Hello! My name is Courtney and I am a 21 year old girl, who finally after atleast 4 years of searching for answers was diagnosed with CRPS! I am new to NeuroTalk and just wanted to tell my story and get started with a support team of people who understand what I am going through.

When I was in 4th grade, I was a competitive gymnast and was getting ready for a competition the next day. I was practicing my vaults and when running, felt a pop in my buttock area. After a doctor vistit and MRI it was discovered that I had avulsed my ischiam in my pelvis. Since I was so young the treatment was to stay out of gymnastics a few months and let the pelvis heal on its own. After a few months I went back into gymnastics and trained and then ended up quiting and started cheering competitively as well as as school.

My freshmen year of high school, I was dropped doing a stunt and landed on my butt. After going back to the dr. and another MRI, result's showed either a re-tare of the ischiam or that it never healed originially. I quit competitive cheerleading and layed off the activity. Pain worsened and worsened through out the years and my leg began to have tremors and shakes when it got tired and was hurting bad. My senior year of high school the pain overtook me and I basically became paralyzed, and in so much pain even to touch my foot would completely un-nerve me. I was taking hydro-codiene and morphine at home and it hardly even touched the pain. Every doctor I saw would take a look at x-ray's and tell me "they wouldn't touch me with a 10 ft pole." Finally, after many dr's, I found a confident orthapedic trauma specialist that said that he could make me better.

Surgery was perfomed. The bone that I had avulsed has entraped my sciatic nerve. The bone was removed and my nerve was released. The night after the surgery I could already tell that I was better! Within a week I threw out all pain medication and was begining to walk again.

About 2 months later I was jogging and felt the same familiar pain shoot down throught my toes. Back to the doctor for more MRI's. Results revealed heterotopic ossification in my muscle adjacent to the sciatic nerve. My surgeons exact words were to suck it up. Determined that I didn't HAVE to live in pain, I searched for doctors. I went from orthapedic surgeons, to neurologists, to back specialists, since my pain had began to go into my back as well. One orthpedica trauma specialist told me it was in my head and I was making up the pain. Therefore, I decided to put myself with a psychologist and pain management doctor. The psychologist told me that I was fine, I was just in pain, and the pain management doctor put me on different medications that gave me headaches and horrible side effects but never helped with pain. I even tried one medication that gave me mood swings and suicidal thoughts. Finally, after researching online we found a wonderful doctor at the hospital for special surgery in New York. We traveled to New York to see him. Which was the first place that RSD/CRPS was mentioned. Me, being sick of doctors ignored this, by my mother went home and researched it. The New York doctor prescribed a lumbar sympathetic block to be done at my pain clinic back in Texas. My pain management doctor was completely convinced that this was not the case and that this block would not help me, but he agreed to try it out. I had the block and felt immediate relief! It was like a new me, and I had never felt that good in my life!!! The temperature difference when the block took was a 10 degree difference, which my pain management doctor was pleased to say that it was afterall a succeful block. The block lasted me about 9 months and I received another block in December of 2009. The second block took just as well, but my back pain was getting worse! I proceeded to go see back doctor at Texas Spine Team. Who took MRI's and referred me to another physiologist in his center. The MRI's came back nomal. Even the heterotopic ossification and dissapeared, which in our opinion was an unbelievable gift from God! Good news, which also confirmed the bad news of CRPS!

My physiologist talked to me about options, but listed me a favorable to recover! I know I have a long road ahead of me, and I am willing to do anything to get better!!! I am excited to have found this website, where I cant talk with others in pain, and we can give eachother positive feedback!

Anyways, that's my story! Can't wait to hear from everyone!!!

Welcome to NT

I'm glad you've found this site too. It gave me so much help with TOS and back and neck and leg stuff, emotional, financial, and many other issues that come from being needy of medical attention. It's so frustrating until you get to the right ones for you. Sounds like you've had some successes along the way. That's a good thing.

Settle in. Get to know some others who suffer from RSD and chronic pain. It's not a good thing to have, but we need to help each other through this, and we do support each other. We understand.

Here's the RSD forum:

http://neurotalk.psychcentral.com/forum21.html

You will also help many with your experiences.

I found LED and infrared light pads to help me a lot farther along than one would expect.

I'm in wellness now, bored with the aqua treadmill, so my therapist/good friend got me a pineapple disk with reflexology and magnets for Xmas. It's working out great for my workstation.

There's so much info here. I'm sure you will find things that will help you.
I'm more than happy to have posted things that may have helped someone in some way. Just ask and we'll try to help you figure it out.

God bless, and thanks for becoming a part of this community.

Hi and welcome to Neuro Talk,

Wow you have been through alot.
Iam glad you found us here, it really is a very caring community.
Have a look around there are lots of places to talk, and if you have any questions, feel free to ask, someone is sure to know the answer.
Looking forward to seeing more of you
take care
Kate

Hi Courtney
Ive had RSD for about a year,mine is very agressive,,you are blessed by God not to have a massive spread and you are responding well to the blocks..I hang out in th rsd/crps forum,,,I wish you well,,May the lord continue to bless you and heal you,,,,,,,,,,bobber

hi courtney and welcome,

can i ask what CRPS is? i think i knew but now can't remember.
anyway, i'm glad you found our site.

you'll find a lot of info and support here.
hope to hear more from you.

you've certainly been thru a lot and i can see you're an excellent researcher and advocate.

--stands for "complex regional pain syndrome", which is sort of the overarching term for what used to be called Reflex Sympathetic Dystrophy (RSD); it's a nerve disorder often triggerd by trauma and characterized by sympathetic maintenance of erroneous pain signals, often with trophic changes to the affected area:

http://neuromuscular.wustl.edu/sensory-pain.html

Hi Courtney, and welcome to NT! This is such a great place with lots of friendly, caring, and helpful people.

We're so glad you found us!

Hello Everybody,
I'm new to this site, so bear with me please.
I am 47 years old with little or no health problems in the past.
In October of 2009, I caught the H1N1 flu. After about a week and a half of continuous coughing, I felt a pop in my lower back. I was unable to get out of bed without severe pain. After going to the emergency room, I was told I slipped a disc while couging (yes, you can do this, no matter how silly it sounds). I was told to stay on bed rest for 5-12 days. Well, after 2 days, I suddenly had no feeling in my right foot, and after another day, it had moved up to my calf and knee. After an MRI was performed, I actually had a herniated disc in my lower lumbar affecting my sciatic nerve. I was also told that I had early degenerative disc disease. I was told by my doctor that the herniation was too severe for optional treatments such as physical therapy or cortizone injections. My only option was surgery (microdiscectomy).
I was told my surgery was pretty invasive (the piece they needed to remove was larger and more difficult to remove, than had been expected). Still I had 100% no pain the first 3 days after surgery! It felt like a miracle! Then the pain returned on the third day. My neurosurgeon said that this is very typical due to swelling from the surgical procedure, and that it would just take a few more weeks to "die down". I also had symptoms where my right leg, from the knee down, would suddenly turn red, swell, and feel hot to the tough (it didn't matter what I was doing...resting, walking, sitting, etc). I was told to immediately have an ultrasound to rule out blood clots. Fortunately, no blood clots. Well, the weeks turned into months, and after 2 more emergency room visits and an hospital admittance for a week (to come up with a pain management program), I was finally given a second MRI. Of course, it was clear. Again, I was told that due to the acuteness of my herniated disc, it was just going to take more time for the nerve to "die down".
After 3 1/2 months, I was finally given the okay to begin physical therapy. It was with my physical therapist that I first heard about CRPS. When I asked her to write that down for me so I could look it up online, she did, but also said "don't freak out by what you read on CRPS". Well, I may not be "freaking out", but I am very worried to say the least. It has only been 4 days since my first physical therapy session, so I'm writing this now to put my mind at ease. After reading some of the other stories, I feel even more scared about what might be in store for me. I teach kindergarten and have my husband and 2 young sons at home with me. I know it's only been 3 1/2 months, but I just want some positive experiences out there that I will, once again, be able to have a somewhat "normal life". If anyone out there is willing to let me know what worked best for them, please let me know. Thank you so much for "listening".

Welcome Courtney!! Hope your able to find answers to your problems!! I wish hugs would heal...I do know this they help me to be able to carry on!!

Welcome Courtney

You've been through a lot. Has a doctor officially diagnosed you with CRPS? I know therapists are good but they can't diagnose CRPS. They do handle lots of physical conditions, though.

You leg symptoms sound pretty bad. I hope you do find some healing and get back to your pre-flu status.

My pain management doc described to me that I would be like an onion, peeling away the layers of pain caused from an MVA in 2000. When you have two or three things going on, it can become complicated for you and the health care providers. It is scary, and it can be a jungle out there.

Surgery takes time to recover. There's no shortcuts for recovery yet. I sure hope things are better in time.

Sometimes some back conditions are surgical. So surgery may have spared you from other medical isues or perils. Do you feel the surgical repair was necessary? It's never good to find yourself in pain and needy of medical attention.

I think you'll find lots of CRPS suffers here that will help you understand things a little better.

Keep in touch...