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!

Oh Solo you and me both. I'm just trying to focus on when I WILL feel better and can do more at the moment. If I let myself think about what I'm not doing I'd slip into oblivion I think.

When my lounge wall desperately needed repainting before the Educational Psychologist came for a home visit to do with ds1, I got all the stuff out to do it on one day, masked up the next and rollered the wall the next. Daft, but I felt a huge sense of achievement afterwards.

Forward planning and trying no to think about what's not getting done is the way to go - for me at least.

Don't try and do anything now though, you just can't when you are at your lowest and if you try you'll only make yourself worse. You need to feel better for a few days, then plan, place yourself and do it gradually.

I do know how you feel though, I've been in bits all over the weekend because being this weak really frightens me and brings back old memories that I'd rather forget.

My lot are Ds1 (almost 9) Ds2 (almost 7) and Dd (just 2 and boy don't I know it!). I also have to very hairy dogs, who I adore, but who constantly make my life harder by covering everything in clouds of their fur. I did have three dogs until recently, but my poor old girl had enough two days before Christmas.

Aw moose, sorry about your doggy. I lost my last one in June 08 and was dogless for 2.6 years before I took her on...when I gave Mollie a home, I suddenly remembered why I hadn't wanted another dog...hair rolling down the hallway, vaccuming the house 4 times a day etc...never again until I'm about 70 me thinks.

The trouble with the doing for me is that I start things and then get side tracked/run out of time/something happens or I just plain run out of steam and S.T.O.P. and by the time I get going again, it's all been undone. Sometimes I wish for a cyclone or similar to just take it all away and then I could start again . How embarrassing is that?

Solo, I think that's just life with kids, you spend your life cleaning etc and they spend theirs undoing it all behind your back as you go along. I was saying as much to dh this lunchtime. I find it unbelievable that with me being in bed for just two days, every single area of the house is not only a mess, but also absolutely filthy. I think the cyclone has already visited our house - and not in a good way.

Well, the school run has all but finished me off today (and I've done literally nothing else). I was shaking and seeing stars before I left the house, just with the effort of getting dd in the pushchair and putting my coat and boots on. Walked really slowly down there (we only live across the road) and found a bench to hide on, but as usual ds1 was last out, then forgot several things and had to go back in twice. By then I was holding myself up on the pushchair (thank God for sturdy 3 wheeler buggies) and his numeracy teacher was giving really strange looks. Then his teacher decided she wanted a word at the last minute, all the time with me trying desperately not to look as if I was about to keel over. Then we got home and I couldn't get the pushchair up the step or lift dd out of it, cue much tantrumming on her part and me snapping at her causing an even bigger one.

I just had to crawl onto the sofa and stay there until five minutes ago, when I managed to pour three drinks of water and dole out some biscuits in lieu of a decent after school snack.

Both boys have homework that needs my help as well and I can't, I really just can't. Am working myself up to helping ds2 with his numeracy when I can face the walk to the kitchen, but then he still needs to read to me and do his spellings. Ds1 has literacy to do and they won't let him bring his alphasmart home, so now I have to supervise him doing it on my laptop and get it printed out (not as easy as it sounds with our printer and wifi). God I loathe homework. Fortunately he doesn't need to do his spellings, as he seems to have been born able to spell and gets full marks every week whether we practise or not - much to the chagrin of his younger brother.

Right, I suppose I can't put it off any longer ... wish me luck

Good luck Moose. Hope you have battled through the last push to bedtime. It's so fecking frustrating and upsetting isn't it?

Have had a dreadful day too, wasted with insomnia, then slept waaaay too late and now I'm not ready for the week ahead. Damn it! Although I haven't felt as ill as you and Solo. I'm sorry you are both in a low ebb right now

I go away tomorrow, an overnight stay with my bessie mate in whole world and my lovely God Daughter I don't see enough of. Rather miss my own kids to be honest, I haven't seen them for more than 5 mins since Saturday morning. So mixed emotions about gong away for a night. Be good to get some space and freedom, but really I need to sort the week out. I haven't prepared for teaching on Thurs properly and laundry is growing and house has had every room trashhed because I have been on nights and I'm only one who cleans and tidies as I go. Why when you are not there, do they have to trash your house?

My poor mum arrives tomorrow, to bedlam, afterschool clubs, school runs, preschool runs, a tip of a house, no food in cupboards....Jeez

Oh well. I can't do diddly about it now, and I am frankly too sensible to go cleaning and organising now. I need to try get back into ta day/night routine so I can function for the rest of the week.

Sorry for the rant! I really hope you feel better soon SOlO, and Moose, I hope for a better school run and more rest tomorrow. x

Hope you all got a good nights rest. Sorry you feel so weak Solo. I know what you mean about starting things and just stopping!! I used to get upset at it but now justify it as 'energy pacing'. Tree I have no idea how you manage night shiftsHope you have a lovely day with your friend. My house is constantly trashed - some days I could cry. Ds plays in the night (I do not always wake) so by morning it looks like his bedroom has been burgled. He has night terrors and sleep walks but seems to manage to get down from his mid sleeper and avoid the million obstacles!! Alypaly how are you?

Lordy, I have the heavy limbs today...very tired. I need to get into an early night routine I think. Blooming MN!

Hi all. Having a bad week already. Was in a car accident on Sunday and the whiplash is starting to make itself known now - boy do i ache!!!

Hope you are all well

MRH, goodness! what happened?! thank goodness you are (largely) Ok. Whiplash is painful...please be kind to yourself.

Cheers Solo, i was rear ended by a 4x4 (i was stationary in my KA he was going about 20-30mph) trying to rest up but i keep looking round and seeing housework that needs doing lol

Well, I was coming on to see how everyong is and hopefully get a little support after a very tough day, but now I think I might give this thread a miss for a while.

So - its unnacceptable for people to class ME/CFS etc as psychological because you have a similar condition, but ADHD 'and the like' etc are actually just blame seeking bad parents' excuse for having naughty children?

I don't usually do this - am very low key and lurky generally speaking - but your post yesterday really stuck out, so I remembered it and I wouldn't be happy seeking support from a thread where there are others of that opinion.

There but for the grace of God.

Just as you would like others to be more understanding of your condition before judging you, perhaps you should do some research and find out the facts, before you make such inflammatory and hurtful judgements about others

Actually I might just de-reg myself from MN completely. I'm sick of all this crappy judgement from people I don't even know.

moosemamma can i perhaps point you in the direction of the two threads that came off the back of the unpopular opinions thread and read my other posts - rather than dragging it onto this thread - and once you have done so perhaps if you feel like entering into a conversation about this matter feel free to PM me so as not to disrupt a support thread.

Thank you.

and if you are going to quote my first post please do so correctly

I am also of the opinion the majority of ADHD/ODD and the like is actually just bad parenting and people are too quick to seek other people to blame for their childs behaviour rather than accept they just have a difficult sod of a child.

You will then see that i did not say ALL i did not say it doesn't exist I have never said this. If you read my posts on the threads i have pointed you towards you will also see WHY I have this opinion.

Anyway this is not the thread to have this discussion on and I apologise that my posts from other threads have been brought over here.

Sorry.

Sorry to see you upset moosemama. Self opinionated judgements are usually based on ignorance of facts................Enough said.

Dont de-reg because of small minded ppl I just got here and your advice was invaluable to me :)

Don't leave. I will. It'll be easier if people aren't prepared to read why I hold the opinions I do, and rather than cause any further upset I'll leave you to it and seek support elsewhere.

My apologies to you all

MrsRH, I apologise, you are right - in this instance. I shouldn't have dragged it onto a support thread. I just saw red and posted before thinking and it came from a place of feeling vulnerable and needing support, only to be confronted by one of the very reasons I was feeling vulnerable in the first place.

You are of course as entitled as I am to come to this place for advice and support and as you said, that is what this thread is for after all.

So for that I apologise both to you and everyone else on the thread.

I have read the threads you directed me to - I wasn't aware of them until you did so - and I see you have apologised for causing offence. Fair enough, it was a thread for unpopular opinions and therefore likely to cause offence after all. I should have known better than to read it.

However, if its all the same to you, I would prefer not to enter in a pm conversation with you about it. I have read all your comments and explanations and don't really see that we will ever agree. Besides, so many other people have put it so much more eloquently than I ever could and I see no reason to go over old ground and start a new ruck.

Again, my apologies to everyone on the thread.

I have found one of the most distressing elements of PVFs is the lack of medical and scientific knowledge/understanding.
I know that I have got out of condition (I used to be very fit) but I find it hard to blame everything on 'deconditioning'. Afterall people who are below average fitness by choice ( rather than illness) do not suffer dry eyes/ dizzyness/ sore joints/ memory difficulties /speech difficultie/muscle pain/ jaw pain/swollen joints - etc just for doing their usual level of activity. Frankly until I got ill I knew very little about ME/CFS so had no idea how ill people can be.
I hope you are all Ok. Its awful having to live with feeling as bad as most of us do.

Thanks magso. That's precisely why I'm so reticent to go there again. I was first diagnosed with PVFS a little over twenty years ago, then CFS when I was in my early twenties, but I refused to accept the dx because I was the sole earner at the time and didn't want it to affect my employment prospects.

Now I'm thinking, what if I go to the GP and they just brush me off? After having the worst relapse since the first dx, I don't think I could take it. I am dreading the whole bit they do with the shaking head and 'You've been googling haven't you Moosemama? Tut, tut, tut."

Today I seem to have hit an all time low. I hadn't experienced speech difficulties before - until today. Well actually its been coming on over a few days, struggling to think of a word, then saying it and the wrong one coming out, or not being able to recall the word at all.

Today things went to a new level, I was with my Mum and I just couldn't speak properly. I was slumped in my car seat, barely able to stay awake/conscious, slurring, not being able to find the words and saying the wrong word all at the same time and I was frankly terrified. Mum panicked too, she was all but ready to drive me straight to A&E.

This came after a morning spent at the hospital with ds2. He was supposed to be discharged from the Opthalmic Consultant, but instead they found that his eye problem has worsened considerably over the past 12 months since he last saw them and we are back onto 6 weekly appointments. I then had to somehow summon up the strength to walk into town and take him to the opticians for new glasses. Mum came to collect us afterwards and I just about collapsed into her car.

Have been home for a few hours now, had a lie down for an hour when we first got back, Mum collected ds1 for me and since then have only left the sofa to change nappies or grab water and snacks for the dcs. I am now just about functioning at a very low level and the slurring etc seems to have stopped.

I'm seriously worried about what will happen if I don't manage to pull out of this soon. Mum is having a hip replacement at the end of February and there's no-one else who can help with the dcs, so I HAVE to be at the very least coping by then.

Anyone else had the speech thing, as I said, its a totally new one on me and very scary.

Well I do! When I'm at the dog tired stage I look drunk (wobbly walk) sound drunk and feel drunk but only on water!! It used to scare me but I've got used to it now!!
Do you think you could get respite for ds1 or other support if your mum is out of action? Ours was arranged as a tempory measure because ds needs full on constant energetic attention and I kept keeling over!! I am so sorry you have had a bad day.

How is everyone else?

Thanks magso, that's reassuring to know. Not that you get it - just that I'm not alone with it, iyswim. I think Mum thought I'd had a stroke, poor thing, I really frightened her.

I don't think we'd qualify for respite, ds1 isn't bad enough. I'm sure we'll get through it, might just involve a slightly less nutritious diet for the dcs and some extra nintendo ds time for ds1.

moosemama - I read this a few years back about some ME/CFS research.

"One particular area of the brain - the Wernicke area, essential for understanding and formulating coherent speech - showed evidence of reduced activity after exercise."

Does that sound like what you experienced? Or did you feel so awful in general that it was difficult to speak? Or weakness in the muscles needed for speech?

CFSKate, it actually felt neurological. Like I was struggling to think of the right word, felt like I had it, but then spoke the wrong one and it came out all slurred. Lots of long pauses, while I tried to either get the right word out or to assemble the words in the right order and all the time I was kind of crumpling up in my seat, unable to hold my head up properly - that bit did feel like my muscles were just too exhausted to do it though.

I was beyond exhausted though - would mental fatigue do this?

I have tried to do a bit of reasearch, but I'm just not taking anything in at the moment.

Oh, just remembered my hands and feet went completely numb as well.

I've had lots of pins and needles recently - almost constantly infact and had put it down to anxiety, but now the anxiety about ds1's diagnosis has passed, I no longer feel anxious but still have the pins and needles.

Well I still think you should ask the GP. All new symptoms need investigating and you should not feel silly to ask the GP.

I have had the speech thing too...not being able to find the word was one of the many first symptoms I had, plus a sort of stutter where the word gets stuck half way...very weird that is. I have been asked on more than one occasion if I'd been drinking when I hadn't because I was slurring.

I second the going to the GP moosemama. Go; you have nothing to lose IMO.

moosemama - Sometimes sheer weakness means that I cannot physically speak without great effort, or, I can say the sentence once, but if I am not loud enough to be heard, I am asked to say it again and I just can't.

Other times, it is not physical weakness, it is in my brain, like I reach for the words and they are just not there, or I get the wrong words instead. I can have trouble understanding what people are saying to me, or being able to find the words to say what I want to say. So this sounds a bit like what happened to you? I also know what it is like to be too weak to hold up my head properly.

About the mitochondrial dysfunction, you said "am a bit afraid that if we find out that's us I'll feel forever responsible for ds1's problems" - if your family do have it, it might not be from you. I know mitochondria are inherited from the mother, but I've heard doctors distinguishing between
inherited mitochondrial dysfunction and acquired mitochondrial dysfunction. (But in any case, you shouldn't feel guilty.)

mitochondria and CFS
www.prohealth.com/library/showarticle.cfm?libid=7741

This other link isn't about mitochondria, it's about a virus found in ME/CFS, it shows families with the virus where the parent has CFS and the children have autism.

niceguidelines.blogspot.com/2011/01/high-prevalence-of-xmrv-in-families.html

The mycoplasma stuff is also interesting, but I don't know much about it.