So, the inevitable has happened....the toes on my left foot are spreading. No one has answer for me and no amount of PT has stopped it. I also cannot have a run of the mill pedicure, because I am having severe spasms when someone touches the bottom of my foot. Shoes are becoming a problem so I am wearing Crocs or Birks. I miss my high heels and my once beautiful legs are becoming so ugly. I have started getting tattoos on my right leg to cover up the ugly knots and color changes. People ask me if they hurt and I tell them that the pain I live with everyday is WAY worse than getting the tattoos. The endorphin rush is amazing and holds my RSD pain at bay for at least a day. I haven't gotten any tats on my originally affected leg, so I may start with something small,so we'll see how it feels soon.

I can so sympathize with you about your leg. For 2 years now my right leg has been affected. I did try one LB which had no impact. The knots and varicose veins are gross, and it is much fatter than my left. My leg has also started to become increasingly painful in spite of a ton of a ketamine infusions. At night it burns like crazy under the covers when I am trying to sleep, even while it is freezing cold. Such a crazy feeling...

I am fortunate that my foot is not that bad, but I have consistently walked quite a bit and it is also not the site of my original injury (my RSD started in my right shoulder). My PM doc has suggested warm water PT for my leg. do you have a facility with a therapeutic pool near you that you could try? They really feel awesome, especially if you have cold RSD.

good luck...Sandy

Hi Cindi1965,
I have the same problem with toes spreading too...especially the big toe to the other toes. I have a separation between those toes that you can really notice. And I have another toe (second from smallest toe) that is so curled up and atrophied it is terrible. It is like the middle three toes are curled together. Strange. I noticed it about 3 years into rsd full body. My entire body is atrophied especially my right foot where the trauma all started. I too used to wear heels and had pretty decent legs and now I feel like my whole body is a mess and I had ketamine iv done in Sept 2010 which turned into a nightmare and made me worse so sometimes I look at my body (when I can dare get in the tub because the air just kills me) and I think "Wow, I worked my whole life taking care of my body and now it is a mess!" Before this mess, I had taken yoga and was in the best shape of my life...I was getting ready to sign up for kickboxing classes haha. I never took any meds...maybe a half Tylenol if I had a bad headache or something and over the years I have tried just about every med at least once to see if it would work. The only thing I can say is to keep your body moving when you can. For example, it is almost midnight and this is the best time for me when I can move the most so here I am online and I just cleaned the dishes in the sink from all day. I do stretch my foot/ankle all around but I haven't found anything to take all the atrophy away. All my muscles are wasting away. It is sad. BUT I keep in mind that God has a reason I don't know to keep me like this. I try to laugh at least a good belly laugh once per day and keep on going. Today was a good one...someone said to me "Oh, Wed we are going to have rain." I said you don't need to tell me that since I am at least two days ahead of the forecasters haha. Sat my foot/leg felt like they were going to explode all day. It about drove me crazy. I just love when people say the stupidest (if that is a word) things to me. Ya gotta keep laughing (or else we cry). Take care and hang in there.
kathy d
P.S. I think it is amazing you are able to get tatoos!! The sound/vibration would set me through the roof. I always wanted to and planned when my son turned 18 to get a small one with him but then rsd came along. He is now 7 tatoos ahead of me haha. Oh well such is life.

Thanks so much Sandy...the knots just drive me crazy...my veins are showing up more and more. Now that my family sees physical changes, they are way more sympathetic. It's sad that it took three years before they caught on and knew it was for real. I have had to give up my life's work teaching autistic kids, but I have found my niche on Ebay selling charm bracelets. I would love to make RSD bracelets, but wouldn't know where to sell them at. I may try to sell them on Ebay and give part of my sales to research. First I need to get my Ebay account built up.