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!

[Christmastreedelivery]

There were too many wow's in my post.

The thought of being off work for 6 months could bring me out in hives. I can't begin to imagine the uncomfortable interviews you must have faced.

I am not at that stage, but this thread is showing me that if I have ME, I am going to need to manage myself to ensure I don't get there.

Enjoy ready meals and bed. Lovely.

[Christmastreedelivery]

Oh blimey - x-posts a plenty. Got broken off for childcare.

thisIs thank you for the stars. I like them.
Go do your cards! Hope to see you back again, but actually a thread like this could be utterly exhausting couldn't it? So if anyone goes away, thank you from the bottom of my mitochondria for all you have contributed.

Solo. Lord. Awful awful awful. Clearly I have no answers nor wisdom for you. All I can say is that you have my real sympathy. I'm angry for you, for this condition and the lack of support you have met with.

If it helps, you rant and rant away. If it stirs up emotions that are a burden, then I'm sorry this is so. Threads like this can indeed remind us of hard truths.
Take it easy.

Blimey that phrase has new significance too me!

[CFSKate]

ThisIsANiceCage has said a lot of sensible things, please listen to her.

From my experiences, I would say the mixing up words, sweating, and moving through treacle, having to go up the stairs on hands and knees are also ME symptoms. Sweating was a symptom for me in the first years of illness. Palpitations too.

I would agree with everyone else, so many ME patients look back and realise the damage they did in the early years by trying to push themselves, keep going or over exercising to try and get their way out of it.

Here's some reading on mitochondria.

www.investinme.org/Article-242%20Bell%20Mitochondria.htm his website
is also good at www.davidsbell.com/

www.ijcem.com/files/IJCEM812001.pdf

ISTR reading somewhere that in depression, exercise increases blood flow to the brain,
but in ME, exercise decreases blood flow to the brain.

[FiveColdRingsForSolo]

Yes, there were interviews! The only thing that has been gained in recent years is that because the disability discrimination act was brought in, I registered myself at work as being 'disabled' (which makes me as I can't get any help from anyone or anywhere under the 'disabled' umbrella otherwise)which means that I can't be disciplined for being off sick with the ME, just not paid . That's so stressful in itself that it makes me more ill.

NiceCage, send your servants over when they've finished your chores please

I did start another course (CBT) at Kings about 5 years ago, but they handed me a book to read which I find difficult these days and then a friend died and I couldn't go for a few weeks, then I just thought...'Nah!' I phoned and we stopped it.

[Christmastreedelivery]

Thanks CSFKate sorry, I didn't reply to you. I'm going to hava a look at your links now.

This sweating business. Now I've always been one to sweat, and couldn't wear a sil top on a night out, as the under arms would be ruined.
As I sit here though, I am sweating. Not all over, but still. It's horrible.

I have a symptom question. The GP was asking what I do if I have a busy day at work. Can I push and keep going, or can't I. I said I must do, I think I can push and keep going. Mine is not the job where you can decline to work, needs absolutely must. But I pay for it the next day, or longer. More than I ever have in my workign life.

Is that the experience of an ME sufferer? I imagine ME would mean you simply couldn't continue, and no matter what your adrenaline levels did you simply would not be able to keep up the level of work.

If don't come back on thread, I might not be back until later, or even tomorrow.
I hope all are great/well/ok/fair/writing Christmas cards. Maybe hear from some of you later too.

[FiveColdRingsForSolo]

The thing is tree, you do get to the point eventually, where you get so used to having loads of symptoms that you actually forget they aren't normal. The pins and needles are 'just there' now along with the headaches, sore throats ad infinitum really.

Keep posting tree, it helps just to know you aren't alone sometimes :)

[stayathomegardener]

Just a couple of things christmas.

Do be aware that by taking things easy at work you will involve new mental processes which will be draining on your energy levels-most people are not thinking I must have a break,where is the nearest seat etc they just concentrate on the job in hand which is far less stressful IYSWIM.

Also beware of holding on until Christmas thats what I did 8 years ago thinking I can have a really good rest then-I did'nt get up for 6 months after that I just imploded,really wish I'd had a thread like this then(although I'm sure I would not have listened)

Re antidepressants there is one that has the side effect of helping with ME- resetting sleep patterns I think,although I'm not so sure how that would work with sift patterns.I think it is called Amitriptaline sp?

HTH thinking of you

[Christmastreedelivery]

Solo Well if that is the sum total of what the disability discrimination act can do for employees with disabilities then it is a big crock of shite.

Pardon my lanuage, but the idea you are granted the honour and permission of being off sick, with no pay? Well that just makes me want to boil over.

How is that a protected right? Crappy crap crap.

With this sort of crap in the way, ME sufferers will always suffer ME as all energy will be drained seething over crap like this. I am, as yet, unable to pace fury

[Christmastreedelivery]

Thank you stayathomegardener, for your tips, and thank you for coming back to the thread.

I seriously need to think about and consider the implosion potential here. My lifestyle and work/life balance have serious implosion potential. Although I have nowhere near the workload Solo had. I am well supported and family pick up an awful lot of my slack.

I need to have a long consideration.

Solo how young is your youngest dd? Mine is 22 months.

[ThisIsANiceCage]

"I am, as yet, unable to pace fury"

Oh Christmas, I think I love you!

[GraceAwayInAManger]

Thank you, Starisonthetree, for pointing out that all activities are draining. I really hadn't recognised this (hence spending hours & hours on Mumsnet ) so am now going to cycle my activities as you outlined.

And thanks for all that fantastic info, CFSKate!

Christmas, glad to hear you're planning to conserve your resources :)

[GraceAwayInAManger]

Can I just add what I've been told (and have read) about antidepressants? I definitely AM depressed - not surprising really - but the specialists I've seen have said my medications will be helping to support my system anyway. This is because they increase the amount of neurotransmitters working in my brain and reduce the amount of the stress hormone, cortisol.

The crucial factor here is stress. Cortisol is the 'danger' hormone. It's intended to improve your fighting & fleeing performance. As part of this, it shuts down energy-using processes that won't be necessary during a short burst of life-saving activity: hair-growing, digestion, skin oils and loads of other stuff. It can also make the bladder & bowels empty themselves. This is all good in an emergency.

Problems occur when the sensation of danger lasts for a long time: stress. To make matters worse, the body perceives the failure of these shut-down systems as a threat ... so, in response, the brain orders yet more adrenalin & cortisol. Because 'depression' is such a catch-all expression these days, it's not really clear that modern ADs work primarily against stress.

Therefore, I would ask you not to dismiss your doctors' recommmendations as "being labelled with depression" but to enquire further about how s/he feels the meds will help you, which neurotransmitters your precription works on, and why they picked that particular one :)

BB, I sympathise with having to fill in your ESA forms. It makes you feel worse, doesn't it? :(

[GraceAwayInAManger]

Btw, I'm not trying to say ME/CFS/FM/etc isn't a physical illness or illnesses. I think it is. Possibly there is a virus or something that remains dormant until stress compromises the immune system (as shingles does, for example). Reading the stories on this thread alone, though, you can see what a common factor stress has been in the development of our illnesses - this is replicated throughout the CFS forums I've looked at.

You have to take stress, and the related mind/body symbiosis, very seriously. Preferably as soon as it starts acting up!

[Silkstalkings]

Did your GP take bloods to test thyroid levels?

[CFSKate]

"The thing is tree, you do get to the point eventually, where you get so used to having loads of symptoms that you actually forget they aren't normal."

There's a case history here www.davidsbell.com/Faces_of_CFS.pdf called Anna's Identity - about someone who was ill from a very young age, so for her, illness was her normal everyday reality. Christmastreedelivery, I really think you should read it.



"I have a symptom question. The GP was asking what I do if I have a busy day at work. Can I push and keep going, or can't I. I said I must do, I think I can push and keep going. Mine is not the job where you can decline to work, needs absolutely must. But I pay for it the next day, or longer. More than I ever have in my workign life.
Is that the experience of an ME sufferer? I imagine ME would mean you simply couldn't continue, and no matter what your adrenaline levels did you simply would not be able to keep up the level of work."

This sounds like the push/crash cycle. First you push yourself to keep going. Then you crash, perhaps even become bedbound for a few days/weeks. Then you feel a bit better, and you push yourself again.


BTW I suggested signing up to some e-mail newsletters, but if you don't want to sign up you can read them online here
www.investinme.org/IIME%20newsletter.htm

[GraceAwayInAManger]

Sorry, Silks, I don't know if your question was for me? I've had regular thyroid, blood sugar, liver & kidney + all the usual tests. I always have a slightly elevated level of some inflammation indicator - don't know what it's called - but nothing else.

[FiveColdRingsForSolo]

Hi all. I did write an answer to something hours ago, but Dd pulled the plug and I lost it all...

Tree, my Dd will be 4yo in 10 days. I started getting my symptoms (those that made me sit up and question myself) over 11 years ago, when my Ds was 1yo.

Speaking historically as I've now not been at work for 4 years, I too pushed myself at work to continue as it isn't an option to stop and rest. Typically, you don't get time to have a drink or have a wee, so stopping to rest? no! not a chance. When a near riot started some years ago, I worked 23 hours straight, but luckily some of that was just being there so I did sleep some.
I always rushed around at a million miles an hour and after 2 years and an official dx, I had to have a chat with myself; I had to literally restrain myself from the speed thing and slow down (to what most people do actually!) which I found really hard for a long time.
I've had it so bad that I haven't been able to get out of bed and it's taken me 10 minutes to move my arm and put the bedside lamp on. My Ds at 2yo begging me for breakfast and not being able to sit up until he climbed up behind me and pushed me up to a sitting position, climbing on the bedside to get my dressing gown and getting it on me, my slippers too, pushing me up to stand and helping me down the stairs on my bottom. Remembering this always makes me cry.

One thing I've found is that as long as I keep going, generally I can, but if I stop to rest, I absolutely get bad.

[MrsSnaplegs]

ChristmasTree I have also been lurking but not had chance to post yet as have an 8 day old baby vying for my attention but finally fired up the computer as opposed to using my phone so I can post properly - if I vanish it's because I have to do my cow impression

I was diagnosed with ME 14 years ago when we were still fighting the label "yuppie flu" I was in a busy job with shift work. I crashed fairly spectacularly, couldnt get upstairs full stop, had to move my bed downstairs, off work for a 6 month period before I could even think about going back on reduced workload and days only. I was 23.

I didn't accept the diagnosis of ME at the time - I was of the "it's not a real illness brigade" until I met a woman who also had it who made me recognise my symptoms for what they really were.

My employer didn't recognise ME as an illness in those days so I learnt to "manage" my condition myself, nowadays this is known as pacing. I have continued to work for the same employer during this whole time, I have had periods of severe illness when I have been off work completely and periods when I have been on light duties. My role at work has changed significantly and I now run a desk for normal working hours. My employer now recognises ME as a formalised condition and my line manager and hierachy know that if I am to continue working I have to be allowed to manage my condition in the best ways I can.

The advice you have received on here from Grace etc is excellent and I wont try and repeat it but do have the following points to make:

1. you need to recognise now that for whatever reason you are not well whether that is ME/Fibromyalgia/SLE/Rheumatoid arthritis. Being ill like this can make you depressed as well as the fact depression can produce some of your symptoms. I do not think from what you have said that depression has caused your symptoms but you may develop reactive depression from coping with your symptoms especially chronic pain. Amytriptilline can help with this but has it's own side effects.
   

1. Pacing is essential to managing and returning to some element of normality and control.
   

1. Relaxation techniques/ meditation can be very effective, if you cant access a yoga group and want something to "guide" you try pzizz you can download it off itunes onto an ipod/iphone thing for a £5 I use both the energiser programme and occasionally the sleep programme.
   

1. You must stop trying to "cope" on your own - your DP/DH needs to also recognise you are unwell and start to take over some of the home tasks. I am lucky in my DH has become a FT househusband which allows me to remain at work currently, I will probably be medically retired on a pensionin the next 2 years due to recent govt cuts but currently he does EVERYTHING at home except cook evening meal - this means all I normally do is get up,dressed, walk 250yds to work,do my desk job, go home, cook dinner, go to bed. I do no washing,cleaning, ironing,childcare is minimal as DD (5) knows mummy is unwell and cant do certain things. I choose to continue working as I am the most likely to earn more at the moment and am waiting on my pension point in 4 yrs. I am very lucky to be in this position.
   

1. start keeping some sort of diary/ notebook of your symptoms to help with pacing and communicating with health care professionals - it will remind you of what you have "done" and how it makes you feel eg 1 hour shopping meant 2 hour nap on sofa, loss of concentration, joint/muscle pain for 3 days.
   

1. Don't be frightened of exercise but realise how and where it fits in to your life - walking around the supermarket is a lot of walking and needs to be recognised as exercise not just a household chore - it is going to make you feel tired, pace and fit this extra exertion into your managed lifestyle in the right place.
   

6.Don't be frightened to ask for help - ME has many different faces but there is help out there but you need to know where to ask and how to access it.

Right better go as I know this is an epic post and most of us on here probably don't have the energy to read it

[MrsSnaplegs]

Ha! Took me so long to write that 3 other people have posted since

[FiveColdRingsForSolo]

Ah yes! I was prescribed Sertraline (Lustral) for some of the symptoms. It helped at first and they increased the dose until I felt it was making it all much worse. I came off it on my own with no help and straight away. BANG!!! not a good thing to do and I do not recommend it at all.

I believe that sleep deprivation and being so conscientious at work was the starting gun in the physical sense for my becoming ill. I was only getting 4 to 4 1/2 hours sleep a night. If only I could turn back time!

[piprabbit]

Hi christmas, this thread has really been moving since last night - glad you are getting such good support here.

You asked me about my symptoms - I had just had the joint pain and tiredness, coupled to a feeling of being muddled and that I couldn't focus/concentrate as well as I was used to doing. No rashes or photosensitivity. That and the blood tests (which were done repeatedly) that eventually let them make a diagnosis.

I really just wanted to throw Lupus into the mix as it (like ME - which my DSis has, aren't we a lucky family) tends to be diagnosed after everything else is ruled out.

Best of luck.

[GraceAwayInAManger]

MrsSnaplegs, your post was brilliant imo. Am going to start keeping a detailed record ... and train the cat to do my shopping? Maybe not

Christmas, hope you're okay.

[MrsSnaplegs]

grace the cat may not be able to do your shopping but the Internet can ! Ok may have to use a big supermarket site but saves energy of walking round shops. If you have good local shop eg butcher they may deliver if you explain situation