RSD Conference in Tampa This last weekend, Mom and I traveled the four hour trip over to Tampa for the first RSD HOPE Conference. Keith Orsini, who started the website www.rsdhope.org and has had full body RSD (even in his eyes!) for 35 years, was the speaker and organizer of the conference. He is also organizing the first state -wide RSD conference so people can become more aware of this disease. I highly recommend you going to this website because it is very informative and gives lots of facts and should answer alot of your questions.
One of the handouts he had was the McGill Pain Index which shows that RSD patients are NOT exaggerating on how much pain they are in. This is good to compare our pain level to other types of diseases and problems you can relate to. For example, the highest pain score is 50 and a toothache scores a 19, cancer pain and chronic back pain score at 25, childbirth scores around 35 amputation of a limb scores a 39 and RSD pain scores a 41! We found this pain scale very interesting because it is hard to go into a doctor's office and they ask you to score your pain level from a 1-10 when actually every bodies pain tolerance is different. So, when I say my pain level is a 6 - your 6 could be much worse pain than mine.
Here are some interesting side effects from RSD that we discussed during the meeting:severe dry mouth, losing hair (no...not bald!..just when I wash it, more comes out than most people), insomnia, short-term memory loss, irritability (Mom can contest to that!! ;o) and depression. I suffer from all of these....
Another topic was the Spinal Cord Stimulator (SCS) that perked my interest because I was scheduled to get one. Keith did bring up some conflicting points that made me rethink on having the SPS implated. He mentioned that it is a very invasive procedure to have and can possibly lead to complications. Some of the key points he brought up were, the lead cords may break and they would have to go back in, but the most important point that concerns me is every time you enter the body through surgery, you have a greater risk of getting RSD in that area. So, that is why I am getting a second opinion from a doctor who is treating a lady who is in our area support group. Her husband is also doing a documentary on RSD, which may make it to a film festival, hopefully by next year ....(which we will be included in..autographs later..and please don't give out our address to the paparazzi....okay, go ahead...we need some company!! lol)
We also met a lot of very friendly people who understand what I am going through and got alot of email addresses to keep in contact with.
Mom and I then ventured off to our hotel and on the way home we had some therapy (OUTLET RETAIL STORES!!). All in all, this turned out to be a great trip and we're very glad we went!Until next time.....