1. Lots of you sweet, thoughtful people have asked me to keep you updated and this is the most efficient way I can think of to do it. This way, you can tune in if/when you are interested, rather than me sending out constant updates to everyone on my email list.
2. It's a good way to educate people, including myself, on this disorder.
3. Those of you who know me well know that I'm not very good at sharing, especially in person. I'm an optimistic, positive person, the downside of which is that I'm not likely to tell you when I'm struggling. It's a lot easier for me to share in writing, especially in a more anonymous setting like this, where I can pretend no one is reading it.
I am going to try to post every day for awhile, especially while I am getting the hang of it (and by "it", I mean both blogging and having RSD). I want to share the good, bad, and funny, and I hope you'll enjoy the humor and learn a little along the way, about me and RSD. Creative writing has never been my bag, so we'll see how it goes. One other note: when I describe medical terms/procedures, I'm using my own definitions, so don't blame my doctors if I don't get it quite right.
Today's post will be pretty long while I try to bring everyone up to date. Bear with me and I promise future posts will be shorter.
January- June 2013: ouch, the balls of my feet are really sore all the time. I cycle, walk, and wear ridiculously high heels way too often. Oh, and I'm in my mid-40s. Guess this is what middle age feels like...
July/August 2013: while cycling with friends on a hot Saturday morning, the pain gets so intense I can't finish the ride. I walk my bike the last quarter mile to my home and resolve to make an appointment with my doctor first thing Monday morning. My doctor diagnoses me with sesamoiditis, which is inflammation of two pea-sized bones in the ball of your foot. He refers me to a podiatrist, who prescribes customized orthotics to take the pressure off the sesamoid bones and some specific shoes that will be more appropriate. While I love to buy new shoes, I don't like to be told what shoes to buy, and I don't want orthopedic shoes! Guess what, turns out there are some really cute shoes that fit the bill, although they can't comply with my request for at least 3 inch heels.
September 2013: still hurts, even with the new shoes and inserts. In fact, the right foot hurts more than it did before. An MRI of the right foot shows some osteo-arthritis, along with inflammation of the sesamoids, tendon, and bursae. X-rays show possible stress fracture of the sesamoid, although the bones are so small it's hard to tell. Doctor prescribes short boot for my right foot to get the weight off it. I also get a cortisone shot. By the way, when you get a cortisone shot in that joint, the doctor has to dislocate your big toe to make room for the needle. I call my doctor every curse word I know while I am getting the shot. He is very gracious about it.
October 2013: short boot and cortisone shot not making a difference. Doctor orders blood tests to check for possible auto-immune issues, and one of the tests is positive. Doctor refers me to a rheumatologist for further blood tests. Negative result on all additional tests. Good news - I don't have rheumatoid arthritis or lupus. Bad news - still hurting. Doctor prescribes long boot for my right foot. The pain in my right foot is starting to get really serious now. Even the weight of a sheet on my toe in bed is miserable.
November 2013: still inflamed, even with long boot. Doctor prescribes a leg cast for six weeks and advises me to stay completely off it to give it time to heal. This also means no driving. I begin working from home and hitching rides from kind friends for doctor appointments and a few church activities. Rather than crutches, podiatrist prescribes a knee walker, which is much easier to use than crutches and keeps my foot elevated, but nearly drives my patient, long-suffering husband out of his mind. We both notice that my toes turn purple when I'm on the knee walker or have my foot near the ground, but I chalk it up to blood running to that area after it being elevated. Pain is a little better, but still pretty bad.
December 23, 2013: cast comes off - an early Christmas present to myself! Or so I thought. As soon as the doctor begins manipulating my foot to examine it, the pain intensifies and my foot turns purple and swollen. Doctor puts me back in the long boot and advises me to continue using the knee walker. Most of you probably heard the screams of agony from my patient, long-suffering husband from miles away when I told him about the knee walker. Doctor prescribes physical therapy and begins talking about possible exploratory surgery, although he doesn't recommend it because of the potential damage to my foot. At this point, I am at my wit's end. Something is clearly wrong besides a little inflammation in my feet and I need an answer. I get a referral to an orthopedic surgeon in town who specializes in feet and was highly recommended by a dear friend who is a retired rheumatologist.
January 7, 2014: Appointment with orthopedic surgeon. He examines my right foot thoroughly, asks me questions about my treatment history to date, and then asks me to take off my left shoe so he can compare the feet. He looks at my left foot and says, "That's what I thought. Have you ever heard of reflex sympathetic dystrophy?" Obviously, the answer is no. He explains it very briefly and writes it down, "so you can google it when you get home." He wants me to go to a pain management specialist in town who treats RSD to confirm his diagnosis and begin treatment. He says we need to "reset" my nerves and get rid of the pain, and suggests I come back to him when that is resolved so he can figure out what is wrong with my foot that triggered it in the first place.
Excellent! I have a diagnosis! Sounds simple. Couple of visits to the pain management guy, problem solved. Then I go home and google RSD as he recommended. Uh, oh. I start coming across words like "incurable", "remission", "coping strategy", "irreversible". Maybe this is a little more serious than I thought. Maybe I don't even have it. No point in worrying about it until I see the pain management guy, which happens to be tomorrow morning. Thank goodness for cancellations. I don't want to wait weeks to get this resolved.
January 8, 2014: Appointment with pain management doctor. He quickly confirms the diagnosis. He is very knowledgeable and very positive. He says we've caught it early enough that he feels confident he can get it into remission. He tells me the steps he plans to take: first off, a prescription for Lyrica for two weeks, then a follow-up appointment. If no significant improvement, a series of nerve blocker shots. If that doesn't work, a device they can implant under the skin that sends electrical impulses to disrupt your nerves, for up to a year. So far, so good. Then I start to do the math - he just described up to two years of treatment to get it into remission! (This guy is good. He described it in such a positive way that it took me awhile to figure that out.) He also told me that in the future I need to have any injuries treated immediately and tell doctors I have RSD before any surgery, so that precautions can be taken to try to avoid triggering it. I look at my patient, long-suffering husband and see the "I told you so" look on his face, since it took me so long to see a doctor about this. I see a lot of precautionary doctor visits in my future to satisfy my patient, long-suffering husband...
The best news I get from the pain management doctor is that I will not do any more damage to my foot from walking on it, because at this point the pain is being generated by my nerves and not because of the injury. This means I can jettison the boot and the hated knee walker. My patient, long-suffering husband does a happy dance in the exam room. The doctor tells me I will have a lot of pain walking, but I need to do it to ensure my foot doesn't atrophy. No pain, no gain. I leave the office rolling the knee walker behind me, a little bewildered, holding my Lyrica prescription. I am supposed to begin by taking it at night for a week to see how I react, then add a second pill during the day for the second week. Those of you who know how I historically react to medication and anesthesia already know how this is going to go...
I go home and begin reading about Lyrica. Possible side effects include dizziness, drowsiness, and blurred vision. Oh, and weight gain. Awesome. I've already gained ten pounds during this ordeal, so that will be great. I start making plans to purchase some muumuus on the internet, since I can already barely fit into my clothes. Then I read the best part. And by "best", I mean "worst". No alcohol. This is going to be a long two weeks.
One of the things I'm learning in my study about RSD is that it is important to keep your friends and family informed as a support network (and more generally, to spread the word about this disorder since so few people are aware of it). I begin emailing friends and family to let them know about it, and I like the RSD Association's page on Facebook. Yes, everything is on Facebook now.
January 9, 2014: I wake up later than I expected, feeling like I'm coming out of anesthesia. I say several nonsensical things to my patient, long-suffering husband and then try to pour myself out of bed. I'm still working from home until Monday, but I have an extremely important conference call from 8am-2pm. I have to get my act together. I manage to stumble to the kitchen, get some breakfast, and emerge from my stupor just in time. No change in my foot pain, or the color of my foot today. Wishful thinking, I guess. By the end of the day, I am in agony. Besides the "normal" pain, I am now walking on my right foot for the first time in two months, so my ankle, knee, and hips ache. I take another Lyrica and collapse into bed.
January 10, 2014: I'm a little less foggy this morning, but in a lot of pain. Even my toes are tingling and burning. It woke me up multiple times in the night, but I still managed to sleep pretty well, probably due to the Lyrica haze. The blurred vision started today, so please excuse any typos. A lot of work fires to put out, so no time to concentrate on pain, though. I have already filled Monday, my first day back in the office, with meetings. Maybe that's a good thing. I need to stay busy right now, because it keeps my mind occupied.
Whew. Everyone is now officially caught up. Tomorrow I will post more about RSD (symptoms, causes, etc.), but I wanted to get the background out of the way. Thanks for hanging in there with me today.
Here's what my foot looked like this morning:
Thank goodness for my pedicurist.
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