PhysiciansforPatients - Created by physicians. Made for Patients.

Shay

I just read the article after reading Sabino's message on your comment wall.  Is there any kind of organized effort going on to fight this, or is it solely fought one individual at a time?

6 months ago

Doug

Hello, I'm new to this site and still finding my way around.  Before getting this disease, like most of you I never heard of it.  Many doctors don't even know what it is.  At this point, the RSD I've borrowed (I don't say it's "My RSD") isn't near as bad as many others who have it over their whole body.  I try to keep it at bay by not doing things to aggravate it.  In my case, it stems from nerve damage caused by the surgery to repair the broken bones.  When the pain should have been getting better over time, it got worse.  After 18 months, I now know what triggers the painful swelling and avoid doing those things that bring it on like standing or walking,  However, I still maintain and exercise regimen to include use of an elliptical machine where  I can control and prevent exacerbations which cause the RSD swelling. 

RSD swelling is DANGEROUS.  It causes blood to pool and clot.  The clots went through my heart and into my lungs and nearly killed me.  It's my goal to bring awareness about this dreaded side-effect to RSD sufferers while at the same time bringing RSD awareness to the rest of the world. If I have to bear myself publicly to do it...so be it.  I've got nothing to hide. I thought by bringing my military healthcare difficulties to light I could draw attention to RSD, but I think I've failed--this time.  I've sent the article to every news agency and politician I could think of and got ZERO response. 

I'm still working the reserve military angle because the problems their have got to be fixed and people need to be held accountable for their actions.  By not providing me with military orders for seven months, I was not given the healthcare I needed which I firmly believe contributed to the complications that are not only painful, but almost cost me my life.  

One thing everyone can do to help is very simple.  At the end of the news article, there is a place to comment on just like Sabino did.  I need you to comment there as well, and if possible get your family and friends to also.  With enough comments, this could help me petition Congress to take action.  I can't imagine how many troops are coming back right now and experiencing the same problems I had and who are also suffering from RSD.   The military and the VA don't have a rating for RSD and that results in no retirement or VA benefits if they are discharged.  A rating of 30% means retirement in the military.  Migraine headaches can get a 50% rating.  RSD gets 0%.

6 months ago

Debbie

Hi Doug, I went to your article and left a response and I hope everyone
does. We have to fight this and every time a person steps up to bat for
us it's the least all of us can do is write in support for awareness.
Can you get the rsdsa web site Jim Broatch to give you any pointers or
help on this? He has a wealth of knowledge and may have info to help. I
wish you luck on this and hope you get many to go to your link http://www.theusreport.com/the-us-report/usaf-reservist-battles-injury-and-government-insurance-syste.html   and comment at the end......Take care...DebbieXX

6 months ago

Doug

I've been in touch with Jim B. and he has also posted the link on his site.

6 months ago

Helen

Dear Doug,

We have the same problems in the Canadian military. We have several vets with CRPS who have been discharged and denied medical help. CRPS is not recognized.

Best of luck with your fight.

We can post your link if you like

Just contact me.

Helen

www.rsdcanada.org/parc

 

6 months ago

Sabino

60% of injured troops that come back from the war developed RSD/CRPS or one in every four with TBI and PTSD SUFFER ALSO OF RSD/CRPS 

You can read an article about Chronic Pain on Amputated Veterans in my website: web.me.com/sabino11/rsd 

VA has a rating about RSD, however, they called it CRPS or just chronic pain what happens is that  the way VA rates someone is by can or can not do instead of RSD, also they rate the side effects of RSD like Major Depression, Incontinence, scars for surgery of DCS, Osteoporosis, etc. Hope this helps, if you need better information RSDS.org has plenty of info about VA rating and RSD/CRPS. Sabino 

6 months ago

Doug

Unfortunately Sabino, there is no VA rating for RSD or CRPS.  I was rated 0% by the military because it doesn't exist in the VA rating tables. http://www.warms.vba.va.gov/bookc.html#n

They will rate for symptoms such as atrophy, range of motion, but not the actual disease.  In my case, they only rated the paralysis in my foot and leg from nerve damage.  That is why I'm appealing. If it was only the paralysis, I could wear an orthotic shoe and live a normal life.  I have the orthotic shoe but can't wear it..or any shoe on my left foot due to pain and swelling.

I'm in frequent contact with Jim Broatch and the RSD.ORG site. Unfortunately, RSD/CRPS rating criteria doesn't exist in the VA.  I'm working to get that changed.

6 months ago

Sabino

Doug, I'm sorry my friend. I just don't have words to express my sympathy for the way you have been treated. Its not fair, if you need my assistance for anything count with me Sir. I really don't know how Steve did it to get me a good rating after I fought them for many years, but he finally did it and I'm grateful to him for it. By the way if there are other veterans who need assistance with their claims give Steve DeBoever a call he just got a job working for a federal agency that helps veterans in different tasks and he also works with the VA. His phone number is 530 680-0461 or s******@prodigy.net

Doug, what kind of bike do you have? my two sons have each a green color 750 Kawasaki, every time that take it for a ride my heart beats faster than ever! Take care, Sabino 

6 months ago

Tori

Hello - I am new to this site but this has been very interesting reading.  I suffer from RSD in my right arm/side.  My primary care doctor has been through an Air Force Base.  That will be changing because my husband is divorcing me and I will lose my insurance.  What I did want to express though is that I feel for your frustrations.  I have a very hard time with the doctors understanding what I have and an even harder time with them calling it RSD.  It is a very hard process and when the doctors change, I have to start all over again.  Keep your fight going - someone will hear you!!!

6 months ago

acasey

2 months ago