I was blessed with being diagnosed early. Because of that, I'm trying to make some decisions on treatments based on starting at the beginning, like most do not.

I'm in PT and being treated with vitamin C and blood pressure meds, which I'm reconsidering because they give me a very bad headache.

I know that this is a use or lose disease and should push through the pain, but there also seems to be a pain limit.

My PT gave me a week off with the acception of desensitization at home because it seemed like the PT was aggravating things.

My question is, how much pain should you push through? Will it do damage to go to far?

I ended up crying this week because of the pain which is unusual for me. I have had 3 kids with no drugs so I know my tolerance is high. Part of me wants to see how far I can push it, like going over a hill...if I can get over the rough part maybe I can force it to go away. But the other part of me wonders if I am risking permanent damage.

Personally for me I don't push it too far past about a 6-7 on the pain scale. I push through some pain but if you go much further you have to "get ahead of the pain" with medication which is HARD to do with crps. Doing something (desensitization) is better than doing nothing, but letting the pain get too out of control can cause severe muscle spasms, swelling, things that the body will do in response to such severe pain and then, you end up being unable to do anything.

I can tell you desentizing was the worst for me. It would make the pain so much worse. You sound like you are a strong person at heart. But I have to agree with Jim's Girl. Don't push yourself so hard that you are crying. Even though you are not on pain medication I would consult a pm dr.for other early therapy's such as blocks. Blocks helped me then I could work on the desentizing during the period the blocks were working.

Well...for me personally I push through a lot of the pain and it is not unusual for me to push myself up to a 9-10 throughout the day. BUT...you have to balance it and know your own limits.

Everyone is different so what has worked for me doesn't work for everyoen...but I think of it this way. There is nothing physically wrong with my ankle (and other RSD areas). So walking on it will not make it worse. I am not "reinjuring" the ankle by walking on it even though there is pain. It is my nervous system that is damaged, not my ankle. The one limit I impose on myself with regards to pushing through the pain is to not push so hard that I can't function the next day, the next hour, etc. and this is because you need to KEEP moving (not move for an hour and rest for a day or two). Instead of starting with more advanced stuff just because you can push up to it for short periods, I started with very small things like heel/toe raises, leg lifts, drawing the alphabet with my foot, etc. I made a checklist of all those exercises and then made myself do them twice a day each. This was easier than trying to do them all together like you do in therapy. By spreading them out I could rest in between and balance the resting with the therapy. We gradually increased the difficulty (my therapist was wonderful and she pushed me but just enough that we kept moving forward at a steady pace). After several weeks of seeing her twice a week we switched my schedule to once every two weeks and at those sessions we would go through the progress I had made, add some new stuff, and then at the end she would show me the progression of the exercises so if I felt up to it I could go to the next step on my own. This only worked because I faithfully did ALL the exercises every day. We all have bad days but when I was in a bad flare I would revert back to the beginning exercises until the flare passed and then go back to where I was at before. I never took a day off but I made sure that I never pushed myself so hard that I couldn't function the next day. It took months and months but when I started I was stuck in a wheel chair and couldn't stand or walk at all and now I can be on my feet for hours at a time. I do need to use a walker but that's SO much better than where I was before.

So physical therapy isn't a quick fix by any stretch...but if you approach it methodically and with a plan you can see great results. Unlike physical therapy that I have been through for other types of "injuries" I think progress shouldn't be measured by how fast you advance to the more advanced exercises but rather your steady progress to being able to do the exercises all day and getting the fucntion back. Does that make sense? I know sometimes I talk myself in circles and it can be hard to understand.

Desensitization was difficult but for me was very worth it. Again...high pain levels in the beginning but gradually you do begin to normalize the sensations and reduce the pain enough to function more normally (in my case I was thrilled to be able to wear "normal" clothes again).

Take care and good luck. If you have any questions, let us know.

I have noticed muscle spasms starting too. I really appreciate everyone's input. There is so much information being thrown my way, but hearing it from people that deal with it daily makes wayyyy more sense.

That is funny because this is exactly the way I have been thinking about it. Almost as a mental game and asking myself "how can I trick my nerves?". I'm very big into medical research, always have been, and I was reading this week on how much of a mental deal CRPS is. It made a lot of sense because it talked about how your so exhausted at the end of the day because you are trying to create the mental block and when you have trouble sleeping it is because your mind starts to relax, getting rid of the block on the pain.

All my doctors are stressing therapy a lot. I have a therapy bag at home that I have put together so when I sit down to watch TV I just grab it a do a few things. I guess I need to be more consistant. I know my family will help with that.

My 13 year old is very interested in my "zombie foot" and the different colors and shapes it changes to. Last night I was talking to my husband about dealing with this forever and my son said "you have this forever?!?!". That was a little heartbreaking to see his reaction. I guess I never explained that part to him

I don't know if you have tried this in therapy or not...but when I was doing outpatient therapy they used stim (TENS) and heat on my ankle and it helped the pain a lot. When the pain got much worse and spread a year later my at home physical therapist was able to get me a portable TENS unit and it has been a miracle for me. I'm not taking much in the way of meds...nothing for the pain besides the lidoderm patches and I also am using clonidine patches to control some of the other crazy symptoms). Anyway...the TENS by itself has helped much more than the meds ever did. Doesn't work for everyone but I thought if you could try it in therapy and if it works then you could get a portable unit that you could wear throughout the day. Once I got this it was much much easier to do the physical therapy.

I'm pain free in warm ocean water and nearly so in warm pool water. If you haven't tried warm water PT, I highly recommend trying it.

Jenn, since you are so newly diagnosed please consider a trial of tDCS. tDCS addresses the root cause of CRPS, is non-invasive and may be used with other treatments. Additionally, it has very few side effects and is not costly.

I do use the TENS at every PT appointment. It seems to help, but I've only been in PT 2 weeks. I never thought about getting one to take home. I may review that with her and my dr to see what they can do for me.