Well things haven't been going well with my last Dr. to say the least. I called in because I was in so much pain (and that is what they say to do) and I got the generic answer that I should go in for another block; not sure why the 6th one would work? So the next day mom and I went into pick up my prescriptions and she had taken away one of my pain meds and decreased all of the others; without an explanation! I couldn't believe a Dr. could have such bad bed side manner.
So on Thursday I will be seeing a new Dr. who is supposedly very good. He was referred to me by someone in the RSD group.
Other than that not much has been going on besides the fact that the RSD has spread to my right arm (between my wrist and elbow) and yes it is hurting bad now haha......It is still hard everyday to wake up and not do much it has almost been 7 months since I stopped working but it feels like yesterday. It is just really hard to see a future; will I be that person living with their parents when they are 35?? Hope not...haha
Guess we'll have to see what the new Dr. has to say.
I'll let you know.
Thanks again for all the support!
~Rebecca~
Tuesday, April 29, 2008
Thursday, April 17, 2008
RSD Conference in Tampa
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.....
~Rebecca~
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.....
~Rebecca~
April 17, 2008
First, I would like to thank everyone for their support in me for writing this blog and for your emails and comments!
For an update:
I am actually going to see another doctor for a second opinion on May 5th regarding the Spinal Cord Stimulator. It just worries me because it is a big surgery and I recently found out alot more information on it. I will have more info on the next blog regarding the RSD gathering in Tampa.
Unfortunately, the RSD has spread up into both knees more aggressively since the last blog. So now, I have RSD from my feet to my knees in both legs. For the past few weeks, Mom has been wheeling me around on my walker and we finally broke down and ordered a wheelchair (which will be here this afternoon!). We decided to go the wheelchair route because everytime I go out anywhere or even from my room to the bathroom, with the walker, I almost fall over due to having so much unbearable pain. I thought the walker was a big deal when I had to get that, but now having to get a wheelchair is even harder to imagine! Also, with Mom's fibromyalgia and her helping me around is getting harder for her and is putting more strain on her arms.
So, that's what has been going on here lately.
Please feel free to email me if you have any questions regarding RSD.
~Rebecca~
For an update:
I am actually going to see another doctor for a second opinion on May 5th regarding the Spinal Cord Stimulator. It just worries me because it is a big surgery and I recently found out alot more information on it. I will have more info on the next blog regarding the RSD gathering in Tampa.
Unfortunately, the RSD has spread up into both knees more aggressively since the last blog. So now, I have RSD from my feet to my knees in both legs. For the past few weeks, Mom has been wheeling me around on my walker and we finally broke down and ordered a wheelchair (which will be here this afternoon!). We decided to go the wheelchair route because everytime I go out anywhere or even from my room to the bathroom, with the walker, I almost fall over due to having so much unbearable pain. I thought the walker was a big deal when I had to get that, but now having to get a wheelchair is even harder to imagine! Also, with Mom's fibromyalgia and her helping me around is getting harder for her and is putting more strain on her arms.
So, that's what has been going on here lately.
Please feel free to email me if you have any questions regarding RSD.
~Rebecca~
Sunday, April 6, 2008
Hello Everyone!
I know I haven't done a good job of keeping in touch with everyone, so I figured a blog would be the best way to do it. I never thought I would have a blog and I also never thought that "my life would be taken away from me at age 24". By life I mean having to give up my great career in NYC, which Iworked so hard for. On Nov.5,2007, my mom came up to help the move go smoothly. We got on the plane to FL which is where I currently live and yes Nikko and Pedro came too. Having to go on disability (was approved for long-term which is great) and move back in with your parents is a huge pill to swallow!
How did I get to this point (for the people who may not know). I ended up having a stress fracture on my lower left leg, which was casted. My leg would get so swollen in the cast, I would call the Dr. and he basically put me up as a "whiner" and when it came off my paraneal nerve was blocked so I couldn't (and still can't ) move my foot up and down. Slowly it developed into Reflex Sympathetic Dystrophy (RSD). It is an unbearable painful disorder which can spread. In my case it did and I now currently have RSD on outsides of my lower legs up to my knees. I have to use a walker and wear braces to hold my feet up because I have drop feet and trip if didn't have them.
I found a pretty good team of Dr.'s I have a pain management dr. and also a psychiatrist. RSD promotes depression and with the loss of everything and not too much to look forward to, I have become very depressed. However, I've currently tested for the spinal cord stimulator, it basically makes your legs feel a tingle sensation and it has a remote so I can control how much stimulation I get and where in the legs. This process took away about 60% of the pain (still taking all of my pills). So right now we are waiting to get approval to do the permanent implant.
Well I think that is a good start.
Thanks for everyone's support.
~Rebecca~
How did I get to this point (for the people who may not know). I ended up having a stress fracture on my lower left leg, which was casted. My leg would get so swollen in the cast, I would call the Dr. and he basically put me up as a "whiner" and when it came off my paraneal nerve was blocked so I couldn't (and still can't ) move my foot up and down. Slowly it developed into Reflex Sympathetic Dystrophy (RSD). It is an unbearable painful disorder which can spread. In my case it did and I now currently have RSD on outsides of my lower legs up to my knees. I have to use a walker and wear braces to hold my feet up because I have drop feet and trip if didn't have them.
I found a pretty good team of Dr.'s I have a pain management dr. and also a psychiatrist. RSD promotes depression and with the loss of everything and not too much to look forward to, I have become very depressed. However, I've currently tested for the spinal cord stimulator, it basically makes your legs feel a tingle sensation and it has a remote so I can control how much stimulation I get and where in the legs. This process took away about 60% of the pain (still taking all of my pills). So right now we are waiting to get approval to do the permanent implant.
Well I think that is a good start.
Thanks for everyone's support.
~Rebecca~
Some Interesting Sites on RSD
This is one of the best websites-I have it on the what is RSD or CRPS (Chronic regioanal pain syndrome) terms are use unchangeable.
http://www.rsds.org/2/what_is_rsd_crps/index.html
I found this poem, which is all too true~
http://www.aboutrsd.com/chronic-pain-poem.htm
http://www.rsds.org/2/what_is_rsd_crps/index.html
I found this poem, which is all too true~
http://www.aboutrsd.com/chronic-pain-poem.htm
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