Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-14-2012, 10:56 PM #361
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Originally Posted by CRPSjames View Post
I have been reading posts for some time and finally decided to join, hoping to help others. I have CRPS and I am a Spinal Cord Stimulator surviver. I say surviver because I unfortunately had a stimulator implanted before I knew of the dangers and risks of SCS with CRPS. Even more unfortunate my doctor suggested a second stimulator to control the spread to my wrist that occurred as a result of a revision surgery of the first SCS, which worked great for 20 months and then just stopped working.

I decided that one spread and one limb with dystonia as a result of a SCS was enough. My doc responded by telling me there was nothing more he could do for me.

I was very lucky to discover the posts on Neurotalk regarding tDCS. The SCS left me in a wheelchair. Although skeptical about tDCS, I read every clinical trial I could find, (unlike what I did with the SCS, that research was basically reading posts on forums of SCS "success stories" which consisted of a few people with CRPS who had not had their SCS for more than months or a few years, in addition to my doctor and the Boston Scientific rep who assured me that the procedure was effective and safe for CRPS patients.)

I have been using tDCS since the first week in January and I have regained full use of my hand and the alodynia in the wrist is gone. I am now on a walker and the dystonia on my foot as well as the spasms are greatly improved. My physical therapist believes we can now make some real progress. Also, the constant headaches and irritability have greatly lessened.

I so much hope that other's who have found failure with every other treatment try tDCS-especially consider this treatment before ever risking greatly worsening your condition with a SCS.
CRPS James,

I think I posted on the wrong post. I am so happy to hear about your
success with TDCS. My daughter will be trying the treatment in April.
Please keep us posted on your progress. Here's wishing you with continued
success.

Joydee
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Old 02-15-2012, 12:28 PM #362
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Angry

(sorry if this is a little long... I have never actually talked about it to someone...)

Hi, I am 19 and a Sophomore at CU Boulder. I was hit by a car my Junior year of high school. Even though there were a few pains, I didn't think much about it after I had gotten my stitches out and what not from other injuries. I continued to play football. Every game I was struck in the back and landed on my knee (same one the car hit) at least 2 times a game for about a month. Eventually, I was hit again, landed on it again, and was barely able to get to the side lines. my knee was so swollen the trainer had to cut my pants off. I was diagnosed about 2 weeks later... Sadly... I didn't understand how intense CRPS is... By my freshman year of college I was using a cane to get around due to muscular dystrophy. It was so hard to get around and do basic things, I was forced to go see a physical therapist by my friends. Soon enough we reversed the muscular dystrophy and I lost the cane... but the intensity of my nerves and the area effected has grown... It is so sensitive now I can feel an eye lash rub against the hairs on my knee... I really want the intensity to go down... Someone help?
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Old 02-15-2012, 12:43 PM #363
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Default Hello genni

I want to Welcome you to Neuro Talk. I am so sorry to hear what brought you here. There are lots of folks who have injuries, then get RSD or another painful condition. I have NP so I have an idea on what you go through. Sometimes your primary care physician, can call the specialist and get you in sooner. Don't be afraid to make your needs and worries known to your doctor. You are correct that treatment the sooner the better. I hope you get better, and that this condition settles down. I also feel for the loss of your dance. It hurts a person to give up something they are clearly love. Pointe dancing is an art form, and I am sorry that your foot hurt you. I also lost a career due to my cervial problems. You are young, and that can be to your benefit. I hope you get into seeing the very best specialist as soon as you can. You can also go to a pain management Physician to get care until your appointment. You have found a compassionate site genni, and you will also make a few new friends. I wish you all the best. ginnie
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Old 02-15-2012, 12:53 PM #364
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(sorry if this is a little long... I have never actually talked about it to someone...)

Hi, I am 19 and a Sophomore at CU Boulder. I was hit by a car my Junior year of high school. Even though there were a few pains, I didn't think much about it after I had gotten my stitches out and what not from other injuries. I continued to play football. Every game I was struck in the back and landed on my knee (same one the car hit) at least 2 times a game for about a month. Eventually, I was hit again, landed on it again, and was barely able to get to the side lines. my knee was so swollen the trainer had to cut my pants off. I was diagnosed about 2 weeks later... Sadly... I didn't understand how intense CRPS is... By my freshman year of college I was using a cane to get around due to muscular dystrophy. It was so hard to get around and do basic things, I was forced to go see a physical therapist by my friends. Soon enough we reversed the muscular dystrophy and I lost the cane... but the intensity of my nerves and the area effected has grown... It is so sensitive now I can feel an eye lash rub against the hairs on my knee... I really want the intensity to go down... Someone help?
I'm so very sorry for what you are going through. Welcome to Neurotalk...I have found lots of great advice on here about different things to try and different treatment options. The people on here are very supportive and we all understand what it is like to live with this daily pain.

Can I make a suggestion? Maybe start a new thread about sensitivity and RSD...I know I don't check the introduction thread as much as I should and I think you will probably get more responses that way.

Personally...I have found that trying to desensitize the RSD areas (there are different therapy techniques to do this) is the best bet and also finding out what things can help relieve the pain itself. It took a long time for me to build up tolerance for normal clothing and stuff touching my skin but now I can wear them. It's not that they don't hurt...more that I have learned to cope with the pain and found little things that help with the pain itself. Heat helps my pain and I also have Lidoderm Pain patches that I sometimes will put on my RSD areas if they are particularly sensitive or I am going through a bad flare where I cannot bear the touch of anything. I have a TENS unit that also helps with the pain...especially in my ankle where I can surround the worst, most sensitive area with the electrodes instead of having to place them directly on the most sensitive area. Everyone with RSD/CRPS is different though so what helps one person might make another person worse. There's also a newer, relatively inexpensive treatment that many have found successful (I'll be starting it soon) called tDCS and some people have found significant pain relief from it. Definitely check out some of the threads on here about it.

Hope you find relief soon!
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Old 02-15-2012, 12:54 PM #365
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Default Hello Koongoo

Welcome to Neuro Talk. Your post can be as long as you need it to be. This is what the site is for. You are welcome here to go to all the forums that may help you. I am sorry you got hit by the car to start with. I understand abit about these kinds of conditions that develop with re-injury over time. You need to see a specialist. An Orthopedic, Neuro surgeon, in those diciplines. A pain specialist can help too, and you need a good one. Sometimes the current doctor you see can recommend you to one. If you don't know who to go to, ask for the referral and have your doctor call in for you. You can also post where you location is, and somebody on site, may be able to tell you of their doctor. I do tell others who I see in my state. A doctor who specializes in RSD is also the best source of information, and help, but can be hard to locate. A teaching hospital in your area can help find one. I am sorry that you are young and having to go through this. However your youth can also be a strong point in the healing department. I hope this condition can be reversed, or calmed so you have your life back to a more normal way. Don't give up. This site will be here for you with any of your questions. I found this site when I was in bad shape, and the help I received got me through the worst of it. take care, ginnie
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Old 02-15-2012, 09:42 PM #366
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I want to Welcome you to Neuro Talk. I am so sorry to hear what brought you here. There are lots of folks who have injuries, then get RSD or another painful condition. I have NP so I have an idea on what you go through. Sometimes your primary care physician, can call the specialist and get you in sooner. Don't be afraid to make your needs and worries known to your doctor. You are correct that treatment the sooner the better. I hope you get better, and that this condition settles down. I also feel for the loss of your dance. It hurts a person to give up something they are clearly love. Pointe dancing is an art form, and I am sorry that your foot hurt you. I also lost a career due to my cervial problems. You are young, and that can be to your benefit. I hope you get into seeing the very best specialist as soon as you can. You can also go to a pain management Physician to get care until your appointment. You have found a compassionate site genni, and you will also make a few new friends. I wish you all the best. ginnie


Thank you very much for your response. I have been to 3 physiatrists, 2 sports medicine specialists and 3 different Physical Trainers. The only advice I was given is to get nerve blocks and to keep up the stretches so I don't lose the muscle in my leg again =/
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Old 02-15-2012, 09:53 PM #367
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Thank you, I am in Birmingham Alabama. So, if anyone happens to know a specialist I could go see. If anything I might just go down to the UAB campus. There mainly are a medical school so someone there might know someone. I really have a hard time talking about my problems but it's just getting to the point where its more and more difficult to deal with since my recent break up and I am worried that the 2 jobs I will be starting next week will be effected by my pain =/ Thanks a lot for the advice and I don't think I can make a new thread =/
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Old 02-16-2012, 12:18 PM #368
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Default Re: medical school

Yes koomgo, do go to the medical school. I first went to one in Columbia Missouri medical center. I did indeed receive alot of help and was in a trial study. I sincerely hope you get better. This issue is not in your head, but councel, can be a good thing. I have a psycholigist friend that I have talk to for 25 years. He is retired, but has been there for me through all of my problems. A blessing in my life. I hope you reach for that help so you can enjoy your life alot more. ginnie
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Old 02-18-2012, 07:00 PM #369
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Feel free to post your story, your RSD history, or an introduction to the forum members.


Hello & Welcome -

If you haven't posted in the main area of the RSD/CRPS forum, please do so, as sometimes new members get missed if they only post here.

You can copy your post from here, or make a new thread so the members can say hello.

Main area for the RSD/CRPS threads & posts-
http://neurotalk.psychcentral.com/forum21.html
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I have had rsd over a year, due to a cheerleading accident where I was dropped on my head from an extreme height. in this fall, I fell on my hand as well, causing a sprained thumb, that later was diagnosed as rsd, months and months later after being casted and splinted for months. Now, the rsd has spread to my elbow and I have little use of my hand. My pain is always high; about an 8 out of 10 when I first wake up, and from then on, the pain is just unbearable. I cannot concentrate, because of the pain, or sleep. And to make matters worst, my parents and family members do not understand anything close to what I am going through. They said that all I do is complain. So, here I am now, seeking out for help from those who do understand. My dad even told me that I am defeating myself, and that it was my own doing, that caused my rsd to spread?! He even said that all I do is have a pitty party. My mom doesn't say anything when I am crying in pain, and my sister called me fake?! I am new here, and quite young, as I am only 18.
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Old 02-19-2012, 11:57 PM #370
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Smile Welcom Lema56!

I am glad either you found your way here courtesy of Jomar's help and guidance or her redirect of your introduction post to this Forum, because it is truly where your situation will find responses of hope, help, that good feeling of others who deal with your issues and have knowledge of RSD sufferer needs.

It is easy down on the thread line to start a new thread for your posts specific to your trauma, or to pick relevant threads and write posts to such threads and begin to find your own personal "comfort zone" here. This is a safe place. Many who personally feel your issues inhabit this place for sharing with youand you with them.

There is no judgment passed on those who post, for in the posting we all gain strength, healing, information, and support- the very things even those who surround us as family and friends cannot necessarily do if they begin to wonder why is Lema not doing better? What is wrong with Lema? RSD once diagnosed [DXed in short script here] is a matter the proper physician treating you will take seriously, very seriously. So read, learn, ask questions freely, and perhaps you will come to know things which should come to the attention of your family and doctor.

Blessings on you,
Mark56
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