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!

Oops, sorry - there I go with the big posts again.

Oh Moose you have described it perfectly! Its not that I'm wobbly but more like things are not working properly so I look drunk as if there is too much innertia to get movement up and running. Its very frustrating.When I go to bed the opposite happens - I cannot get comfortable and everything aches so move around trying to get comfy. Bizarre.
I have a packet of seeds next to me - wonder how long this will last eh?

(good luck with your appointment Moose)

algae is great as an omega 3 source. If I was vegetarian I'd probably try and find a veggie L-carnitine supplement to try. You should be able to make carnitine in the body but it's easier for meat eaters www.vegan-supplement-checklist.com/2008/10/l-carnitine.html

I am the same at bedtime Magso. Usually desperate for sleep, but cannot for the life of me get comfortable and spend most of the night constantly changing position, tossing and turning etc. Decent quality, real refreshing sleep is a thing I scarcely remember these days.

Well done on the seeds. Can't say I'm ever going to love them, but I have become quite fond of my almonds, cashews, brazils and walnuts.

Nonemus, that's interesting about the L-carnitine - I'm currently having 'a moment' where I'm sure I've seen a food product advertised that's fortified with it, but its lost in the fog at the moment.

I already eat all the veggie sources they list regularly, so I should be ok, depending on whether or not my body is efficient at manufacturing. I've upped my protein levels recently as well, to compensate for the extra exercise I've been doing.

moosemama although I eat meat I'm currently taking a L-carnitine supplement. Without a test, which wouldn't be easy/cheap to arrange, I can't know if my body makes l-carnitine properly. To try the supplement for a month costs a few pounds. L-carnitine has been found in a small trial to help with autism spectrum disorders so it may be worth trying on your son.

I don't know if I'm recovering because I'm taking more rest or a result of the various supplements I'm trying but I really wish the NHS would offer tests for some of these things.

Interesting nonemus.

I daren't try any new supplements on ds1 at the moment, as we are having big problems with his weight and digestive health. We got some very odd/anomalous blood results for him yesterday, which have the paediatrician slightly stumped and are waiting for the results of stool enzyme tests.

I have postural hypotension and go dizzy on standing, sometimes with loss of vision, numb tongue and occasional out of body feeling. In the mornings I often feel weak and my muscles hurt. I have suffered depression in the past and have long standing insomnia. I use a combination of supplements which seem to help. St Johns wort and Tryptophan at night and Tyrosine and omega oils with multi vit in the day. I try and excercise which I think helps. I have read about adrenal fatigue which seems to fit my symptoms. The treatment seems to include salt and caffine, fluids to keep blood volume up and adrenal extracts or licorice.
My GP is unhelpful as my postural hypotension does not register enough when she tests it.
I have had years and years of feeling shattered. Even on a good day the only thing I really feel like doing is sitting still. I hate to move! Just prefere to sit.

Welcome Topsy. I am not the OP but I'm sure she will not mind me welcoming you. Is there a local specialist with an interest in Chronic fatigueing conditions who might see you? It took a long time to find out who for our area.I get cravings for licorice and salty foods. I wonder if some ancient pica is guiding me to it ( but why chocolate!)

Many people have mentioned poor absorbsion of viamins and minerals via the GI tract. I had rather overlooked this because I do not have a diagnosed disorder but the reason I started sublingual B12 was because of my inability to eat at one stage ( sickness). So I wondered what other ways we could list whilst we try to get our GI tracts in better working order.
For instance sublingual B12 are they any other essentials that can be absorbed this way?
Skin - well aromatherapist clearly beleive the skin can absorb helpful things. Moose put me onto epsom salt naths to absorb magnesium. there is also a skin spray foe this.
Any other ideas?

baths not naths!

I meant other ways of absorbing essentual nutrients Whilst getting our GI tracks in order!

Topsi, ask your GP to perform a Dix hall pike test and check you for benign postural vertigo. This could explain your symptoms and be. Easily treated with antihistamines and physio
Hth

Afternoon

Had my neuro appointment this morning. She listened and watched the video clip of me having an 'episode' that dh had on his phone, then did all the usual reflex and pin prick tests.

As expected, all seemed ok today, but she said due to the nature of the symptoms I've been having they need to take it seriously, so she's ordered an MRI of my brain, neck and spine, which is booked in for 9th November.

She skated around the whole fatigue thing, obviously not keen to get involved there, but she did put it in my notes and on the MRI request.

If they don't find anything significant, apparently I will just get a letter and the results will be sent to my GP, but if they do I will be recalled for another appointment.

She said, considering the fact that my health has improved dramatically since my last attack, she feels they are unlikely to find anything drastic and may have to put my symptoms down to either 'viral involvement' or as connected to the extreme fatigue.

So .... sounds like I'm unlikely to get any meaningful answers or a dx from this - which is pretty much what I was expecting.

I suppose if the MRI and neurology doesn't show up anything it will effectively be very good news Moose. I understand how frustrating it is when nothing conclusive is found. Fingers crossed for your MRI.

Thanks Magso. I don't think I would get reffered. I think I have probably been labled with chronic depression and feel unable to go and make a fuss really. The last test I had done was a run of the mill thyroid which of course showed nothing. The thing is I feel less depressed now than I have for years but still suffer dizzy spells and fatigue.
I think it is something to do with adrenals but unless you have dramatic problems then conventional medicine won't recognise it.
My only hope is to pay privately for some tests I think.

topsi have you had a cortisol test? I thought I fitted the symptoms of adrenal fatigue but that was ruled out when a cortisol test was high. Have you had blood sugar levels checked, problems with blood sugar can cause depression and dizzy spells and a low glycaemic diet might fix it?

As some of you know I've been trying lots of supplements. One of them had a slight but immediate effect, I wasn't expecting that as I thought I'd have to take them for months but thought it was the L-tyrosine. However it seems to be the L-carnitine and that's pretty odd as I do eat meat and it isn't recommended for those with a slightly underactive thyroid (didn't know that when I started it). The pains in my shins disappeared (they came back the next day) and my head also feels different, less congested. L-carnitine is not without it's risks as it's supposed to lower blood pressure, reduce appetitie (haven't noticed that) and in excess it can cause pancreatitis. On the plus side it may help libido I'm actually thinking of doubling the dose and taking it morning and lunchtime or early evening, it shouldn't be taken in late evening.

am gonna do a private thyroid blood test and then maybe a cortisol test.
Don't know much about l-carnitine but will look into it.
Is it right that high cortisol can be a sign of stress and that in turn this can impact thyroid function?
I feel physically stressed at some point every day. This morning I felt overwhelmed and slightly sick?

have ordered some adrenal extract and will give it a go

The Norwegian trial of treating ME patients with Rituximab has just been published. 10 out of 15 got better with the drug.
www.tv2.no/nyheter/innenriks/english-version-norwegian-research-breakthrough-can-solve-cfsmystery-3615631.html
This is an English translation, there are several other articles on the same website which are just in Norwegian, but you can use google translate to see them.
This was presented at the conference in London last May, but it's only just been published.

That is interesting CFSKate! Off to google Rituximab!

This should link to a google translated index of the Norwegian articles about the Rituximab trial

translate.google.co.uk/translate?sl=no&tl=en&js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fwww.tv2.no%2Fnyheter%2Finnenriks%2Fhelse%2Falt-om-megjennombruddet-3615866.html

It is also on the DVD of the conference that we were talking about earlier in this thread in the summer.

I have'nt read through all of the posts so this may have been mentioned already, I came across this company who sell health related products specifically for those with asthma, allergies, M.E., C.F.I.D.S, PVFS, CFS, GWS, eczema, IBS.

www.biosis.ltd.uk

I have had several signs that my illness is some sort of autimmune disorder. Of course the CFS might be caused rather than primary in my case but it makes you wonder. I have been somewhat better recently so I keep wondering why so I know what helps! I had a long course of antibiotics for a sinus problem- had more opportunities to rest (ds away on residencial school trip) and a flu jab - so which if any have helped?

Here is a TV news report about the rituximab trial, it has English subtitles, which might come on automatically, but if they don't, you just click in the bottom right of the video where it says cc

www.youtube.com/watch?v=ZBCXKIRBQ-s