Hi everyone.

I come on to read every so often but have not been a frequent poster because after aggressive treatment following my initial diagnosis and getting started with my pain specialist, (series of LSBs and finding the right combo of meds).. I had been doing pretty well for a while. I have CRPS type II which I developed after my knee was galloped over by my very large, fire breathing, but well meaning young horse, which crushed my saphenous nerve. Anyway I had been doing quite well.

Riding is the thing that I love to do more than anything in the world. As much as we know how scary it is for us to sustain any new injuries, I had to ride again as soon as possible. I was careful.. I did all of the right things.. I built up very slowly. I have decided to push forward and try as hard as I can to keep going with my sport for as long as I can, because nothing makes me as happy as it does. (Particularly the relationship that I have with my young horse).

To get to the point..
A month ago now, I had a stupid fall off someone else's naughty horse. I landed almost standing, and hit my heel pretty hard and sprained my ankle. The timing was horrible. It was a week before my move and 5 days before a job interview. I muddled through both, but the move was a disaster to my ankle and foot. My foot blew up.. to put things in blunt terminology. The pain went from a 5 to an 8.. The color changes were profound.. first my toes purple (typical), then my whole foot purple and toes black, then an entire foot swollen & purple and pitting edema throughout my whole calf.

To fast forward.. it is weeks later.. things calmed down after the move when I could rest a bit. I saw a foot/ankle surgeon within my ortho practice who was extremely dismissive. As soon as I mentioned that I had CRPS (after he did not even READ my chart, he just wrote "CRPS" in caps on my chart, and told me to do PT, follow up with my pain specialist and see him in 3 weeks. He barely examined me. The only helpful thing that he did was give me a genutrain brace, just supportive enough that it really helped the swelling. I can't afford formal PT right now.. so did weeks of my own ROM and strengthening until the ankle felt pretty good and I was walking better, color changes were not happening as much.

Things felt good enough that I tried riding again. I guess I went into it with the mindset that I often have with approaching PT or riding or anything painful (you are not really injured.. it is just PAIN for no reason). I pushed through and did what I love.. it hurt pretty bad, but seemed do-able. Pain immediately afterward and that night was increased a LOT... which I tried hard to ignore. Each ride after this, has been more and more painful to the point in which I was fighting back tears yesterday while riding and had to keep stopping. The pain in my heel is very unusual.. alternates between feeling almost numb at times and the most painful, stabbing pins & needles I could ever imagine. There is this shooting pain going up the back of my ankle.. and the whole back of the foot feels like it us just being crushed.. it is so bizarre.. NOT like my knee pain which is true causalgia. The symptoms in my knees are coming back, and my hand as well. It is just attacking my.

I don't know how to cope. My life is completely at a stand still.

My meds are flat out NOT working. I am seeing my regular pain specialist next week as well as a second opinion.

I'm really, truly sorry for writing a novel. I guess I'm looking for advice. When I go to these doctors.. perhaps there are things that I should be asking for?

I found when I was going through similar trouble (spread and worsening pain) and seeing multiple doctors that it really helped me to write out a couple of things and bring with me:

1. A detailed list of all my symptoms, what triggers them (if anything), when they occur (all the time, several times a day, etc).

2. A timeline of my illness and when certain symptoms/pain started up.

3. A list of questions and things I wanted to go over with the doctors.

The main reason for doing this is so that I don't forget anything. Some doctors (most actually) make me feel pretty rushed and like I don't get the chance to go over everything. Or...I will get caught up and sidetracked by something else the doctors says or starts talking about and then don't get a chance to ask my own questions or they questions completely leave my head. This way...I have the list right in front of me. Same goes with symptoms...especially when you have so many going on at once it helps to have them all listed out so I don't forget about any of them which might be important for the doctor to help me.

Another thing that can help is bringing someone with you if you have anyone that can fill that role. It generally puts doctors on their best behavior and they will be less likely to blow you off when they have an audience. Sad that this is the case...but often it is.

I have type I...so my symptoms sound a lot more like your second set...especially the crushing pain. That is the worst I get when I'm in a flare...like the bones are in a vice and being crushed. The stress of this new spread is likely causing your other areas to act up. You need to take it easy, but continue to keep moving. I know the horses are important to you but you may need to take a break from riding for a little while until you sort it all out. Still visit them and make it your goal to get back to that (because you WILL) but focus on doing what you need to right now to get yourself there.

Be honest with the doctors and tell them what your goals are from treatment. You want to get back to your riding, you want to get the pain to a manageable level, etc. Really think about what you WANT from treatment and then make that the focus of what you do in terms of treatment. My main focus with my doctor was to get a specific set of symptoms under control so that I could FUNCTION in my life again. I was less focused on the pain because I had tried many meds and treatments and they just weren't working. When I thought about what would make me happy...it was having my life back and the pain was not preventing me from having that...it was the other symptoms that were keeping me back from returning to my life, my job, etc. What you want first and foremost from the treatment can have a great impact on the approach you and your doctor take in treatment. So really think about it and put that on your list of things to go over with the doctor.

Good luck and take care. I hope they are able to do something for you. If not...move on and find someone who can.

Hi Aascvt,

I too ride! Although that's my daughter in the profile pic on one of our track horses. I developed crps in my ankle from surgery this past march. It has been getting better slowly and the only thing that helps keeping my flexibility is riding. I went today for a nerve block but they could not do it because I took fish oil this week (bad instructions from Kaiser permanente). One thing I brought up to the Dr. today was how can I tell how much of the pain/swelling etc. was caused from crps and not surgery and the neuropathy I already had?? Did not get much of an answer...except that the nerve block would NOT help the other neuropathy, which I thought was strange (maybe Mrs D could chime in on that one!). From the description of your pain, it sounds like it could also be a more acute injury to your heel. The pain I had from a heel spur was horrible! It was a bad burning/stabbing/searing pain-lucky it went away but took probably 6 months and not doing my routine 5 mile walks-

Sorry to hear that everything is flaring up. Wish I could offer better advice but at least I am here for support!

Judie