Hello.
Sorry I didn't get back to you sooner. Had a busy day.
I have Type 2. Do you have type 1 or 2?
I live in Colorado. I can't remember if you are in the USA or if you live in Canada, Europe?
I am taking Gabapentin, Pristiq & a prescription antihistamine, Hydroxyzine.
When I was first diagnosed I was put on Gabapentin. I was already taking Pristiq because I have Fibromyalgia & it helps me with the pain & depression of Fibromyalgia.
I was diagnosed quickly, which was surprising because I was diagnosed at the hospital in the next town & even though it is a new hospital, it is a small town. The ER Dr knew what it was as soon as he looked at my foot.
I was in an ATV accident June 21, 2015 that crushed my right foot and hyperextended my right ankle.
After the ER I went to an orthopedic surgeon who confirmed the diagnosis.
I was put on Gabapentin and was given hydrocodone. The Gabapentin helped with the pain but did not get rid of it. The hydrocodone did nothing for me at all.
The small town hospital actually has a warm salt water therapy pool. I started physical therapy there and was making progress until I was injured in the pool. One of the therapists made me do jumping jacks & the pounding on the bottom of the pool was just too much on my foot & atrophied leg. The CRPS moved up my leg to my knee.
None of the therapists there had ever heard of CRPS. People & doctors just don't know about this disease.
I had also started taking amedical marijuana indica edible at bedtime. It helped with the spasms & pain & put me to sleep.
After a few months I started going to the indoor pool at the local recreational center. I went to the deep end & used a pool noodle to do the range of motion exercises that I learned in physical therapy. I eventually started swimming a few laps using one leg. No pressure, just leisurely laps. Sometimes on my back, just floating & relaxing. This helped me to get range if motion in my leg & foot & just got me physically stronger & relaxed a little more. But I discovered that the high amount of chemicals they were using was actually causing pain in my foot.
At the time I quit going to the pool, I started taking Benadryl. My pain started to decrease. I was still taking Gabapentin ( 2700 mg a day) the Pristiq and one Indica marijuana edible at bedtime. I started to have less and less pain. I started to walk around the kitchen without my crutches. Now, I had been on crutches for a year and a month. But after starting the Benadryl, I was walking without crutches. I had a limp and walked slowly but I was walking. I still am a year later.
I started taking a prescription antihistamine this May & I stopped using the marijuana & cut back on the Gabapentin to 1800 mg a day.
The antihistamine really helped me.
I eat as clean as I can. Try to avoid sugar, caffeine, alcohol, tobacco, processed foods, franchise restaurant food, chocolate, really spicy foods - these things stimulate the nervous system. Drink plenty of water, stay hydrated. I watched comedies and laughed. I read my favorite books. Petted my cat. Colored in adult coloring books, it is creative and relieves stress. I didn't put ice on it. Ice on it is a bad idea. If my foot burned hot I cooled it in front of a fan or ran it under cool water. If it burned cold I put my foot under a warm blanket. Get some sun and fresh air. I tried to change my outlook on life. I accepted that things had changed & would never be the same so I found a new normal. There was a lot of trial and error to find what worked for me. I had to teach my brain a new way of accepting and processing the pain.
Look up bio feedback on the internet. Look up on the internet pool exercises for CRPS or exercises for CRPS. Conventional physical therapy does not work for CRPS and the pushing physical therapy even though it hurts is not good for CRPS. It will make it worse. The CRPS moving up my leg is proof of that. And if you read about CRPS physical therapy it will tell you to avoid conventional physical therapy.
Pull up "Paula Abdul and CRPS". She did some new treatment for CRPS that is like bio feedback. It teaches your brain a new way of dealing with pain. Hard to explain. She explains it better. She had it in her neck, shoulder, arm & hand.
I still have pain but not the 9 or 10 I used to have. It is more like a 2 or 3. Sometimes a 1 or none. Sometimes a 5. But not above a 5 in the last 7 months or so.
I didn't do the injections. I do not
do well with things like that.
I developed Serotonin Toxicity this May & that is why I had to stop the medical marijuana, cut back the Gabapentin & stop the Benadryl. The prescription antihistamine helps the pain, as I said above pain is below a 5. It helps me with anxiety and sleep too. Sleep is so important with CRPS. Get sleep! Rest often, don't overdo. Pace yourself. I prayed. I read about Near Death Experiences. I have had one. It helped to read that there is something after this life is over. That others had experienced some of the things that I did.
I have to head to bed now. If I think of anything else I'll get back to you. Stay in touch with me. I'm around this site at least once a day.
I hope this helps. Take care.
Your friend, Tracy.