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Physical health improving but Brain Fog still awful

(8 Posts)
fuzzpig Thu 10-Jul-14 19:50:44

Just a rant really. Physically am recovering from CFS/ME, I mean I'm not fully recovered or anything but I am doing so much better in terms of what I am able to manage.

But my brain is fecking useless, I still make stupid mistakes all the time, my memory is shit, I can't do any of the clever geeky stuff I used to enjoy, I am not me anymore sad

Any advice would be most welcome

MerdeAlor Fri 11-Jul-14 09:08:56

Ok this is what I did:

I started following a paleo diet, main thing was no sugar for me so no boom and bust energy levels, cutting out grains seemed to have given me back clarity of thought and memory.

I take magnesium, D-Ribose, fish oils, hardcore multi vitamins and ginko baloba. The D-Ribose was really the main one for me. It's fantastic.

I really learnt to pace myself, too tired and I get brain fog.

The brain fog will go in it's own time fuzzpig. Sometimes you just have to accept it's part of this grim illness. Put your old life on hold temporarily. Get through this then you'll be back to your old geeky self.

fuzzpig Fri 11-Jul-14 17:03:45

Thank you, those are great suggestions. I have been taking magnesium and strong vitamins on and off so will get back to that, I've heard of D-ribose - where do you get it please?

Interestingly I've also been starting to improve my diet, reducing sugar and grains and anything processed. Yet another reason to keep going with it although I won't lie, I'm finding it tough!

I had my last appointment with my OT today and we talked a lot about the brain fog, she even got me doing a few tests as well as symptom questionnaires, TBH it brought home just how much it affects me still.

But we did talk about various things I could start doing as I really want to learn something and exercise my brain again. But I'm nowhere near ready for anything pressured like going back to my degree etc.

MerdeAlor Fri 11-Jul-14 17:22:50

D-ribose can be bought on line, from amazon or ebay I believe.
I agree, take your time. Whatever you do don't pressurise yourself into starting back to your degree until you're ready. I took some work on before i was ready, i managed it but on reflection it wasnt worth it.
PS I haven't had ME/CFS I don't think, I've had encephalitis but its very, very similar.

VenusDeWillendorf Fri 11-Jul-14 17:33:35

I agree with MerdeAlor, it's part of cfs/ME and you have to accept that.

I had it when I was studying, and took an extra two years for my postgrad. I had had to pace myself and learn that I couldn't keep working away when I wasn't taking any of it in.
Let them know in college that you are ill, and will need more time to finish your degree.

I also recommend supplements, and take magnesium, borage oil, and ginkgo. Haven't heard of D-Ribose, is it a protein ie a part of DNA (di-ribose nucleic acid)? What does it do?

Take it easy fuzz pig, cfs/me doesn't last forever, but you must listen to your body and learn how to pace yourself.

Looseleaf Fri 11-Jul-14 17:44:30

Getting rid of grains in my diet completely cured my years of ME/. Cfs. I was reacting strongly to wheat, rice and corn and would never have worked it out on my own but relieved to have a dramatic answer and solution! So it's encouraging your diet change is helping and maybe try a stricter version- I felt totally better within 2 or 3 weeks

Looseleaf Fri 11-Jul-14 17:45:38

I had awful brain fog too, forgot entire (important) conversations . Now fine!

fuzzpig Fri 11-Jul-14 18:47:16

Thanks everyone.

Don't worry I'm not going to go rushing back to my degree. I actually can't continue with OU anyway as they have a rule about dropping out of 3 modules, so I am now on something called 'restricted status' and can't continue with them. I can get the credit though, I have half of a degree and I think it also adds up to some kind of certificate in mathematics or something (should really phone them at some point hmm blush). I do want to finish my degree someday but actually I don't even know what I want to do when I'm grown up (I'm 27 BTW grin) - I had DCs after A levels then started OU. I had thought teaching as that's what I have dreamed of for many years but I'm not sure it's a sensible idea when my health is so vulnerable sad so basically I have shelved the degree idea until I am much much better.

I am lucky that I was able to keep my job though at vastly reduced hours, it's nice and I work with great people but it's not really stimulating my brain apart from the odd bit of training.

I can't even play piano that well anymore which is probably what's hitting me hardest TBH. I set a strict limit on time when I do play though as otherwise I would play all day and obviously make my physical symptoms worse! Much as I resent it sometimes I agree pacing is vital.

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