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!

[Starisonthetree]

Some of your symptoms are those of ME, but could be other things too.

To have ME you need to have had the symptoms for over 6 months.

In Essex there is a Chronic Fatigue service that diagnosis and supports. It would be worth checking what there is in your area.

Good Luck with the GP, most are more understanding than 20 years ago on this subject

[ThisIsANiceCage]

"OOO you'll pay for this good day tomorrow"

Yep, big, big alarm bell. ME can only be diagnosed through exclusion, and because no one actually knows what it is, you might get any reaction from "it doesn't exist or is psychosomatic" through to "it's your heart," from your doctor. There's also a bit of empire-building going on among UK ME specialists, and consequent tendency to label all unidentified Tired All The Time stuff as ME/CFS.

But it's quite important to rule out other things that could be causing the same symptoms. A list like your OP is a good place to start.

[Christmastreedelivery]

Thank you for your responses ThisIsANiceCage and Starisonthetree.

I think I feel that perhaps I am 'just' tired all the time, and searching for a good name for it. Other than 'tired and need a holidayitus'.

But what is really pissing me off is that when I have lovely things going on, or a nice weekend of things planned, I am often too sore/ill/down/tired/sore to enjoy them. DId I mention how sore it all feels. I hurt. I have done nothing much, and I hurt.

And really, even if you are tired and a bit snowed under, in the face of a lovely day out or a planned treat with the kids, surely a person whould be able to buck up and stick a smile on? I just lie there, waiting to feel better. Crap.

Will bring list to GP, good idea!

[moosemama]

Hi Tree, you and I are so alike. I have been through this loop, starting after nearly killing myself trying to do an impossibly stressful job in my early twenties.

I've had post viral syndrome, ME and CFS bandied about and certain doctors made it their mission in life to try and prove or disprove any of the above. In the end I got fed up with it all and stopped asking for help. Now I just manage the symptoms as much as I can.

Like you if I do anything requiring any energy, be that mental or physical, I suffer for it afterwards. Most weekends are spent with me feeling rough and 'resting' which has a hugely negative impact on the whole family and my relationship with dh. If I don't rest at weekends I struggle to get through the next week though.

I do know that if I eat a really healthy diet and build up my exercise (walking) gradually I definitely feel a whole hell of a lot better. When it gets really bad I try to do this, but its so hard, when you are really tired and overloaded with life to make yourself do it sometimes.

The other thing I had mooted (by the Consultant Neurologist that found lupus-like lesions on my brain) was Lupus, but that came to nothing and despite her deciding it wasn't Lupus, they never investigated further. So now I now I have the lesions, but don't have any idea why.

Finally, have you considered the possibility of Fibromyalgia? The bilateral pain you mention is an indicator for that as well.

As ThisIsANiceCage said, take your list of symptoms to the GP and demand they run some tests. You shouldn't have to live your life like this, you deserve better.

[ThisIsANiceCage]

Yep moosemama I'm at the staying away from doctors stage as well. They can't cure it and can put you through a lot of hoops trying out unproven therapies.

I so hear you about the missing out on nice things, Christmastreedelivery. It's grim.

For me, the thing that made a real improvement was ceasing to think of myself as a well person who had to keep cancelling things, but to think of myself as a sick person who could do an awful lot. It's feels kinda selfish to organise your day and the family's life around your illness, but by being realistic and building rests and limitations into your daily plans - just like children's naps - you may be able to achieve more than if you carry on as normal and keep crashing.

Good luck at the doctor's!

[Christmastreedelivery]

Hmm.
Really, I guess that there isn't much point in GP involvement is there? They can't actually cure, and painkillers are cheaper to buy than get on prescription. So what's the point in going. Although I should get the alternative diagnosis' ruled out I guess.



Maybe mentally, it would be easier on me and the surrounding people if we all had a label. A label other than 'Tree is on the couch watching Miss Marple again' label.

Moose at the idea of the diagnosis being left in mid air. Are you tempted to write and ask for clarification? As in what it means and should you forget about it?

[FanjoForTheMincePies]

could be ME but well worth a blood test to check your thyroid

[FanjoForTheMincePies]

again!

[FanjoForTheMincePies]

(i have ME but had tnyroid tests today because of new fatigue/exhaustion)

[GotArt]

Go see a naturopath as they will ask hundreds of questions and get to the bottom of it and won't pass you off with some medication or tripe about getting out more, blah blah blah. Thoughts become things; choose the good ones. And on your days you do feel good, don't overdue it just cause you think you can.

[ThisIsANiceCage]

Yy to importance of ruling out other stuff, it might well not be ME.

Also yy to importance of label from the White Coated Ones- it makes it soooo much easier to deal with other people.

So instead of, "I don't think I can come, I'll be tired" (cue people thinking, "but we all get tired"),
you can say, "Sorry, I'm only supposed to do X amount today and I'm up to my limit."

Or instead of, "I don't get up till midday" (= lazy skiving git)
you can say, "Sorry, I'm supposed to rest in the mornings."

A label doesn't solve the problems of being actually ill, but it does help with the guilt and failure and generally head-fucking aspects of wondering if you're just lacking in moral fibre.

[TheFarSide]

How old are you? I have most of these symptoms and I am perimenopausal. The only thing I don't have is needing two days of recovery time after a busy day.

[Christmastreedelivery]

Right. Will do.

Now, a rude and odd question.

To those of you who have gone through the diagnosis, and all that might entail. Was it worth it? Does it change anything?

I ask because when dd2 was being diagnosed with dairy intolerance, every appointment felt like a battle. A tit for tat where I said 'x happens', they fobbed me off with jargon, I flung some seriously informed and researched jargon right back at them [because I had been up all night reading papers and happen to have a diamond mate who is a biological research scientist], to which they shuffled about uncomfortably and said come back in a month.

I haven't the energy, even if I do have it. Which I may or may not have.

[Christmastreedelivery]

Sorry, my post x posted with everyone and then mumsnet went off line and now my questions have been answered before I asked them Slick!

Will look into that TheFarSIde. Hadn't thought of that.

[Christmastreedelivery]

35 by the way

[stayathomegardener]

Is it slightly seasonal?try high dose vitamin D or a light lamp.

[ThisIsANiceCage]

"A tit for tat where I said 'x happens', they fobbed me off with jargon"

Ah. Yes, pretty much exactly. But instead of the sick person having an intelligent and articulate advocate, you will be both the sick person and the researcher/advocate. Even when you can't retain half a page of info, string words together intelligibly or sit upright long enough to have a meeting.

And they will never believe anything you say about pain or anything else, because that's just your perception, and since you're mentally ill you would say that wouldn't you?

But yes, for me just having the label has been worth it. It stopped the endless searching for what this stupid thing might be, and meant I could just get on with getting on.

Sorry, my view may be unduly bleak. Some people find their doctors helpful, and by cutting back early enough manage not to become so severely ill.

[stayathomegardener]

From what you describe and how it affects your life,I would not class this as mild,if you can summon up the energy maybe be a bit more forceful tomorrow with GP.

[sharbie]

welllll a label for your illness is important if it comes to claiming benefits etc. if you become too ill to work.
i would doubt its ME if you can still work full time but would def rule out other stuff like thyroid or lupus for sure.good luck.

[Christmastreedelivery]

It isn't seasonal really stayathomegardener, which was very frustrating in the nice weather when all I wanted to do was ache. Might give the supplements a go though, as it's worth fighting fire from all angles. Thanks for the idea.


Well, I have appointment tomorrow. Maybe they will be supportive and responsive. Shouldn't pre judge really.

If they offer me antidepressants I may go nuclear. If they offer to screen me for depression, then I understand that. But if they leap in then I'll be miffed. I don't feel in the least depressed. I am fed up of aching joints and sore throats and having to go up the stairs on my hands and knees. That isn't so unreasonable as to be mental illness, is it?

Thanks so much for all the replies.

Am a bit concerned at idea of cutting back. Seems fairly unlikely, and I work shifts too. They are murder.

[ThisIsANiceCage]

NICE describes mild ME as the stage where you can just about carry on working full-time but have to drop all other activity and rest all weekend, iirc.

I ought to go look up the document, but can't bring myself to read it again.

Also, don't want to give you cyberchondria just before your trip to doc's!

[ThisIsANiceCage]

Sore throat? Yep, shove that on the list for tomorrow.

[Christmastreedelivery]

Sorry xposts again. I only do 23 hours, although a physical demanding job. I am generally awol after the shifts. I 'drift out' after 12 hours or so, and I come back from the sleepy place after 2-3 days, depending.

So I consider whatever series of moans and groans I have to be mild, I can hold down a job and do the school runs etc etc. I am pretty sure I have nothing serious, and for that I am grateful and I apperciate my luck. I am essentially healthy. I think.

Today though. Urgh today. Sorry to moan, it's so tedious, but blimey my knees and my wrists. My fingers hurt typing [note am able to maintain mn abilities ]. My mood has been awful as I feel like I've just been hit by a tired brick. I just went downstairs and even putting my feet on the steps just made my legs ache. I have shooting pains up my thighs, and I swear my pelvis feels like it might just give way.
Throat is sore, I feel dry and thirsty, yet I'm sat sweating. Bleurgh.

Moan over.

[ThisIsANiceCage]

Benefits? Ahahahahahaha...

[Christmastreedelivery]

Nothing serious as in nothing to immediately threaten my life. I know ME is a serious condition and seriously life changing. Hopefully not though, hopefully I am run down, need to lose weight and exercise more......all that stuff.