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!

Hi All

well i applied for DLA and i have been turned down (not without a fight ill tell you), for a few reason, one i dont lack motivation to cook a meal..No i just have kids that need feeding and i really havent got motivation its necessity...... i can sleep comfortably at night.not without the aid of pain relief and sedation..........and i can wash and dress my self.the day i can get out of bed...

so i will be appealing, and i will keep u informed, as anyone else been successful?

Hi all,
I was directed over here from my request for info post. There's quite alot to take in huh????

Havent read all the posts yet, but i will......eventually.

Just wanted to say hi and make myself known to you all as a newly diagnosed CFS/ME sufferer, who has insulin dependant type 2 diabetes and also a thyroid problem (hypo thyroidism i think).

All advice gratefully received.

Haven't read all the thread (it's massive!) but I wondered if any of you had been tested for pituitary problems and / or adrenal problems? Normal thyroid testing doesn't test for lack of hormones produced by the pituitary gland, and adrenal problems can make you sleep all the time. My pituitary seems to have partly destroyed itself as a result of pregnancy and I had a year of this before diagnosis, which was hell. Google them and see if it's worth pursuing. If hypothyroidism seems to fit your symptoms go back to the GP and ask for a 'free T4' test. Good luck!

Hello WhoremoaneeGrainger, welcome to the thread. Sorry to hear you have recently been dx'd with CFS/ME. Hope you are well enough to read some more of the thread and get to know us all a bit.

Its been very quiet on here recently which means one of two things - either we are all feeling a bit better than usual and therefore trying to make the most of it instead of being stuck in the house with just our laptops for company - or we are feeling so rough, we haven't even got the energy to MN.

Am hoping its the former for most/all of us, as lord knows being stuck inside unable to do anything when it sunny outside is the absolute pits.

For me it is the former, thankfully. I feel like I have finally turned a corner and have been busy trying to improve my general health and fitness levels. Been eating super healthily (have now lost 18lbs in the last month) and walking when I feel up to it. The only downside is the return of my dreaded migraines (which after treatment with Topamax/Topiramate, I hadn't had for 6 years ) They seem to be precipitated by the exercise, so I am having to be very cautious with how much I do. Actually, no-one's sure if they really are migraines, as they don't quite fit the bill, but I'm assuming that until I know otherwise.

All my bloods came back clear - as usual. My neuro appointment and MRI haven't come through yet, but knowing most consultants take as much of the summer off as possible, I'm expecting it to be sometime after the beginning of September - fortunately I haven't had any more 'episodes', so I'm trying to put it all to the back of my mind, although looking back over what I've been through in the first half of this year is quite hair-raising and I now can't believe how unbelievably stupid I was not to go to the doctors sooner.

Thanks for the advice on the free T4 test jaype. I have heard about that via my mum who has hypothyroidism, but have never been tested for it.

Do i have to asl for some kind of hospital referral then??? Or will my GP do it automatically? My mum asked me today if i had been tested for rheumatoid arthritis as well - id ont know why she asked that.

AM back to GP on Friday for a face to face chat about it all, as she told me my blood results over the phone, so hopefully will be a bit more in the picture then.

If i am honest im just glad to have a diagnosis. Its been a long and painful 7 months, with one thing and another!!

Hope the reason its quiet is because you are all well. Will keep popping back to read more, but have very squiffy eyes at the moment. Not great when you type for a living.....[hgrin]

What were your blood results WG? Was it just the thyroid that showed up, or was there more than that?

I should apologise for worrying you. Please don't let my talk of MRIs etc worry you - sorry I should have realised you haven't read the whole thread so wouldn't know what I was blathering on about. I have something else entirely going on at the moment that in all probability has nothing to do with my ME. I tend to come on here and whinge about it every now and then, because the lovely ladies on here understand what its like to have strange symptoms and not be able to get any answers about their cause.

Of the people I know who have a dx of ME, none of them have been referred on from their GP, unless for Cognitive Behavioural Therapy and Graded Exercise Therapy. A lot of people with ME get very angry about this, as it suggests ME is a psychological illness rather than - as classified by the World Health Organization - a neurological disease. As far as I am aware its only the UK and Australia that refuse to accept the biological/neurological nature of ME and insist on treatments being psychologically based.

I do think CBT has its place in helping some people deal with the depression that often accompanies the debilitation caused by ME, but for me, that's as far as it goes. Personally I believe the psychological (not cognitive) aspects of ME are precipitated by the physical debilitation and pain and not the other way around - but I think we have a long way to go before this is accepted by the medical community in the UK.

I think your Mum might have been wondering whether Fibromyalgia might be more appropriate than ME as a dx. I think with Fibro you can get a positive blood results for RA markers in your blood.

I was dx with Post Viral Fatigue Syndrome over twenty years ago, when I was 19 years old and before the terms CFS and ME were widely known. At the time I was bedridden and being fed complan through a straw. Since then I have had long periods of my life where I have been in what I suppose you would call remission (if there is such a thing in ME) punctuated by 'crises' usually caused by a bad virus, series of minor viruses or a period of extreme stress. I have never had a crisis as bad as that first one again though. In facrt, I hadn't had a crisis for around 9 years (brought on by ds1's traumatic birth) prior to my most recent one that started last November and began to improve at the end of May.

I am lucky to have a very understanding husband who has been with me from before my diagnosis and understands that when I'm in crisis I have no choice but to rest as much as possible and pace myself to be able to do the essential things I have to.

I have three dcs, aged 9, 7 and 2 and my oldest has ASD, so no matter how low I get, I still have to pick them up from school every day (dh takes them to school in the morning for me) do after school snacks and homework with them and look after the little one all day every day, as a bare minimum.

I know how hard it is to concentrate and take things in when you are in crisis, but have listed some links below for you that you might find useful to read as and when you feel up to it.

European ME Alliance

Invest in ME

ME Research UK

ME Association UK

Support ME UK

The most important thing you need to do now is not be too hard on yourself. Pacing is the way to go, rest whenever you can. Sit rather than stand and lie rather than sit whenever possible and if you have the opportunity to sleep - take it. Good nutrition is really important, but I guess you already have a handle on that from having diabetes. I have found omega oil supplements and daily floradix a real help in lifting me out of this crisis and think a really good quality multi-vitamin is a basic must have.

Hi all, hope you don't mind me joining you here. I have hypothyroidism therefore have felt crap for years. Last year I became very active, going to gym 4/5 days a week and felt great. Come christmas I was totally wiped out. Had to give up the gym and since then have been suffering with fatigue, muscle/joint pain, sore throats, disturbed sleep etc. I had my thyroid checked and my levels were better than ever so GP has diagnosed ME. I have to return to him next week with a 2 wk diary which should highlight my bad day triggers. I am sooo fed up of waking in the morning feeling like I have had no sleep, being short tempered with everyone and living in pain. I work a 4 day wk but have to spend the wkends and evenings doing nothing in order to get through. I went out on Wed night which was a one off and I am paying for it now! My GP has discussed both GET and amytriptiline with me and I would like to know if anyone has any opinions on either of these.

Just reminding people to facebook vote in the contest here
www.vivint.com/givesbackproject/charity/769
more details posted earlier in this thread on 15 Jun

This just came out niceguidelines.files.wordpress.com/2011/07/myalgic-encephalomyelitis-international-consensus-criteria.pdf for some reason they have the references and credits and it looks like the end, but then there is loads more information on the last few pages.

Thank CSFKate for redirecting me back and for the nice guidelines. Will go off and read! The opening parafraph looks hopeful that ME will be taken more seriously in the future.
I thought I did not suffer to much from the post exertional malaise ( because I cannot exersize) - but I've had a set back that has had me back in bed most of the day for the last week and the house is disgusting!!. Now when I look back that it has been very much a pattern even though I thought I was getting good at pacing myself.
Finally made contact with the local ME/pain service who thought I should be suitable ( if gp agrees) but thought I should stop trying to work ( i only do 1 short day a week and spend the rest of the week recovering). I am feeling hopeful! Officially they do not take people with neurological symptoms but after speaking to them its because they do not do any diagnostic testing.
I have not applied for DLA - like you Belles I still get a meal on the table when I have to! Some days I cannot. Some days I can do a good job - other days its more a case of instant food from the fridge. There really is not a catagory of DLA that fits severe debility so it is hard to get any financial support. Ds has LD so gets DLA but is physically healthy ( too healthy by half- when he runs off in a panic)!! Between the 2 of us I could do with a blue badge so I can keep ds safe when I cannot run after him. The financial side is difficult.

Hi all, what a week of HELL....... went to ME clinic last week and was told if i dont sort out my inner turmoil my health will deteriorate to a point where i wont be able to function!!!!! so ihave made a life changing decision.........

My inner turmoil is that i live 100 miles away from all my family. i got divorced last year and still live in the same village as my ex and all his family ( who have nothing to do with me because i left ex because he didnt accept my ME and made me feel guilty for been ill.....(amongst other things). My children (12 and 9) are happy and settled her but i am finding it more and more difficult to exisit here. I am so home sick and have been for 17 years, i am completely isolated i see no one other than mums from school at school gates or my work colleagues.

So i have decided to go home.........my kids have been given the choice to come with me and my ds as decided he want to stay, with his friends.......i feel like the worst mother in the world.....but what kind of a life can i offer my kids if im bed ridden and unable to work.

im not daft and know my ME wont magiaclly disapper when i go home, but i will have help!!!! support and no that if i cant get outta bed there is some one to see to the kids...............

god life with ME is challenging..and so bloody hard......

Wow Belleshell that a lot for one week! You are not a bad mum for looking at the big picture and trying to do what is best for everyone.

Hi all,

Sorry its been a while, but have been trying desperately to channel what energy i do have into my DD as its school hols.

Been back to docs, and blood tests have been re-done, and, according to the receptionist, the white cells counts were abnormally high, as expected.

Cant get to see my GP as she is on hols, but i have an appointment with one of the others for next Tuesday and am gonna ask about CBT and GET (hubby gets private healthcare for all of us).

Am so sick of being tired all the time. Took hubby to work yesterday as we overslept, came home and fell asleep and woke up at the time i should have been there to collect him!

Will re-post when i have more news, and thanks for all the wen links, i am slowly working my way through them.

Some research here about a mother diagnosed with CFS, and three of her four children with ASD.

www.futuremedicine.com/doi/pdf/10.2217/phe.09.5

Does anyone else have difficulty with becoming breathless and faint on even the slightest slope or trying to walk faster? I do - although it fluctuates and can catch me out so that I keel over. Is tachicardia a common sympton of CFS?
I now have an appointment ( in 2 months) to see the endochrinoligist associated with the ME CFS clinic.
CFSKate that paper about infective causes of ASD make sense.

magso - tachycardia, see here
www.hetalternatief.org/ME%20Carruthers%202011.pdf

page 5 mentions

"1. Cardiovascular: e.g. inability to tolerate an upright position ? orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness

1. Respiratory: e.g. air hunger, laboured breathing, fatigue of chest wall muscles......"

Hi, can I join you? I have severe fibromyalgia and CFS. Have been I'll for at least 11 years but drs now think it may have started in childhood. I was in and out of neuro wards with pain, fatigue and numbness in legs etc, that they eventually put down to 'growing pains'! I was finally dx when I was 18.

I've been up all night as my knees are agony! Hope to sleep soon when my tramadol kicks in. Brains getting fuzzy now so I'll catch up later x

Welcome helibee and Lollipop! Hope you got some sleep helibee.
I have been reading about hypothyroid and CFS lollipop. Sorry have lost the link ( power cut last night when I was reading it) but there was a review paper looking at using T4 to treat symptoms rather than get TSH within the 'normal' range. They also looked at T4 to treat CFS in Px without frank hypothyroid but borderline low thyroid. I found it due to a search on air hunger and CFS. If I find it again I will post it.

Thanks Magso, I didnt sleep well yesterday morning, just too exhausted and in pain to do anything butthen pretty much slept for 23 hrs from yesterday afternoon.

Does anyone take or know anyone who takes Pramipexole?

Hope you feel better for the long sleep Helibee.

Does anyone find the rub in creams with joint pain? I am not convinced they help but perhaps I give up too easily or maybe it takes several weeks to help.

Hello all, sorry I haven't been around. I've actually felt too guilty to post, as I've been feeling so much better and have really pulled out of my crisis now. I feel terrible that you are all still suffering so badly and I am feeling the best I have since last Autumn.

I have really cleaned up my act, improved my diet, cut out all processed food and junk, kept up with my omega and floradix and gradually built up my exercise (just walking so far) and lost just under two stone since June. I think that's probably what the majority of my improvement is down to - other than obviously that the schools broke up, so I haven't had all the SEN stress relating to ds1 to deal with.

Got back from holiday last Monday and have needed to rest a lot this week compared with the last few, but I think that was to be expected as I've been a lot more active than usual and the second week of our holiday was pretty stressful. I am shocked at how this week's exhaustion has frightened me though - I am so scared of slipping backwards now, I honestly can't face going back where I was a couple of months ago.

My neuro appointment still hasn't turned up and I am still having pains in my eye and head and some odd neuro symptoms, but its nowhere near as bad as it was, so I'm not going to chase until the boys are back in school.

Hi everyone. Glad you are in a better phase Moose. I am doing ok at present - rather tired after returning from holiday (oh for a cleaning fairygodmother!). Having dh around for 2 weeks to do the active stuff with ds is so wonderful ds needs active fun to meet his sensory needs and stay calmish. Like you we have benefitted from less sn school hassle although ds starts senior sn in a few days (and back to the dreaded homework --wibble!) Ds is pretty chilled after the holiday and that always helps my health!
I now have an endocrinology appointment - I think to see if ME/CFS is the final Dx or other things. My main problem is getting breathless at the faintest hint of activity so we will see.

I have cfs/ME and lost my teaching job due to it.

I really struggle at the moment with my very active 2.8 year old. Today we have watched tv nearly all day as I am desperate to sleep and just can't while I need to watch her. She has played jigsaws, potato head, etc. but I still feel guilty as a mum on days like this. I am desperate to sleep and its only 3pm. I am counting the hours down to 7pm :( This isn't how parenting should be is it?

(Husband is wonderful but only home weekends and I'm struggling so mcuh) :(

American TV about ME treatment at WPI.

Back in June I posted about a facebook vote to win funding for the WPI - it has now closed, they won $100,000

A facebook vote to fund Invest in ME, a UK charity www.facebook.com/JohnLewisRetail?sk=app_160436757357028

If you plan to do your Christmas shopping online, use these methods and you can raise funds for ME charities at no extra cost:

Ways to raise funds for Invest in ME that don't cost you anything letsdoitforme.blogspot.com/p/how-to-help.html

Likewise for ME Research UK www.meresearch.org.uk/support/shopping.html

Hey! Solo here. Anyone still around?

How are you Solo? I'm still around. not seen the specialist yet - am still hoping the'll find something ordinary and fixable.