Another thing related:
I cannot stand when you talk to doctors or shrinks and they have the human impulse to compare your pain or disease so they can understand what it is you are going though. Part of the problem w/ that is that no doctor, shrink or even gf I have ever met can truly appreciate and empathize w/ the level of pain and specific type we do experience.
Because what is going on here is breaking hearts and souls; given we are talking about a very intimate and intense type of pain, which is self-traumatizing (no impetus needed we have a built in mechanism to hurt ourselves even if we don't want to). Mine has been there for 15yrs and has always been there. I wish it would go away after some days but it never does, just gets worse. and sometimes better for shorter time periods. But I will never stop trying to make it better or slowing it. But, this has become an uphill battle in ever sense. So for me when someone says, we don't know of it killing anyone and don't think it can, I say- Well it will probably exacerbate every single underlying predisposition I have and slowly wither my soul and body (which it already has done). Frankly, I think the researchers still know next to nothing about what they are talking about and simply grasping for answers as we all do, for some relief.
Don't get me wrong, some things help, but I have never encountered anything that really wks and I have tried (allergy shots, niacin, supplements, exercise, icing, PT, psychotropics...) The only thing I have not done is hormonal and IVIg which I may or may not get depending on some blood tests. The best I can do is reduce symptoms 20-40% but that's what I can do, so I do it.
As far as gfs or relationships go I feel they are dammed at this pt for me and I have been in one for 7yrs and see it's end coming.
Perhaps we should all hang out and share our fucked up stories to air it out.. That would be therapeutic!
Keep fighting one of the only fight's worth fighting guys! We can do this together!