Help!

your body has gone into shock and now it sees many things as a threat. Often accidents and surgery sets your sympathetic nervous system into overdrive, later the central nervous system. Pain signals can be sent to other parts of your body for no reason. There can be changes in colour, temperature, hair growth in unusual places, nails can stop growing and in my experience you can get cracks in the feet. There is no cure but you can go into remission and pain can go away. There are lots of options for treatment and medication so make sure they explain everything. Lidocaine infusions and meds help me. Hope this helps.

Hello, Joanne.

I am so sorry that you are having so much pain and stress.

No one really knows what CRPS is or what causes it.

First, try to use you foot and leg as much as possible. It will hurt but you have to keep movement in your foot and leg or the CRPS will get worse. Your brain and nervous system has to find a different way of dealing with the pain.

Find a physical therapist who knows about CRPS and how to treat it.

CRPS can cause bones to become weak so take a really good quality calcium supplement and eat good quality dairy products. That is probably why some bones in your foot broke for no reason.

Weight bearing on the foot and leg will also make the bones strong and your pain will eventually lessen the more you use the foot and leg.

You have to work through the pain to get recovery or remission of the CRPS.

Try gently rubbing your foot with a soft material. When you can tolerate that move on to something a little rougher, when you can tolerate that move on to something a little rougher. On so on. Same with temperature. Start with luke warm water then when you can tolerate that, a little warmer etc. Then go the other way with cold water.

I have CRPS type 2 in my right foot and leg. I was on crutches for a year. I couldn't walk because of the pain and from losing range of motion. One day I just decided that I had to start walking without the crutches no matter how much it hurt no matter how much I was limping.

I started by hobbling around my kitchen while I was fixing meals. Then I was hobbling around the house. Pretty soon I was walking outside the house, then in public. It hurt and I was limping but I was off the crutches. The more I was able to walk ( weight bearing) the less pain I had, the spasms stopped and the better my range of motion became. It takes time and patience and putting up with the pain. But my brain found a new pathway to dealing with the pain.

I also cut out sugar, pasta, potatoes, alcohol, caffeine- any foods or drinks that overstimulate the Nervous system.

I take Gabapentin, Pristiq and 2 Benadryl at bedtime. The Benadryl has also helped the pain and puts me to sleep at bedtime. Sleep is so important with CRPS.

I have been walking for a year and a half now. My pain hasn't gone above a 5 in a year. The spasms have stopped except for a bout of toe twitching this fall. I don't limp anymore. My gait has changed, it is shorter and more measured. I can't really run or walk quickly, I have to keep a measured pace.

Make sure to rest often, pace yourself with everything you do.

If you can't find a physical therapist who can treat CRPS. Look on the internet for physical therapy for CRPS you can do on your own. If you have access to a swimming pool look for aquatic exercises for CRPS. Don't overdo. Start slowly and build up. Start with range of motion exercises in the swimming pool.

I started with range of motion exercises in the deep end of a therapy pool then eventually was walking in the pool. Then I was doing the therapy on my own in the rec center pool and eventually swimming some laps.

I avoid stressful things like the news as much as possible.

I hope that you overcome this and find relief soon.

I am here if you have any questions.

Gentle hugs.

Tracy

Hi Joanne

That's the thing we don't know exactly, is why??.. we do know it's precipitated by trauma, surgery or injury. Sounds like you've covered that. The only one thing that is a common denominator is the uncontrolled pain. Everyone seems to have different symptoms and from experience I can say they change all the time.

Get informed. Find a good pain doctor and listen to your options.

Sounds like you've already put up with an awful lot and if an absolute diagnosis is what you're looking for, the only thing my pain guy said that is close to being diagnostic is a sympathetic nerve block that is positive ( and obviously your symptoms )

Unfortunately, I've been around the block since my diagnosis in 2014 (after 2 yrs of symptoms), including 2 neurostimulators, a baclofen pump, a ketamine induced coma for 8 days, and an 11 week hospital stay this last year. 8 weeks of that in the ICU. But what I've learned about this disease has been invaluable to myself,my family and even the local docs that knew nothing about treating this.

If they are pretty sure it's CRPS/RSD, then you're going to need all the support you can find, and they're going to need to be educated on this too..it's complex and one of the most life altering conditions but there is life after a diagnosis.. quality of life is absolutely the most important.

I wish you all the best and know this place is here for you too!

Andrea