Reflex Sympathetic Dystrophy Support Group

Thank you Craig and Twinkle...I'm going to get stronger ..then I have to have the last two teeth I have (whats left from the bottom of the gums pulled out...So crazy RSD to do with you face...oh and he also said yes to my swollen eyelids and pain in them..That has to do with RSD as well...Can you believe That ..?? Crazy...Pain , discolored, swelling on the face because of injuries from over a year now...insane!!! RSD!!!

Patty..

HI..... Patty..... I understand what you are saying.... I am really glad you found a doctor that agreed with you also.... that really helps you feel better about what is going on....... NOT physically, but mentally... I agree with you about this being crazy..... I am dx'd as in stage 4... and when I tell someone my feet swell all up and are so painful I can not walk without crutches or a wheelchair.... or I can't walk because my hips are so painful, or my hand swells and turn purple.... I can not use them.....or my eyes hurt so bad I have a hard time seeing....and it goes on and on....

Then they say....""""but you look so healthy"""" I could scream.......

But for me the only thing that I have not had is teeth problems like you and others have had..... My teeth hurt...but have not had to have any removed....well at least yet....... And to be honest....I pray that I don't have it...

I wish you the best....... and get feeling better ....

Craig

Post edited by: Fletch2ya, at: 03/15/2011 05:07 PM

((Patty))

Thank goodness you found someone 'in the know'.

It definitely helps one feel a little less crazy with all the goofy symptoms.

Hi Everyone -

I don't want to beat to death the issue of antibiotics and CRPS, so I'll just post this last note and let it go. I just spent about 30 min. searching the medical and medicinal chemistry literature, and I could not find a single instance of antibiotics being used for any type of neuropathic pain, let alone CRPS. This includes using the drugs as prophylaxis to prevent the occurrence of complicating factors. No studies, no Letters to Editors, no research activity or even opinions at all.

The reason I'm trying to make this point is that many pathogens, particularly staph, have become alarmingly resistant to most antibiotics we have. Three years ago I contracted MRSA (the illness many folks get while in a hospital, stands for Methicillin-Resistant Staphylococcus Aureus"); the type I had responds to only 3 antibiotics - down from over 20 several years back.

If people have infections that require antibiotics, then by all means they should use them! I sure did when recovering from MRSA! But I just hope people won't use them purely for prophylaxis.

All we do by giving unneeded antibiotics is train pathogens to become even more resistant, and in a few years, whenever, getting MRSA (and probably a few other staph viruses) could be a death sentence.

Howard

Post edited by: cfthb, at: 03/15/2011 05:36 PM

I have been diagnosed with RSD this summer after having a spinal fusion atthe end of April. I had this surgery due to a work comp injury. My surgeon at Rothman said I have rsd, the city work comp doctor dances around the diagnosis. I have been on neurontin, gabapentin, lyrica and since December elavil, amongst other meds for pain and spasms. The first 3 I suffered every side effect so now the elavil which seems to be helping a bit. Today out of no where my tooth cracked in half. I have good teeth and haven't had a cavity since I was 16(33 now). I was not told this could happen. The only reason I made the connection was bc I google every new weird symptom and rsd together. What should I tell my dentist tomorrow?

Oh my God, I thought it was was only me! I've been experiencing that since 2004. My disability has been questioned to the point of a whisper campaign that almost drove me out of town. My downstairs neighbor threatened to report me to county services for "faking" my disability, despite she fact that she knows I've had surgery, been hospitalized twice for sepsis, been carried out of the building after falls, one that fractured my neck (which she somehow didn't hear even though she lives directly below me and I have hardwood floors.) She literally chased me around the building, WHILE I WAS WEARING A HARD COLLAR, trying to catch me doing something "wrong." And she almost cost my son his job because he works for the village we live in.

I am very interested in the number of people who have had spinal fusions causing RSD. I have always been told my RSD was caused by Botox injections in my neck and shoulders to relieve spasms. But as I go back in my memory, I'm wondering if it was caused by my fusion, an elevated WBC count dating back to the surgery, and the continuing worsening of the DDD.

Tell your dentist that you have RSD and dry mouth syndrome. Even if they don't know about RSD, they at least know about dry mouth syndrome, and there are treatments. Get a product called Oasis. It helps keep your mouth moist in a way water doesn't. Take very good care of your teeth. Get a Water-Pik. It's important that you take care of your gums as well as your teeth because that's how you usually loose them -- but they do break as well. My sister didn't notice the black decay line along her gum lines until her teeth started to break off one by one. She thought it was coffee stain. I can really only suggest constant vigilance, frequent visits to the dentist and good oral hygiene. Good luck.

Post edited by: rosered221, at: 03/16/2011 09:52 AM

I have a question. I have read many references to "remission" in relation to RSD. I have never had any remission, and I wonder what form your remission took. Also, has anyone considered going to someplace like the Mayo Clinic or Johns Hopkins to seek treatment? Is there any point?

A-MEN!

I haven't figured out the site yet. The Amen was to the person who said "I am really glad you found a doctor that agreed with you also.... that really helps you feel better about what is going on." Five years on, and I still haven't found a doctor who really understands this disease, and doctors are as thick on the ground as ticks in this area. The one I thought was my savior, who presented himself as an expert on RSD, has begun to disappoint me as my symptoms get more complicated. If I get that blank look one more time I will commit mayhem. I've got to find someone. Any suggestions: Westchester County, New York City?

HI... My name is Craig... and I am one of the leader here, and we want to welcome you to the group.... if you are having problems getting around here at this site..... please just PM me or any leader and we will try to answer any questions and direct you in the way that might help you.....

Again Welcome..........

Craig

PS.... to PM someone just look under there name on a posting and you will see where it says "Send PM"

Post edited by: Fletch2ya, at: 03/16/2011 10:40 AM