Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 03-14-2017, 10:51 AM #1
Shay08 Shay08 is offline
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Originally Posted by ahlevy View Post
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?
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.

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Old 03-28-2017, 10:58 PM #2
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Hi Arlevy. I am so sorry you have been suffering with rsd. I was diagnosed about six years ago when I fell and broke my right wrist. It has since spread to all of my limbs, stomach and mouth. I started out with PT and nerveblocks and gabapentin, pain meds that my pain management dr prescribes. I take antidepressants and antianxiety meds that my phychiatrist prescribe to help deal with the never ending pain. My rsd has never gone into remission. Hopefully someday it will but for now meds and a cane help me to deal with my pain a little better. Aqua therapy is also helpful if the water temp is warm enough. Hope you find some pain relief soon.
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Old 04-01-2017, 05:00 PM #3
ahlevy ahlevy is offline
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I went to the pain management doctor and he just gave me lidocaine cream, which did nothing. I'm seeing a neurologist now and getting testing done to see if there is anything else wrong with my nervous system. In the meantime I'm up to 400 mg of Neurotin 3 times a day. He wants to switch in Cymbalta for my Wellbutrin as well. I am getting a wheelchair because I can't walk to my classes without wanting to collapse on the sidewalk and start screaming in pain. When I'm home though, I won't use it.
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Old 04-01-2017, 06:00 PM #4
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Quote:
Originally Posted by ahlevy View Post
I went to the pain management doctor and he just gave me lidocaine cream, which did nothing. I'm seeing a neurologist now and getting testing done to see if there is anything else wrong with my nervous system. In the meantime I'm up to 400 mg of Neurotin 3 times a day. He wants to switch in Cymbalta for my Wellbutrin as well. I am getting a wheelchair because I can't walk to my classes without wanting to collapse on the sidewalk and start screaming in pain. When I'm home though, I won't use it.
Hi ahlevy -
I agree with the others posting here. I'm sorry you're up against so much and feeling so lousy. I have a few other ideas that have worked for me:
I have found physical therapy to be enormously helpful, additionally I like the book "Why are my nerves so sensitive" by Adriaan Louw - explains how to re-map your brain to manage pain from CRPS (using a technique called graded motor imagery). Since our brains create pain they also can be taught to experience things in no pain situations to decrease pain. Also, the iPad app or book called "protectometer" and iPhone app called "recognize" (I use the foot one) by the noigroup. Their website is also full of good info, As are 2 scientists Butler and Moseley who have done a lot of research on pain and neuroplasticity and on how talking, thinking, speaking about pain can change the brains perception of it. (Over 20 years of research on pain science)
None of these is a "quick fix" but it's helped me a whole lot and I hope it will help you too.🦋
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Old 04-03-2017, 11:41 AM #5
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Quote:
Originally Posted by ahlevy View Post
I went to the pain management doctor and he just gave me lidocaine cream, which did nothing. I'm seeing a neurologist now and getting testing done to see if there is anything else wrong with my nervous system. In the meantime I'm up to 400 mg of Neurotin 3 times a day. He wants to switch in Cymbalta for my Wellbutrin as well. I am getting a wheelchair because I can't walk to my classes without wanting to collapse on the sidewalk and start screaming in pain. When I'm home though, I won't use it.
Sorry the lidocaine cream didn't work for you. It didn't help me either, but at least your doctor tried. Let's hope for the best with the Neurontin and possibly Cymbalta. I think that most of us have gone through trials of a variety of medications to find something that works.

The wheelchair should help you deal with your classes and as I mentioned previously you still have to keep moving, so make sure you don't give in to the temptation at home to start using it. I personally know how tempting that can be. Stay strong. Hope you feel some improvement soon.
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Old 04-05-2017, 10:25 AM #6
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I think mine is progressing too. Moving to the other foot. Have an appointment tomorrow and will talk with my doc. So scary to think of it in both feet.

I take Cymbalta and find it does help with the pain. The Neurontin helps a lot, and you have plenty of room there to go up a great deal on the dosage if you and your doctor feel you need it. I hate all the trial and error with meds, and changing things out with them, etc.

I've tried out the iphone app recognize some, this is a good reminder for me to keep using it.
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