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First real cold since I got ME/CFS (6 years) and all symptoms temporarily disappeared

leokitten

Senior Member
Messages
1,542
Location
U.S.
I’ve just recovered from the first proper cold I’ve ever gotten since I fell ill with ME/CFS six years ago. The first 3-4 years I never once felt even a wisp of a cold/flu coming on, and the last couple years maybe twice I felt under the weather like a cold was coming on but it never did. The ME immune activation or general disease process seems to prevent it. Prior to ME, I would get a cold every year or two, just average like everyone really.

Not sure why I got a proper and good cold now that lasted over a week, but I’m happy I did because after the cold turned the corner and started improving I experienced a complete disappearance of all my ME symptoms.

I mean ME completely and utterly gone. If it weren’t for the cold symptoms still affecting me I would’ve felt totally amazing, but even with it I distinctly felt that I was ME free and otherwise healthy again.

Not even during my best days on the keto diet do I ever feel even close to like the ME is completely gone, just some significant symptom improvements.

My cold symptoms were really strong and debilitating on their own during the first half of the cold, so I couldn’t tell you if the ME symptoms went away during that time.

Given what I experienced for the first time and can say for certain, I would hazard a guess that the reason the ME temporarily goes away, at least in my case, is because as the immune system finishes killing the cold virus it sends strong signals to reduce activation and ramp back down. These signals also seem to turn off the chronic immune activation that appears to be major (or the only) driver of ME.

For those interested in metabolic dysfunction changes, I even did a one day experiment during this time where I ate a lot of carbs on purpose. Normally this would cause major PEM to the point that the next couple days I would be totally bedridden. It did nothing!
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
Yeah, I have rarely caught a cold after 15 years, nearly 16 year (just realizine I am closer to 16 years :( ) of this crap! Did you ever get night sweats? Mine went away around 6 or 7 years.

GG
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
Yeah, I have rarely caught a cold after 15 years, nearly 16 year (just realizine I am closer to 16 years :( ) of this crap! Did you ever get night sweats? Mine went away around 6 or 7 years.

I had major night sweats in the beginning, slowly went away during first couple years and then after only rarely.
 

TreePerson

Senior Member
Messages
292
Location
U.K.
I had a very rare cold over Christmas - probably only the 4th in 25 years. My ME symptoms improved considerably during the first 5 days (basically muscles - energy metabolism worked a lot better, I could do quite a lot more I had less orthostatic intolerance) but returned as the cold abated. I then had the PEM type experience.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
@leokitten, It's been an additional week now and I was wondering if your ME/CFS symptoms are still gone?

My symptoms only slowly creeped back, and not all of them at the same time. I still feel generally better than I did before the cold and some of my ME symptoms have not returned yet, but there are some confounding factors as I haven’t been working and have been pacing really well recently, especially during the cold I naturally had to rest a lot.

After the cold was well over the first ME symptoms to come back were the strong brain awake/wired but tired feeling which make it impossible to sleep at a regular time, the early night gut irritation and related itching attacks, and my lower leg and foot aches and pains like they aren’t getting enough blood. If I remember correctly I think those were the first ones to relapse.
 
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