Originally Posted by catra121

This is my very first post here and I just found this board a couple of hours ago. I have been reading like crazy and I had what I felt was a horrible experience today with my current doctor and the need to "vent" to people who could relate, understand, offer advice...whatever.

This all started about 6 months ago when I banged my foot on a steel plate at work and had several boxes fall on my head. Obviously the first concern for everyone was my head. I could hardly move my head at all side to side, up or down for a couple of weeks. But I kept telling the doctors how much my ankle hurt. They kept looking at my foot and saying it was fine. Finally I convinced them to start me on phystical therapy, but when I got to PT I found out they only sent me there for my neck. I forced the issue and we split the time between neck and ankle, spending more time on the ankle as my neck improved. I kept telling them how much my ankle hurt...I couldn't walk. They said put MORE weight on it, try to walk without the crutches. Did that and pushed myself to the point of not being able to walk at all because the pain was too intense. Mind you, I was working this entire time as a retail manager, struggling to try to do a job where I normally spent 9 hours at least on my feet a day without walking more than I could handle.

After 2.5 months, they said they didn't know what was wrong, couldn't help me, and sent me to someone else. During this time, while trying to get ready for work one morning I stumbled a little and put full weight on my left foot (the bad one). Passed out from the pain and ended up spraining my left wrist. Got a referral to an orthapedic. Wrist got better, ankle not at all. Got a cortizone shot. No help at all. Referred me to a pain management specialist, who I am currently seeing. He is the one who first said I had symptoms of RSD.

All this leads to my current frustrations from today. I FINALLY got approval from work comp to get a lumbar sympathetic block and I got it today. I was so optimistic...after a month of waiting and being put off I would finally get this procedure and that would "cure" my pain. Err...WRONG. It didn't help with the pain at all. I actually have more pain at the moment. I had read a lot in the past month or so and I was aware that there was a chance that my pain would not go away or that even if it did it might only be for a short time. The doctor didn't tell me any of this, I had to look for it myself. But whatever...I can deal with that. It's frustrating...but I can deal. I was all prepared to ask him what the next step was and where do we go from here. My frustrations...the big ones...come from the doctor himself and his attitude.

His first statement when he sees me today prior to the LSB is about how I put him in the middle of this nasty litigation. Um...I'm receiving work comp benefits and I have a lawyer and there has been some nastiness towards me...but what on earth is he talking about? He's the fricking doctor and he is responsible for my care and making me better. The "litigation" as he terms it has nothing to do with him. Okay...weird comment...but I tried to ignore it and he talked about my pain and then went into a description about how this is a really "formal" procedure with pictures taken by the CT machine, etc. Again...it's all about the lawyers...not about my care or how this is supposed to help me. Whatever...go in for the procedure (which they completely knocked me out for).

Wake up and they ask how my pain is. It's the same. I move my foot up and down and OH YEAH...it's the same. Just as bad as ever. So they take me to the room to recover. What's your pain level they ask. Same as before. Doctor calls the nurses on the phone and when they tell him that he says he will be right down. 30 minutes later I finally see him and he goes over with me how the procedure was "textbook" and I have all the signs that it "worked" so now he's not sure that I have RSD. He says he'll see me one more time to try a cortizone shot in my ankle but then he's done with me. DONE WITH ME! OMG! I was just shocked.

I finallt have a doctor who gives me a diagnosis for my pain and all these weird symptoms I have had since the beginning. Leg is cold from knee down on my bad leg (all the previous docs ignored this and said it was just a circulation thing), hurts to wear a sock, is impossible to wear a normal shoe, tiny vibrations hurt like all begeezes, can't sleep, have burning pain all the time and deep pain regularly. I know these are not all the possible symptoms for RSD, but I don't think you have to have all of them. If this is not what I have, then what's wrong with me? Something is. And work comp forced me to go for an independent medical evaluation where they picked the doctor and he agreed that it was CRPS. Now, after apparently being harrassed by work comp lawyers and such my doctor is "not 100% convinced" and he's done with me. But in the next breath he cautions me that if I see a doctor and he wants to cut me open to surgically fix the problem that I should absolutely refuse. If he doesn't have a stong belief that I have RSD, then why would he say that?

I have been crying now for a couple of hours because this is so frustrating. I have read up on RSD...I believe without a doubt that is what I have. I am still going to PT (although at a different location than the first 3 weeks that I did at the first hospital because that was useless) and I will continue to go to PT. The doctor even wrote me out a perscription for continued long term PT. I will continue to try to push through the pain, but I need some relief, no matter how small from the pain. I have lidoderm patches...they help a little. All the meds I have tried do not help at all. Electonic stimulation at PT seems to help...but it helps less and less each time I go.

I want to work with a doctor who will help me achieve my goals of overcoming this condition so that I can fuction at least semi-normally. I have been off of work for a month now. I want to go back SO much because I miss it. I miss feeling like I am accomplishing something each day. I miss the social interaction. I truly love the work that I do and I just miss doing it. But there is too much pain and I cannot stand/walk for more than 10 minutes at a time...and even that is hard. When I get in my car after PT...I cry. I can't be that way at work. I can't run a building and be responsible for all the people in it when I can't even think straight because of the pain. I can't do the demanding physical parts of the job. So what am I supposed to do?

I just feel so distraught to have another doctor who has failed me. And what's more upsetting is that I feel like this is someone who could help me but who won't because he doesn't want to deal with the work comp people. I have a hard time standing up for myself when I am with a doctor, or anyone that I don't know or am not comfortable around. But I really want to yell at this guy and tell him to grow some fricking balls and just tell whoever is "bothering" him about me that HE is the doctor, not THEM, and that they are not qualified to question his medical decisions and assessments. They got another doctor to "assess" me and he confirmed my doc's disgnosis. So that should be the end of it. Treat the patient, that is his job, and he should tell these other people to just buzz off. Of course I CAN'T say that, it's not who I am, but I WANT to. He mentioned some other doctor who I believe he is going to refer me to. I think before I go in to see him this "one last time" I will try to see if there are any good RSD docs in the Chicago, IL area and mention the possibility of a referral to them.

Sorry this was so long, but I was just REALLY frustrated. Even just tryping it all out makes me feel a little better. Tomorrow I will try to regroup and get all my thoughts in order to figure out where to go from here. Bottom line is, I do not want to give up on myself. I know that is crucial to my recovery and I have to keep reminding myself how important it is. Thanks everyone for the opportunity to vent out these frustrations.

Originally Posted by catra121

Thanks again for the continued replies. I have been reading up on as much as I possibly can on different possible medications and treatments so that I can go to my next doctor's appointment armed with questions and different things to try.

I think PT is going pretty well and I have gained a lot of the strength back but I just can't shake this pain. And I feel like I have hit a wall in PT where I can't quite make that next step beyond where I am at until I get this pain under control. What I am doing now brings me to tears, which I try to hold back until I am alone in my car after therapy because I am too embarrassed to cry in front of people I don't really know. This past Friday was the closest I have come to breaking down in PT, but I am trying very hard to stay positive.

I am totally committed to getting back to my normal life...but I know that means a lot of hard work on my part and good docs and physical therapists who will help me get there. I feel like if I could just get this pain under control I would be able to overcome this hurdle. It helps to hear that I am not alone and I feel like I am really lucky compared to a lot of the stories that I have heard of what other people are going through. Just goes to show that things can always be worse.

Thanks again for the support.