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It hasn't gone away

....It was a 3-week "remission", apparently.

But it's okay. I am trying to be positive though am disillusioned again today. Three weeks is the best there's been yet. I can only hope another one of these remissions will come and maybe that one will be the same -or longer? Dare I hope?

Busy weekend and family visiting. I felt just fine. I thought -wow if I can cope with all of this and not feel rough and be okay even though I didn't get the full 8 hours sleep a couple of nights, yet can wake up fresh as a daisy and feel okay....then surely I have to be getting better?

Uh-oh....it doesn't work that way. Monday my visitor went home. Got 9 hours sleep Sunday night. Monday night I slept well and soundly, and woke up feeling like I wanted more sleep. Then the eye twinges started, and a terrible leaden-legs weariness, and wanting to cry again over nothing, and heart palpitations, and not able to focus or something (for want of a better word) on anything I was interested in or like dearly. Like half of me isn't present.

It seems this is PEM. It's def. "malaise" and not just "I had a busy weekend and I need an early night".

Rollercoaster ride -eh? I am disappointed in the return of symptoms. Many of the same symptoms which came suddenly on day one -March 27th. Especially as I had been feeling quite good over this last 3 weeks, 99.99% my normal self. And had been doing a lot of physical things too which didn't hurt me!
It seems to make no sense that one weekend of a very pleasant family visit can crash me when 3 weeks of working on firewood in hot weather did me no harm!

Sorry everyone because I know many have it tons worse than I do. But hope is dashed -yet again.

This isn't a pity/self pity thing as much as a feeling I can't escape whatever the heck this nasty thing is. I guess you all feel that. And the surreal situation is it makes you believe you HAVE got out of its clutches, for weeks before it comes back at you again.

Comments

Are you familiar with the idea of immune cycles? Look it up on Wikipedia. When I read your blog post, came to mind because of the three weeks then feeling bad. The theory of immune cycles is controversial and this is from cancer research not CFS. However, cycles are a week long and come in groups of up to four weeks. I have seen the same pattern in my own CFS, although I have not got it into remission now for about seven years. But still see the same cycle of symptoms, two or three weeks feeling one way, then a few weeks feeling another way, back-and-forth. Sometimes I think I am having PEM until I do the math and realize I am in a 28 day immune cycle as described in the Wikipedia article. Anyway, your experience reminds me of the immunee cycle theory. We certainly do seem to be in the clutches of a whacked up immune system.
 
Awww..... I am sorry it came back! I was hoping you were truly climbing out of it. I am glad that you updated us, as I have been thinking of you and hoping for you. I don't see it as self-pity at all, to feel disappointed and to share the feelings and the reality of what is happening, with us! I will hope that what you said , that remissions could come again and last longer, for you, and come sooner. Definitely let us know! :)
 
Thanks dear Shoshana .... and Kurt -thank you for letting me know about "immune cycles" because I'd never heard of that. I'll read up on it.
I have a neurologist appt. in 54 days' time re: the head/eye pain thing. My bet is nothing will show on an MRI and he won't have a clue what's going on....we will see anyway.

Thanks for thinking of me Shoshana. Blessings :)
 
Please (tryto) remember to let us know how that appointment goes. I have similar eye/head pains, too. I care about yours, even if it is totally different from mine, ;) and any ideas for me, about it, will be welcome as well. :)
 
Yes of course I will let you know about the appointment Shoshana.
Do you get that pain only over one eye? I do. In my case it's mild, but I hate it particularly because it brings in all the other stuff with it. When the eye doesn't ache, I don't feel unwell in other ways too. Yes I'll let you know. Kind thoughts to you. :)

(edit) Are you negative for intracranial pressure/temporal artery issues/sinus infection/glaucoma?
 
I cannot remember enough or think clearly enough, to reply, right now, but thank you for thinking of me, and I am thinking of you. :)
 
Try to drift, and dream Shoshana. Listen to some beautiful music if you are able. Thoughts will come back when it is the right time. Kindest wishes :)
 
Nope....haha! Thanks for asking me dear Runner5. I am having a relapse. It will pass, I do know. Kind thoughts and take care :)
 

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