I have probably had elements of ME/CFS for years. A GP first suggested it 3 years ago but as I have a lung condition which makes me prone to lung infections ( Bronchiectasis), it got confused with that. Anyway got final diagnosis of ME in November. Read so much about it but what a learning curve!!
I know having ME/CFS makes you very prone to “ boom and bust” by wondered if anyone gets this. When I feel I have some energy and abit like my old self and happy, albeit temporary, I feel shaky. Almost like the feeling of happiness is a causing chemical changes, not nice but weird. I don’t know but maybe my body is just on alert for happy behaviour?”
Sounds abit vague but maybe someone has experienced it?
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winter2013
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Have a think about adrenaline release. I think I am right in saying it is the bodies last way of providing energy when everything else is exhausted. My body turns on adrenaline really easily, I think because I have got so used to pushing my body beyond its limits. I will describe how it is for me. I will be pacing well and feeling tired then I do a bit too much and feel great as if I have energy at last and my mood is lifted. This is the release of the adrenaline and hopefully I notice and stop. I can carry on and use the great bit of energy but there is a price to pay later. A big adrenaline release makes me feel great but also shaky, makes me clumsy, cold hands and feet and upsets my digestion. I was really pleased with myself for working all this out over the years and then found out it was all known about ... this site has more info hfme.org/adrenalinesurgetip...
Ps thanks SO much again as have just reread. Like reading about me and is so helpful. It can feel so isolating as if it’s your fault! Trying to download link but it won’t download at moment, will keep on trying though. X
Wow Calliepet! Have read document and it makes SO much sense, can relate totally and utterly to it. Even the feeling cold. When I’ve been overdoing it and all wired , I wake in night with an almost manic need for heat and only thing that helps is huddling for ages by a fan heater with hot air blowing on me. Thank you. The knowledge is great but hard bit is doing something with it. Encouraging to know you seem to be succeeding though! X
I can remember reading that piece for the first time, it was amazing seeing it in print, it made everything I was experiencing seem validated. Yes manic need for heat is a great explanation. I use a small electric heat pad. They are meant for back pain but when I am in bed and am suddenly freezing it is great to just lean down and grab an instant heat source.
Have you read the Lapp Campbill site about finding your baseline and pacing ?treatcfsfm.org/readmore-Dr.... Pacing is the only thing that really works for me but I find it really hard to get right, life keeps getting in the way. I struggle to remember that sometimes feeling better = adrenaline release = you are doing worse and feeling rubbish = no adrenaline = congratulations you are pacing properly.
To tell you the truth I forgotten why I think this site gives a good explanation of finding your baseline etc. my memory is pretty non-existent. I hope it is relevant for you. Let me know what you think it might jog my memory without me having to read it all again
Am reading it now. It’s similar to the sheets given to me by ME OT but goes into a lot more detail which is great. Also more details as to how you may feel. 😊
Oh dear. That does sound like me too. Lately I've been feeling better and doing more and thinking I don't have ME. But this throws me into doubt.
It's so weird to read this as I was thinking similar today. I know its wrong but I ruminate about the past and realised I've always needed more rest than most people. This made me anxious about my future. The thought that even if I feel better, it will be short lived. I won't be able to sustain activity. I worry I cannot do a 9 to 5 job, with its hours of commuting, 5 days a week for years on end. I'm so worried about my future.
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Two important studies link ME/CFS to changes in the gut microbiome
Struggling despite no formal diagnosis 
ME research of note: Contrasting ME versus CFS or 'CFS/ME' by Leonard A. Jason et al
What was your experience at the doctor on diagnosis?