Dear Folks,

I really could be off the beaten path, but I had a fall a bit over 5 1/2 years ago. I still have inflammation in my RSD limb.

I just can't get it out of my mind that Inflammation and Infections go together. Does anyone else think that something could of gotten into the Brain Blood Barrier?

I have to think out of the box, because nothing in the box seems to be of help to anyone or myself.

Much Love, Roz

When it comes to this flippin RSD nothing would surprise me. I think that thinking outside the box is a good thing in all situations, especially when it comes to this dreadful monster.

We may never figure it out ourselves, but we may be the ones to come up with the clue that leads to the actual root of this problem. It has happened many times in the past. Regular people with a passion to find the answer actually did find it.

You know when someone is truely in pain because they bury themselves in research tryin to find a way to help their situations. I hope you get some kind of relief soon, and will evr have you in my prayers.

Sending some comfort and hugs

Hi ya Roz!
This sure is an excellent post!! ya know, I really have to say;"probally" since like ya mentioned inflamantion and infections go hand in hand, it's just this needs to be researched more. This is just one crappy disease that no one knows what causes it or how to really treat it. You do have a wonderful question here, wish I could help you say it is something could of gotten into the Brain Blood Barrier?? makes sense to me, anyway!! But, we NEED PROOF!
There are several other local pathologies that can cause this disease: peripheral neuropathies, inflammatory and infectious disorders and vascular disorders also. seems like us as the "Victims"are just grasping at straws and like we are the unheard victims. Oh well?? what are we to do?? I think a lot of us should demand more research into this RSD . seems like these Dr.'s are all knowing, which of course you and I know their not. Yes, there are many who go into remission for years.. but the damage is still there.. well I don't know if I'm making sense here.. it just tic's me off to no end when we go on and on.. day in and day out with pain, swelling, sweating.. yada yada.. the list go's on and one! Love ya Roz and thanks again for the good post. Love, ~Desi

Most advances in medicine have come from outsiders. Doctors tend to be too busy treating patients. There are some doctors who do research and some are quite prolific.

I don't think many advancements have come from patients but, perhaps, this can change in the computer age.

Hello Buckwheat,

I also think you might have a point with this inflammation. I have quite severe allergies to anti-inflammatory medicines, but after a shoulderoperation I tried one of them and was amazed by how well they worked when even oxycodone didnīt take the pain away. Well, the joy lasted about a week and a half before I was allergic to that too... The question is though, an inflammation of what? And is the inflammation a response to something else? It might be that our asking questions might not help ourselves, but protect others from getting this disease in the future.

Hi everyone,

I think there is probably a never ending supply of doctors who prefer research to treating patients who live a life of professional frustration due to inadequate money allocated to research.
NOW, how do we get the recognition that this disease is a massive drain on our health systems that will inspire our governments to release the appropriate funding?

Take care
Tayla

Hi Roz,

I absolutely agree.
I believe "something" is contributing to the continued irritation.
Perhaps it is the blood - brain barrier or just the blood - nerve interface & hence blood - brain.
I just "feel" that there is something causing perpetual irritation and to throw an idea out there - it may be any number of vectors transmitting a pathogen or an invasive protein (prion - like)....eg we don't have lymes here in Australia so perhaps there are other vectors.

This is where I am starting to concentrate my web investigations.

For now, and it could be a waste of time, but I am starting to look in the direction of parasites or other vectors that are known to carry these "protein enemies" that are common throughout the world.

There has to be a common thread and I am prepared to put in the time when I am able on the other hand I could be totally off the track.

I am beginning to wonder which gene or genes are switched on by the irritant to cause our pain pathways and what the irritant is.

I'll avoid diving in at the deep end with the direction so far but I don't think your far off the mark.

Hugs
Auberon