I was diagnosed with RSD about 2 1/2 years ago. It has spread from my ankle to become “full body” or "global."
I have many things that have changed about me and my body. Even my RSD symptoms. I am hoping someone can tell me if they have experienced the same or something similar.
I have noticed that my initial symptoms like the redness and discoloration and the really bad pain in my foot changed for a while and wasn’t my primary complaint anymore but that I just hurt everywhere. I have recently become active again and now the discoloration, shiny skin, and pain is back, and it is worse. My question is: is it normal for your symptoms to move and to not have your primary spot be the problem spot eventually?
My other concern is that my hearing has become really bad since I was diagnosed with RSD. I can’t hear so many things. Like my cellphone, people speaking, my TV has to be all the way up ( I am not even middle age yet) to the point that people complain. I was in my docs office ( he refuses to entertain the idea that RSD has affected my hearing) and I guess he finally got sick of repeating himself because he sent me for a hearing test. I have been told I have moderate hearing loss and will need hearing aides for both ears. The audiologist says hearing loss is caused by nerve damage and that any disease “that damages the peripheral nerves like diabetes can cause this damage.” I would think that would at least make it a possibility. The doctor still refuses to say it is related says he can’t find “conclusive” evidence that RSD causes hearing loss. I am having a brain scan next week but I am sure it will be normal so my question is : has anyone suffered hearing loss since being diagnoses with this disease. Does anyone know of any published literature, or any study being done?
If my hearing is deteriorating at this rate my fear is that soon I will be deaf.
I appreciate and welcome all help.
Thank you.
Dear Gaile:
I, too, started with an ankle injury - which then spread globally. I see many similarities in our stories - however - I’ve had RSD now for 8 or 9 years (I’ve stopped counting).
Right now, I’m actually typing as I walk on my treadmill. It’s quite a set up I’ve devised - necessity apparently IS the Mother of Invention!
For several years, I avoided any and all pain meds - until I could no longer function without their help. Exercise still remains my very first line of defense…but I cannot bear to exercise without the help of the pain meds.
Hell, I can barely get out of bed w/o them!
I am extremely aware of the fact that I can quickly become tolerant to these drugs…so I am very, very careful not to allow that to happen. Unfortunately, my days and nights have somehow become mixed up - I’ve heard this complaint from many fellow RSDers. I also insist on keeping my sense of humor intact. 
I find it invaluable - especially when I am confronted with people (even some doctors) who know so very little about our condition, that it leads them to say some ignorant and even cruel things…
For instance, early on (before I was definitively diagnosed) I had a vascular surgeon actually tell me, “Oh, I don’t think you have RSD. Anyways - if you did - you may as well just go out back and TAKE A BULLET!” (true story)
Now, though, I am very fortunate to be surrounded by some quite wonderful docs. Although, the general public doesn’t always understand why I cannot show up for parties, etc. All they know is that I present so well - surely to goodness I can’t be in as much pain as all that! I certainly don’t want sympathy - I just don’t want to feel like a creep for not being able to show up to their events as I once was able to.
How can you explain to someone what it’s like to spend 3 or 4 hours just to get out of bed? Oh. How about explaining what its like to take a shower - with a million tiny “knives” attacking your body (re: the shower stream). Hey! How about trying to simply get dressed - with each and every piece of clothing that touches my allodynic skin making me wince with pain?
I may look good - but I often feel quite bad…I KNOW there was a GREAT joke to that effect (but it had an “R” rating, I’m afraid!
OK. Enough whining - I’d much rather laugh!!
If anyow would care to email me directly,
my address is:
fancinancy@webtv.net
It’s ALWAYS nice to make a new friend - especially ones who understand!
Sincerly,
Nancy (aka Annabelle)
-----Original Message-----
From: gaile
Sent: Sunday, June 10, 2007 6:01 PM
To: fancinancy@webtv.net
Subject: [rsds] RSD and Hearing Loss
My 12 year old daughter has just been released from physical therapy treatment for RSD. We were fortunated to catch it in the very early phases, and she is now able to walk without a crutch or boot and her PT thinks she should be able to resume a pretty normal life from here on out. Here is the kicker, however: a little over a week ago, my daughter lost her hearing. We took her to her pediatrician who referred her to an ENT, and the ENT said he felt she was faking the hearing loss. She is NOT faking. She is unable to hear anything in her left ear and only hears whispers if we yell into her right ear. She will sit in her room with the tv on mute reading the closed captions (this is a child who hates to read!). It is very frustrating, and I am not sure where to turn. I suppose a neurologist is my next plan of attack. This is just incredibly debilitating. It began as a ringing in her ear and quickly progressed to profound hearing loss. My hope, however, is that it is temporary. I have learned over the years that it is always better to pursue things quickly when it comes to this child - there never seems to be an easy answer.