Hi all. My energy levels have increased a good bit over this past couple of months, (although far from normal) and there has been good improvement in the cognitive difficulties I have been having but the progress in my ability to think and plan is still far behind my body.
My brain shuts down when doing anything that requires concentration and I've lost a lot of confidence in my ability to do and understand stuff. Anything that causes me to have to think on my feet just 'melts' my brain, if you get what I am saying?!
Has others experienced this where their physical symptoms improved better than the cognitive ones? If so dos this remain the case where the brain lags behind or does it catch up?
Yes, but don't know! My physical fibro symptoms have eased drastically - and always do during the summer - but mentally I easily become muddled. I think for me it links in with a sense of frustration that interferes with clear thinking.
Thanks - I have always prided myself on my quick wit and intellect, (not much going for me in the physical realm), and the brain fog/cognition problems have been the hardest to come to terms with.
I've struggled trying to watch Game of Thrones as there are too many characters to follow, I forget movies I've watched and watched them again still not realising I had watched them, (my good lady wife says why bother watching as I wont know if I have or not!).
This will be the biggest barrier to me getting back to work as I really need my wits about me. Bloody frustrating
Hi, I'm going through a similar thing at the moment. Physically I'm able to do much more than I have in years. I started going swimming at the beginning of the year. I couldn't do much at first, just moving in the water and could only manage every few weeks. But in the past few months I've been going twice a week and the distance I can swim has increased dramatically. Ironically, my walking ability hasn't changed much and I still need my walking frame in town.
Cognitively, though, I still find concentration difficult and like you, remembering or understanding things is so difficult and exhausting.
I'm not sure what's causing this. The only change is that I seem to be heading finally towards the menopause and lack of hormonal ups and downs seems to have made my ME more stable.
I used to teach, which was both physically and mentally demanding and I miss working a lot. But one afternoon spent with my nephew and niece is enough to remind me I'm still nowhere near ready for work.
Sorry to hear the cognition is still crappy, but I am also glad!! Not being nasty but I was getting worried there was something else wrong with me and you have reassured me.
I would have thought that the two things improve together or that the mind would pick up soon after the body.
A bit like you when I think things are going well and I need to be looking back to work something comes up and the brain refuses to work right and I realise I have a way to go yet.
I would much rather my head improved over my body - that way I could enjoy a good book or get some study done instead of re-watching old comedies because they are easy on the head.
Hi this post has resonated with me, although My physical symptoms are still awful too. It just made me reflect back on my job I lost in Feb due to my health. I had a very demanding job where I had to be constantly on alert, know protocols inside out, and be able to respond to emergency procedures at the drop of a hat. Boy did I struggle with stuff so much so that I wondered how Id ever got the job! But when I think back it wasn't always like that it got worse as my ME and Fibro progressed. I constantly compared myself to my peers which destroyed my confidence further. this illness is soul destroying, but i'm pleased your physical symptoms have improved.... can I ask how you achieved this?Last week I asked my pain specialist what caused my fibro. His response made me smile...... This is the question that will win you a Nobel Prize if you work it out!
I am so glad I'm not the only one experiencing this, although not nice for others at least I can content myself that there is nothing more sinister going on.
For me on seeing a Dr Weir he advised:
* 30,000 ius of Vit D over 11 days I think with a maintence dose of 2000 ius - apparently those with ME are deficent in it D, (which had been found out by GP but htey refused to advise or prescribe it!!).
* Omega 3 oils, (I take 4g of that a day)
* Meditation twice a day for 20 mins - struggling with this due to pain.
For myself I am also taking Kelp supplements and pacing - activity with periods of rest. I have a tenancy to "bull on" as we say around here and due to decades of pain and RLS I have just had to be thick and push myself on, (at times I have been like a zombie but mentally and physically but refused to stop).
With ME I could no longer do this but still tried until I could go no more then I would collapse and the cycle would go on.
I found the Canadian Consensus Model a helpful read:
All that said I am doing LOADS more than I had been physically although nowhere near what I used to be able to do - mentally I do very little as although there is improvement if anything is new to me or requires a lot of thought effort I just can't do. If the kids come at me together looking attention I just can't cope and can't even focus on one I have to stop them, collect myself and then try and deal with one at a time.
This leaves me very anxious about work as I have a job that you need to be very alert and responsive in, (I may have to deal with several demanding people/situations at once I dread to think what could happen if I wasn't 'on my game'!!
Thanks that's a great help. I'll have a look at your link posted. The work stress is awful isn't it. I was a midwife which I loved but 13 hour shifts wiped me out. I was always safe in my practice but was constantly making notes so I didn't forget stuff. I miss my mum's dad's and babies so much.
Oh I feel your pain, I'm a nurse too and it really pi$$es me off I can't do my job. Then there is the fear that sneaks in that I'll never be able to do it again
Thank you to all the people who have written in this thread. My husband has been diagnosed with ME and everything in the replies has made things clearer.He has had to give up playing competitive bridge as the lack of concentration was so bad. His partner was getting cross with all the mistakes (strange people bridge players)and he came home feeling more depressed than when he went. He thinks he was told he had ME way back in the 90`s but is it possible it has laid dormant since then and a heart attack in Jan `14 set if off again? We live in France so have sent for his notes to come from the NHS storage place, but its now over 3 weeks so need to chase them. Our Dr. has been treating him for depression and anxiety and now after 6 months the pills appear to have kicked in, so that has helped. One reply says swimming has helped and he was a good swimmer but its the getting in and out of the pool that is the problem- we have plenty of swimming lakes close so maybe we will try that.
Yeah the ME can be got under control, (By some not all) and then set off again by physical or mental stress - not had one but I'd imagine a heart attack would tick both those boxes!
I seen Dr William Weir - the leading light in ME in the UK. He told me if I avoid stressors and triggers I could be OK. Unfortunately I am awaiting an operation which could undo all the progress I've made.
I posted here his recommendations but can't find them so:
* Vitamin D - 30,000 ius for 18 days then a maintenance dose of 2000 ius (the rationale being people with ME are VIt D deficient and need a big dose to get back to normal then maintain it - 30,000 is a big dose but he says taken over that short a period it is safe).
*Omega 3 fish oils, (speaking with a friend who is into his supplements I was advised to take 4gs a day).
* Meditate twice a day for 20 mins, (this will ease the anxiety that comes with this bloody condition - Dr Weir mentioned Transcendental Meditation but any good meditation - Zazen, Transcendental, Mindfulness I'd imagine would do)
*Avoid the stressors, (the things that are known to spark off episodes of ME once controlled such as life stressors, illnesses, operations - now how you avoid all illnesses is beyond me but the life stressors can be minimised)
* Avoid Gluten and Dairy, (I stopped these and within THREE DAYS - my 'irritable bowl' cleared up and my body which ached from my head to my toes got a hell of a lot better - I couldn't make a fist without it hurting)
There were other things but I can't remember them, (bloody brain fog) and will have to wait til my good lady wife returns from work to tell me!
Hope this is of some more help, take care and good luck.
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