[jennq78]

I am thankful that my dr went out on a limb and thought about rsd. I had never heard of it and was questioning him. My foot has continued to get worse

I started PT last week. She saw my foot and immediately said it was definitely CRPS (she said RSD was the old term ) and that we were going to "beat it". She has personally treated 3 cases that were in the beginning stages like mine and she has not had them come back because of remission.

We are attacking it pretty fast and doing all types of therapy. My color is getting better overall, but I still have purple and red occassionally. Today it swelled up again and I'm feeling the zing along with pain that is worse than it has been in about 2 weeks.

Is this normal? Will it get worse before better even if it was caught early?

I have a follow up with the ortho surgeon (dr that dx) next week so I'm hoping for more answers then, but figured experienced people could answer better.

[Dubious]

Originally Posted by jennq78

I am thankful that my dr went out on a limb and thought about rsd. I had never heard of it and was questioning him. My foot has continued to get worse

I started PT last week. She saw my foot and immediately said it was definitely CRPS (she said RSD was the old term ) and that we were going to "beat it". She has personally treated 3 cases that were in the beginning stages like mine and she has not had them come back because of remission.

We are attacking it pretty fast and doing all types of therapy. My color is getting better overall, but I still have purple and red occassionally. Today it swelled up again and I'm feeling the zing along with pain that is worse than it has been in about 2 weeks.

Is this normal? Will it get worse before better even if it was caught early?

I have a follow up with the ortho surgeon (dr that dx) next week so I'm hoping for more answers then, but figured experienced people could answer better.

I don't know but if you are early on, most clinicians would consider a series of sympathetic blocks (see similar post).

[catra121]

RSD is one of those strange things that really doesn't have a set way that it deals with things. Some people get worse before they get better...some get better and then worse...some just steadily get better...it just is what it is for each individual. I think that's what makes it so hard for people to understand...there really is no "textbook" case for RSD because we all respond so differently.

BUT...I can tell you that physical therapy will be painful. One of the best things I did for myself in terms of therapy was trying desensitization teachniques and those are SO painful in the beginning before you gradually start to normalize the sensations. But you have to do it if you have bad allydonia or you will get that pain anyway from just normal daily stuff like wearing clothes, etc. Same goes for the more physical types of PT. It hurts really bad to move in the beginning...but the more you move and get function back the better you will feel. Where as the less you move and the more you immobilize...the worse the pain and function will get. So strange, I know, but keeping these things in mind helped motivate me personally to keep pushing in physical therapy despite the pain. For me, it was all about the long term goal of getting better and back to "normal" vs. just being in the moment and giving up because it just hurt too much.

Sounds like you have an experienced physical therapist you has had success in treating patients with RSD...and this is very good. But as I said...not everyone responds to all of the same things so if a particular thing is too hard or you are unable to do it don't give up. There are usually several different things you can do to get the same effect so just start really small and easy and then progress up to the more difficult exercises. It's hard sometimes to know WHEN to push yourself and when to rest...but what you want to see is gradual progression consistently in a positive direction. What you don't want is to push too hard to do something, do it, and then not be able to function for a week because of it and then you are set back to where you were before. Baby steps. Which is harder than it sounds because if you are anything like me...once you are able to do SOME things you want to be greedy and do EVERYTHING and then it's easy to hurt yourself and then have a setback.

But if you are early on in this then you have a pretty good chance of successful treatment. Good luck and let us know if you have any questions or even if you just need to vent. Take care.

[alt1268]

Welcome to the Forum. sorry to hear you have been diagnosised with RSD. It can sometimes be overwhelming when you first learn about the disease and it can be scary. It sounds like you have a good PT with experience. Some people have gotten relief and gotten better with PT and blocks while others haven't had any relief from anything. You have a better success rate of recovery early on.
Feel free to ask questions, rant, rave or just participate.

[cindi1965]

So very sorry you have this hellish disorder and I have to tell you that everyone is different and ALL doctors say they will help you beat it and I sincerely hope that CAN help you. PT is very painful, but you will have to continue for a long time. I loved the warm ultra sound thingy, but it only helped for a while. I also have Cerebral Palsy and I think that's why mine progressed so fast because I have never walked correctly.

Prayers for you!
Cindi

[jennq78]

Thank you for all of yor input. I am using this forum a lot to review opinions, tips and everything else. I was diagnosed so early that I didn't have much pain to start, but it's creeping up on me extremely fast. I'm trying to keep a log of pictures and symptoms to hopefully help other people in the earlier stages since most people aren't able to get the opportunity of the early diagnosis like I was.