It's been a while since I have written- just taking a little break- As my RSD gets worse I just find it so hard to cope and sometimes hearing how bad everyone is doing just makes me feel sadder. But on the other hand I love this forum and the nice people I have met here
Im am so frustrated with the lack of research in this area! I am sick of hearing it as a "Mystery Disease" -Its not such a mystery with so many people affected!
We need for the public to be more aware and I dont know how we can do that? RSD should be as familar as MS or ALS-!

Sorry to be venting but I am just so frustrated! My friend who also has RSD really bad in her mouth now said her mouth felt like it was being stuck with 1000pins!
Just inhumane.....
I am reading the "secret" but I am finding it hard to use with the pain issue!

Thanks as usual for listening

Debbie

Hey Deb.

I have been away for a while too. Or, at least it has seemed that way, since what I have been doing is lurking and not posting. But, I do understand what you mean about sometimes needing a break to get yourself feeling better, and how easy it is to get overwhelmed by reading all of the posts all of the time. I think that is perfectly normal. Lord knows it happens to me (LOL, not that I am a prime example of "normal") and to other folks too (who might be more "normal" than I am, although the verdict is still out on that...ROFL).

Seriously though, I am glad to see that you are back posting. I had noticed that even though your post here has had several folks reading it, no one had yet responded to you. I know how bad that can make you feel when you have been away for a while, and no one seems to have noticed...let alone care that you are back. So..I wanted to MAKE SURE that you knew that I DID notice, and I AM GLAD that you are back!

I agree totally with you about RSD needing to have the same recognition as MS or ALS. Thing is, it seems that will not happen until someone Famous gets this. Someone that doesn't come off as crackers, that is. It makes me feel bad to say that, because it is almost like we have to hope that someone will come down and suffer with this awful thing. You know?

Anyway...I am going to end this here before I get it too much longer. LOL, that is VERY easy for me to do...and then I wind up writing novels for posts...ones that very few folks want or can sit down and read. But I DID want to make sure to tell you that I am very, VERY Glad that you are back!

((Hugs))
Jose

I wanted to say hi and welcome back to both of you. I have wondered for awile where everyone was. Of course, like you I stayed off for over a year due to having bad times and Bill getting worse. I concentrated on spending more time with him before I lost him.

Debbie, like you, I am always asking why RSD is not as noticeable to the public as MS and so many others. I get so angry when I see what RSD people go through. It's like the care we get is like a ball bouncing off of 4 walls it's going everywhere. So many different things being done for each and all of us. It's like they don't do enough research to find things that really do work for RSD. I'm thinking RSD patients must be the best guinnea pigs in the country. LOL

Jose, your post isn't as long as usual. I am so glad to see you back. I loved reading your post and having you around. I have missed you both.
Ada

Hi!

I think everyone should ask their doctor(s) their opinions on why RSD/CRPS does not get a wider press, particularly, of course, their pain dr. I don't know what good this would do, but a better understanding might help.

Nina

Hey debs

great to hear from you...

I have no idea why more people don't know about this...

can't think of what I meant to say

loads of love and hugs

Froggsyxxxxxxxxxxxxxxx

Hello-

I thought this might be a good spot to post something that happened to us tonight. I was taking my daughter for her PT appointment and there was a student PT in the clinic that wanted to meet my daughter and see her foot. (We think we should charge for the show! as her color changes every other minute) It seems that in her University class last night, they spent most of their time learning about CRPS/RSD. She was asking a ton of questions and wants to go back to let her class know. I might go and talk to them. I post this here because I think this 'mystery disease' is starting to get some attention as a true and serious ailment, atleast I got a bit of encouragement tonight--and I needed it too.

It is good to have you back--

Thanks for all of your replies- That is good to hear that PT students are learning about RSD ... My PCP doesnt know anything about it but she will refer me to anyone i want to see,,,

I guess we do have to wait for someone famous to come out and talk about it!

Debbie

Hi.

I subscribe to Dish Satellite Network because it has three university or research channels: University of Calif; University of Washington and The Research Channel, all of which have pain, nerve injury and related programming.

I noted three recent programs in which RSD was mentioned. Pain in Women: Biology of Pain (UCTV); The Bane of Pain is Mainly in the Brain (UCTV) and, Symposium on Low Back Pain: Concepts of Pain (UWTV): In two of them the words RSD or CRPS appeared on a graphic but were not discussed. The third: The Bane of Pain... described the BP experiment I wrote about in my reply to Cumene's thread Need Advice:

The presenter in that program was the Chair of the Dept of Anatomy at the University of Calif at San Francisco, and what he said was mind boggling to me. He described RSD as resulting from a nerve injury, showing B&W photo of a person with an extremely hairy right arm and spoke of a minor ulnar nerve injury.

Then later he talked about causing ischemia (blockage of arterial blood flow) by using a blood pressure (BP) cuff and leaving the pressure above systolic for 30 minutes. (He explained he could only describe it because "They won't let me hurt people anymore"). Ischemia produces hypoxia (oxygen deprivation) and dystrophy (nutrient deprivation), which, in the BP experiment mediates cyanosis and allodynia.

I thought about this program for a long time, wondering if he had ever seen an RSD patient, and if he had, why he hadn't noted both cyanosis AND allodynia. I finally concluded that he had not. All he had was that B&W photo in which the patient had an extremely hairy arm in contrast with the other arm; a clear sign that the patient was still in the first (inflammatory) stage of the disease, it would most likely have been hairless in the later, chronic (cyanotic) stage.

Too bad. Here was a guy who knew that ischemia causes allodynia and talked very knowledgeably about exactly how it does; if he had the opportunity to see a real live patient in the chronic stage, he might have concluded that the ischemia explained every sign and symptom of this disease. What a powerful voice for ischemia reperfusion injury he might have been.

Even as I write this reply I know what I'm going to do: Dr Allan Neusbaum at the UCSF campus is going to get a letter from me. I didn't plan to write this; in fact it never entered my mind until one minute ago.

Anyway, med schools do talk about RSD today. The problem, of course, is that they teach that it is the result of a nerve injury. Hey, hasn't anyone pointed out to them that CRPS-I is the diagnosis when no nerve injury exists?

The contradictions in explanations of RSD are endless. How can it be a nerve injury and not a nerve injury at the same time? I hadn't planned on saying this either, but its a question that deserves an answer. Calling Dr Schwartzmann...Vic

I too subscribe to Dish and have seen most of the UWTV programs mentioned, I was just wondering if you have seen the programing on the FDA approval process. I have been (well to be frank) PO'd at the whole thing since seeing it. I have had contempt for the Medical process in the US for years, but it was interesting to hear what was said in regards to payments made to the FDA and the speaker, leaving things to your own opinion.

I had an interesting appt with the Neurologist yesterday regarding HBOT. He told me that if my soon to be new pain clinic will sign there name on the dotted line, he will help me try to get ins coverage for the HBOT as a secondary. Pray here for me because the other RSD treatments are not only scarey for me because of back injuries from other issues but frankly I feel in my gut that HBOT is all around a better thought to try first before all the others.

My 2 cents on boards, yes sometimes when you are not feeling up to snuff, and you have passed researching and coping mechanisms, it izs sometimes better to stay offboard for a few days. I think it helps keep your system from getting overwraught with not only pain but everyone elses pain. I have not been on much for this reason.

Anyways, Hugs

Rain

This is great to hear - I really think the best way to get docs to take it seriously it to train it into them. Med students and other healing students hunger for "real life" patients, and if they can meet and listen to people with RSD at this point in their training, they are wide open and passionate about learning how to help. I think the RSDSA is even trying to create a training video for just this purpose.