Also curious to know what you have tried.

Hello Chop,

Welcome to the site. I know how you feel and I have been to the giving up stage.
I have full body RSD from the top of my head to the tip of my toes including my lungs and heart. I hope you have a medical team that is helping you. I know it is difficult to find doctors who understand RSD. If you don't have a pain management physcologist find one. Mine is my safety net he helps me sort through the treatment options and legal matters.
Remove the negative from your life news on TV and friends who bring you down. Be sure and laugh watch funny things on TV. I have found walking in the water at the YMCA is a huge help for me. I get excercise and the cool water in the pool helps with the burning.
Again I say welcome you will find a great deal of support on this site.
Sbowling

Dear Chop,

You are a winner an winners never ever give up.

I truly hope their will be a break thru in your pain levels for you.

Hang in their. Roz

I know you're fed up, and you should be because nothing takes a person down faster than pain, but please don't give up!

Have you tried oral narcotics? Remember there are quite a few different types out there. Have you looked into getting an Intrathecal Morphine Pump? I just had my second one installed (my first lasted 5 1/2 years), and it has given me back life.

If you can't find a doctor who cares, then fire him. Now find a good one. Trust me, there are doctors who care, but please keep in mind a few things when you're meeting a new doctor.

1: Tell him your health condition and concerns, but never complain. Doctors hear people complaining day in and day out and nothing will shut them down faster then another person complaining about how there is nothing out there that will help and that no one cares. Instead let the doctor always do 95% of all the talking.

2: Keep an open mind to new ideas. If you don't, how will you ever hear new things that might really help?

3: Don't say you won't. These are death words. Instead always reply, "I'll try anything, so long as you think this is the best way to go." The more you trust a doctor, the more he'll trust you.

4: Don't ever take any medications in a dosages other than what is written on the script. Besides the fact that you'll run out of pain relief faster, it's also a way to ruin a doctor patient relationship really fast.

Please never give up, and I hope that tomorrow finds you feeling better. Bob.

Welcome to NT! I just wanted to say "Hello" and I too am sorry to see that you are enduring relentless pain. I have been there many times. I have full body CRPS and it will be 20 years in July. Personally, I have gotten breaks with Blocks, a sympathectomy and with Hyperbaric Oxygen Therapy. There is one thing that I have learned in life that has served me well and I'd like to share that with you. That is "Don't get Desperate, Get Curious". So, I think that you are on the right track, asking questions and seeking a repreve from your pain. Keep following that path. I truly wish I had a better answer for you, but you have gotten some really good advice from people that are experiencing or have experienced what you are going through. You are in my thoughts and prayers.
Di

Some things that have helped me are:

exersizing for several hours. When my pulse is above 140 bpm, the pain goes away. It takes a while for your body to build up to exersize for a few hours. But when your brain starts to manufacture endorphins, it makes you feel like a different person

thalidomide. I stopped taking it beccause the side effects include temporary and permanent nerve damage. I thought I might be developing nerve damage in my legs so I stopped taking the thalidomide. Thalidomide was more effective than methadone.

10% topical ketamine. Most doctors will not write you a script for this. After you find a doctor to give you a script, you have to find a compounding pharmacy. Many health insurance plans do not cover custom compounded drugs.

soma and namenda (an alzheimers medication) make methadone much more potent

Hi Chops,

Dropping by to check in on you. Please let us know you are ok.
You are in my meditation prayers.

Dew

I know the laws are different for everyone, but I am a medical marijuana patient in a state where I am protected (card carrying!). This works better than the narcotics and especially muscle relaxants. I have severe RSD that showed up overnight and is now in both legs and right hand . I am paralyzed completely in my right leg (curled up leg-tendon contracture). I had to quit PT as the pain was too great to tolerate. Look at the medical studies that NORML has posted as well as just listening to patients who are legal- (try You Tube). My state also has some doctors that will prescribe Marinol, but I have never tried it. The U.S. is also in stage IIIb/III trials on Sativex oral full spectrum cannaboid spray. This is legal in Canada and the U.K. Since it's already a marketed product, it should be easier for it to be approved. It's sad that politics get in the way of reasoned science .