Hi MomInPain,

I am SO sorry to hear that your RSD has spread and really hope you get some much-needed pain relief real soon!! Please know that we are all here for you and will try and help you in anyway we possibly can! I DO understand what you are going through ... my RSD started in my foot and then spread to my knee in less than a month and then spread to my arm about 3 months later and I was REALLY scared and just didn't know what to do!!

The best advice I could give you is to try and move your RSD limbs as much as possible! I KNOW it hurts a lot but that will probably help you the most in the long-run and will hopefully allow you to keep normal function! I can't move my RSD leg at all as I have Dystonia which is a severe complication of the RSD and I would hate to see you having to deal with that through no fault of your own!!! Start off by doing some gently exercises and make sure you keep touching the affected limb and then gradually build the exercises up as and when you are able to!! Do you have Physical Therapy?? If so, they could possibly help you and give you some exercises that may help. I have had PT since a week after I developed RSD (although it took 4 and a half months for me to get diagnosed) and it has helped me a little - the pain is unchanged BUT I am now able to walk short distances where I wasn't able to before!!

As for cushoning your RSD leg, i'm not sure if that would affect the hypersenstivity. I couldn't wear a shoe at all when I developed RSD because the pain was sooo bad but when I went onto the Intense Physical Therapy Program, they MADE me wear a shoe and sock 24/7 to try and get rid of the allodynia. The hypersenstivity still hasn't gone completely and my foot is extremely sensitive near the arch of my foot but it is a little better than it was. I was told by my PT's to make sure I keep touching my foot as I was in pain all the time whether I was sat down doing nothing or touching it so I may as well do something and it made a lot of sense to me ... it was extremely painful and I felt like giving up a few times but I do feel it helped me a little! I think, if possible, it would be best for you to touch your affected limbs as much as possible to try and at least stop the allodynia from getting any worse.

I really hope that the med change helps you. I have been on Amitriptyline before and I didn't respond very well to it at all - my pupils went extremely dilated and I fell and it caused the RSD to spread but everyone is different and hopefully it will help you and give you some much-needed pain relief!! I hope the epidural helps you also, I have read lots of positive stories about them and I have had a Ketamine epidural and it took my pain from an 8 and a half to a 5 even though it only lasted about 6 hours!!

I'm thinking about you and please try not to panic too much - I know it is hard because I have been there and still feel like it a lot now but stress will only make your symptoms worse!!

Thanks for the update and please let us know how you get on with the meds and epidural when you can!!