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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:
alypaly · 18/01/2011 13:21

had the same one10 years ago and he gave me IVIG (intravenous immunoglobulins )and i felt like a new woman 3 weeks after to infusion and was much more human for 6 years.
gradually this has all started coming back so i am hoping hw will give me the same treatment. wish i could get a proper definitive diagnosis though.

alypaly · 18/01/2011 13:22

fingers not working properly or is it brainHmm

rockinhippy · 18/01/2011 14:18

probably both :(

Interesting treatment Alypaly good you've got the same guy though, sounds like he's forward thinking & you can trust in him at least

got to admit I'm never quite sure whether the definite diagnosis is a good thing or not Confused....good to have a name, & I think these days most Doctors are far better than they were over it, but it can make it very hard to get anything else taken seriously, as they just tag EVERYTHING down to FM (& ME in my case) ....I've even had cracked ribs blamed on it Confused

treedelivery · 18/01/2011 21:39

Hi all, am rather snowed under with stuff at the moment. I will read properly tomorrow night after work, I don't want to skim.

Sleep tight all Smile

alypaly · 20/01/2011 20:43

hi everyone.....had a rotten week this week. Eyes deteriorated and have been so sore. been to manchester eye hopsital again and they have now come uo with the same diagnosis as GP.

They both think that i have Sjogrens disease which manifests itself with all those symptoms. They have put punctum plugs in my eyes to stop my tears from draining away ,so hopefully my eyes might get better.HmmI have been put on 30mg steroids daily as my arm and leg muscles were so sore and my joints hurt too. The eye hospital has now had to put me under a corneal specialist as i have now stopped producing the grease required in tears and my eyelids have been scratching my eyes.

Cant believe how similar these symptoms are to 10 years ago when i had IVIG. They have told me there is no real treatment but i am still going to fight for IVIG.

treedelivery · 21/01/2011 23:06

Oh alypaly. I'm sorry to hear this.

I will google the disease to find out more, as I've never heard of it.

You fight for your IVIG. Can it be done privately?

ThisIsANiceCage · 22/01/2011 21:00

Hi all. I've been hiding from this thread for ages, cos it's having such a profound effect on me - in a good way, but very painful. Might tell you all one day what you've done for me, but can't weep right now as have a job to do.

I'm going to try to make it to the National Day of Protest Against Benefit Cuts on Monday, and take a poster displaying the people who can't make it.

More on this thread - but basically send me a largish pic of yourself by email. I'll PM anyone interested with the email address.

alypaly so sorry to hear about your diagnosis. Hope the rest of you are as well as you can be.

ThisIsANiceCage · 22/01/2011 21:01
treedelivery · 22/01/2011 21:21

I haven't said a proper hello to people I haven't said...well...er..hello too

ThisIsANiceCage · 22/01/2011 21:29

Ah, I don't have childcare or work - and I'm in awe of those of you who manage either, never mind both, while ill.

Oh so know what you mean about trivial, moany sounding stuff. I started a symptoms list for the doc and entitled it... "The Hypochondriac's Laundry List".

solo · 23/01/2011 12:35

I don't get any disability benefits either but I do wish I could join you thisis and have you got a slogan yet?

ThisIsANiceCage · 23/01/2011 14:03

No, still slogan-less. Sad I expected more of the hive mind...

Would it be very cynical of me to suggest we get over there and start brainstorming, to keep bumping the thread a bit?

treedelivery · 23/01/2011 18:00

I ache all over. Have spent most of day in bed, get up and potter down to try engage with a child, then give up and come back. I managed the ironing in an energy surge, that took 2 hrs.

Tough going this. Such a waste of days off and dh being at home.

ThisIsANiceCage · 23/01/2011 21:20

Sad for you, treedelivery.

alypaly · 23/01/2011 22:28

hi treedelivery.....had a slightly better day with less aches and pains yesterday. steroids seemed to have helped with that but im sure it will come back as soon as they are stopped. Eyes were a bit better too, but today they have been agony.

i am sooo depressed and weepy. cant see for 60-70 % of the day. Its like looking throuh blurred galsses and rubbing sand in my eyes

solo · 24/01/2011 10:58

Aly, I'm so sorry you are feeling so awful atm. Be kind to yourself and believe that it will get better. sending good vibes to you.

Last night, I sat with an ice pack on my neck as I couldn't swallow anything at all and it helped a lot, but still have a dreadfully sore throat today. Doesn't feel quite like I have a football stuck in one side of my throat...I had my tonsils out over 40 years ago and I can honestly liken the pain to that time. Strange how your memory is to things that are a life time ago!

alypaly · 24/01/2011 12:56

solo....what do they reckon is causing your problems....is it CFS or sjogrens giving you a sore throat.

solo · 24/01/2011 13:22

I don't know aly, but I've never heard of sjogrens before you mentioned it.
I used to always get a sore throat because of the ME, but was lucky enough to drop that symptom for several years. It could have come back, but it could just be a virus too.

I don't go to the docs about the ME very often as it seems a waste of time...perhaps I should.

alypaly · 24/01/2011 23:27

sjogrens causes sore throats because your saliva gets less lubricating annd hence you get a dry throat. do you have all the other symptoms,of fatigue,sore joints,wrists,ankles,hands, weakness drying hair ,going upstairs etc.

solo · 25/01/2011 11:32

I do, but it's always been put down to ME. I would say that my limbs are mre painful than my hands/wrists/ankles etc though.

alypaly · 25/01/2011 23:17

my muscles ache when i squeeze them lightly as if i have done major over exercising.

treedelivery · 26/01/2011 09:59

It sounds the pits. Sad

have a question about the cycles. I always imagined well/unwell cycles to be long. Weeks if not months.
This thing I am living with has short cycles. I was desperate all weekend, then ok Monday&Tuesday, and back down today [probably good old fashioned tiredness and stress today though].
So my cycles seem to be 3-4 days.

Does that seem odd? Or maybe I would have been ok straight through, if it hadn't have been for work last week.

Solo - I'm inclined to think you should go to gp, if only to have the documented paper trail that this is happening to you. Having said that, I am not sure I would. It's depressing, demoralising, has little effect on actual illness and it's energy draining. It's tough to know what to do for best.

solo · 26/01/2011 09:59

My leg muscles contract (on their own) when I'm tired...it is strange to see!

treedelivery · 26/01/2011 10:14

x posts Solo.

Do they twitch or properly shoot about? Sounds bonkers!

I might ttry and sleep. I have 1.5 child free hours for 1st time in ages

solo · 26/01/2011 10:28

No, they just tighten up. It's not very pleasant.