I Think Everyone May Be Interested In The Article!

[anna]

http://www.rsds.org/pdfsall/Systemic-Complications-of-CRPS.pdf

[anna]

It looks to me that some in the medical profession are doing their damnedest to bundle together all the conditions that as yet have no clear explanation. I am a little concerned as to why there seems to be a need link all these conditions something just seems rather odd! Sorry but I fear my scepticism maybe on full blast today!!

[issie]

It's interesting that so many of us have these issues. Those with EDS, CFS, FMS, MCAS, Mito Issues, OI, Neuropathy, interesting that ALL of this is touched on here. They are connecting it to the immune system and nerve transmission. I've said for a long time (as have others) if they find a cure for CFS then POTS won't be too far behind. I think CFS will find it's cure before us because it's got a lot more research being done on it. But, it does seem that there is a connection to all these things. Maybe, it's like the big Elephant in the room that people are only seeing a portion of and trying to define that individual part --when as a whole ---it's all connected. Maybe, there will be one underlying factor.

I found it interesting that they said this has a genetic component, they think, and one could be born with it. We are finding that to be true with some forms of EDS. I suspect that since there are so many things in my family, there probably is a genetic component and maybe epigenetics at play here. But, getting down to the root "cause" of it hasn't happened yet. (I'm still working on it though.)

My father fits nearly everything talked about in this article. He and I are so much alike in our presentations and what we have going on with us. My sister and her kids have similar but different issues. My mom probably has MCAS and my maternal grandmom we think had EDS, MCAS and POTS. So, is it genetic? Is it some inflammatory, immune dysfunction that maybe there can be something done about? My father has horrible neuropathy --not connected to diabetes (although he has diabetes). He has the horrible pain and headaches and also AS (which is thought to be autoimmune and also can be inherited).

I agree, Anna ---I think everyone here will get something from this article.

A little scary on the connection with the left frontal lobe and memory. That's where my meningioma is. And yeah, I have more issues on my right side and I do have the brain fog and memory problems that it talks about. Don't really want brain surgery at the moment though. LOL!

Thanks for posting this.

Issie

[Kellysavedbygrace]

Great find. Interesting. Many of the cytokines listed are mast cell mediators and CRPS fits MCAS in terms of how it presents clinically. Wondering if the two aren't the same? Hmmm.

[ramakentesh]

interesting read and angle.

[davecom]

Very well researched article... But is it tying too many symptoms together?

[issie]

Very well researched article... But is it tying too many symptoms together?

My husband asks this same question regarding POTS. He feels that maybe we are lumping everything into one category and there may be multiple things occurring. And we are just writing it all off and saying it's POTS. But, I guess for now --what other choices do we have. I've separated all my doctors out and had individual issues looked into and it still comes back to POTS and the autonomic dysfunction causing the other organ problems and issues. So, we get the SYNDROME thing attached not only to POTS - but, also this Regional Pain Syndrome thing - that does sound very much like us POTS people.

Issie

[anna]

That is exactly what I thought, and it is the point which I have a problem with, when you lump everything you are not sure about into one big syndrome then you will never get to the bottom of what is really doing on.