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Could I have [mild] ME?

849 replies

Christmastreedelivery · 14/12/2010 21:19

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!! Xmas Hmm

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

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 Hmm face!

OP posts:
SoloIsAHotCougar · 12/05/2011 00:03

Thanks moose. I have some in the cabinet that I've had since before my life changed...when I was seriously fit and training to do my job. Didn't use them much tbh as I never had time Hmm, but I might just break them out now and again :)

CFSKate · 12/05/2011 08:42

There's a meeting in Liverpool soon about ME www.meassociation.org.uk/?p=6052 and also one in Belfast www.meassociation.org.uk/?p=5964

Celestialstarlight · 15/05/2011 22:13

Phew...you are still here. All but two of the threads "I'm on" dissappeared. I thought for a minute I'd lost you all. Terrible thought. anyway just wanted to say hi. That's all really cos I'm so tired and achy just now. Will catch up with y'all later Smile

SoloIsAHotCougar · 15/05/2011 22:21

Hi Celestial.

belleshell · 16/05/2011 12:19

Just wondered if i could join in.......Ive had ME symptoms for Approx 9 years, but after every test under sun (as u all well no!!! nothing, other than a diagnosis of paraplegic migraines) i was diagnoised 2 years ago, Just coming throu a ME crash, trying to get back to some normality what ever that is and heading off to bed any min now cos its comfy and warm there and its quiet!!!Hope u didnt mind me saying hi!

moosemama · 16/05/2011 13:47

belleshell, hello and welcome. Smile

Just popping in - all my threads had disappeare from threads I'm on.

Went to a festival with dh and dd this weekend. We had a lovely time, but I had a really scary rapid crash on Sunday evening and had to be practically carried back to the camper. Embarrassingly I sat and sobbed for a while, then had a lie down and dh made me a warm drink and I just about managed to make it back up to the festival in time for The Beat and Transglobal Underground, which were the two main bands we wanted to see and the reason we stayed late on Sunday in the first place. I had to watch them sitting in a camping chair in my heavy winter coat, hat and mittens and under a blanket - but at least I was there. Blush I think I really frightened dh though and he is now nagging about me going to the GPs again. We had a long talk about it, because I really don't want to go and get sent to a psych and prescribed GET or worse, be fobbed off and spoken down to. Dh is worried that it might not be ME though and wants me to at least go and insist on some blood tests to rule out anything sinister. Thing is, I know he's probably right, but I just can't face it. Sad

A couple of our closest friends were upset by seeing me crash as as well. I usually get lots of rest etc before I see them, so they've never seen me crash before and it was pretty dramatic. Sad

Still, it was a good weekend and I'm glad we went, even if I'm going to be relegated to the sofa for a couple of weeks to get over it.

Hope everyone else is doing ok. Smile

Celestialstarlight · 16/05/2011 13:59

Hi belleshell and welcome aboard Grin I hope you find this thread as valuable as i have. In fact it has been a real life line for me. I was misdiagnosed only a few months ago with CFS/M.E. but in all probability I've had the symptoms for over 10 years. It was only after having flu last year and having another crash that I realised I needed to push the issue withmy GP. For over 10 years I'd been going to the GP with symptoms of overwhelming tiredness, back ache, joint ache blah blah blah only to be told everytime to take ferratin tablets/brufen/co-codamol etc. And now I officially have CFS I've been left high and dry to get on with it myself. So being here has been tremendous support to me.
We all just dip in and out when we can depending on how we are. Even if I don't have the energy to post or add anything just reading the latest posts helps me to feel that I am part of something worhtwhile. I have just this month started back at work following a 6 month crash and i'm slowly starting to build up my stamina in the workplace again but even though I am feeling better I have realised that this is as good as it's ever going to get. I am just about back where I started last year and it has taken me all these years to realise that I have actually been really unwell and never knew why. My good days are most peoples lazy days. I could never understand how people had so much energy for life and were always happy and on the go and I used to sit and feel so guilty that I couldn't take my kids to the park or have fun and enjoy them to the full.I was so envious of everyone elses lifestyles and I emotionally beat myself up about mine! In all honesty I still do but at least I know why I am how I am. I've had great advice and information from the others on here and would be lost without it.
Sorry for all the crappy waffle but I hope you find support and strength here too. Smile

SoloIsAHotCougar · 16/05/2011 14:10
Celestialstarlight · 16/05/2011 14:15

Sorry moose xposted with you. I hope you are feeling better soon what a shitty way to end your lovely weekend xxx

Celestialstarlight · 16/05/2011 14:16

That last sentence should of course have had a full stop in it. grrrrr.

moosemama · 16/05/2011 14:25

Hi Solo and Celestial

Just had a funny thought. No-one batted an eyelid at me being hauled back to the camper and I've just realised everyone probably thought I was really drunk - or worse! Shock Blush I hadn't even touched a drop. Hmm

SoloIsAHotCougar · 16/05/2011 14:33

Moose, don't give it another thought; it's just one of those things and you'll never see those people again anyway and they wont see you!

moosemama · 16/05/2011 14:37

Till next year! Blush

Its a very small festival, you start to recognise people after a couple of years.

SoloIsAHotCougar · 16/05/2011 14:40

Wear sunglasses and a wig; you'll be fine. Stop worrying about what other people think moose, that'll just stress you out more and you'll feel even worse.

moosemama · 16/05/2011 15:40

I'm not really worrid Solo, there were plenty of people there in far worse states than I was. Wink

belleshell · 16/05/2011 16:58

Thanks everyone, i have been reading the last 26 pages over last few days, and cant believe others feel like me!
My diagnosis seemed to be the final nail in my marriage coffin, me and ex split a year ago and i managed so well till 3 months ago.after a visit back to see my family i crashed and spent 3 weeks in bed......it was tough because my kids had to stay with ex for the 3 weeks, i have just gone back to work and i am aiming to get to 24 hours but its tough, i dont ever seem to recover fully from last crash! today i have spent 3 hours in bed.kids with ex this week, my family all live a 100 miles away so going to bed is escapism too......I also use this week to bank up rest for the week i have the kids.....just so i can do the odd thing with them.

its crap having ME int it

NorfolkNChance · 16/05/2011 18:33

Hi everyone

Well I'm back after suffering a major crash. I'm currently in the middle of a m/c and combined with work stresses I am wiped out. I can happily sleep for 18 hours a day and still feel so sore and achy.

Celestialstarlight · 16/05/2011 19:12

I'm so sorry to hear what you are going through Norfolk Sad. I hope things improve for you soon. M/C's are terrible. My heart goes out to you xx

magso · 16/05/2011 19:39

Hi all and welcome belleshell. Good you had a mostly good weekend Moose well untill the crash. Yes I think people think I am drunk (I am unsteady on my feet) I suppose we ( those on this thread) are the least likely to drink!!
Norfolk I am so sorry about your MC. Sending a gentle hug. Don't do too much too soon.
I said I would report back on my magnesium/epsom salt baths but it is too early to tell yet. I made up some body cream (coconut oil, lecethin to soften and epsom salt solution - and a drop of lavender to improve the smell. Ds enjoyed helping but wanted to add all sorts of other ingredients like sugar!!

moosemama · 16/05/2011 20:59

Oh Norfolk, I am so sorry to hear your sad news. Sending you lots of love and light and more ((hugs)) Sad

SoloIsAHotCougar · 16/05/2011 23:55

:( Norfolk. So sorry.

Belle, I too dropped Dd at nursery and went back to bed today. My sleep pattern has gone haywire, suffering the sore throats and headaches that I'd not had for several years onwards and upwards then.

NorfolkNChance · 17/05/2011 08:52

Thank you for your kind words, it was a happy surprise so not planned but we were very excited but hey it happens for a reason.

Trying to keep going for DD as we are off school/nursery today so lots of gentle activities.

SoloIsAHotCougar · 17/05/2011 09:53

I've also lost happy surprises Norfolk, so know how you feel. Just take care of your own needs.

moosemama · 17/05/2011 10:56

Norfolk, Solo is right. Make sure you take care of yourself as well as dd.

Another one that's been back to bed both days so far this week. Dd had other ideas this morning though, so only until 10.00 am.

Had a ridiculously large pile of school letters to deal with and am now panicking about remembering everything for all the different activities they've got until the end of the year. I can't even remember simple things at the moment and am worried I'll forget something and they'll be left embarassed or without the things they need on the day. I have written it all in my diary, but I keep losing the darn thing (and its not little either Blush).

On top of that there's all the crap problems relating to ds1's statement application which was thoroughly messed up by the school.

Last on the list is sorting all the stuff for our holiday. After this weekend, I have absolutely no idea how we are going to fit everything we need for 5 of us and 2 dogs into the camper. We seriously need to look into compact versions of everything, unfortunately, we have no money left to buy any new things.

Just want to go and hide back under my duvet now.

Sorry for the whinge - everything just feels too big and complicated this morning.

NorfolkNChance · 17/05/2011 11:11

Whinge away it's what we're here for! DD is asleep on the sofa but has a sensor if I try to grab a nap too!

Today is being hosted by Toy Story films and Cbeebies and Sid the housework.