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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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GOOD things happening!! Am I a responder???

Jacque

Senior Member
Messages
424
Location
USA - California
Well you just described my life to a TEE!!! But this is nothing NEW.... I have been like this for years...and yes have the terrible BONE pain too.... I think about suicide more than I care to admit....! But my kids and grandkids are my anchors to this world.

So do tell how you think you managed to escape HELL.... I have been in this pain for yearrrrrrrs but it does seem to be gettin WORSE not better..... I am truly so thrilled for you!!!! Truly! This is a living HELL.... and it is stealing my very soul from me.....

Do you have Lyme??? Sure sounds like it....
 
Messages
93
and what is this off the charts bone pain about? Any doctors have a clue or say anything about all these very nasty hard to endure pains? Dr. K? Dr KM? Cheney?
 

Jacque

Senior Member
Messages
424
Location
USA - California
Dr. K just looks at me and says "interesting".... ugggggh... I think it is Lyme... very normal with Lyme... The spirochetes infect the lining of the bones... All of my bones are very TENDER to the touch... and when I go on any Lyme killing agent my skeleton feels lit on fire.... I cannot tolerate any Lyme killing attempts as I herx too severely!
 

Jacque

Senior Member
Messages
424
Location
USA - California
You are describing my life completely....but I can still be hugged! And I don't want to admit how much I think about suicide....but my kids and grandchildren...keep me here ...for now.... what do you think you did to get out of the pain????