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Original poster

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:
TheButterflyEffect · 12/01/2011 00:05

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alypaly · 12/01/2011 00:09

hi solo Im sorry you have had similar experiences.
are you still single now. its not easy is it.

butterfly...what virus did you have when your children were young.

I would love to make a connection with all this and get us all treated.

if any one wants to plan anything just PM me. I am up for anything and it would be nice to meet people with similar problems. This illness does make you feel quite lonely sometimes.

TheButterflyEffect · 12/01/2011 00:27

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solo · 12/01/2011 00:28

Yes, it was the hep b for me too. :( it came out two years after the jabs. My cousin had the same jabs for her work and she got MS 2 years later.
I've done a lot of reading/research about it and that was a bell ringer for the start (start's not the word I want, but I can't find it tonight) ah! ignition of ME/CFS and MS. Makes you think doesn't it?

Aly, yes to single...:(

solo · 12/01/2011 00:32

I agree TBE. Because you look 'normal' whatever that is Hmm, people don't believe in it/you. If they can't see it, it doesn't exist. Most of the time, I hide mine, so when someone suggests doing something that I know I wont cope with, I get 'Oh yeah, I forgot about your ME' grrrrrrr!

TheButterflyEffect · 12/01/2011 00:34

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TheButterflyEffect · 12/01/2011 00:37

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solo · 12/01/2011 00:38

I know :(

I don't visit my GP very often about my ME because I feel it's a waste of time. Sometimes I do wonder if I'd get something to help if I did badger him.

I'm to bed. I have another massively sore throat and also cough my way through the night, so not getting much rest.

Catch you tomorrow I expect. Sleep well :)

solo · 12/01/2011 00:40

Your Dad?!! that's awful TBE :( just terrible.

alypaly · 12/01/2011 00:42

i know exactly what you mean solo. I paly badminton to a good standard and that is my only escape. But i come home knackered. Then when i have had illnesses people say. OOOh heard you werent well and i feel as though i am always unwell. I put on a really brave face most of the time and dont like to let people down (like my team) and i probably play when i am not too good.

i look normal when i put a bit of lippy ad mascara on, but some days i look at myself in the mirror and i look like an old hag.

i hate being single...its pretty lonely.i ahvent told anyone about my diagnosis. I am worried that they think its hypochondria.

Just another question to see if we are all of similar characters too??????

would any of you fellow sufferers class your selves as perfectionists or similar traits.

that is also weird butterfly....i have ad pneumonia 3 times in my 30's and my gynaecologist(yes gynaecologist) said it needed investigating but never was.

alypaly · 12/01/2011 00:45

night all. i might go and pop a pill to get some sleep.

its so nice to talk to people in the same boat. but im sorry you are in the boat too.

goodnightSmile

everyone even though its not very MN ish

TheButterflyEffect · 12/01/2011 00:51

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alypaly · 12/01/2011 01:00

whats ptsd...... ooooh 7 hours sleep sounds wonderfulEnvy

TheButterflyEffect · 12/01/2011 01:01

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alypaly · 12/01/2011 01:11

was just wondering. Thought we might all have similar charcteristics or mannerisms as my doc said that chronic fatigue can affect people with and an obsessive or perfectionists nature ,that tend to wear themselves out.

i really am going to bed now and my letter F is annoying me as it wont press down properlyHmm

treedelivery · 12/01/2011 11:26

lol at f troubles. That made me chuckle

Too tired to really chat, but so lovely to hear all these voices. Frankly strange as it all sounds so familiar, I can almost hear myself sating lots of this.

I am not a perfectionist as such, but I have really high standards in some things, but not others Hmm I am a stressy person, but I never seem to realise I am stressing. Oh blimey does that make sense? I over think things - I think that's it.
I can totally see how my personality would be exhausting to carry about Grin I have said many times that my stress response is to get very sleepy, which it is. People always seem to get sleepless with stress. I could literally fall asleep where I am sat.

TheButterflyEffect I'm sorry to hear that it effects your mobility. Whatever I have is not like that, and I am mindful of this. I am at the mild end of the spectrum for sure. Sorry to hear about your dad, mostly Angry though. You have a left arm you could use to bop him on the nose Grin

Solo hope the throat is better. Mine is just there, tight and dry. Sigh.

alypaly you sound pretty fed up. I hope you are ok, maybe today will be a better day. What are you up to?

I'm meant to be sleeping as was in A&E with dd2 last night and heve eye clinic with her this pm [she has a funny eye thing that started yesterday],, then she slept badly and we are all totally knackered. Slept in till 8.10, poor dd2 was trown into uniform and slung into school with a banana and an oat bar for breakfast. First time that has happened and I feel really bad about it.

Ranting now, can;t be that tired Grin

solo · 12/01/2011 15:52

Hmmm...I am a bit of a perfectionist, I also over think things, but I was told right back at my dx that you never get a lazy ME sufferer...so when I was told that my exsil had ME, I was Hmm because she's never worked a day in her life and is the laziest person in the world. ME sufferers are generally people who don't just go the extra mile, they put in an extra 10. That was definitely me back then.
I will say that in the last two years, my standards have avalanched slipped big style, but I think hat's been tied in with the whole depressed state I've been in tbh :(

My throat feels like it's full of razor blades today and I have a terrible headache.

alypaly · 12/01/2011 23:46

yeah me too solo. have always given 110% to everything and everyone.Have recently decided to try and achieve 90% and to call that my new 100%. As a consequence,i have burnt myself out i think.

Has anyone else got dry or sore eyes with this. I am having a real problem with these at the moment.putting drops in every few hours but its not really helping. Feel as if i have rubbed sand in them all the time. Hope my rheumatologist comes u with an answer in febSad

hi tree......yep i am fed up. Fed up with having ill health,had gall bladder out last year and was really ill. have had pancreatitis twice in the last 3 years and i dont drink. They reckon that can be auto immune too. God i sound like a right hypochondriac. But im sick of it. Never smoked,hardly touch alcohol (maybe 4 units a week if that) always been sporty. But unfortunately suffered from depression?anxietyfrom childhood and been a really poor sleeper for 22 years

kayah · 12/01/2011 23:57

I haven't had time to read the whole thread
have you been tested for Candidiasis?

My friend gone through postviral slump and was lucky to make himself better by good diet, some drugs etc.
have look at his site - go to the bottom of home page for chapters on his struggle and recovery :)

www.daves-pvs.org.uk/

alypaly · 13/01/2011 10:42

hi kayah.

my viruses as far as i know were years ago.

have been slumping for last 2 years..... just developed vag thrush a second time since xmas. Other than that i havent had it in 10 years

alypaly · 13/01/2011 14:38

just struggled to walk round tesco. feel as if im just going to fall over. memory is playing me up too. just feel fuddled.

my limbs feel so weak too. just got on the scaled and ive lost 10-12lbs.

what is going on.

all i want to do is sit down and cry. feel soooo weepy at the slightest thing. Is anyone else the same

solo · 13/01/2011 19:01

Oh yes aly, but I just put it down to my depressed state tbh. This morning after I dropped Dd at nursery, I came home and went back to bed and slept for 2 hours...I'm sooo tired.

Have you talked to the doc about your weight loss and weepiness? if not, perhaps you should

alypaly · 14/01/2011 10:08

solo did you say you were 29. you sound as if it affects you like it does me(or vice versa.)have rung the docs again today as i feel so bad. dont know what good it will do. the combination of sore eyes,weakness and fear is really getting to me at the moment. i am hoping to get to the immunologist soon so that he can rule out anything that causes muscle wasting. i can visible see my tone going. and i was so sporty. its not my age...im only 54 and did have alot of living to do. but not like this. this is sheer exaustion.

alypaly · 14/01/2011 10:12

sorry solo.........its tree thats 29.

wish you all lived nearer,you all sound really nice, friendly and caring.

solo · 14/01/2011 10:19

Lol!!! I wish I was Aly, it'd be pre ME and I'd not have married second arsehole yet...but I'd want to know he future so that I could do it all differently...

Yes, shame we aren't near to one another, we could have a great support group going in real life as opposed to hoping one of us is online to 'listen'. Ah well, we are lucky to have the support anyway aren't we? :)