Whilst being overwhelmed yet again with fatigue, I started to reread any information about dealing with fatigue. It seems to me that the gps and consultant seem to have no real idea of how the patients feel or how to cope with these bad days. I was particularly incensed by the dismissive tone that a senior haematology nurse used when writing an article on 'How to Combat Fatigue.' It was all theory and no real understanding. The best suggestion she could come up with was to take a walk!
Any way I found a brief note on a communication from the uk CLLSA which mentions CLL fatigue and the effect of cytokines 1L-6 and 1L-10. Can anyone tell me more about these chemicals and can they be reduced or are there side effects when they are altered? They are not mentioned in 'Essential Haemotology' (Hoffbrand and Pettitt) but as my edition is 1995, perhaps no-one had discovered them then.
Any information would be highly welcome, Thanks
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catmad1
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Hi Catmad! I am here for my hubby. I, personally, have had the Chronic Fatigue Syndrome for since I was 37. (68 now). Cytokines have been talked about endlessly by one of the researchers but there is no way, as of yet, to calm the cytokines. CLL is an Blood problem but the immune system is affected too. So, there is the overlap of these two illnesses. I read Dr Weirda of MDAnderson talk about the use of ADD (Attention Deficent Distorder) med and they did not seem to be useful. I have tried them years ago with my problem and they were not useful to me either.
So, sorry that I don’t have something that could help you! (And me)
If you look for the box labeled "Related Posts" on this page (upper right column on a computer screen- way below on mobile devices) you will see several posts that talk about fatigue.
If you type "fatigue" into the "Search CLL Support Association" search oval at the far upper right you will get the 1748 previous posts on the topic.
So there is lots of information already in the archives.
Thanks, I did in fact find the related posts once I had completed my 'moan'. The topics were most relevant and gave so much more information than I have ever gathered from consultations with both gps (who know very little about any form of leukaemia) and consultants or their registrars, who don,t have time to talk, that it is left to the patients to gather and disseminate any information. Thanks to you all.
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