Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
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Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

 
Jane

Jane i am looking at buying a new mattress, do my RSD friends have any suggestions?

Tammy King

Tammy King Does anyone know if RSD can effect eye sight? I have had RSD for about 5 years. Longer I think but was not diagnosed till then. Now I appear to be losing vision in my left eye. My left side is the affected side. I am going to an eye specialist Friday. I am told what I have is usually due to MS. Looking for answers??

Yesterday at 1:05pm · Report
Kevin B Graham
Kevin B Graham
Tammy, the short answer is yes, RSD can affect the eyes and therefor ones eyesight. I have had a decrease in visual acuity and trouble with pressure build up in my left eye (like glaucoma, but intermittent and not bad enough to cause any damage ... just really painful). The decreased acuity is from erosions of my cornea due to excess dryness and ... Read Moreadhesion of the cornea to the eyelid.

One could argue that these problems are secondary effects and that the RSD didn't cause them directly. I don't know if RSD CAN directly attack the eyes, as it can other organs (I have had both heart and GI/GU problems caused by RSD), but I really can't imagine why it couldn't. It really doesn't matter though, the important thing is to get your eyes checked and any problems treated, BEFORE any permanent damage is done. Best of luck to you!
3 hours ago
Nicole Bertrand

Nicole Bertrand
Hi everyone. I'm new here. I have CRPS since September 2007. Originally it was in my left foot. It has spread to different places with flares, but thankfully some of the places have gone into remission. This past March I was diagnosed with POTS, another nervous system disorder. There are so many symptoms w/POTS, but ...the basic symptom is dizziness and nausea upon standing...and well hours after. I am very excited to meet everyone! I will keep all of you in my prayers and I hope you have better days SOON!
OH, I recommend going to Cleveland Clinic...message me wtih more info.
Read More

Alyssa Boreiko

Alyssa Boreiko Anyone have any advice for when you get a flare up and your back knots all to hell. I can't afford to get a massage done, but I am getting to the point where some days I can hardly walk up steps because it hurts so much! I have tried the usual pain killers and icyhot. I have Lidoderm patches, but have not used them yet. Anyone???

Yesterday at 9:03am · Report
Alyssa Boreiko
Alyssa Boreiko
Oh I wish I could afford one! Or afford a hot sexy dude to do it, hehe.
6 hours ago
Kaylee Coovert
Kaylee Coovert
Haha that'd be nice!!!
6 hours ago
Pam

Pam Sharing my journey to help increase awareness ... gentle hugs and prayers for all who walk this walk ... http://www.facebook.com/HappilyHis?v=app_2347471856&ref=profile

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) RSDS Fall Festival Fundraiser
November 21, 2009, 10:00 am to 2:00 pm
First United Methodist Church, 8th and D St, Belmar, New Jersey
Vendors, Raffles, 50/50, Chinese Auction. To Benefit RSDSA.
More information: http://www.rsds.org/1/events/index.html

Source: www.rsds.org
November 21, 2009, 10:00 am to 2:00 pm RSDS Fall Festival Fundraiser First United Methodist Church, 8th and D St, Belmar, New Jersey Vendors, Raffles, 50/50, Chinese Auction. To Benefit RSDSA. If interested in a table ($10.00 per table), please contact Irene.
Patti
Patti
like this
Yesterday at 8:24am
Michelle Medina

Michelle Medina I am going for the Spinal Stimulator tester next month I need to know if it has worked for others with RSD.

Jessica Sponseller

Jessica Sponseller
well iwas hoping for a good day.Again my neck and arm is killing me i cant even stand to swallow my pills and they are tiny ones.Feels like gravity is pushing down on my shoulder and arm and feels like i keep hitting my funny bone.I didnt sleep to well i normally dont and being pregnant rest is the main key.I had a doc...s appt i had to cancel because one i cant drive that well with one good arm and two my husband needs the car.So we are not having a very good day.Read More

Kelli Speichinger

Kelli Speichinger
I am 29 years old I have had RSD since I was 13 yrs old. I have RSD in my Right foot, well from Toes to lower back. Lucky Me it has remained in its original limb of injury. After multiple injuries as a child a drunk driver in 1999 sealed my fate. He progressed my RSD to the point my pain meds began to double and has gr...adually gotten worse. I have tried multiple blocks, numerous meds, several foot surgeries, and am now in the process of getting my Spinal Cord Stimulator after a successful week long trial. I am scared but happy at the thought of the idea of being "pain free"... I am Currently Daily on 4800 mg of Neurontin, 100 micro G Duragesic (every 48 hrs), 75 mg Pristiq, 300mg Ultram XR, 30 mg Immediate Release Morphine, Lidoderm patched, 200 mg Voltaren Gel, 1CC Vitamin B Injections. I have used these meds in the past : Tramadol, Tegretol, Tegretol XR, Lyrica, Cymbalta, and several others. So if you have questions on these meds (side effects or treatments) feel free to ask! I am currently disabled but am engaged to a wonderful man who is so supportive, loving, and my best friend. We are getting married April 17, 2010. He took me on with all this baggage and loves me regardless. We met online and have been together for almost 5 years. Oh by we live in Houston, Texas (Baytown). I would love to find friends locally that have the same disability as me to compare notes, and just have someone relate with me on that level. Feel free to msg me :)Read More

Kathy Robinson
Kathy Robinson
Sorry that you have this horrible Monster of RSD....and Pray your Spinal Cord Stimulator will give you pain free day's. Though I must say I am happy you found such a wonderful man whom Loves you as you are and willing to stand by you
through the Good and the bad.
Yesterday at 8:48am
Jessica Sponseller

Jessica Sponseller
Waiting to go to the diabetic docs here in cheyenne wy to learn about what to do and etc.i had one scheduled for tomorrow but my husband isin the air force and they had to move his schedule around from the last snow storm we got so i am hopeing they get me in late tues or wens.my next shot i postponed kinda wish i didn...t but i would rather enjoy christmas with my family that is visiting and at least a month with the baby.Spasms are getting worse my eye is back to saging now and again.but the only thing i can think of that is causeing it is all the stress and sleepless nights i get dont help me at all.Read More

Chris Miller

Chris Miller
Hi! I have RSD in my upper left extremity and lower left extremity, face; and have occassional mirror effects on the right side as well. Life goes on! The medication that helps me the most is Lyrica. I now take 450 mg. per day, along with a handful of other stuff. Ugh! What helps me the most is "trying" t...o keep active. Do some sort of exercise everyday. Walk at least a little every day. Aqua therapy and massage therapy have proven to be the best modalities for my RSD. I can't work anymore. I suffer depression and anxiety because of the RSD and a host of other contributing factors.Read More

Sun at 1:50pm · Report
Thom
Thom
I too took Lyrica for a while until I read that it caused mutations in male sperm, so any men taking that like mysek would like to father kids some day may want to takr that into consideration. I FEEL FOR CHRIS!!! the depression is horrible it become cyclical with the rsd its self
Sun at 2:05pm
Kevin B Graham
Kevin B Graham
You know Chris and Thom, this may sound a little simplistic, especially since true, "clinical" depression is a potentially dangerous condition that should be treated, but I went through some terrible bouts early on (and still get pretty down at times) and what I found worked surprisingly well was plain old comedy. I started borrowing comedy books ... Read Moreon cd, stand-up routines, videos and dvds of comedy shows (stage comedy, not sitcoms ... although they might be good too) and I just spent every alone moment and a lot of time with my wife and kids listening and laughing at my favorite comedians and "getting to know" new ones. ... It worked wonders for my attitude and I even found it distracted me from the pain (and this was back when I was still being bounced around the medical "marble machine" and had little to no pain control). When MP3 players came out, I got one, ripped comedy CDs and listened to them while undergoing desensitization therapy and deep tissue massage (for the muscle spasms), which were both excruciating ... the comedy helped move my mind away from the pain ... at least enough to get thru it. I can't say for sure it will work for you, and it didn't "cure" me ... but it got me through the worst of times and gave me a mental lift when I needed it most. I've actually sent thank you emails to some of the comedians because I was so grateful for the help I got from their form of "medicine". Give it a try if you haven't ... the only negative side-effect was sore ribs from laughing so much! Be happy, be well!
Mon at 1:31am
Craig Schamburg

Craig Schamburg Having constant pain afte a total knee replacement? I had nerve surgery at Union Memorial in Baltimore and it is a mircale.

Michelle-Chelby Coburn Jones

Michelle-Chelby Coburn Jones i have had full body rsd for 5 years now. it seems i am constantly experiencing some strange new symptom. i now am having issues with the pressure in my eyes. has anyone else had issues with their eyes related to rsd?? please help me find info on possible eye issues due to rsd!

Sun at 6:40am · Report
Kevin B Graham
Kevin B Graham
I've had several eye issues related to my RSD. My journey of pain started almost 11 years ago with a brain injury. The onset of symptoms was immediate and involved, in part, the left half of my face and head. I developed a slight double vision almost immediately (which may be due to the brain injury itself, rather than a secondary effect of the RSD... Read More), but the main thing was a near constant burning and tearing. I noticed that the tear production was directly linked to the amount of pain (not just eye pain) I was having. Also, I get painful spasms of the muscles that move my eyes (worse on the left) and periods of blurriness of my vision (which I think may involve the muscles that change the shape of the lens, for focusing). The glands along the margins of my eyelids began putting out excessive amounts of sebum (which looked gross).

What finally happened, after 4, or 5 years, was that the left eye stopped tearing and became so dry that, my eye-lids stick to the eye so strongly, that I have torn the cornea opening them in the AM. When the RSD spread to the right side of my face the eye on that side suffered the exact same problems and pattern. Now I have to use eye lubricating drops, in both eyes, regularly during the day and a gel before bed. The double vision isn't too bad, but it never went away and I still get muscle spasms and focusing problems (but no pressure, other than when the migraines hit). Here's hoping you'll find a solution to your eye problems and ALL THE REST TOO!!
Mon at 2:37am
Debbie Brinkley
Debbie Brinkley
I have had full body RSD since 2004. Since then, I have been diagnosed with Sleep Apnea, Gloucoma, and Dibetes. The pressure in both eyes just keeps going up. I see my doctor every 3 months. He said that if things were not better in January, we would have to look at other treatment options. I put a drop of Travatan Z in each eye at bedtime.
Mon at 3:11pm
Cari Burg

Cari Burg Hi all. Like you Sydney, I'm totally new to this. I have to say, it's really nice to know I'm not the only one. Most days I fake it. Pretend that I'm fine, but my husband knows. He can see the bitch in me. Thankfully he knows it's not me. Just the pain.
So, that's all. I just thought I'd put my voice out there. May we all have relief soon.

Lori

Lori here is a site i started to keep a candle lit for hope for RSD.. PLEASE LITE A CANDLE AND LET'S KEEP THEM BURNING.. ♥ AND PAIN FREE HUGS http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=RSD

November 7 at 8:17pm · Report
Sylvia Sanchez
Sylvia Sanchez
i love the candles i just lit one thank you lori so very much
7 hours ago