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]

Hello

piprabbit thanks, that is interesting. I'll see what bloods are being taken when I manage to get too the dr's! I wonder if it might be that.....I hope you are well, and it is all under control for you?

I'll certainly take anti depressants if offered. Firstly, I think that if the doctors think that is my problem, it's only fair to see if they are right. Then if I am left with symptoms, we can keep hunting for the cause.
Secondly, it seems they may indeed help with symptoms, and I'm all for that.

It still rankles me though, that if any person with boobs and a uterus so much as has a moan about the weather they must be depressed, and if you had a child recently, well - then you are depressed no questions asked. So what you say rings true for me too BrandyButterfly, about the cheerful in spite of everything.

However, Grace I too am of the opinion that metal and physical wellbeing are closely intertwined, and I am not frightened of having a label. I have no judgements or bias about that, so long as the label isn't limiting in the way people treat you. It doesn't stop people thinking about other things that might be going on too. It's hard to express what I mean really.

I will miss some posts out, am foggy brained and have headache. Had to leave work 2 hrs early as I suddenly vomited, bleurgh. Have slept until 11, and now have a stinking headache. Longday tomorrow, so taking it easy in prep for that.

Which brings me on to the idea of keeping symptom diary. I'm going to do that, as I need to impress upon myself everyone just how many adaptions I'm making to accomodate my tiredness. Anyone else would be getting up now, and thinking of doing some shopping, getting milk and bread bought etc etc.
Not me.

SO thank you for that MrsSnaplegs, and your your fab post. Loads of brilliant advice there. I will look into the relaxation link. I was thnking of saving up for a one on one yoga teacher, maybe a few classes in the home. I cannot go to a group, it would be like hell on a hot day for me. But maybe a short [and expensive] personal intro might get me on the path.
Happily my dh is a wee gem, and my eldest girl a compliant, helpful little body. I am really well supported. I am very lucky, but maybe in some ways it has masked all the adaptions we have all made. In my family I mean.
DD1 says I am very funny, I get everybody up in the morning, and then go back to bed and stay there. I thought it was funny, now I think it's actually an insight into something. Kids see things so clearly.
I don't know what the form is you are filling in MssSnaplegs, but I imagine it is a hard thing to do. Good luck.

Solo I cried reading your post. I really hope that you have some more saftey nets around you, to help you not worry too much, and give you much needed support? I don't know what job you did, but I hope no one I know ever feels the need to go into it. It sounds like it demanded super human levels of work!
Interesting that you say you have to keep some activity going, and not stop altogether. That's a useful lesson, as the instinct is to smply shut down and shut out altogether isn't it? SO tired, so sore, so easy to answer the bodies call to just lie the hell down.
I feel I could happily stay in this bed, in this room, and sleep and lie for a good 10 years. Then I remember all the lovely things I am missing and feel sad.
So I need to get better.
Interesting that I can imagine not shopping, not going to see santa with girls, etc etc. Yet idea of being off sick makes me WHY are we like this?????

BrandyButterfly it seems the two conditions are very close cousins doesn't it. Thanks for all your wisdom.

CFSKate - thanks for that information. This push/crash cycle seems to make perfect sense and describe my life. It is a major pita that my work almost requires it. The GP said it was 'hell and no notion, or sitting eating biscuit' and that is right. Although even when it is not too busy, it is still a 12 hour working day/night with all that entails.

Grace Hurray for internet shopping. If you talk to smaller speciality shops, they will sometimes drop around a regular box of products. We have a couple of butchers and grocers that will do that. Although a nice mooch in a shop can be good for the soul too.

WHat a thread! There is so much amazing advice here, and bloody good company. We are not alone!

[Christmastreedelivery]

Now that is a mega post.

[Christmastreedelivery]

Sorry to hear that BrandyButterfly. Hope it passes soon.

My headache has launched into something major. Whole neck, skull, eyes. I'd like to take my head off.

[FiveColdRingsForSolo]

I had that type of headache recently too; not nice at all...

I am a prison officer. It is very hard work and stressful, physical etc. If they wont grant me another year off, I have to return in less than 3 weeks. I will accept prayers ladies; I need prayers. Please.

[GraceAwayInAManger]

Praying for your year off, 5cold.

Presumably you have looked into how you could muddle through on benefits? Would you get any assistance from the prison service if you have to resign through ill health? Sorry, stressful questions and I should be in bed. Hope things fall into place for you.

[FiveColdRingsForSolo]

Call me solo Grace, that's my usual.

Thanks for the prayer. I've been on benefits for 2.6 years now and yes it is a struggle, but I've done it and as long as bloody Cameron doesn't make a total mess of the benefits for genuine claimants, I should be ok.

I wont get anything from the PS, no.

I'm to bed too. Good night.

[GraceAwayInAManger]

I guessed your profession, solo. It's got to be a very ba idea for someone recovering from an energy-sapping illness!

I wish the benefits were just a little bit more, as I spend half of every fortnight in a state of high-stress budget anxiety. I have just been awarded the lowest rate DLA - it came at the right time, with electricity costs going through the roof. I've decided not to appeal for a higher rate ... as the appeal process is so stressful! Gah!

Just discovered my next-door neighbour has FM. We shared a good old moan about how much worse winter makes us feel.

Hope you find enough of the right kind of support just now :)

[FiveColdRingsForSolo]

I applied for DLA in 2004. It took me 6 weeks to fill it out as I was so ill and with every gap in the filling in, my handwriting changed! I just couldn't think straight, my hand wouldn't behave. My actual 'healthy' handwriting is quite nice, but this was scrawl and about 5 different types of scrawl too. I think that because I gave them my best case scenario instead of the worst, the jogged me on.

Grace, I've just reaised who you are (peeked at your profile). When I get the chance, I'm going to PM you.

Treedelivery, how are you feeling?

I hope you are all Ok.

[Christmastreedelivery]

Hello Solo and all.

I'm doing good thanks . Got through the night and day shift, and managed to do family stuff yesterday. So not the physical fall out I expected. On nights tonight, so am hopeful I won't have a crash on Wed and Thurs. It simply isn't possible with Christmas, and besides, I want to be involved and enjoy it all.
Got the bloods on Christmas eve morning.

I'm off to bed now, to help tonight. So hoping you are all great, ok, managing, well supported, resting or asleep.

Hope the cold virus thing has passed brandybutterfly*

Solo I cannot imagine the ps at any point, but with a condition like this.....the mind boggles. Have prayed for you, and off to midnight mass [or 6pm mass] so will do so again.

[FiveColdRingsForSolo]

Thank you tree stay well.x

[dawnrising]

Hi there, hope you don't mind me adding my two-penneth...

All doctors do is look at the symptom and medicate it without looking at the root cause. They do not even consider diet or lifestyle, in fact doctors are just pharmaceutically trained. With that said, there is of course a time and place for medicine, but there are other areas of to explore.

Have you seen a Nutritionist or Natural Health Practitioner for a 'balance' of information? Counselling can also be really beneficial at challenging times as it's interesting how emotions can create 'dis-ease'.

On a practical note - Superfoods and extra Vitmains & Minerals have been known to really help with ME symptoms.

Niacin (B3) for instance is a natural help with depression as are essential fatty acids. Extra enzymes can help with aching limbs. It's also surprising how much a poor digestive system can cause many health problems.

When our body crys for attention by way of an illness or condition, it's time to investigate it and use a multi-dimensional approach, even though we're conditioned to just go to the doctors!

Really hope you feel better soon.

[FiveColdRingsForSolo]

Dawnrising, thanks for your post.

My own experience is that I tried a blind trial research ting with Barts. I actually found it so difficult to keep to, so stopped doing it. It hadn't made me feel any better at all during the time I did it. It was a no sugar, flour or yeast diet. Sounds simple doesn't it? it was hell.

IME, my GP did not dump meds on me, the specialist gave me an SSRI to alleviate some of my symptoms, but by then I'd been suffering for a long time.

I've been to a highly recommended Japanese herbalist and acupunturist, but even she couldn't help me despite having helped numerous others with ME. She gave me treatment for nothing too and charged me at cost for the herbs etc, so it wasn't like she was just out to make money from me; she certainly wasn't.

I do think that living on an unhealthy diet can't do very much good for anyone regardless of their medical history and I personally am a cook from scratch with fresh meat and veg type of person, so I don't think my diet is a problem per sé.
I don't drink very much alcohol as I can't afford it and don't enjoy it that much anyway, so a glass of wine or a mouthful of a spirit would be my limit. Ditto chocolate (except the bit about not enjoying it ~ I love it).

I think the only time I can say that a 'diet' has given me anything, was when I went on the Atkins diet and after the first two weeks, I suddenly had a huge amount of energy and felt normal with no pain etc. Sadly, it only lasted a few days.

Anyone else tried anything like this?

[GraceAwayInAManger]

Interesting about your Atkins diet, solo. I feel noticeably healthier when I eat a lot of red meat (it makes me feel so much better, I even started a thread about it!)

Meat provides many of the nutrients needed by mitochondria. Have you seen Sarah Myhill's website?

[ThisIsANiceCage]

Hi there, sorry for abandoning you all for a while. I won't try to read everything or post much till after Xmas because this superb thread is so tiring. Lots of interesting stuff to think about.

But I wanted to say yyy to the diaries, that's brilliant, and please Christmastreedelivery do make sure you show those and your original list to the doc next time you go (inc the sore throat bit and the hands & knees). At the moment, your doc doesn't know whether you're working up to ask for help for sexual assault and PTSD (as some brave MNers have done), or what. So you need to tell them. Things may not go constructively from there, but it's a first hoop you have to jump crawl through.

Mmm, you said to post even if it's a bit negative, so everyone please ignore the below if it's statin' the bleedin' obvious or just not helpful. This is my perspective on doctors wrt to an illness which cannot be cured or even definitively diagnosed.

The Uses of Doctors in Dealing with ME

? v important to rule out other things, as discussed above
? labels can be very useful, ditto
? ME obviously isn't prophylactic against other stuff, so although it can be hard picking out symptoms against the ME you can still get everything from swine flu to cancer
? some of the management programmes can be useful (but some may be harmful)
? drugs might help with particular symptoms
? the doctor is the gatekeeper to all other things

Without your GP agreeing that you are ill and filling in forms correctly, it's next to impossible to make the changes you need. Their cooperation is necessary (tho usually not sufficient) to:

• take time off or get adjustments at work
  
• interact with the benefits system at any level, from tax credits to the rapidly disappearing sickness benefits (more on that another day)
  
• access things like blue badge disabled parking, bus & train passes (various sickness benefits can act as a passport to these things: it's a giant pyramid resting on your GP at the bottom)
  

The gatekeeper role means they have terrifying amounts of control over every aspect of your life, from your income to whether you can reduce pain enough to attend your child's birthday party. All from a five minute interview and the sight of you walking from their door to the chair.

There are much darker aspects of this control. Being disbelieved by Authority and made to doubt your own senses is harmful, but it's the mild end of a spectrum, the other end of which was touched on by nickschick. Because if you're a doctor who believes ME is psychosomatic, then to you it's obvious - apparently - that children with it are being deliberately harmed by their parents, ie Munchausen's by proxy. So the children should be put into care. Nice. Both this and the sectioning of adults has actually happened.

_____________

Back onto happier stuff.

I hope everyone here is coping with the run up to Christmas, and I'll be thinking of everyone on this thread over the lovely but draining festive season.

Take care, everyone.

[GraceAwayInAManger]

Wise post, Nice Cage.

I wrote my doctor a detailed letter and asked them to keep it on file. It emerges (from the DWP files) every time I have a benefits review. So I'm going to start the diary and update my letter every six months or so.

In support of what you said about GPs, their task is huge and they do need patents' help. Plus, it's definitely worth asking to see a different doctor if yours persists in using words like "you claim to be suffering ..." and "you think you have ..." It doesn't mean they're bad people, simply that their world view is currently incompatible with yours.

BUT I want to re-iterate what's been written above about anti-depressants. They work primarily against stress, and stress is a major factor in immune-compromised conditions. A prescription for ADs does not mean you're being written off as depressed - and you can establish how your GP's thinking by asking them!

I've just discovered it's Wednesday not Thursday so am feeling rather more relaxed the onset of Christmas! Hope everybody manages a peaceful holiday.

[GraceAwayInAManger]

people ask 'what exactly's wrong with you' and it's just so they can tell you about their favourite miracle cure

You've met my mother, then?

I believe lamb counts, yes ...
yum, yum :)

[ThisIsANiceCage]

Oh god yes, the miracle cures. I managed to attend a wedding reception last year, and every second person came up to my captive seat in the window with their special cure. The best are the ones which end "...but I'm not sure if that was for ME or MS. Or it might have been lung cancer."

Sorry you're so whacked at the moment, Butterfly. If you miss Epiphany, there's always Chinese New Year.

Grace that's a brilliant idea about the letter. When I got hold of my DWP reports through a Data Protection Act request, I found my GP's principal contribution was "Claims to sometimes have difficulty picking up a kettle." Cheers, mate.

[FiveColdRingsForSolo]

Word of warning re anti depressants to help with symptoms though...

As I've said before I was on one and then I was trying to take out some insurance or other (life and critical illness) and the GP put down that I'd been on an anti depressant for x number of months. If I'd not asked to see the report first I wouldn't have known this. I had to ask him to amend it to state that it was not for depression.

Grace, I thought it was Monday on Tuesday, so I feel I've been robbed!

I haven't wrapped a single Christmas gift and I'm sooo tempted to bung them all in a bag (mostly books) to give the Dc's, but I guess that'd be a bit mean . Haven't put a tree up though and I'm not going to.

[GraceAwayInAManger]

Blimey. I'm shocked that an AD prescription would affect life insurance! Isn't 30% of the population supposed to be on them, or something like that? Nice money-spinner for the insurance companies, if so ...

Trees definitely not necessary! Wrapping might be, though. Sorry

[FiveColdRingsForSolo]

. thought so!
I had to decline my update of life and critical illness because of my ME as they lumped it in with mental illness!!!!!!!!! they loaded me dreadfully because of it. So treedelivery, if you need to update your life/critical illness insurance, do it before you see anyone and get a dx although I'm not sure of any possible implications attached to that advice. I'm under insured for my mortgage now :(