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!

I decided to remortgage and buy some vitD, but I keep forgetting to take it.

Magso, it's a case of elimination to get a diagnosis. Wait for the results and talk to your GP; hopefully, you have a good one :)

I hope you are ok Aly.

Sounds like we are in the same pattern magso, I have had the bloods and results in. So now trying the ad's. Be ace if they make me feel better.

Have had more energy since 2 days in, that's clearly in the mind as apparently they take a good 2-4 weeks to get to treatment level. If it's placebo effect I don't care, I'll take it!!

Thanks Solo I did think she listened and I do understand the first thing is to rule out other causes and it is a year since this was last done.
Tree I hope it does help. It is miserable coping with pain and debilitation all the time.
Gp mentioned graded exersixe so I down loaded some information on this from Barts ME centre. I have been doing a sort of graded exersize for respiatory physio but this is more about increasing day to day activity.

Meant to say Ali I have dry eyes and get on well with the new Hylo drops - but we are all different.

Hi, not stopping, just wanted to say, Tree - when I had my ADs after ds2 was born, I was told a couple of weeks to see the effects, but definitely started feeling better after 2-3 days. So its sounding hopeful.

I'm off to bed now. Had two good days, got stacks done, then promptly crashed and had to cancel my physio appointment and have my Mum come and rescue me today. Typically, just because I needed rest and quiet, I had one of my ds's off sick, as well as dd to look after and I couldn't lift my head off the sofa.

I'm seeing the GP on Monday evening and still mulling over whether to broach the subject or just carry on trying to deal with it all myself. Trying to think of a way of dipping my toe in the water to see where his allegiances lie, before plunging in headlong with my suspicions and be told I am a malingering hypochondriac. He's new to the surgery and has been so good with my dses, I am tempted to give it a try.

Think I'll most likely be put straight back on the ADs myself though, possibly with some routine blood tests for back up. Thing is, every time my results come back with raised white cells and raised ESR, but the GPs never join the dots and see the big picture, they always say - "oh you must have just had a mild virus".

The last time I had bloods done, my ESR was so high the GP was actually seriously worried and rang me to come straight into the surgery, then panicked because they couldn't find a cause and advised total rest. Then after two weeks in bed, they retested and they'd come down, out of the danger zone, but still not within normal ranges and she just said, "oh, that's good they're on the way down now, you must be on the mend" and left it at that.

magso has your doc mention sjogrens to you. How dry are your eyes? what other symtoms do you have if you dont mind me asking.

Felt a bit better this week after the blast of steroids but i sure that will be short lived. got the eyes under a bit more control and only using the drops every hour instead of every 5-10 mins.

saw rheumatologist/immunologist yesterday and they have put me on hydroxychloroquine (plaquenil) and he has taken loads of blood for tests....and a 24 hour urine sample which is gross.

Ooooo Moose - I was just going to contact you to see how you are. Will do so this afternoon in another 10 min gap in the bedlam of homelife! Sorry to hear you are wiped out, not good.
I just came right out with it when I went to GP. I figured they had a 10 min slot and didn't want to mindread. SO I just said it. Was hard though.

alypaly - I had to do a 24 collection once. Yak isn't it!? Glad the eyes are a bit better at anyrate. Had the rheumatologist any news about what is your root cause, or is it all a decided thing now? In other words, any news?

magso - do you have work/kids/other things that get in the way of graded excercise? My shifts scupper me, I just get nicely in a routine and recovered then I'm back on and back to square one.
Have had nearly 2 weeks off, so am back on 2 nights. Will be interesting to see if I have a full wipe out pay back after, or if it's milder after a long rest.

Not that the 1st week was any sort of rest, spent the whole week in distress with various children's ailements!!

alypaly - I don't know about Sjogren's, but if you do have ME, please be careful with the bike! If you do have ME and overdo the aerobic exercise it is easy to make things worse.

treedelivery - I have lived with this for so long, it's hard to remember what might seem unusual to someone who is new to it all, like the well/unwell cycles being a matter of days, not weeks or months.

I've tried to find some articles for you that describe the experiences of having ME.

e.g. someone has written here about the "push crash cycle", and the "energy envelope" www.cfidsselfhelp.org/library/2-find-your-limits

Quite similar is the "spoon theory", written about lupus, but a lot of CFS patients use it to explain too. www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Someone has written a little more about the push crash cycle, it's a warning, saying that he used to think that if he pushed too far and crashed, he could always rest to recover, but he has found that like an old rubber band, he is no longer able to bounce back, so don't push yourself to the point of crashing more than necessary. The rubber band theory - www.wellsphere.com/chronic-fatigue-syndrome-article/the-rubber-band-theory/1127486

If you read ME/CFS websites, you might see PEM - this is for post exertional malaise.

I think earlier in this thread there are links about mitochondrial dysfunction.

I was going to say, I have been reading a lot of negative stuff about GET (Graded Exercise Therapy) recently. From what I read, it seems to be instrumental in causing a lot of people seriously crashing for a long time.

I have found Invest in Me a really useful website for information. The personal stories are heartbreaking and distressing to read, but at the same time a flashing red light about what to do/not to do.

I am getting it on both sides at the moment. Being hit with ignorance and prejudice from other parents in the playground about my son's special needs, as well as the whole 'its all in the mind' ME/CFS ignorance - which is worse in some ways, because it includes the vast proportion of medical professionals amongst its naysayers.

Lets say, I don't have a very high opinion of people in rl at the moment.

One of the GP's at my surgery is a non believer in ME/CFS etc and I'm so glad that she's not my doctor.

Just an idea, as your symptoms sound very similer to mine 3 years ago?

Wireless radiation

Headaches, Dizziness, chest Palpations, Tinnitus, Skin irritations and face redness. Pins and needles in the hands in the mornings. Short-term memory loss, Nausea. Pressure at the back of the head. Pressure in sinus or forehead area. Joint ache where mobile is placed. Phantom text messages i.e. vibrations from the mobile. Waking up at around 4am if a mobile, cordless phone, wifi is by the bed or close.

British websites about ES:
www.es-uk.info/

electromagnetichealth.org/audio-archives-and-more/

www.electrosensitivity.org

A Canadian website about ES:
www.weepinitiative.org

The Swedish website about ES:
www.feb.se/FEB/feb_techman.html

fullsignalmovie.com/index.html
safeantenna.org/
www.radiationresearch.org/
www.mastsanity.org/home.html
stopsmartmeters.wordpress.com/
www.mast-victims.org/

Recent articles in the press.
www.dailymail.co.uk/news/article-1318992/Mobile-phone-health-risk-Phone-giants-accused-burying-warnings-handsets-small-print.html

www.telegraph.co.uk/health/healthnews/7725169/Landmark-study-set-to-show-potential-dangers-of-heavy-mobile-phone-use.html

www.timesonline.co.uk/tol/news/uk/health/article7127799.ece

www.gq.com/cars-gear/gear-and-gadgets/201002/warning-cell-phone-radiation?currentPage=1

www.independent.co.uk/life-style/health-and-families/health-news/mobile-phone-radiation-wrecks-your-sleep-771262.html

Alypaly thanks. I have always had borderline dry eyes (and mouth) but it got a worse when I started on a long acting bronchodilator for my breathing. The worst is my teeth sticking to my mouth!! Yuk! I only use eye drops as needed and that varies a lot from 3x a day to several X an hour. It is nearer the latter now I have addapted to the Serevent, but is much worse when the rest of me is! Have you been diagnosed with Sjorgrens?
Moosemama thanks-the investing me site is useful. I found the canadian guidelines helpful too. It must be brilliant to have a health system that advises how to investigate severe CFS - rather than dismissing everything as depression and deconditioning.
The Barts GET advise I downloaded advises to first stabilise your routine so I might work on that. Then add stretches. I have not got any further. Thank you for the warning that it may not be helpful. I am learning to listen to my own body and sadly I do think medical support has some catching up to do!
Tree I have one son 11 with sn (ASD/LD). I was much iller a year ago and it was very difficult as he needs consistency and routine and is very active. I have adapted our routines as much as possible to keep on an even keel, and we are now getting some support from respite services.

Magso, glad the info was useful. Did you notice the references to dry eyes in the Canadian diagnostic guidelines? I was amazed when I read them. So many things I hadn't considered, but which all add up and make sense. I have the unidentified brain lesions and evidence of hydrocephalus on my mri (despite my never having had it to my knowledge) and have twice had mycoplasmic infections, one of which nearly killed me, as it was missed for so long - and still the docs never made the connection. I also have PVFS on my medical records from the first (and worst) time I was ever affected but they seem to choose to ignore that as well.

My ds1 also has ASD and relies on routine. Its so hard isn't it, you just can't be 100% consistent day in day out when you have to listen to your body. As soon as I start to go downhill the whole family implodes and ds1 starts acting out, then I feel like I'm letting them all down. Needless to say, last week was not good.

I've had to cancel my GP appointment for the second time. Dh had to take the boys to school this morning, as I just couldn't do it and that means he won't be home early enough to drive me to the doctors this evening. I have written a list of why I think I may be affected and take dh with me for back up. I am absolutely not depressed (been there and know what it feels like) and dh agrees with me on that, so I don't want to be fobbed off with that old chestnut, but know I won't be able to stand up for myself if I go alone.

I've been in bed or lying on the sofa all weekend and could barely walk to the bathroom (which is about ten steps from the sofa max) and ended up in a heap of sobbing mess all over dh a few times. Basically I was just scared. I don't think I've been this bad since my first ever attack (if that's the right word) and that was twenty years ago, when there was just dh, me and one dog and all I had to do was rest and recuperate.

To cap it all, dh has been invited for interview for a job which is double his salary, very prestigious, but a long commute, meaning he will be out of the house from 7-7 at least, plus will be expected to do lots of overtime - essentially leaving me alone with the dcs from get up to bedtime every day. At the moment, he is able to do the morning school run, pop home for lunch for half and hour and still be home to help with bedtime at 6.30 pm. He always said he'd never do the whole commuting thing again, but we're starting to realise I may never go back to work (partly because of my health and partly because of ds1) and he's worried about money. Its also the type of job that someone in his line of work dreams of getting on their cv.

So this morning I managed exactly four minutes in the shower before my legs gave way and I am now reinstalled on the sofa after being too wobbly to make breakfast and eating a banana instead. Dd is now asking for toast though, so I'll have to drag myself into the kitchen in a minute. I stupidly tried low carbing for a fortnight and I think it may well have made everything worse. I just desperately wanted to lose some weight before my dh's 40th birthday party and knew I wouldn't be able to exercise. I lost 12 lbs in two weeks, but I still regret it - never again! To add insult to injury, the weight will probably go straight back on now I'm back on carbs as well - although I am still trying to stay low GI as far as possible - but it isn't always possible when I need to grab something to eat because I can't stand to cook.

The Canadian Guidelines Overview is here for anyone who hasn't seen it before. www.mefmaction.net/Portals/0/docsCanadian_ME_Overview_A4.pdf The full guidelines are a lot longer.

magso, moosemama - you both mention having children with ASD. I've read that mitochondrial dysfunction is found both in children with autism and people with ME/CFS. I recently saw this presentation slide of a study on familes with both CFS and autism. niceguidelines.blogspot.com/2011/01/high-prevalence-of-xmrv-in-families.html

moosemama - could you get a shower chair?

treedelivery - I found another article about avoiding crashes livewithcfs.blogspot.com/2011/02/heart-rate-and-post-exertional-crashes.html

Oh Moose.

Damn it if we were only closer!

I haven't the energy to say all the stuff I want to, but I want to say I hear Ya

Finished nights. Let the backlash begin!!

Have lurked on and off over the weekend, and read. 'll catch up properly after some sleep and when I get some va-va-voom from somewhere.

Dear Moose. I'm worried about you I know what the job means to you all, but I know what the 7-7 days mean too as mine does 6/7-6 and it's bloody knackering.

magso It's great to head you get some help with respite. It isn't easy getting such provision is it, so well done you on securing that for your family.

CSFKate thank you for all those articles. I will have a good read, hopefully tonight when the dd's are in bed. Have put off readign them, as I had to work. I can't think about it when I have to worlk. It might make me....er...I dunno. Feel the symptoms? Then I couldn't work!
I totally block it out, bounce into work like tiger the tiger and plough on refusing to give in to anything [i.e went from 6pm to 5am without a wee as I couldn't find time in the workload]. Then I pay big time - on my days off when dh and dds need me

How are the eyes alypaly?

ello to all, especially Solo, GraceAway and ThisIsANiceCage. How are we all doing? MrsRichardHammond, rockinghippy, how are you getting on?

Thanks CFS Kate. I've heard about the mitochondria link before. Just haven't got as far as researching it properly yet and am a bit afraid that if we find out that's us I'll feel forever responsible for ds1's problems. Daft really as dh's family has several obvious candidates for an ASD dx historically and ds1's first cousin on his dad's side also has ASD.

I don't usually have showers, I prefer baths as I get to lie down. I was on my own with dd this morning and needed to be quick - I was also er rather more than a little unsavoury after a weeked in bed.

Thanks Tree. I know.

I wouldn't let you help anyway, especially straight after a weekend of nights.

Ps, just bought a some Frugi dungarees and a Frugi top in the sale for dd and its all your fault! I only went there to buy nappies.

Now go and put your feet up and get some rest!

Moosemama Sorry you are so unwell!I hope you get to see a sympathetic GP soon. Yes I noticed a lot of symptoms!!
We had a similar work related dilemma a year ago when dh took on an additional role within his company which meant him travelling long haul about one week in every 4. I was very worried we would not cope but the extra money means I can relax about not working more and can also not worry about delivery or entrance charges etc. I get some help now - with the heavier chores and ironing when I am most unwell.
I have just looked up mycoplasmic infections and it was enlightening. My PVFS symptoms improved after a course of ABs for something else and could not help thinking there was a connection!

Very tired here too...toyed with the idea of returning to bed for 90 minutes after the school run this morning, but didn't in the end.
So desperately want to tidy, declutter, clean and decorate my house, but really, everything seems to take me far longer than anyone else I know...

Can't sleep. No energy. Arse.

Could you start with one small bit Solo? Even one surface?

Moose - where and what did you buy? I consider this essential information!

these and this

Also have on my list to buy over the next few nappy orders:

this top

this top (wanted the other purpley one - but out of stock in dd's size )

this jacket to go with the dungees and top

this pinafore

bought these dungarees with my nappy order last month.

and ... about a hundred other things from the baby and child sale

We have those last dungarees Nanna got them for her Christmas pressi.

Some of those things might be in sale/stock on Frugi's own website?

I approve of all those purchases, the fleece jumpers are legend.

They're probably cheaper in the Frugi sale, but then I couldn't slip my purchases in under the "I was just ordering nappies and wipes - honest" radar!

I am acquiring beautiful clothes for dd by stealth you see, two items every month with my nappy order and hoping dh fails to notice.

How old are your Dc's? mine are Ds 12.6 and Dd 4.1

I'm in such a state here. Never ever been this bad :( and I know it contributes to the way I feel, but just don't seem able to get much done to be any good iyswim? but it's really blooming well getting to me too...