now my two boys are back at school.

Celestial (lovely name ) haven't seen Tree for a while, so thought I'd repl,y as I was passing and I'm sure she wouldn't mind me saying - of course you can join us - welcome, I hope we can be of further help and support to you along the way. Its been a bit quiet on here lately, but then as you know, just typing can be exhausting when things are at their worst, so we all post as and when we can.

Thank you moose for your warm welcome. I've had to amend my name slightly as I've just clocked another mner with a similar name and surprisingly some tiredness issues. It's only a marginal name alteration i've made though just so there's no confusion

I have to say though today is one of my better days. I not only managed to get dressed but even managed to do some housework (albeit very minimal but housework none-the-less) although hope I don't pay for it tomorrow. Today I also joined a fly thread to see if pacing myself might actually help...but I somehow doubt it. I need to try and remain positive though.

I peeked at one of the fly threads once - far too scary for me!

I have managed to have a fairly quiet day, just two loads of washing, the breakfast dishes and two lots of spellings and reading homework, which included bribery with pokemon stickers, as I hadn't the strength for a fight.

I'm now esconced on the sofa waiting for dh to deliver my tea! To be fair, I did prepare it, he only needed to turn on the pans and serve up.

Praying dd sleeps tonight, as she has a horrid cold and was awake from about 4.00 last night.

I can feel myself running out of battery power, so seriously need to eek out my energy, or I'll have had it by mid-week.

Overall thought, I'd say I'm not too bad at the moment. Certainly nowhere near as bad as I was a couple of weeks back and a million times better than when I had my funny turn.

Have decided not to approach the docs at the moment though. Am already fighting to get ds2 sorted out and if they can't be bothered to look beyond blood test results in an obviously unwell 6 year old child, they certainly aren't going to take me seriously.

Hello folks - and big warm welcome to Celestialstarbright. We have a shed load in common! You sound very worried and fed up. What have you got around you for support?

Hello Moose, aly and magso. And all of you. How is everyone doing?

What can I say, I did some long days [1st in a looooong time] and it was 2 together. I slept 8 hours before, during and after them and I still wandered about like a zombie.
I've always been able to get going, to call on nervous energy and adrenaline. It just wasn't there and I suffered. So did all those who worked with me.

Ok, small moan. The sad thing is no one thought I looked ill or down. I just looked fed up and lacking in enthusiasm apparently. Like I wanted to be somewhere else. I think I was annoying people . I just felt tired. That's all, it wasn't personal against work or anyone! So I feel a little sad about all that.

I nearly went back to GP on Thursday, if only so he could see me 'down'. I am undecided what to do and how to do it. I have slept 10 hours most nights last week. DH took the week off as I clearly wasn't going to be able to manage, and that was before the long days! He was pretty exhausted too. Mainly because I haven't been pulling my weight around the house and with the kids

Moose - I'm sorry to hear the ds2 stuff is still ongoing. I hope you are in bed getting recharged. You know where I am...

Yip Moose. The fly thing is gonna be a tough one. All these good intentions are one thing but being able to carry them out is another. But for some the pacing thing is meant to work so I'm giving it a bash to see how I get on. Like I mentioned earlier, today was one of my better days but i've had my hopes up before about things improving...as I'm sure you guys already know only too well yourselves.

Thank you Tree for your welcome. I do have support. My husband is great but he has Chrons disease which is really difficult for him on various levels. He's trying to battle his illness but trying to tolerate terrible side effects of his medicines too. He's very anaemic and so also tires very easily. Between us we try to cope the best we can but it is a struggle since we have ds2 who has tourettes and hyperactivity (wish he'd give me some of his excess energy) and ds3 who is only 3yrs old but also has health issues. So things can become stressful and at times we don't know who is supporting who! But get me wittering on and on.
I'm sorry things were hard at work for you. I absolutely understand how you feel regarding other people's perceptions. I find relationships difficult. I've lost many friends over the years just because I dont have the energy to stay in touch. Even texting a message can sometimes seem like climbing a mountain. And I'm so with you on the long shifts = zombiefied. My shift patterns when I'm at work are x2 long days followed immediately by x2 long nights. Then I'm off for 5 days and it goes round in a cycle again on for 4 off for 5 and so on. Before I took flu in October I just about managed this although it was painful. But my 5 rest days I spent completely zombified. I'd only just start to come round when I'd go back to work and the whole process started again. Taking every ounce of energy I had and draining the life from me. When i took flu in October it stopped me right in my tracks and I still haven't managed to recover from it

Sorry there I go again. Don't mean to burden y'all.

Ok namechanged back to starlight only because it's much prettier and I prefer it

Hi Celestialstar and welcome!
I have a similar history (except I only worked days - the 'night shift' is at home). I had been struggling (and ds needed a lot of overnight care) - then got pneumonia. Frankly I tried to do too much too soon. If you work in the NHS could the occupational health department help you? I now work a slightly shorter shift and only one session a week. Of course I earn less!! It is hard working when exhausted. Even talking is exhausting. My colleagues have been great which has helped but my own need to not overburden my colleagues is harder to manage!!
How do others cope with the 'lazy guilt'.

Hi Magso. Thank you. Yip I work in the NHS (the long shifts are a giveaway ). Occ Health have been good. They said they will support me when I'm ready to return to work which I'm pleased about. It's good that you have collegues who are understanding. That must make a big differnce.

Yes to "talking being exhausting"! and OMG yes to "lazy guilt". I'm constantly plagued with this whether it be because I haven't been able to get out of bed of a morning, or haven't been able to wash and dress ds3 of a day, or be able to put dinner on, or take the kids to the park or even read them a book. yes yes yes to the "Lazy guilt"