New member
 

Join Date: Jan 2013
Location: Florida
Posts: 1 New member introduction

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I have been reading posts on this site for the last 3 weeks when my insomnia and high pain kick in and have finally decided to post about how my diagnosis of CRPS came about.
I had 6 ankle/foot surgeries (same leg) in about a 12 year time span, The last surgery was a double arthrodesis. Did fine for about 5 years, then fell off the walkway to my house ( only 2" tall) and really twisted my ankle. Had the usual x-rays, MRI scans, in a boot for 6 wks, casted for 8 wks, still not healing.
I was then sent to a trauma surgeon who then told me I was in BIG trouble. Oh Yea ! When all was said and done, I went in to surgery#7 for 7+ hours, had 13 screws, 8 fractures, 5 bone fusions and now a triple arthrodesis.
Now I have no wt bearing for 16 wks, went in to get cast removed, bones not healing, 4 more weeks in cast. After that time he took the cast off and I started PT. Only allowed to WT bear in the pool. Well I spent 53 weeks in therapy, at the end I could wt bear/walk for 15 mins max with crutches. Next 3 visits to surgeon no change, x-rays a tiny bit better, the fusions did take well. So now I can walk 10 ft without crutches but need things to balance against, since I have no balance at all.
My surgeon sends me to an Anesthesia pain Dr. 4 weeks ago, after a physical and review of all tests, diagnosed with CRPS. I have had 3 lumbar sympathetic nerve blocks, and the 3rd block was a breakthru, 15 mins later you could see my blue foot actually get pink and instantly warmer.
So, where I stand( well no, actually sit in my wheelchair) I will have the nerve blocks once a week for now and started on Lyrica 300 mg day and have had good results with the nerve pain and burning. Unfortunately the deep i call it dark pain is still present, even with Tramadol 6x a day. So I am going to ask Dr about meds for the break thru pain. He wants to start PT again while I have the nerve blocks so that will probably start next week, My BIG concern now is that my left knee is now getting really stiff and if I flex to much painful, concerned that the CRPS is creeping up. So now for the past 18months I have been dependent on my wheelchair for any activities outside the house, and am very fortunate that I can get out of the house of course usually for Dr appointments.
Sorry for such a long explanation but this is my story.

Hi Wibley, welcome to neurotalk-but very sorry you are here with this diagnosis. It really does us all well to get as much knowledge as possible about CRPS. Be sure and keep your drs. up to date on your knee. This disorder for many of us has traveled in the same limb-crossed over to the other limb, etc. For me, started in right shoulder-frozen- then after 100 PT treatments to get range of motion back, travelled to other shoulder-more PT. Then went to left hand of original shoulder- now full body. both feet legs, etc. I'm grateful to have had good pt treatments and use of all limbs-except left hand is partially paralyzed-like a claw.
You will find a lot of good information, comfort and support here. RSDSA is a wonderful website. You can put in your zip code and find the closest local support group available to you. Also RSDRX.com has a lot of good information. The Florida Dr. retired, but has a lot of good information available. especially under puzzles , which are over 140 questions answered.
For me, when I researched some words on the internet, sites like mayo clinic, wikipedia, -i gained a better understanding of RSD. Words like sympathetic nervous system, parasympathetic nervous system, vegas nerve, and autonomic disorder. I began to understand RSD or CRPS is a disregulation of the autonomic nervous system. the disregulation of the sympathetic nervous system and the parasympathetic nervous system. These systems are the fight or flight part of our body. They regulate, body temperature, heart rate, blood pressure, etc. With this disregulation, we have the 'burning' hot part of our body out of control, and or ice cold part of our body. Our blood pressure goes from extremely high to low and passing out. We can have both tachycardia (high heart rate) and bradycardia (low heart rate) syncope-passing out. It is easier to understand why anxiety is part of RSD. I found that professional counseling was good for me-this is a life altering condition, and counseling helped me cope with the dramatic changes that come with it.
It is difficult for family and friends to understand this, lets face it most drs haven't even heard of it.
Let us know how you are doing and again welcome. loretta :)

Wibley,

Wow that's a lot to go through!!! I'm new myself. I do see your from florida and know there are some great clinics for CRPS there you might want check into it if you can!

http://www.rsdhealthcare.org/

It can't hurt to try it a least! I hope you get some help and relief soon!! I couldn't tolerate Gabapentin OR Lyrica starting on Cymbalta now, and keeping my fingers crossed!

Loretta,

Thanks for the support group info and the info about the symp. nervous system. While I came from a medical field for 20 yrs I mostly worked in ER trauma and blood banking so this is a new education for me.


Emily,

Thanks so much for this link. I will definately check into the information.


I just found out today that my insurance changed on Jan 1st to a new company and the pain specialist I have been seeing does not accept my new insurance. So I had to cancel my sympathetic nerve block scheduled for tomorrow. Now I have to scramble and figure out what my insurance will pay for out of network provider, and if I financially can afford to stay with this doctor. It stinks especially since I really like this doctor and the office staff.

Tonight is one of those bad nights, I feel totally exhausted since I only slept a few hours last night but it feels like every nerve in my body is hyper tonight like constant tingling and I can't quiet it down except of course my leg which right now is as red as a fire truck and hot as fire, Grrrrrrr guess i will be watching some movies tonight.