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!
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General health
Could I have [mild] ME?
Christmastreedelivery · 14/12/2010 21:19
Just read x-posts. I'm so sorry to hear about your little boy, jollyoldstnickschick. I hope he makes a spontaneous recovery or, failing that, you get a diagnosis that actually has a cure.
The other posts have reminded of the reason why I'm not that bothered about getting a definitive diagnosis. Depression is definitive (there are diagnostic criteria, etc) whereas CFS/ME/FM/etc are diagnosed by elimination. You need to be tested for shedloads of other things, because the symptoms could be caused by shedloads of other things. Medical science is imperfect still. If you have the same symtoms for long enough, and can't be diagnosed with anything else, you'll end up with a 'diagnosis' that means "There's something wrong, but we don't know what and so can't cure it."
This is what leads me & other sufferers to take a holistic approach: not out of any other-worldly theories, but simply because - in the absence of definitive medicine - it makes sense.
Which I hope I'm doing
Moose, Grace and nickschick for your experiences. Nodding away here.
Yeah, NiceCage
I once posted an outraged reply to a depression forum, where some smartarse personal trainer was recommending his 'healthy body = healthy mind" stepped exercise program.
I pointed out that my daily exercise consisted of a walk to the end of my road (30 yards), a long rest and walk back, leaning on fences for support. I often had to do this in my pyjamas, as getting changed wore me out for the day. Whenever I managed this daily exercise program, my therapist congratulated me!
My ranting post received 50 "Yeah, me too" replies. Fitness guru stopped posting 
"Whoever said to basically listen to your body was spot on"
Which brings us onto the NICE-backed Graded Activity Therapy type programmes, and their "Follow the plan not the symptoms" motto. Grrr!
Not a subject for tonight, I think. 
NiceCage - seconded!
Your replies say you're taking the message on board, Christmas, but fgs take it on board sooner rather than later (Shouts stressfully)!
You're already showing symptoms of shutdown - and you're right, this is exactly what the '80s called "burnout". Google 'adrenal fatigue' and 'nervous exhaustion' for a cold-water antidote to your "I'll just get this finished" mentality.
The definitive nature of a depression diagnosis means you can be signed off for six weeks straight away. Take it. Believe me, I know how awful it is to face the guilt you feel at leaving your co-workers in the lurch ... followed by the fear you feel when they find they can manage after all. But the responses to your thread are showing you how much worse it CAN get, if you let the principles bully your health.
It's up to you. We're all saying "It's already quite bad. Don't make it worse."
The healthy world will, like that dipshit fitness guru, say "Uh, don't be a wimp! Think positive! Do more to stay level!"
If I could wish CFS on one person, it would be him
But you can, hopefully, avoid the complete breakdown that seems to be heading your way rather quickly. You might even need more than six weeks off. But for now, instead of knocking your doctor, how about accepting the window he's offering?
Thank you for your admiration, but I don't deserve it! I've been forced to learn all this stuff, and apply it as best I can. I'm sure you can imagine how it felt to go - in a couple of months - from Ms Gym Fit Super Achiever to being proud of trudging 30 yards in my pyjamas. That's where toughing it out can get you. Don't do it.
You've started a wonderful thread! Congrats:)
Thanks for all the moving & informative posts you've prompted.
This reply has been deleted
Message withdrawn at poster's request.
Arggggh. Just lost a huge messge.
This is a great thread, and I for one am so grateful for it. I would be lost and staring at NICE guidelines on ME. Probably crying. Instead here there are experts, advocates and hand holding wise people all in one!
Instead I am thinking and pondering, and wondering what all this might mean.
I am loathe to make demands of employers at this stage. I have no diagnosis, just my own suspicion. I feel I need something concrete before I can go forward on that one. Do you agree?
Like you so wisely say ANiceCage, if I don't believe no one else will. I need to live a bit more, collect more evidence, and see more health professionals to arrive at a judgement. If the conclusion is I do have ME, then I will actively stalk you to help me adapt! 
I am a bit shocked though. I hadn't really grasped the idea that if it is ME, sudden decline and spiralling decline can be triggered by over reaching. I imagined the condition to be an ebb and a flow, with slow cycles of good/bad times. I am really shocked to hear about the change you experience GraceAway. I hear both you and ANceCage, I really do. I think because this is all so new to me, I am having trouble imagining myself as being that affected.
Ok, In regards to work I have changed my thinking overnight and this morning. I am not going to tough out the next week. I am pacing it. I aim to work and work well, but I am going to insist on breaks, and I am going to do all I can to conserve energy. I will walk more slowly, use the lift, sit when ever I can, and make sure any physical stuff I do is done in the best way possible.
If I can't get though it, then I can't. I'll be brave and face it. Alhtough I will need mn to hold my hand in that case!
Don't lurk BrandyButterfly, come on in and pull up a chair!
Today I am less jet lagged. Hurray! That's good as I am on a night shift tonight. I have aching joints, my hips and wrists mainly. That's ok though, not too bad, Can do the stairs and gravity hasn't felt too strong.
How about every one else?
Thank you FiveCOldRingsforSolo. Thank you for your experience. Again, I do hear you, what do you think of my plan about waiting for a dagnosis?
piprabbit - thank you too. 'm glad to hear you are 90% back to normal. Bloody scary for you though, you must have been very unwell. What a triple whammy!
I had protein S levels done about 6 years ago, when I was il in pregnancy. I wonder if they will repeat them. I looked at the symtoms, and it seems have a couple of the vauge ones - but none of the screaming ones like rashes and photosensitivity. Did you have any of those, or were you like me and stuck with vauge stuff.
I am really aware that if I read my list of troubles it sounds like a tired mum ground down a bit, in need of holiday. It's hard to mentally make the leap to a medical condition, for me anyway. But I'm getting there. This thread is 100% the driver, and I have been to the Dr which is an important step.
I'm also frightened I'll make the leap, and no one will agree with me. That would be awful, to not be taken seriously. I don't think I'd handle that very well at all, I'd be ranting all over the place!
Apologies for my mega posts, I'm using this like a dear diary aren't I?
I'm sure you are all very busy so I'll shut up
We have sleet snow!
Starisonthetree - wow, sounds like you have a greast service there. That's relly good to hear, it's enouraging.
My service might be ace, I won't judge it on a 10 min consultation. We'll see what transpires I guess.
Thank you for that advice. Wow. It must be tiring putting all the thought into how not to get tired! It's a really total life change and management thing isn't it. Gosh.
So did your diagnosis take the 6 months you were ill, or was it faster than that?
Mega long posts always welcome, although yours 'aint all that mega long
Thanks for the reply christmastree It does take a while to get your head round and I'm still learning.
They wouldn't make any diagnosis until I'd been off sick 6 months, but then it was quite fast.
Ready meals at Waitrose here I come, then bed..... 
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Christmastreedelivery, my own experience was/is that I struggled for well over a year before going to the GP because I just thought I was tired being a single parent and working a 39 hour week with 12 hours travel on top. My symptoms were a bucket load. My GP immediately told me what he thought it was and referred me to St Bart's in London. I saw a specialist who confirmed the dx.
By this time, 2 years had gone by. Mostly I continued to work; some of my shifts were 07:30 hours to 21:00 hours, then add 3 hours travel time. I was and still am a single parent and struggled big time... work were mostly unsympathetic to my condition. My best thing was to stay in a small office away from everyone else each lunch time, scoff my lunch and sleep for 55 minutes. I worked on the top floor ~ 56 steps up and 56 steps down (most of you will understand why I say the 'down' bit), I did my best to stay up once I got there; I started taking the back stairs whenever I could to avoid being seen struggling; I was fearful of losing my job. I still am.
I Did a cognitive behaviour course which didn't help me in the main I think because I had to keep working full time and I had to care for my son alone. The cog skills plan was to manage your illness; do graded exercise (think that was what they called it) and rest up many times a day . Well, I couldn't. My job did not allow for rests every hour; the only thing my line manager at the time offered me was to split my lunch hour in two...no good to me, I'd lose my sleep time.
I ended up on several occasions being off work for months at a time. The longest time was 7 months and I returned because I, by then, wasn't being paid a penny.
As luck would have it, I fell pg with my Dd and I've taken a career break. Now this is a good thing in some respects and a bad thing in others for me. I now dread going back (am waiting to hear if I can have another period of time added to it) and I have done very little really whilst I've been off ~ best laid plans and all.
My job is the most stressful job in the country. It is made extra tough for many reasons ~ not least because the management don't want sick people there. I am worried about childcare hours/costs, I have no transport to get me to work at the moment. I have no support practical or otherwise. The thought of getting up at 04:30 each morning fills me with dread. Doing a physical fitness test every year and control and restraint refresher annually which will mean somehow getting fit (HA!).
I could go on, but I'll stop.
I personally think that you need to rethink your life at this time; don't do the unnecessay, enlist help, listen to your body. You don't need to wait for a dx to know that your body wants to do things differently. Plan your days to include some extra rest time.
I don't know what else to tell you. I'm full of bitterness about the illness and what it has done to me, but I hate myself for not listening to my body. For thinking that it was ok to put in 6 hours a week in the gym.
Sorry. Even typing all that has made me angry.
Solo just to say 
for the way you've been treated. But not surprised.
And I hear you about the unrealistic cognitive or behavioural plans. Kept wanting to say, "And who'll be providing the servants so I can follow this lovely plan?!"
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