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    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.

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what would you do

Messages
39
Hi Everyone
Three years ago i was a high level road race cyclist, who would incorporate running and other sports
into my daily life, like alot of people on here i got a virus, fever and severe fatigue,
numerous blood test showed nothing, MRI brain Scan like wise, obviously depression kicked in, very bad depression,
Over the three year period i have managed to come off depression medication, but from day one my symptoms
have never changed i get severe head pressure pain to the sides of my head and middle part of my head, never in the front.
i also get pain in my neck glands these are my only symptoms they last maybe 1hr a day at different times of the day, people question weather i have CFS, but i know it is because everytime i try to exercise,48 hours later the head pressure pain and neck gland pain return and are more severe, i would like some advice as to going
private to see someone or trying a different treatment, i have seen smaill inprovments through cold showers
twice a day, and acupuncture
 

Dechi

Senior Member
Messages
1,454
I don't know where you're from but it might be worth looking into Dr John Chia, in California.
 
Messages
39
if you try the cold showers, please keep us updated. There was a thread here on the cold stress:

http://forums.phoenixrising.me/inde...ng-fatigue-in-chronic-fatigue-syndrome.43010/
Hi
Yes i get more success from cold showers then any other treatment, for an example, if i feel the pain/ head pressure
pain in neck glands, soon as i get a cold shower lasting 3/4 mins, i can last almost the full day without any pain at all.
i dont know what effect it has on my body but i know 100% it works every single time
 

Seven7

Seven
Messages
3,444
Location
USA
Hmm might be the vasoconstriction from cold water, see of you feel worst on dilators ( sun, alcohol,... you can google) and do great on vassocontriction stuff. If so ( like me) I lead a somewhat normal life on vassocotnriction drug ( midodrine+ florinef). This might be a great clue for you!!!!
 

pattismith

Senior Member
Messages
3,931
Hi
Yes i get more success from cold showers then any other treatment, for an example, if i feel the pain/ head pressure
pain in neck glands, soon as i get a cold shower lasting 3/4 mins, i can last almost the full day without any pain at all.
i dont know what effect it has on my body but i know 100% it works every single time

seems great, I will try to try it!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Welcome to the Forum, would be great if you did not have this dreaded misunderstood illness!

I have been riding bicycles for over 30 years now, still do, even though I am moderately impacted. I had the 2 day in a row exercise test done, on a bicycle, back in 2010. I only stopped riding my bike back in 2009 (or was it 2008?) , after suffering a big crash, exacerbation of symptoms!

Not sure why I am not severe like happens to many who continue to push themselves, but I do rest quit a bit as well, sleep 8 to 12 hours a night, take oxygen with my cPAP machine.

GG f

PS Feel free to PM me if I don't respond here, been on this site since 2009, you can find parts of my story all over the place :)
 

wastwater

Senior Member
Messages
1,271
Location
uk
Maybe you are overdoing it still and need rest,I like cycling and considered getting an electric bike