Quote:
Originally Posted by birchlake
Welcome to the forum. Sorry we had to meet like this.
I have CRPS in the foot as well. It is the result of multiple toe surgeries.
This is a good resource and a good place to vent.......
You will find that EVERY patient is unique as far as treatments. There are similarities of course, but you will have to find what works for you through trial and error.
It is best to use a multi-disciplinary approach to this disorder. The #1 piece of advice I can give you is to assemble a team of professionals that understands this disorder. That in itself can be difficult. Many doctors have had little or no experience with this. If you find one of those, say thank you very much and keep looking.
I use a podiatrist, physical therapist, chiropractor, massage therapist, general practitioner and a pain management doctor. Each one brings something unique to the table that has helped me. I do most of my own physical therapy now, as I was trained by a very competent and compassionate physical therapist.
Give us some details as to how long you had it, cause, specific symptoms, things you have tried, etc. That will help us in making suggestions.
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I haven't had it very long, but it seems like a life time already. As I am the bread winner for the family. My husband had a spinal cord injury just over a year and half ago. We are trying to get his disability approved. I am used up all of my PTO and medical leave, so my company does not have to leave my job open for me. And I now have to pay COBRA to keep the insurance but we cannot afford that as what is left in the savings will have to go to rent this month.
I had Tarsal Tunnel Release on my left ankle on 03/22. No weight bearing for 2 weeks after the staples were taken out he said that I could use my boot and crutches to walk but when I put my foot down to walk it felt like I was walking on broken glass and I kept trying to put my foot down and walking. The surgeon said he never heard of that, the "broken glass" feeling. So after multiple visits to the surgeon and a trip to the ER because the sole of my foot was blue (I really thought they were going have to amputate the foot) and telling him my foot hurt he gave a referrel to a pain management clinic.
My foot hurt so bad by that time all I could do was cry and this was not using the foot. I had burning, shooting electrical jerking sensations in my foot going to my toes. I called his office one last time for help with the pain and he refused (that was a Friday afternoon) so on my 50th birthday I went to a neurologist I had seen before for my neck. He game me neurontin and about 3 other perscriptions. He gave the diagnosis of RDS. I did go to the pain clinic also and she called it CRPS (05/31) and started LSB. I have had three. This las one helped alot until I went to PT the next day which was yesterday.
At first PT was just post surgery then for RSD using the pool put this still hurts and my toes hurt the worst but it still hurts the inside of my left left to the ankle then the whole sole and heel of the foot. It is mostly red alot then it can be white and blue. There is so much atrophy in the leg and foot. After I walk on it for a couple of minutes it starts to swell. By then end of the day its about twice the size of my other foot/leg.
The foot is so sensative I do not wear socks or but the sheets on it. the last time I wore closed shoes my foot feel a sleep and didn't waske up until I took the shoe off.
I have another appointment with PM doctor to see where we go from here.??
That's most of my story. Not sure if you can follow, seems like I am just rambling.