• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Symptoms Cycle

Christopher

Senior Member
Messages
576
Location
Pennsylvania
I'm curious to see other people's experiences with any cyclicality you might see with your symptoms. If anyone's done a symptoms journal or anything similar, have you noticed a pattern with the severity of your symptoms, or is it just random and dependent upon recent activity?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
in the begining after a couple of months after the initial viral infections i use to plod along at about 95% (feel abit brain fogged)for a few days then i would have a few nights where i would get alot of pain down my lower legs, especially at night and this interrupted my sleep alot, my sleep wasnt the best even without the leg pain, then i would crash and sleep all the time for about 2-3 daysI actually enjoyed these times because i could sleep well drug free and for some reason had no aches and pains), then i would sort of recover back to 95% and slowly deterioate again in this sort of cycle pattern. This kept happening for a year or 2 then the cycle just stopped and i started function all the time at alot lower level maybe 80-85% with these 1-3 day crashes of just sleeping. i got to the stage of functioning at about 65% with lots of sleep problems, aches and pains etc until i started antivirals famvir approx 2 years ago, now feeling alot better, probably functioning in that 80% range. brain fog isnt as bad these days, sleep well with medication and im able to work full time but knackered at the end of the week actually probably after 2 days but im able to soldier through and rest up on my days off.

the way it initially started was strange, i was able to predict when i was going to crash, after those few nights of leg pains i would tell my wife im sleeping for the next couple of days, dont expect much from me till i wake up. it seemed strange, now i cant predict anything lol, but im functioning alot better with good sleep treatment with the av's.

cheers!!!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Christopher

My opinion, based upon years of observation (and something like 5 years keeping a journal, three or four volumes worth), is that most symptoms are not random. We may not always see what is the cause, but it is there. Sometimes I can't identify particular triggers. For some symptoms that recur I have never found a trigger. Most triggers come under the category of chemicals (including foods and toxins) or actions (doing too much). Infections are a more obvious issue, and I wont bother discussing that. Activity that causes static muscle stress (bad posture etc) can also cause problems, as this stresses muscle over many hours and days and it not always easy to spot until symptoms appear. Now I do know that there are phases or clusters of symptoms in CFS (and ME?) that get switched on and off at different times. I have discussed this at length from time to time. There are nearly always triggers for this. I wouldn't call them cycles however.

The only thing that I have that is cyclical is sleep problems. In some patients cyclical hormone changes might also induce symptom changes.

Bye
Alex