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In search of advice.... - CFS and Fibro Ideals [entries|archive|friends|userinfo]
chronic fatigue & fibromyalgia - a holistic touch

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In search of advice.... [Oct. 30th, 2011|09:38 pm]
chronic fatigue & fibromyalgia - a holistic touch


Hi everyone

I'm pretty (100%) sure that this sort of thing has been covered elsewhere but I'm here to plead for any and all info and advice you good people would be kind enough to share. I am going to ask again firstly because it might breed different advice for everyone to benefit from. Secondly, because A) being at the PC too long gives me headaches so my ability to search is limited by that B) attempts to retain/collate information have been a struggle as a result of this and fatigue/brain fog.

I apologise for any repetition and ask you all just to bare with me this evening.

I was discharged from my regular appointments recently and freely admitted to worrying about that. Those worries have been made worse this weekend by hitting a bit of a nasty slump that's left me feeling in rather a state. I am especially worried about the impact it may have on my training if I can't keep things under control and my ability to do that is really being put to the test this week.

The more I think about my symptoms and treatment, the more concerned I become. Despite the intervention I still experience -

brain fog

difficulty controling my body temp

jelly legs
lack of motivation

low blood pressure
low grade fever
muddled speech
muscle pain
muscle weakness
panic attacks

runny nose
sore throat
swollen and painful glands
unrefreshing sleep

It's a pretty standard list for many sufferers, I know!

The areas I've bolded are the areas I've been particularly looking for advice surrounding. Although, if anyone wants to share any other tips/suggestions they're all welcome, believe me!

I just don't feel the information I was given on eating, graded exercise, nutrition, pacing, rest, routine, sleep and stress have helped beyond what I could have found myself online or in books (again, feel free to recommend!).

The more I think about it the more prescriptive (but not in a good way) it feels and being discharged after not even 6 sessions seems far too soon. It has all left me feeling rather put off the idea of going back for more help, too. One example might be that when I mentioned going gluten/wheat free it was treated very dismissively as my coeliac's test had come back negative, despite the information I've found to say it may well help even if the test isn't positive, as I'd "still need to do everything else, too". This was in the very early stages of treatment, too. Not the best response when you're feeling incredibly broken down and willing to try anything, no? I am now wondering if other things were not brought up because I did not know to ask and the health professional had similarly dismissed them. It feels a bit like going back to the start, really.

So, yes...suggestions welcome in all forms, please. I am willing to do whatever I can if it will help. Thank you in advance to anyone who does take the time to reply. I really do appreciate it more than I can say.

Take care all

(Deleted comment)
[User Picture]From: femaelstrom
2011-10-31 11:04 pm (UTC)
It surprised me that she was so quick to dismiss the suggestion given how many people with CFS I've known say it helps.

Are wheat and dairy the only things you react to. What else did you try cutting out? I think I am definitely going to have to give wheat and dairy free weeks a go - seperately to begin with - and see if it makes a difference.
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(Deleted comment)
[User Picture]From: femaelstrom
2011-11-01 07:04 pm (UTC)
I've been trying to map out a plan for excluding things etc today. Will not be a quick process by the looks of it if I want to do it right! I'll keep you all posted :) Thank you again for all this! x
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