Living with RSD

The fall of my senior year of high school (2005), I strained my hip flexor muscle in dance class. I went to pt for about a month or so and then returned to dance. My hip was reinjured in another dance class around February of 2006. I went back to my therapist, who told me that she thought I had torn something in my hip. So I get hooked up with a surgeon and had surgery in May of 2007. (It took awhile to actually diagnose that something was torn b/c the MRI didn’t show anything. An arthrogram ended up showing torn cartilage.)

So in May 2007, I had arthroscopic hip surgery to repair torn cartilage. They also found a torn ligament during the surgery so they took it out. Apparently it was one that once you stop growing, you don’t need it anymore.

In post-op therapy, my therapist noticed that I was very hyper-sensitive around the hip area. If anything touched or rubbed against my hip or upper thigh, I would almost fly off the table! I was doing well in therapy, except for the fact that I couldn’t shake the crutches. I wasn’t totally “crutch free” until October. I was in constant pain. Sometimes it was tingly, other times it was dull..basically it just hurt all the time.

When I finally got rid of those horrible crutches(!), it was still sensitive to the touch and my leg would give out on me easily. I couldn’t stand or walk for long periods of time. I had to lay down and sleep a certain way or I would wake up with pain. I would miss classes at school b/c I couldn’t even walk to class or sit in a chair for an hour. It felt like something was constantly grinding away at my hip bone. It wasn’t just my front hip that hurt. My lower back hurt(belt area)and my outer thigh was super sensitive as well.

So I’m still seeing my surgeon every now and then for check ups and he sees nothing surgically wrong with my hip. (We did another arthrogram just to be sure there wasn’t another tear). So he sends me to a sports med. doctor who says that I have tendonitis in my hip and wants to give me two injections-one in the front and one in the back of my hip. I try the one in the back first. I don’t really remember exactly what kind of shots they were but I remember that I was on an x-ray table so they must have injected dye to see exactly where to give me the shot. Anyways, the shot didn’t help me that much and I wasn’t too excited about having one in the front (like right in the groove of where your stomach and your hip bone come together) and being told that during the procedure I had to stay completely still or I could mess it up.

So, I gave up on that doctor and went to another sports med. doctor that I’ve known for a long time who I’ve gone to for other injuries. He was the first one to suggest RSD. So he sends me to a pain clinic. After the doctor at the pain clinic got my history and examined me, he diagnosed RSD. Apparently, I got the RSD from having the surgery. I don’t have discoloration, but he said that if it wasn’t taken care of and exercised, that the RSD could get worse. He suggested 3 nerve blocks (1 about every 2 weeks). So I tried one.

First of all, they gave me way too much sedation medicine b/c I was sick the rest of the night. I thought it was in my chart that I didn’t do well with sedation but either they missed it or it wasn’t in there.

So one, it made me horribly sick and two, the actual nerve block itself made my pain worse, not better. Even though I had another one scheduled for 2 weeks later, I called and canceled it b/c who wants to go through all that again and not even have it work? That was last December(2008). After I canceled the nerve block, I tried to call them back and schedule an appt with the doctor about what to do next. I called a couple of times and left messages. They never returned my calls.

So right now I’m kinda in limbo mode. Being in school full time makes it hard for me to commit to doing something when I know that I could miss some school if I get sick or if the pain gets worse. Yes, it still hurts me and I am trying to keep it active. I’m doing all I know how to do to keep it at bay. I know this is kinda cliche, but some days are better than others.

In April, I sprained my ankle while practicing for a show for my school. I didn’t see about it until after the show was over. The doctor that I saw did confirm that it was sprained and since she knew about my RSD in my hip, was able to see it in my ankle as well. Of course, it wasn’t as far along as my hip was when it was diagnosed but some of the signs were there. My therapist had me doing several desensitizing exercises for it, but one that was really weird but that helped a lot was parafim(SP?)wax. She would dip my foot in the wax 5 or 6 times and then wrap it in a plastic sleeve and then wrap a towel around that and leave it for about 10 minutes. This also made my skin feel really soft so I’ll have to remember for pedicures in the future! I just finished up with therapy and the effects of the sprain are no longer there but the RSD does still show up. It tingles and feels like I’ve got weights dragging it down a lot (best description I could think of).

Okay, so I have RSD in my hip and ankle. Here’s my question/dilemma…

I’ve been going to the dentist once a week for about 3 weeks now b/c of a crown that I’ve had to get redone. When I first had the temporary crown put on about a year ago, I remember it hurting and being in a lot of pain. But once the permanent was put on, it went away. When I had a temp. put back on, I went through the same thing but a lot more pain than the first time. I had to go back and get the bite readjusted which is normal but even doing that was very painful. The day that I go to get the permanent put in, my jaw starts hurting in a way that I can’t even describe. The bone that’s right next to your ear, I guess where your jaw and ear meet, was what was hurting. The pain would sometimes go into my ear too. When I told the dentist about it, he said that it was a muscle spasm. They’re being cautiously optimistic that I won’t need a root canal for this tooth. But they’re not sure b/c I don’t have all the signs for one. My question or concern is could this be RSD showing up in my jaw/mouth? I do have problems with my jaw from time to time. It locks up on me when I smile or when I go to the dentist and have to keep in open for a while. But I have never had pain in it like this before…

If I keep walking/working out my leg and ankle, hopefully they won’t get too bad but if this is RSD in my jaw, I don’t know how I’m supposed to live with the pain. I can’t take Ibuprofen, even when I eat, b/c it upsets my stomach. I’ve been taking Aspirin for it and that helps some but I don’t want to be totally dependent on that around the clock everyday. So I’m really not sure what I would rather it be..RSD or root canal!?! :/ Has anyone else had this problem?

RSD has really tested my patience and my faith. I know that I’m going through this for a reason and I know I will be stronger b/c of it. It’s hard sometimes to explain to people why I can’t do things with them and why I have to stay home a lot. Unless they’ve been there, they really can’t understand what the pain is like. It’s hard staying true to myself when this “syndrome” is in the way.