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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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To broach the topic...or say nothing...

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I went with immune defiency today.

Yesterday I told a guy I know why I was unable to work. I just said, I have autoimmune type stuff and my immune system is hyper-active. Which causes me to become unable to do much of anything, once I do too much.

The example I used was the walk I took to the laundry mat, where we talked (8 minutes each way and doing my laundry). I told him I would not be able to do anything like that again for 3 days. He just said "ah man" with empathy, he really got it!

I basically told the truth. My immune system is hyper-active, similar to autoimmunity but without any specific organ being targeted.

I haven't had a cold or flu in 15-20 years or more, and my worst symptoms are flu-like, because my immune system is constantly over-active. Physical activity just increases my immune system activation, increasing my symptoms and causing PEM.
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Frustrating isn't it. My issues have been bacterial for a very long time. When my ME is under control bacterial infections appear to become a thing.

So this time it seems to be the time of my bladder and prostate. Never fucking ends. Frustrating to be feeling so much better too but still be plagued by these issues. Mind you my neutrophils continue to drop so it's maybe not surprising I've got these infections?
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Weird thing for me is I get sick easily and when I do it goes on for weeks on end. I've never had the hyper activity and lack of sickness. Although did get sick a reasonable amount before ME maybe that just got worse with age...
 

SnappingTurtle

Senior Member
Messages
257
Location
GA, USA
yes- important to point out we don't charge back up to full capacity. So its only partially been recharged.

Much like actual equipment I own which never had a correctly working battery..



this is a great idea, you could include Where To Donate For Research, on the card as well!
Yes! Awesome. If there is space, I might just include those ME/CFS comics.