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]

I take it you have not had a good experience trying to get state help ThisIsANiceCage?
Is your work affected?

[Christmastreedelivery]

Thanks Sharbie and Fanjoforthememories - hope your test results are what you hope for.

Hello GotArt Thanks dearie.

[ThisIsANiceCage]

Honestly Christmas, you sound so like me - not just when I was still working but even now, wheelchair 'n' all, on good days I'm convinced I must just be a lazy bugger.

Then I do something extravagant like stand up for 30 mins, or walk to the shed three times in one day, and 48 hours later I know, yep, I'm ill.

DP is hugely affirming at times like this - he stops me gaslighting myself by reminding me how I've been at different stages.

Sorry, I think I must be depressing you really badly for tomorrow. I'll shut up now, but will check in after your appt in case you want a really good, chocolate-coated whine, with sprinkles!

[ThisIsANiceCage]

sorry, x-post. Talk tomorrow

[Christmastreedelivery]

Thank you for all your input on my thread. I'll let you know how I get on, and what their opinion is.

I'm sorry to hear your ME has got to this stage, but how good to hear of your DP and the good days. Sleep tight, hope tomorrow is a good/great day.

[GraceAwayInAManger]

Just marking my place here. I'm stuck with a CFS label but no specific diagnosis - I've had all the tests, so I have got CFS, but nobody around here is very interested in it, so that's that

As I have long-term depression, I've taken to saying "I realise my condition may be psychogenic, but the symptoms are still real." Which seems to work in terms of dealing with Officaldom.

I agree with ThisIsANiceCage - against all common sense, the most helpful approach is to label yourself as having an illness. Alongside the benefits TIANC mentioned, it allows you to be very patient with yourself and 'pacing'. The fact sheets make it sound like a bit of pacing will have you fixed in a few months ... it's taken me a year to get my daily walk up from half a mile to one mile!! (And I was scarily fit before this started.)

The only acknowledged treatment advice boils down to rest and healthy living, so you may as well get started on that while going through all the tests; it can't harm you! It's an incredibly frustrating condition - you have my every sympathy. Please try to respect your limitations sooner rather than later. I am sure I made mine a lot worse by pushing myself too hard at the beginning.

[ThisIsANiceCage]

Having a last read thru before bed...

Christmas tell the doc the bit about going up stairs on hands and knees.

I only realised after reading my medical reports that, reasonably enough, the doc had no idea what "exhausted" meant for me. All day long he has people in front of him ranging from stoic to drama-queen. But people don't go up the stairs on hands and knees because they're a bit overweight.

Another pitfall is the word "can": "Can you do X?". This is not a yes/no question. You need to say, "Yes, but not easily, it causes pain," "No, not as I used to, although I can still manage by a special trick I've worked out."

And now I really really will shut up.

[Christmastreedelivery]

bless you. Right.

Tired day today, although have walked up the stairs. I fell over when I was crouching down though, my legs wouldn't hold me

DD2 is hopefully napping soon, so I am going ot make some notes for the appointment. Thanks for all your help.

[stayathomegardener]

Just checking in.Totally agree Nice Cage,I only realised in the early days how much I compensated and did everything on my hands and knees when every pair of jeans I owned wore through.

Hope appointment went well Christmas.

[ThisIsANiceCage]

Hope today went well, Christmas.

[miSaltireandwine]

It could be Fibromyalgia. It sound slike it. I was diagnosed with that about 5 years ago.
I get hellish flare ups. I have mild tolerable(just) pain 24/7. Then i get flare up pain, where sometimes it is so bad I cannot walk without a stick.
my joints swell in ym hands and feet if they are sore.
i get pins and needles down my arm,I ahve pretty permanent pins and needles in the last 2 fingers of my left hand
I have visual problems
cognitive problems
IBS
these all occur during a flare up. And the fatigue, i described it DH once as hitting a wall head on. I couldn't get past the wall it was stopping me

[Christmastreedelivery]

Hello.

miSaltireandwine grief that sounds hellsih indeed. Does any analgesia help? What are the visual problems, out of interst? Don't feel you have to share though, I'm sure dweeling or talking about these things can be upsetting, so please do ignore me.

Well. Today. I had a nice list, which I forgot. Naturally. Anyway, I don't think would have used it. It wasn't that sort of consultation. GP ased me about moods, and talked about depression. Wants me to have some blood tests [don't know what and didn't ask tbh, although I have to fast] and come back to be reviewed when the results are available.

I said I didn't feel any snappier or grumpier than any other mum or wife, but naturally when I'm aching or really sore I am shorter. I said I feel happy and life is good, I'm just very very achey and tired, adn fed up of sore throats. GP seems to think that is depression, and wants me to ask my husband if I seem to have low mood.

I asked if depression could have this level of joint pain and skin pain, and he said yes, sure, depressed people describe their arms as heavy and aching. As that wasn't what I was complaning of [mine is a nervy pain, tender to touch and pressure] I just figured I'd get home and not worry too much. If they wish to try antidepressants then I guess I'll try them, and maybe they will cure all.
If they don't then maybe I'll persue it.

I don't know. I guess ultimately there is nothing they can do that I can't do myself, I am well able to research and find the treatments and management myself. I guess.

As long as I can hold the job and perform as I need to, and keep the house ticking over.

I hope whatever it is buggers off though. I miss all the birthday parties and trips out etc, I get dh to do all that. I'm usually flopped somewhere.

So what do you think?

There is something annoying about the idea that if you have boobs, a uterus and a random illness, you must be depressed. If you have a chld or two then I'm sure the antidepressant prescription is written as you make your appointment, regardless of your complaint being a sore toe.

[GraceAwayInAManger]

I know! It feels as though you're being dismissed (as neurotic!) :(

After all these years of seeing consultants - some of whom are quite bright - I've acquired a much more holistic view of things. It all comes down to your central nervous system, basically, and modern antidepressants do help with that. I've posted essays on how the adrenal system affects every other function - physical and mental - but, nowadays, there's far more published information on this. I feel sure you'll be reading up on it as you endeavour to treat (or manage) your condition. There are domino effects throughout the chains of mental, hormonal & organ functions and, no matter what started the dominoes falling, you're left trying to fix the whole system so as to get them standing up in a row! (Sorry for the overworked metaphor there.)

Advice I follow:
Rest
Pace
Perfect diet
Humungous vitamin & mineral supplements
Learn about your mitochondria
Learn about your nervous system
Meditate
Learn to generate inner calm

Advice I don't follow, but should:
Don't smoke
No more than 1 glass of wine a day
Find a routine that works, and keep to it

Pacing, incidentally, means: Identify the level of activity you find easy on a good day, and can just about manage on a bad day. Stick to this level, even if you feel you could do more. Increase it when (but not until) you find it moderately easy on a bad day.

Knowledge about the CNS and about mitochondria is increasing VERY fast. You need up-to-date information.

Good luck :) :)

[ThisIsANiceCage]

Bugger. Sorry it went like this.

This is like watching a movie of me right back when I was getting ill - except you're more articulate and have identified specific things better "moving through treacle", "nervy pain, tender to touch and pressure" (yes and yes).

I too am incandescent with rage about "I don't know what it is, so it must be psych." I understand exactly why doctors do this - FGS I have a degree in this shit! This, right here and now, is probably the first conversation I have ever had on M.E. where I haven't had to justify my fury (don't so much converse with DH on subject: I rant, he makes tea).

I think you can do better than just knuckling down and carrying on, but I need to think how not to project my own negativity views in case they're not helpful.

Will post again later.

[ThisIsANiceCage]

Sorry, DP, not DH (what was I thinking?!!! )

[Christmastreedelivery]

Hello GraceAwayInAManger. Your metaphor makes sense. Feeling somewhat nervy at the idea of generating inner calm. I have a suspicion it is my inner lack of inner calm that keeps me moving, and if my lack of calm goes away I might....I dunoo....fade out altogether!
I feel as far away from mediatation as it is possible to feel. Oh dear. I might have a long road ahead. On positive I don't smoke or drink. I eat shit though

AM much more comforted by the idea of reading up on mitochondria. I can do that, and do that well

I am interested in this pacing business. I need to have a good think about that.
I am seriously scuppered with work though. My next 7 days involves 3x12 hour nights, onex12 hour day, and days off sprinkled here and there. Boy will I pay for this. I have a week off then though, so am chuffed really. Christmas at home and plenty of time to recover.

ThisIsANiceCage* I think you should discuss and give your views. They are insightful, honest and helpful. I may or may not have ME. If I have, better know the real deal. If I haven't, then I can still use all the things I learn to help myself out. I do really need a road out of this sleepy land, so I hardly care what I/they call it. I just want my wrists to stop aching.

I'm worried it is too upsetting for you though, sometimes it's good to talk isn't it: sometimes it just pisses us off and reminds us how crappy things can be.

But no, you sure don't have to justify your fury to me. I seriously get it. I nearly felt it today, GP asked if I felt myself getting irritable with people and the temptation to say 'only with you' was very strong indeed! I had to remind self that I am not diagnosed with anything, this is a first appointment, and GP was being entirely reasonable. Stoic self control. Might have used it all up though, so may have cats bum face on at the next meeting.

I don't feel I got across the pain element, and the weakness.
n fairness to him, he hit it right on the head when he asked if I'm hard on the kids and then think 'they didn't deserve that'. Now that I have felt, and if it's depression then I'm all for treating it and turning it around.

As long as the aching wrists go too.

[Christmastreedelivery]

That you'd marry him for his tea making abilities?

Apologies for massive post!

[GraceAwayInAManger]

Gallows-style chuckles at every word of your post, Christmas. Yep, that "gotta keep going or I'll stop forever" feeling is what made me thrash away at my life, aeons after my body had started screaming "STOP!!"

I hope you turn out to be fixably depressed, rather than having a mysteriously knackered system. Your job sounds seriously demanding and, if you have got ME/CFS/FM/similar, you won't be able to keep it up. My employers (national newspaper, tough tough tough) were as tolerant as the law obliged them to be, but made me redundant first chance they got. Knowing what I know now (hah!), I should have spent my payoff on a six-month holdiay somewhere hot and quiet. I'd probably be back on the treadmill by now, stressed but healthy ...

You realise your GP's question about the kids is a stress test, don't you? Please do read something about stress, depression and the adrenal system. It might make you feel more in tune with what's happening to you, and put you back in charge of yourself.

And meditate! (She screamed stressfully.) It's just long, slow breaths and letting your mind wander over pleasant thoughts. You can do that

[Christmastreedelivery]

That is a concern GraceAway [if I may shorten you in that way], I need to work. DH and I warn an equal amount, so we can't just loose half our income. What a thought!

Yes, fixable depression would be the prize. Or a post viral thingie, for 2 years or so. Hmm.

I didn't realise that question was a stress test really. Although it made me stressed. Maybe I'm just miserable, stressed, overweight and run down. Entirely possible. Nothing a good gin and a disco dance wouldn't cure

If I meditate I'll think about things. About how I'd rather be living in NewYork, a petite brunette, with a flat on Park Avenue.

Will google stress, depression and adrenal system instead.

[Christmastreedelivery]

Btw, I meant to ask, have you gone back into work? After the redundancy? I'm sorry to hear that's waht happened to you.

[arionater]

Christmas - sorry I'm a bit of an intruder here as don't have experience with ME, but do know about chronic pain from other causes. As no-one else has mentioned it, you really should make sure that your GP is checking your inflammation levels and rheumatoid factor in your blood tests (probably he is, along with everything else, but ring up and check). Rheumatoid arthritis often hits wrists first and can make people feel all-over sore and exhausted, especially in the early stages. Sadly it does fairly often appear in women in the 'prime of life' (e.g. 20s and 30s). Did the GP actually examine your wrists at all? (Though in any case it can be quite hard to discern inflammation there as it is such a little joint, unless the doctor is an expert.) Do your joints feel stiff as well as sore, especially e.g. in the mornings? These are all things your GP should have asked you really, but it sounds as if he was quite fixated on the tired/stressed/depressed angle.

[Christmastreedelivery]

No he ddn't, but he did ask if joints were inflamed or if family had it. Intrude away, as I might not have experience with ME either. It might be anything/nothing/something else. Thanks for the advice.


I'll ask the nurse what I'm having done, must make appointment. Must remember to do that.

[jollyoldstnickschick]

I havent read everything (bit too close to home for me) even if you have M.E it doesnt help,theres no cure,no reasoning,no cushion.....my ds has had M.E symptoms since he was 5 -I didnt want a poorly child (although some Drs seemed to think initially I did) I had an active intelligent sparky little boy who started to decline rapidly -he does have all the symptoms you speak about and has had them and worse for 10 years .

To get an M.E diagnosis they have to rule everything out sometimes twice over ....we have had countless visits to the hospital for tests saw many consultants had our lifes questioned.....even down to lavender oil .

So ds got a diagnosis ...... hes still got M.E he still is poorly all it really means is everything that ever happens now is because he has M.E or at least thats the impression.

Dont think too much about a diagnosis - concentrate on getting the best out of everyday -research pacing and try to app ly it to your life.

I think a lot of people have M,E symptoms and if Im honest I think a lot of peole are just ground down with lifes expectations their pains are v real but unlike ME their symptoms can be resolved.

Hope you start to feel better soon.

[moosemama]

Tree, sorry your GP was of the everyone has depression persuasion.

I don't really have much to add, everyone else here has much better advice and experience to offer than me. I just hope your bloods do throw up a question mark that makes him stop and think twice before labelling you so easily. At the very least you should have had a basic physical examination and he should definitely have examined the joints you told him hurt all the time.

Fwiw, my inflammation (sedimentary rate) and white cell count are waaay out of whack every single time I have a blood test. The GPs tend to just say "oh, you must be running a low grade virus or be just recovering from one" and don't bother investigating it any further. I also had a raised (rhs?) rhuematoid count (sorry not sure of the technical terms here) several times but was told that was probably post viral as well. Totally crap care, especially considering my Mum has RA.

I did have one gp call me to the surgery urgently to discuss my results once, but she was then called to an emergency when I got there, so I saw someone else, who said they couldn't see a problem with my results at all. Very strange considering the first doctor saw fit to get the secretary to phone me and ask me to come in urgently that day, when usually you get the results over the phone from the receptionist or a telephone conversation with the doctor.

I never went back about it either though, I spent too many years being treated like a guinea pig by newly qualified gps desperate to find a real live case of ME and ended up hating going to the doctors for anything. It was maaany years ago, when ME was still fairly new/unheard of and there was no clear diagnostic route and I was having episodes where I literally couldn't manage to walk across our tiny sitting room without help from dh. Since then, having had both reactive and pnd, I know that any doctor I see will just yell 'depression' and stick me back on citalopram. I did try talking to a, usually, lovely doctor we had in Lancashire about it once - his response was to walk the dogs more and do more exercise in general - yeah right I'll get onto that as soon as I can manage to walk from the sofa to the front door!

Do you have more than one doctor at the practice? Might it be worth speaking to another GP? I tend to ask the receptionist what the individual doctor's specialisms/interests are before I book these days and it makes a huge difference on how the consultation goes.

[GraceAwayInAManger]

Thanks, and you may shorten me any way you like! Bit of a bum deal when you're hoping for depression, isn't it?!

No - having been forced by my own mind/body to take it seriously, I'm now living a very tine & impoverished life. I retrained and work freelance - limiting my work to levels I can manage. I tell clients about my situation, and undercharge in exchange for their patience. It was toughing it out that got me here: I really wouldn't recommend it, though I guess everyone has to muddle through in their own way.

I need to apologise for any offence this next bit might cause to others. During my researches into depression, nervous systems, etc, etc, a cluster of things happened amongst my friends, colleagues & co-patients - which revealed that everyone I knew, who was suffering one of these weirdy illnesses, had a serious emotional issue they'd pushed into the background. I am NOT saying that all illnessesare caused by emotional problems! It was a wake-up call for me personally, and that's why I'm taking my crappy childhood more seriously these days.

I've done a lot of reading on neuropsychology/neurobiology which, self-evidently, has been led by the above. I have no reason to feel it's necessary for sufferers to dig around their unresolved issues - it was for me, but that's personal. I do, however, feel it's crucial to respect the power of your mind. There's an ever-increasing mountain of evidence that mental & emotional clarity, peace and rest contributes to physical well-being: putting the dominoes back. An ongoing study in NZ & Australia, where they've had epidemics of CFS, continues to show positive results for meditation-based therapies.

So, yes - whether you have "just" depression or a full-blown 'mystery' illness - common sense says you'll recover faster the more seriously you take it, and the more you know.

Hint: Try a beginner's yoga class! Tell the teacher you're aiming for fluency rather than fitness. Also, most gyms do slow stretch classes for a similar result :)

Sorry for rambly nature of post. Client just rang up with a crisis, so had to finish this quickly