I just so happened to have my 'land' PT evaluation today and she started a desensitization program with me. Here's what she said:

Select 3-4 fabrics (a satin, something fluffy (cotton ball/soft fleece), cotton fabric, etc)
Gently move the fabric up and down the affected area for 30 seconds (she said the usual was to start with a minute but since my pain is so out of control she wanted to be gentle)
Change to the next fabric and do the same, and so on.

My CRPS is in my lower leg, so she moved the fabric from knee to ankle to top of foot and back up to my knee.

So do all the fabrics in the same day or progress to each fabric weekly?

Did she say to not touch the area otherwise?

How many times per day?

Thanks so much!

Each fabric one right after the other for 30 seconds (each fabric). She wants me to do that daily and then will work me up to 60 seconds. She did not mention not touching the area otherwise. I imagine any desensitization you can do beyond a few fabrics/30-60 seconds at a time would be a good thing.

For me fleece soft very fine soft baby fleece worked at start, I could tolerate it for a few mins at a time, I can now 3.5 years later tolerate a sweatshirt but it has to have soft soft lining. I can tolerate touch as long I see it coming. Once I got shed to something I moved on to another soft thing. Water spray is still difficult in shower. Sometimes when something cold touches me I just wanna cry, or a unexpected touch. I flinch a lot. I stare off a lot to refocus n breathe through it.

I used a soft face cloth to keep the shower from directly hitting my feet at first, otherwise I screamed from pain, then I gradually rolled up the cloth, but I also lessened the force of the shower.

I used cotton balls dipped in DMSO lotion and MSM lotion. I would slowly stroke my feet and ankles while I watched TV. I suffered through Graston sessions with a PT. They were agony and I don't recommend them, but I think they helped desensitize.

I found that my sheets were too rough, so I replaced them with a finer weave. I had to give up jeans, because the weight and the feel of the fabric was unbearable. I could not wear anything restrictive, even if it was not near my feet. I had to be completely unrestricted, because anything binding on my body seemed to make me more sensitive when I was working on my feet.

A technique that helps me is breathing out "into" the pain and totally immersing myself in it. Over a long period of time I learned to breathe out and slowly relax into it, gradually allowing myself to feel it all. Once I felt it all, the guarding mechanism released and I started to make progress.

My spouse used to try and gently massage the affected area and I couldn't take it without hitting the roof. So I started self directed, where at least I had some control over it. Mirror therapy was a big help here. Seeing my foot in the mirror as if it were 100% normal really calmed my nervous system.

Thank you. I have pain all over. It is painful to be touched anywhere and it is painful to wear clothes.

The pain is instant when touched, so I am not sure about any guarding mechanism.

I have been doing yoga deep breathing for several months now. I have someone from India help me with technique over skype. It helps with bad thoughts, but not with pain relief.