Hello my RSD
 

Hello my name is Steve and I am 46. I was diagnosed with RSD in 2010. It took me 20 years of doctors visits until I went to a neurologist in Philadelphia PA.
My RSD caused me to lose my job as a nurse. I am on full disability. I can walk very short distances and for longer ones I have to use forearm crutches. The pain in my legs and lower back is bad at times that it takes my breath away.
I have pain in my hands and I get stiffness in my fingers my back and legs.

One of the best therapies for myself (self therapy) is kayaking. I go kayaking every other day for a few hours, it helps me get some exercise. I love to be in nature and this helps me relax.
I was going to my doctors for Lidocaine infusions and would have finished my treatments this past week but I received a call from my doctor and they told me that Medicare would not pay for the treatments any more.
My faith in God is really strong and I know that with him I am able to get through anything.
I hope to have conversations with a lot of people on here, I believe that if we ban together we can get through anything.
Steve

Hello
 

Hello I am new here... I have RSD about 7 years ago in my left arm from a car accident... I have the electric simulator in my back...Also I had a lower fusion in my L-4 L-5 and S-1 and S-3 in back....Had that two years ago.... Now out of now where in Jan. this year I woke up in pain..I get numbness down both of my legs and my arms.. Get pain in my lower back where it's hard for me to walk, sit and even stand...Went to the doctors and they said it could be Fibro???? It's been six mos about and still no better... Now the doctors say I could have an infection in my back since I have two different temperatures.... also said that I have a really bad flare up???? I was just wondering if anyone else is experiencing this at all .. Any help would be helpful..

Thank you

Introduction
 

Hello everyone,

I was diagnosed on my 13th birthday with CRPS Type 1 (formerly RSD) in my right foot. I had a soccer injury that involved a girl twice my size crushing my foot and then hitting that same foot a few days later. Looking back, I was always very sensitive to hot and cold and pain.

We went in for 2 MRI's, 3 X-rays and a few other tests thinking it was broken or i had torn a muscle, ligament or tendon. At this point it had only been a few weeks and we went to my pediatrician. Her husband, an orthopedic, had actually just talked with her a few days ago about "RSD" and some symptoms. So she sent me to him. My foot was cold, I couldn't walk, my foot turned blue, and i could sleep from the pain. He took one look at it and told me it was RSD and immediately put me on amitriptyline for sleep. That summer I relearned how to walk at the beach, per his suggestion as sand is easier to walk on and swimming would help. It was painful at first, but after a few months, i was able to walk again.

Honestly I can say I am very very fortunate to get an early diagnosis, at the time, my Dr was surprised since I was so young, but still I am glad I got treatment. i still have flair ups after injury (considering all the times Ive had them) but instead of medication I got to either my acupuncturist or my acupressurist and constantly rub or touch the area to desensitize it.

About Phaedra
 

Just thought I would share a little bit of how I ended up here and who I am. I am married. I have two grown children from previous relationships. I am or was a truck driver for 4 and 1/2 years. I was driving a bus at a well known Christian University. This is where I was at when I fell in the parking lot going down to the lower bus lot. This fall sprained the inside of my right ankle and tore the ligaments on the outside of my right ankle. I hit so hard on my right knee that It caused patella femoral maltracking problem, bursitis, chronic exertional compartment syndrome, and the MRI also showed a entrapped nerve in my knee. This is what caused the CRPS. Weather it was the damage to the ankle or to the knee that actually caused it, I don't know. I fell mid DEC. and only got a little better. It wasn't until I had the emg done in the first part of March that CRPS was even diagnosed by a orthopedic doctor ( not my doctor) in another city. I had to wait till the end of March to actually hear it from my doctor. Still waiting on the Pain Management Doctor don't get to go see him until Mid June. I so enjoy the waiting game that certain organizations like to force people to play. I have had a whole host of problems arise from this. Panic attacks, blood pressure issues, cycle problems, and of course spreading. I now feel this in both my legs and arms, I even feel it in my body. The newest thing is now my sugar likes to drop and make me sick. This is all new to me and have never had these kinds of issues. So now That I have shared my ugly story. What is next?

Hello Phaedra
 

I am so sorry about your fall causing CRPS. I know how awful that is. I was lucky and only got PN from injury.
While you are waiting for pain management, look up Ketamine infusions. This is the latest being done for CRPS and it has a good track record. Hard to find places in the US that works with this. Tampa Bay hospital is one of them. This Ketamine has had remission reports, through JAMA which is a medical journal with articles from around the world. This mag. keeps up with the latest in research. You might want to ask you doctor when you go see him. If he is has education about this, he may recommend something like this. I wish you all the best. ginnie:grouphug:

My Story
 

I have been a member here for a very long time, but actually never told the whole story of how I got RSD. Finally I put it down in video. So I decided maybe I should finally share it in this thread.
I have read all the stories, and my heart breaks for everyone. I will always be praying for all you :grouphug:

http://youtu.be/g5Q5msVJInk

outside looking in
 

Hello all,
My name is Newt and i am the partner and full time carer of a CRPS sufferer in the UK.

She was diagnosed 9 years ago after i took her to one of my appointments with a consultant rheumatologist and insisted they examined her instead of me. Before that she experienced a string of sceptical or baffled GPs who refused to either believe or understand the severity of her pain given that she appeared entirely normal.

It has been very hard over the years to help her stay positive and not retreat into depression. Some of the things she has been told by GPs which you may be familiar with are... 'it's just a mental health problem', 'your condition is not a REAL condition', and 'i don't see any problem other than you trying to get prescribed medication'. Soul-destroying for a patient when they are having to fight the pain AND their physician.

For those who have been recently diagnosed i would urge any of you to change doctors the moment you get the sense that they are being dismissive or lack previous knowledge of CRPS. A good GP makes a huge difference, and when under the care of a pain consultant, be pro-active. From our bitter experience, waiting for them to send you an appointment rarely bears fruit. On one occasion the clinic told me that they had not invited her to see them for 9 months because they just 'assumed she was better'. *facepalm*

I cannot begin to understand how it feels and the courage it takes you all to live with this illness. It has robbed the woman i fell in love with of almost her entire personality. She often behaves like a cornered and wounded animal, and that her pain is a seperate person and they are locked together in a sort of mutually destructive relationship. (if that makes any sense lol).

Despite this she finds the strength to do exercises/OT techniques when she can, and to make room in her suffering to love me which i will be forever grateful for :)

Although together 24/7 from the start of her problem, i still feel like i am lacking the fundamental understanding of what it is to live with pain having not done it myself, and hope to gain a better insight by reading your collective thoughts, ones which she sometimes struggles to convey or that i cannot decipher.

It sounds like a really selfish reason to join a group lol, but i am looking for ways to expand and use the compassion i have in a more supportive and constructive manner, with the ultimate goal of a higher smiles-per-day ratio here at home :D

Wishing you all easier days,
Kind regards,
Newt

:You-Rock:

Welcome. How wonderful of you to be so supportive and caring.

Hi, I'm Jenn. I would have to write a novel to tell my entire story.
Firstly, I should note that I also suffer from severe Narcolepsy with Cataplexy. The wonderful sleep disorders team at Mayo Clinic in Jacksonville, Florida take great care of me.
I began having nerve entrapments - one after the other. After they healed with physical therapy, the pain increased. Long story short, I was diagnosed last month by my incredible anesthesiologist, with CRPS II. It's spread to my entire body, with autonomic testing done; and dystonia, at Mayo Clinic confirming all my symptoms but coming up with no name for my mystery pain.
Honestly, I'm a bit frightened after reading up on CRPS. Also, relieved. Relieved that I finally have a diagnosis, frightened and relieved (depending on the problem) that many issues I've dealt with for five years have been CRPS all along.
I don't use my laptop much due to the arm pain, but a sympathetic nerve block helped with range of motion. Because of this, my iPhone is my constant companion.
I'm 33, married (although my spouse gave up on me and not supportive in any way), have a six-year-old son with high-functioning Autism. I've been trapped like a rat in a cage, on SSDI since October 2010. My last day of work was January 23, 2008.
Well, I'm looking forward to lurking around a bit :winky: to absorb your insight and knowledge. Beside my health problems, I'm a friendly person with a great sense of humor. We need to laugh, right?
Thanks, everyone.

HI
 

HI Jenn,
I live near u in Holiday fla, think you are the first person I have seen on here that close to me..Welcome sorry it's for the reason it is but everyone here is amazing! I hope u find the peace you need here, take care
HEIDI~