Hello Liz0323,

I was also diagnosed with CRPS type 2 following nerve damage during hip surgery. So I can sympathize (as many here can) with the devastation this causes in the beginning. When did you first develop symptoms of CRPS? Personally, I wouldn't let what the one doctor said about remission like it is written in stone. The fact is this disease/condition is complex and there truly is no way to accurately predict the progression/regression of it's symptoms for any one individual. Each one of us will be totally unique in how it develops over time. That part can be even more frustrating at times.. just try hard to stay positive and focus on doing as much as you can to help yourself cope.

When I was first diagnosed these are the things I implemented in my daily life:

1. desensitization - done during warm water epsom salt soaks. I used different textures of cloths, body wash, lotion etc., in the attempt to decrease the sensitivity. It also helped me to turn my head and while holding my husbands hand I would gently place it on my leg and then pick it back up again. These things really help.

2. keeping that body part warm. Clothing can be difficult on a CRPS limb. If you try different textures you should be able to find the type of linen that is most comfortable to you. Keeping the limb warm makes it easier to move and causes less pain stimuli.

3. a kitchen timer. I use my kitchen timer to go off every hour to remind me to move the affected limb. Bracing or immobilizing the affected limb does much more harm than good. I started with slow gentle movements for 10 min. every hour and increased as I was able. Spread your fingers, do your desensitization, place a tennis ball under the palm of your hand and roll it on the kitchen table in a circular pattern, pour our a bag of m&m's and sort them by color, move cotton balls from one bowl to another.. whatever you can think of to move your arm and fingers no matter how simple the tasks seem. Incorporate these things into your daily routine.

Ask your doctor about these things:
Lidoderm patches
voltaren gel
medicated compound cream (with ketamine)
gabapentin
nortriptalyne
flexeril
celebrex

Vitamins:
Vitamin C
Vitamin D3
Vitamin B6 & B12
Daily Calcium

Eating a diet full of fresh fruits & veggies, fish & fowl and avoiding processed foods will be beneficial for many reasons.

Stress, fear, lack of movement, excessive heat/cold, lack of sleep are just a few of things that increase pain and make it more difficult to cope mentally. Work with your care team to address sleep issues right away! Just knowing that certain things can increase pain made me much more prepared to deal with it. It is impossible to avoid all things that increase pain but having a "pain plan" in place ahead of time helps. My pain plan is this:

1. close my eyes and think of times of happiness.. try to really think about small details of a vacation (such as what you were wearing) or something else fun you have done.

2. change your surroundings.. even just walking outside/inside and enjoying a different view for a minute helps distract the mind from pain or feelings of hopelessness.

3. call a friend and ask them to tell you a story or share what is going on in their lives. Don't feed your pain by sharing your crisis.. remember you are trying to trick your brain into not feeling the pain so really focus on the other person.

4. take an epsom salt soak
5. go for a walk
6. read an encouraging book

Having a plan really helps.

Try to get into the mindset that this disease will not define you and by doing so you will find ways to work around any pain/limitations it may create. The mountain (CRPS) may be in front of you but it is YOUR JOB to find a way over it, no matter how hard it may be. Never give up!!

Wake up everyday saying "I will defy all the odds"!

God Bless,
Tessa