Quote:
Originally Posted by ahlevy
I am 19. I was diagnosed with CRPS when I was 11. I had a broken foot after a martial arts accident. The pain just never went a way and got worse over time.It was finally a PA at the orthopedist that diagnosed it 6 months later. I received physical therapy and it went into remission without medication. The next year it came back with a vengeance. This time I was referred to the pain clinic at the children's hospital. They put me on Neurontin and Elavil. I went off after it seemed to go into remission again. It flared up the next year, too. This time it spread from my right foot up to my knee. I was put back on meds. That summer I had significant mental health issues and was hospitalized for two months. The pain clinic told my mom and I that they wanted my psychiatrist to manage my medication. I went up to 300 mg 3X day and 100mg Elavil (it was my antidepressant as well as pain management). I eventually lowered the dose to 200 mg 2x day. i have not been in complete remission, but at a tolerable pain level. Last weekend I fell and bruised my right shin badly. This triggered a bad flare up. i tried going up to 300 mg of Neurotin 2x day, but with my current mediaction (Luvox, Latuda, Wellbutrin, Clairnex, Advair, Ativan, and Benadryl) It makes me dizzy and I stumble around. Today I surrendered and got crutches. Since my flare up began i've being feeling CRPS type pain in my left ankle. i am about 90% sure it's spread to my ankle. I am thinking of asking my psychiatrist for a prescription for a wheelchair. I'm a sophomore in college. I don't want to limit myself, yet I have to because of the pain. i think a wheelchair would help me go to class without almost passing out because of pain. I think I can learn to live with the pain as long as don't walk farther from my bathroom. Any more it hurts too bad for me to stand. Are there treatment options that would work 8 years post diagnosis? Has a wheelchair helped you?
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I agree with the suggestions from Catra121 and Littlepaw. First of all there are many treatments available for CRPS regardless of the length of time you have had it. You need to find a doctor who knows about all the options and of course you need to coordinate every thing with your psychiatrist and other doctors.
Make sure you have that shin checked like Littlepaw suggested. Once checked, consider physical therapy again and coordinate that with any assistive devices you may need. I agree that sometimes a wheelchair or rollator as Catra121 mentioned may be needed at times to help you meet your life goals. College is important to you now and you should not give up on it. A physical therapist experienced with CRPS can help prevent permanent disability and help you find the right balance between activity and the use of an assistive device.
I used a wheelchair for a while after breaking my foot and then only when endurance, safety, and speed were an issue. The rest of the time I made sure that I exercised and used that foot as much as possible. This injury came after the previous injury that resulted in CRPS. I did have it spread to that area but it has been managed with appropriate exercise and treatment. I also live by the motto "use it or lose it" because if you don't keep it moving you
will lose function. Good luck.
Shay