If it's the one I saw today in Canada it's put on by pfifer (or somesuch) we could always try to enlist their aid (lyrica?) and or to get a drug company behind us.. The way that one works the drug company gets the pump and the disease familiarity gets out there a little more each time.

Be well,
Sandra

Sandra!!



That is a great idea!
I bet they would go for that. We need to write emails to them on this. They would go for it because it would sell their new drug, and also create a need.

A need because more doctors would be pressed to acknowledge RSD as a real disorder, with real meds to treat it.

IMHO, the pharmaceutical companies make waayyy too much money off us already to want to change anything. There is NO profit in curing a disease, only in staving off the effects.

As things stand now, most pain patients will, out of sheer desperation, try anything to help us feel better. The dr.s aren't allowed to treat us properly, or we'd be given much more medicine for the pain than we do now. We get fed all the hype about addiction, to the point folks are scared to use what they need to manage their daily lives.

People who truly have a pain syndrome do not become addicted to pain meds. You have to actually get high and enjoy the drugs for that to happen. I don't know about the rest of you, but I haven't found any medicine that makes the pain totally disappear and gets me high on top of it all. If you have, please let me know a.s.a.p.... I need some!

of course we are scared of the drugs. when your told all the time that you are a drug addict everyday, its hard not to worry. I have never gotten high off of the meds, but I sure did get sick going off of the methadone. I didn't crave it but i thought i was going to die. My drs have never lied to me. they always have said that they couldn't grt rid of the pain, only try to help me deal with it. I take oxycodone 15mg. 8 tads a day and just started lamitical.
I don 't know what else to do. These pills don't even manage the pain. But the drug companies will still be getting my money. I have no other choices.

Sue K.

Have I missed something? RSDSA.org is a national advocate for patients and according to their website uses 93% of funding for program services which includes research. I just joined today and they also provide free membership.
It looks like they are trying to do all the right things and the doctors affliated with them I have heard mentioned on these boards a lot.
They also have posters that can be printed to raise local awareness...I've just started researching what they have available but hoping to find some brochures to leave around town. Got to start somewhere
Jeanne

RSDA ORG I do not trust I am dealing with WC and I can say this I see the IC all over this site I like RSD HOPE ! just my thoughts plus a doc from clevland is part of thier team and he believes in no pain no gain wich is WRONG!

Sandra,
Good idea. Pfizer makes lyrica (and neurontin which has gone generic) and their stock (as most) is really down now. Maybe they would consider this.
Linmarie

Hi, I just sent this to three of my news stations. I went onto their websites and used all pertinent emails shown. There are two others however even their websites stink, so maybe a letter later.

Here is the letter I sent off:

PLEASE HELP SPREAD THE WORD:

Reflex Sympathetic Dystrophy, aka Complex Regional Pain Syndrome, affects many Americans, however, it is still unknown throughout the community. The medical field is becoming more aware of this painful disorder but we still need your help. I have posted a link to a video that gives a short Public Service Announcement about this disorder. Please, if you can find it in your hearts, and schedules, please play this video and help spread the word. People with this disorder who receive an early diagnosis and aggressive treatment have a much better chance at control, remission, and even a complete reversal.

http://www.youtube.com/watch?v=S1Qn5rus4Gg
http://www.forgrace.org/women/in/pain/C11/
www.rsds.org
www.rsdhope.org

Thank you for your attention to this painful disorder and to my email,

Christine Leiendecker
Date of Onset: 12/2006
Date of Diagnosis: 04/2007
(I personally have a better chance for control, remission, or reversal because of an early diagnosis and want others to also.)

Flipnout I'm wondering who your talking baout from Cleveland cause that is where I was at for the pain clinic and met with a few docs there and they have a very aggresive approach. I couldn't make it through the full week of rehab cause of my pain and they give no relief in form of meds other the anti depressents. They feel though whole drug issue.
We were talking about this issue about getting the word out on the pn forum. Sorry I'm jumping around. I have pn but they want it treated like rsd which confuses me. Anyhow I know some of them have written letters to Oprah so on. I think until a major star or someone known gets this issue its hard to get the word out but we can't give up I guess. As for the drug companies they make so much money its unreal. I payed when I was on Lyrica vs Neurontin more then a hundred dollars a moonth difference. It seems they don't care about getting the word out or more research cause that may solve the problem so there would be less need for the drug. I have yet to go to a doc even when I just go for a 2or 3 opinion to not come out with a new drug to try. As for support groups I have been looking into them too. If you also try putting in google or other search engine rsd support groups and then your state I found different that are not listed on the rsd websites. Just an idea.

Ok seems a few years back the company that owned Gabipentin/Neurontin before Pfizer usta promote them for medical conditions not proven or tested for sufficiantly.. (glaucoma etc) consequently people got hurt and there are still large lawsuites afloat for the origional company.. Pfizer bought the Co and cleaned up the tarnished image some and have set about creating a drug called pregablin/lyrica that has alot of the same properties but works on a broader range of symptoms.

In May of 2007 Pregablin/Lyrica was aproved by the FDA as the only medication so far that has been aproved for Fibromialgia... Seems to me they are not going to want to do comercials now, nor are any companys unless they have specifically been aproved for treatment of RSD/CRPS by the FDA.
hmm how do we find out if they are heading in this direction I wonder..

Now I ho'ed and hum'ed over whether to post this or not then decided that if this were the case then we need to focus more on getting the word out there individualy as well.. and wow Christine what a great idea, and it maters not the organisation just how well they are prepared for the influx of curiouse questions and queirys.. Also lets pick a month and everyone blitz their papers with a day in the life storys of our lives since RSD.. Lets wake up the world to this demon and hope that we can save another life from it.

Hugz,
Sandra