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!

[CFSKate]

I'm not sure if this thread is the right place to post this, but a film has been made about severe ME. It's being shown in Norwich on the 2nd December, and in London on the 7th December. website voicesfromtheshadowsfilm.co.uk/
facebook www.facebook.com/VoicesfromtheShadows
but it looks like you get the tickets from www.investinme.org/Voices%20fromtheShadows.htm

[Beaaware]

If you have ME why are you not allowed to donate your blood?

[magso]

Hi Beaaware! Officially the blood donation ban came in to protect the health of CFS/ME sufferers. (I rather think it has more to do with current research studies that have implicated various putative viruses in some cases of ME so there could conceivably be a risk to recipients!)

[CFSKate]

BBC Radio interview about the efforts to get research going in Norwich.

[moosemama]

Hi all, have been awol for a long time I know. Sorry.

Got called back in for my MRI results this week. They couldn't do a like-for-like comparison with my previous scan because the blooming NHS have burned the films. BUT from the notes they feel the changes are significant and are now thinking I may have MS, although apparently the lesions are not typical for MS. They also took a more detailed history of attacks, crises and symptoms and felt that this actually strengthened the need for testing for MS even more.

I have to go in in January for a lumbar puncture and testing that traces the speed of messages from feet, hands and eyes to the brain and they will then check everything against the diagnostic criteria, decide whether to do more tests or, if there isn't enough proper evidence to give a dx, they may at that point go back to a formal dx of ME.

So, still in limbo with nothing new or surprising having come out of the brain scan really.

[magso]

Moose I have been wondering about you. How do you feel? It must be quite a worry even if you are highly suspicious of MS.
I somehow got onto a website talking about the limbo land of preMS diagnosis, and the frustration of knowing they probably have MS but until it is diagnosed there is little help or most importantly.

I hope to go to an information / assessment clinic for self management at the chronic pain and fatigue clinic. I do not know much about it yet. I have been on a low dose of medication for neuropathic pain and actually think it is helping more for that disabling weakness in my wobbly legs! Well I may still look drunk but I haven't actually keeled over for a while now!

[magso]

Sorry missed out the word understanding!

[CFSKate]

moosemama - I'm sorry you've got all this uncertainty to deal with.

There's something about MRI and lesions here www.hfme.org/testingforme.htm

[belleshell]

hi all, just wondered how ur all coping with the post christmas fatique....me im buggered and back to work tomorrow just dont know how im gonna cope, its a new job so i have to go........other than that happy new year to you all...xxx

[magso]

Kate, having read the work your link referred to, I really think it is terrible that the uk does not recognise and tests and diagnosis for ME as aposed to CFS. I would say my main symptoms are neurological although the neurological side is just put down to fatigue. In no other illness is it acceptable to refuse to investigate such symbols as regular intermittent loss of coordination, memory, knowledge and speech, fainting regularly, nystagmus, etc and just call these things fatigue.
How are you Moose?
Belleshells best wishes for your new job. I hope you are able to not over do it!

[moosemama]

Hi Magso and co

Had my lumbar puncture on 30 December, followed by an almost immediate relapse that has been ongoing ever since. :( Also got the dreaded post LP headaches and excruciating back pain that had me laid completely flat for ten days. Fortunately its not the worst relapse in the world and I am just about holding my head above water at the moment, whilst trying desperately to improve things through all the usual routes of, pacing, diet, supplements and an attempt to rebuild my fitness levels - again.

Went for my evoked potentials testing last week. Try as he might the lovely neurobiologist couldn't get my left toe to twitch, even when he ramped up the power. It hurt like hell, despite being told it wouldn't hurt at all.

Had a neuro appointment to get my results today. LP all clear and VEP results not yet received.

This leaves me with the highly non-specific and predictable 'possible MS' diagnosis until either a) my VEPs come back and show and abnormality (am pretty sure they won't though) or b) I have another major neurological episode - at which point I would be upgraded to 'probable MS) and admitted for iv steroid treatment.

We did discuss ME. My lovely neuro explained that most neuros in the UK don't accept ME because there is no physical/medical evidence to clinically dx it. However, she herself does accept that ME is very real and almost indistinguishable from MS unless/until something to allow a definitive MS dx comes along. (So basically the position she thinks I'm in.)

My current symptoms (exhaustion/fatigue, parasthesia, word finding problems, using the wrong words without being aware, muscle jerks, blurred and fogged vision, cognitive fog, odd sensations of skin tightening and tingling on scalp, back and ribs etc etc) are all considered non-neuro in origin or classified as minor neurological problems. Unless I develop serious balance issues or slurred speech or one-sided weakness or continence issues then there isn't much they can do will just be seen by her on a 6 monthly review basis.

So there we have it - again. Nothing new or unexpected, no further on and no answers, just a raft of painful tests that have plucked me out of a relatively good healthy time after a period of pretty bad crisis and set me back most probably for months and all with nothing to show for it.

I am never having another MRI or Lumbar Puncture. I think I would rather not know than go through all that again.

[magso]

Oh Moosemama all that and still in limbo.

[moosemama]

Yup. Thing is, as I said to my Mum today, I could have predicted all this, written it down and placed it in a sealed envelope, then opened it today and discovered I was right.

I'm pretty much 100% its ME not MS, but I know there's almost 0% chance of that dx being worth anything - if anyone would have the balls to give me the dx in the first place. At the moment they are still referring to PVFS/CFS as dx's by my then GP in 1990!

I've been finding it tough dealing with the realisation that, realistically, I won't be going back to work when dd starts school full time next year. Firstly, I would be unlikely to get a job with my historical sick record and secondly, if I did, I would struggle to keep it.

Dh wants me to come up with some sort of web based business I can run from home, as we desperately need more income, but I'm not sure I would cope with the stress of setting something up, let alone keep it running on my bad days. I feel useless and washed-up at the grand old age of 41.

Sadly, I don't think there are any answers or solutions to this particular problem. Its just a case of getting on with it - what other choice is there?

[magso]

Yep I feel much the same. Istruggle to work 6 hours a week and often feel I do not do a good job because I work more slowly or forget things, can't find my words or just plain get too tired to function. I feel washed up too. I tried for a bluebage but was turned down but often just doing ordinary things is beyond me. Today I had to take ds for an X-ray and by the time I had driven , parked up, seen nurse, gone to X-ray, walked back from xray then driven ds to school I was all in. And this is a very good spell for me.
Sorry you have been so unwell.

[moosemama]

Thanks Magso.

I know exactly what you mean. Dh asked me today what it is that I want to be able to do that I can't and I said I just want to live like other people, to be able to keep the house clean and tidy, play with dd and still have the energy not to be a grumpy old bag when the boys come home from school.

Its really not much to ask is it.

Ds1 is so used to seeing me ill that the first thing he says to me every morning is 'are you poorly today Mummy?' It breaks my heart.

[magso]

Oh moosemama!( hug) yes it is not too much to ask. It's so hard for healthy people to understand.

[moosemama]

Thanks magso.

Am feeling stronger today, well mentally anyway and determined not to let it get me down. After all, I guess I have no choice but to keep on keeping on. So, I'm going to carry on with my supplements and healthy diet and try to rebuild my fitness levels in the hope of stopping this relapse before it really takes hold.

Sorry I was on such a downer last night.

[CFSKate]

Professor Behan talks on the BBC about early investigations into ME, and the discovery of problems with mitochondria.

[dinamumm]

The link isn't very information it doesn't say anything evidence based just anecdotal and finishes before the end

[CFSKate]

Hi dinamumm - there's a bit more detail on his findings here
www.ncbi.nlm.nih.gov/pubmed/1792865

[dinamumm]

umm still just an abstract and a very tiny study of 30 people and is it from 1991? so not really uptodate.

[CharlotteCraig]

Vitamin D and lamps are for S.A.D not ME. Most of us lack vitamin D and need more anyway. Yes you do need to make sure you have enough fruit, vegetables, good quality food, less rubbish and junk food, extra vitamin C is helpful with most things as is garlic and selenium and it is cheap.Doctors are not Gods, they often make mistakes and only know a little about a lot of different illnesses. If you read up about an illness for a few days you will know it better than them. Some doctors do not have any common sense. I was recently told by my doctor that it is important to make sure you eat enough iron. He knows I use a computer every day and do not have a but his solution was for me to travel 30 miles to a hospital to ask someone which foods contain iron! I looked it up online and it took five minutes and did not cost me a penny. He was also wrong to assume I was not eating enough in the first place. He assumed I had anaemia and asssumed it was my own fault. There is a lot of ignorance around M.E. with people assuming it is laziness or "all in the mind", as for how depression often comes with it common sense tells you that if you often feel worn out and unable to do things you will become depressed.

[garlicfrother]

When I went to the doctor's last month, I saw a locum who accepted the reality of CFS/ME/whatever the fuck it is, sent me for some further blood tests and offered advice that sounded reasonable ... giving up all dairy products, unfortunately (I think it has helped a bit.)

I'm feeling pretty grim about the fact my symptoms are getting gradually worse. May have to kill the next person who thinks I just need cheering up, and have I heard of graded exercise?!

So I was just looking to see if this thread's still active, catching up on some posts and - most of all - sending an understanding hand-squeeze to all my fellow wimps

[Icolana]

Just bookmarking as have to go get DS. I have ME. I will read this thread as may be useful.

[CFSKate]

The next ME conference details are out now www.investinme.org/IiME%20Conference%202012/IIMEC7%20Agenda.htm
Also that film about ME is out on DVD voicesfromtheshadowsfilm.co.uk/shop-dvds/