[Sandel]

hello

I usta wonder why WCB's idea of treatment for my CRPS was just physio therapy at first, and I still feel that the too vigorus (rough) massage started the spread for me.. I feel however that while in stage 1 and 2 this disorder has a very good chance of being stopped early on with sensible exercises, and I realy wish that I had walked more in the beginning.

http://www.ejbjs.org/cgi/content/abstract/65/5/642

I think the fact that we all actualy have diffrent underlying syndromes that have all been called RSD (to reduce confusion ) means that we all react difrently to meds, treatments, stimuli, pain, stress ectera. what might help one of us may harm another, I think we need to remind ourselves of that often when posting and tell those that are new so we are all on an even playing ground.

It is important to understand that what we read and report to our friends are in alot of cases just opinions, and we are all welcome to those after all they make us who we are. I like to add a link or two to my posts if I am talking about something contaversy or to support my thoughts and ramblings.. because thats all these are ramblings (haul that brain back to topic )

So now we got that outa the way.. I'm thinkin that Vic's theory on IRI's is pretty much on the ball, but that at a very early stage it also becomes a fine nerve disorder.. at what point of RSD does it become sympatheticly maintained pain (SMP) methinks within the first month yes? for some mabie remember we are all diffrent..

And for how long does it remain SMP for some 6 months for some forever, call it stages? mabie.. but what if it's because of the syndromes, say Sudeck's Atrophy" vs "Post Tramatic Spreading Neuralgia"??

Why do some people have swelling 24/7 when others have atrophy? and just how much diffrence should their treatments be?.. explain generalized spread.

What if the combining of the syndromes to RSD then CRPS here has in fact complicated and retarded the research and treatments not to mention possibly cures?.

Do you know what type RSD/CRPS you are? what's been labeled with your diagnosis and does it match with your symptoms, progression, treatment reactions?.. because it is also possible that the doc just labels with the most familiar term for the area too.

http://neuro.vetmed.ufl.edu/neuro/Jo...es/CPS_Art.htm

I know of several others who's progress of spread has almost matched mine and with similar injury history, thats somewhere to start. and some are research buffs that can probibly dig out old archives for similaritys and information about the "known" syndromes.

mabie we need to analize ourselves, we are a large demographic group, start comparing notes towards a comon goal and map these dystrophys. We have the ability to as the recipients of this disorder to get a unique perspective that no clinical trial or Research study has so far been able to tapp into.

And when researching remember that just because a portion of the artical is outdated or you don't agree with some things in it, dosn't mean there are not valuable insites to be gathered from it, similarly because we don't agree in all matters does not mean there is not still alot to be learned from each and every one of us.

just a thought or two.. and some questions

have a great day my friends

Sandra

[Sandel]

http://www.bmj.com/cgi/content/full/310/6995/1645

And sometimes a good place to start researching the directions of our thoughts is in the references found at the bottom of the articles.

S

[Imahotep]

Perhaps we won't find the cause or a cure here but I'm sure some can be helped just knowing that others have similar experiences and similar things lessen symptoms. Frankly I'm hoping for more and think there's a real possibility.

[allentgamer]

I too believe we are a wealth of information. The members here are from every demographic type, women of all ages, men of all ages, types of treatments, different geographic areas, and the list goes on.

To correlate this wealth of information could help shed light on directions to take research, or turn the lightbulb on for doctors. Maybe we can determine common threads of meds that work nearly the same on everyone.

We need to have compassion for all of our RSD family. We are unique in that we all have been labeled with this monsterous disease, disorder, dystrophy or what ever they finally decide to call it.

It is written things dont change if you always do the same thing you always do. It changes when you decide to do something different from what you always did before. We can make a difference.

[dreambeliever128]

We all have a lot in common with the RSD, even if some have different things in common in trying to get it in remission.

I wonder how it would be if a thread was started where each one of us told how we ended up with RSD, how long we have had it and what we have done to help get better from it. If that was done then we could start seeing the things that are helping the most people and the people the most.

It would be nice if everyone would just read what each one has went through and no one try to put anyone down in anyway and as all said keep in mind that we are all dealing with this even though we are all different.

I do agree with you on the therapy but it just has to be done by PT'ers that know something about RSD. As far as walking, I have walked for the whole time I have had it. I walked and cried for years. My PCP kept encouraging me to keep walking and keep active.

Now I am having trouble with my feet. I did get a treatmill though so I could do some walking on it. I am doing my best to keep active to the best point that I can.

As far as the research, you are right, some is outdated but in those outdated pieces as you said you can find some things that aren't outdated and can help us get better.

I have Dr. Hooshmand's book, and I know there are people who don't like him. I have never been to him but to me it was the best investment I ever made. Some of it might be outdated but I don't think a lot of it is from what I have read.

We can all stick together and learn from each other or go our different ways and learn nothing from each other.

Allen is right also about turning the light bulb on for the Drs. I believe there are Drs. out there that will listen to us when we tell them what we feel is going on and let us put in our two cents worth. They just have to be found by each one of us.


In Hooshmand's book he says that the window is 3 to 7 months. In a way I don't believe that because if it was why do blocks help people in later stages of the RSD. I know some on here do believe it but it's just my opinion when I say I don't.

Anyway, good thread.

Ada

[tayla4me]

Thanks Sandel for an interesting thread.
I think what I have come to learn is that there are as many differences as there are similarities in this disease and this is what makes it so damn difficult to get a universal opinion on cause, treatment and prognosis.
I think that sometimes there is confusion when RSD/CRPS may be said to be the result of a nerve injury when in fact it appears that the last 30 years or so of research have established it a disease of part the nervous system and only CRPS TYPE 2 will show any identifiable nerve injury.

I think what really needs to be established before we can hope for a definitive answer to both diagnosis and treatment is to find why this disease occurs in SOME people but not others?
What is the trigger that causes one person to suffer a paper cut and develop RSD/CRPS yet others with major injuries just go on to get completely better iwithin the expected time frame.

I think that before I developed this disease I would have said I was DEFINITELY NOT the sort of person who would succumb to anything so debilitating. I simply had no time in my life to be sick so why did I get it when people have had injuries like mine and got better

I am content however that I am in good hands with my treatment as my team travel the world attending conferences that help them keep them at the forefront but having said that, even though my team get excellent results with their methods of treatment they will still admit they do NOT know what sets off this awful chain of events in our sympathetic /autonomic nervous system in SOME people and all the terrible consequences of this to our vascular and immune responses.

It will be a wonderful day when we are able to get the answers we so deserve.
Regards Tayla