Hi Janet and welcome.

Before you have any more procedures done, I would get yourself to a pain management specialist asap. This can be an anesthesiologist with a specialty in pain management. There are a number of good ones in Florida. This specialist should treat you if you have crps and should direct any procedures from here one to minimize the risk of spread.

Sorry to make this so short, I have to run out to a doctor's appt. Good luck.

Thank you for the welcome and sugestion re a Pain Management doctor.

I do have a Pain Management doctor who has been giving me shots in my back for 10 months for chronic pain. My hand surgeon wrote him a note asking him to evaluate my hand. He concurred with what my surgeon was doing, and did suggest a lidocaine ointment to help with the pain.
He also said I might consider blocking the nerves somewhere in the neck area. He no longer does that, but another doctor in the practice does. The nerve block could not be done when he mentioned it, as I was having the epidurals in my back at the time, so I would have had to wait awhile. My hand surgeon agreed on the lidocaine, but thought a lidocaine patch would work better than the ointment.

He had me apply it at night as I was waking up in pain during the night. He also prescribed 25 mg of Amitriptyline at bedtime, which works like a charm for me.

I think it's a good idea to see if my hand surgeon will release me to the care of my pain management doctor. Sure makes sense to me.

Janet

Daughter had RSD left leg about 12 years ago.She was 14. Hit back of leg on diving board, small bruise, next day called to school and leg had "blown up" to twice normal or more.

She had epidurals, pt. tens, 3 day fentanyl infusion in hospital etc. until a doctor friend informed me his partner had started a new pain clinic.

New doc had her on a portable infusion unit infusing fentanyl into her spine 24 hours a day. One week on. One month off. She did this for two years and the "monster" always returned.

Sometime after those two years the last infusion was followed by complete remission and the "monster" has not returned.

Thank God she did not become addicted.

For what it is worth!!!!!

Hello Mom in Pain,

I'm a mom - age 58. After more than 30 years with CRPS, IvIg was my life saver. I'm pain free and drug free now! No more involuntary muscle twitching and cramping either! I receive 20 grams of Privogen every 21 days - sometimes at 18 to 20 days, depending upon how I am feeling or what is coming up in my life.

Iv glutathione helps too.

Before IvIg, Lidocaine patches were a great help. They are soft and kill nerve pain. I used to cut them up for smaller areas...wrap them around fingers, etc.

Sleeping on earthing sheets helped me too. See www.earthing.net. At first try, the sheets hurt. I tried again and found that after about 15 mins, they were helping make the pain decrease.

Gyrotonic and gyrokineses movement therapy helped enormously. The type of movement helped take pain away. It is used in hospitals in Germany and Japan.

I found that movement of the right sort made a huge difference. Since my feet were too painful for much standing or walking, I had to find ways to move that did not involve being on them. Lifesavers were riding horses, gyrotonic, and a stationary bike with a comfortable (well, we know that is a relative term for CRPSers) seat.

I still wear the soft, bamboo clothing I began wearing all the time when I was in pain. It doesn't wrinkle, dresses up or down, and it is as comfortable as the best pajamas. So, I sleep in them too. See www.yaladesigns.com.

I tried to NOT travel by air, because I hurt much more for months afterwards. Since recovering, I've not yet stressed my body with air travel. When I used to fly, I always went in a scooter and wore dark glasses to reduce the neural stimulation by lights and movement in the airport.

Wishing you success in healing!!!
ambika

We once saw a survey that people with CRPS in their feet wear CROCS instead of shoes. Ever since my daughter stopped wearing shoes and socks, and only wears traditional CROCS (with arch support) she has reduced pain in her feet and it has helped tremendously. She has not worn socks and shoes for 2 years, even in winter because they make a big difference in pain reduction. It is not easy to deal with winter in CROCS but it's worth it to reduce her pain, swelling and other CRPS symptoms. I wish everyone the best and it is so nice that we can all talk and understand each other.

My faith in the promises of God to heal me is what sustains me.

If you still drive, drive something you're actually are comfortable in. I know that the price at the pumps are up there but when it comes down the brass tacs, you're the only one that matters. I'm a big dude, so I drive a truck. I lifted it slightly so it's easier to get in and out of. and I swear it's like driving around a la-z-boy lol!

Lose clothing. I have RSD in my right calf area so I don't wear pants. Shorts only. Usually cargo and something that isn't to restraining like khakis I look goofy at weddings and funerals but whatever lol

Comfortable shoes! I like Red Wing myself. They have some nice inserts as well. I know that they're kind expensive, but they last for*******ever.

Hope this helps!

J.

I hope some of these ideas are beneficial for you RSD. I've now had if for 11 years, and I can't stand much of anything on my left leg, especially lower leg. but the cold and the hot-heat, and the wind, really hurt me. My dr. just retired and need to find a new Dr. in MI. can't seem to find a place to ask for such. But jump on your Rsd fast with a good neurologist that specializes in RSD

Welcome toni c.

Confession: I didn't read all of the posts on this thread (I did read most of them tho)

Being newly diagnosed and trying to absorb every bit of information I can find, I LOVE this!

For me: Aloe infused socks are THE BEST! Of course, I only wear one on my left foot. Side note: being in a brace fro my knee fracture, my left foot felt 'cold', so I would have my daughter put a sock on it. Then I was diagnosed with peroneal nerve palsy. I knew this had to be a factor in the 'col' feeling but I still thought wearing the sock was psychosomatic. Until I bought an infrared thermometer. I think that was what led me to the possibility this was CRPS. I'm getting used to the odd looks when I walk around in one sock...

High thread count sheets are the best! Combined with soft pajamas...Heaven!

I haven't tried the epsom salts yet but I plan to.

I am interested in what everyone does for muscle spams...and muscle cramping. Anything???