Reflex Sympathetic Dystrophy (RSD)

[friendsfan]

im a 25 year old and ive just been diagnosed with CRPS 1 in my left leg. ive started on gabapentin, physio, accunpucture and a TENS machine...is this normal procedure?

[KELLYP]

i will tell you the best theing i can say, stay on top of EVERYTHING, do not do anything you do not feel comfortable with and mainly get on the internet and search, then search some more. there are many pages to look at. you might be able to find people in your area to help you further. i was told by my neurologist that if you are just recently diagnoised you have 6 months to try to get the problem turned around. i do not know how that works, i was not diagnoised soon enough. ther are two sites on the internet besides this one that i look at alot, rsdhope.com and rsdsupport.com. really really do not give up. what yuo are taking and going through is "normal" for some of us but not all. the two main things they we all have in common is the chronic pain and the title "rsd/crps." i see a neurologist to help me with mine. i live in tucson arizona and i am not sure what you have available where you live. are you single? do you have family near you? wish you the best of luck, feel free to ask any questions you have. bye, kelly

[jewels]

Have you found a doctor that does blocks, because our doctor immediately started blocks

[icesk8er]

There are so many ways to go about treating RSD/CRPS. Most doctors begin with Sympathetic Blocks, and physical theraphy and then move on from there and try to see what you respond best to. I would also suggest a pain doctor who treats RSD/CRPS. Good luck!

[perceypor]

I have had RSD now for 20 years. I am full body - however, my Right Upper Quad is the worse area. Make sure you have the correct doctors. Where are you located? I have a great team, and finally have found some things that works. If you are interested, you can email me, I don't know how often I will come back to this site. [moderator note: e-mail address has been removed]

God Bless You

[Squirt]

I just joined the group. I was diagnosed in 1988 with RSD. I am sorry for butting in.

[Ngara]

I was also just diagnosed. I'm taking 900 mg. of the same medicine, seeing an OT 2x's a wk, wearing a tens and having my first ganglion nerve block in a few days....

my crsp started in my little finger but has progressed up my arm and into my neck.

I'm trying to stay positive and I hope you are too-

[crabby0713]

hi. my name is maria. i am new to this forum, so bare w/ me. i was diagnosed w. rsd 5 months ago and am having a heck of a time. i've been through numerous stellate ganglion blocks ( i was averaging about 2x's a week for about 4 months), doing therapy 3x's a week, taking heavy pain meds, and neurontin as well (2700 mg a day) it's been very difficult. my condition finally deteriorated to the point that i needed to have a neurostimulator implanted in my spinal cord. this disorder is no joke!!!
i'm looking to chat w. people that are basically in the same boat as me.
it sounds like you are receiving all th right treatments as i did. what i've learned is that it's really important to keep up your physical activites when possible. (and hard as it may be)
it sounds like you are as new to this condition as i am.
i really hope to hear back from people since it is helpful to talk about it.
keep your chin up and know that you are NOT alone!!!!

[Ngara]

Hi Maria. I'm Kelly. I'm 6 months post my original injury but I was just diagnosed in late Sept. My symptoms started 5 months ago also. The Dr. who diagnosed me couldn't treat me so I went without until just two weeks ago. It was my OT who found the speacilist for me! I felt like I had been dropped in black hole-- no one wanted to deal with me and my general practioner even said to me, "you should be happy - you are losing weight & you just need a psychiatrist." I lost 401lbs in two months and couldn't stop passing out-- yeah I'm happy.

I'm very nervous about the gan. block-- needles.... I go in on Monday. My new Dr. (who I do like) mentioned that I may have to go up to 2700 mg and that he would put a neurostim implant in if necessary did not mention how often the blocks should be done or could be done.... but it is comforting to hear someone else talk about the same things that I have heard. sounds a little less scary, I guess. I'm still working and taking care of my children and the house --- but it is soooo hard and I cry myself to sleep everynight and barely sleep at all because of the sensation/pain in my arm. My husband just moved out of our bed because every time he rolls over it makes my arm "wake-up" and then I have to start all over... and then it's 5 am and time to get up for work and oh God, the shower is so painful!

I have met two real people who are in remission right now! One of them has been in remission 6 years and the other 14 years! One of them had 3 blocks and the other just 1. WE CAN BE TWO MORE!!!

[crabby0713]

hey kelly!!! thanks for responding!!!!
you know it's truly amazing how insenstive and unproffesional some of these physicans can be!!! it's hard enough that you are going through the sheer agony and hell associated w/ this disorder, but to be insulted!! that's just unacceptable.
i'm glad you are seeing a new doc. i could recommend mine. i'm in pa, outside of philly.
the blocks are uncomfortable. make sure you get a mild sedative, that's what i did.......
what they do is go into your neck alittle above your collar bone. a needle is inserted about 1/2 inch into your neck and shot the 4 blocks in. you have to remain completely still while this is being done. due to the nature of the area there are alot that could go wrong. not to scare you but one of my blocks, my doc hit my motor nerve instead of my smypathetc and i was paralyzed for about 6 hours!!
you will also experience side effects. they call it horner's disorder but you will look like you had a stroke on the right side of your face for a few hours. the relief though is out of this world!!!! unfortunaltely w/ me though, they weren't enough to sustain me.
the frequency of the blocks really depend on your reaction to them!! i will keep everything crossed that they are successful for you!!!!
i really hope i'm not scaring you, but i feel it's extremely important to be well aware of what you are in store for. i was lucky enough to have a doc that was a straight shooter. and honestly, i don't think i could have handled it any other way!!!!
sleeping is hell!!! i actually lost a relationship due to all of this. it sucks!!! since the stim, i am sleeping alittle bit better, which is a semi-relieving.
that's the 3rd success story that i've heard and honestly that's what keeps me hanging on. i'm usually a very positive, upbeat kinda gal, but the rsd have wrecked havoc on my life. as you know we are soooooo limited w/ what we can do. and i think adjusting to that is on of the hardest parts.
we WILL be another success story!!! i have determination of fortitude, but as you are well aware it's just sooooooooooo darn frsutrating at times!!!
i am glad though to have the opportunity to chat w/ you and hear your experience. i just hope that i can shed some light and possible hope, if not then alteast i can give you support!!
good luck on monday.....keep me posted!!!