[HeatherAnne]

Hey All

I kinda just popped into the conversation without any real intro... SO here it is!!!

My name is Heather from the US. I am 20 years old and have had RSD in my right leg for almost 7 years now. Ups and downs throughout the years but have managed to get myself off of most medications other than the new drug Lyrica (which works pretty well) and the occasional narcotic for VERY bad days. ---I have had most every treatment at least once but after most of them failed and with years of me on and off crutches I decided to either let the RSD control me or let ME control the RSD! i have found that fitness and a POSITIVE attitude as well as a TENS unit has gotten me far. As well as Lyrica which does help a lot and like i said I do take a painkiller if things get really bad...


Talk to you all real soon!
-Heather

[Sandel]

Hello and welcome to this group Heather, there are a great bunch of folks here at neurotalk.
I love your attitude and I am sure we can learn lots from you, we are heavy on research here and loaded with support and kindness, so post away your thoughts and strengths.. your feeling and rants.. your questions and answers.. we are all here for each other and you are very welcome here.

soft hugs.
sandra

[Jomar]

Welcome to the forum Heather.

What caused your RSD at such a young age?

[TonyG]

Hi HeatherAnne,I have had RSD for about 8 years now and tried all kinds of medication,about 2 years ago i came across a new consultant dealing in RSD and he put me on a course of Phenytoin infushions (750mm) every 3 weeks .I find that i do get reduced pain lvls for about 8 to 10 days and i was wondering if you or any other RSDs have tried this and if so what results did you get.Thanks TonyG

[HeatherAnne]

I was running track and my right knee started hurting back in 8th grade. From there they tried to figure out what it was and finally a year later they did surgery and removed some tissue in my knee. This didn't help and so my parents searched for answers and finally about a year after surgery we went to a pediatric neurologist which gave me a diagnosis of CRPS/ RSD... Since the pain has gone through my entire right leg.

On top of RSD I do have a bulging disc in my back (unrelated) caused from dancing for so many years as well as syst (spelling?) in my spinal cord which they are contemplating whether or not that actually caused my rsd but they really have no clue. It seems like a guessing game to me!

Have a great day all!!

-Heather

TONY: No I have never tried that before. I actually had never heard of it either.

[dreambeliever128]

I used a tens unit for years and I loved it. They do help with the pain.

We have talked about RSD medical care being a guessing game. I think it has to be or they wouldn't be trying so many meds and everything else under the sun to help with it. This forum seems to be a testimonal of that fact.

It's interesting to see how many different things are being done for RSD and yet none seem to be the answer.

I'm sorry that you ended up with RSD so young. I feel bad for the younger generation with it. It's hard on any of us but the way I look at it I don't have to live as long with it. LOL

I'm 55 and my story is too long. I ended up with it in 98 though from Thoracic Outlet Surgery. What amazes me about this disease or illness or syndrome is how many ways people can end up with it.

Welcome to the forum and I do hope things continue to be positive for you. You are right that is the best way to deal with it. I told my dr. in 2000 that I was going to turn my job into getting well but that's just a job with RSD that don't get finished. LOL

Have a great day.
Ada

[HeatherAnne]

Originally Posted by dreambeliever128

I'm sorry that you ended up with RSD so young. I feel bad for the younger generation with it. It's hard on any of us but the way I look at it I don't have to live as long with it. LOL

aww thanks, but I definitely wouldn't be the person I am today, so I can't say that i completely regret getting rsd although most days I am not too fond of having it :icon_wink:

I must say I just got the new version of EMPI's tens unit. It works so much better plus its digital so I can track my pain patterns and what I start and end at each TENS session for pain. Any one else try the new one?

[allentgamer]

Welcome to the RSD family!



I started with it in my right leg and foot also, seems like there is a bunch of us with it in the lower right side. Sorry to hear you have it at soooo young.

I have a tens unit and never used it, cause they never showed me how. I tried it on my leg, and it drove me through the roof! It was enough so that I just threw in a drawer and never looked at it again.

It is nice to see all the new members, and all with the can do attitudes!

CYA soon!