My situation started out a few years ago as a painful lump in my left foot. The pain was mostly in the morning and at the end of the day. I went quite along time before finally going to see a podiatrist. Podiatrist tells me I have plantar fasciitis and proceeds with the standard boot, night splints etc…well my foot got worse.
After close to a year of dealing with the podiatrist, my gp looks at my foot and tells me to see a surgeon. I see a surgeon, he says I have a plantar fibroma and it is causing the pain. Surgeon suggests removing the fibroma, but says its elective and that I can wait…so I wait.
Over the next ten months, the pain progresses to both feet and my left hip. I’ve been presenting to various drs now for over two years and not one of them has ordered any bloodwork…I really start feeling most awful during the fall of 2013. My feet hurt, my left hip hurts, and I have come to the point that I can almost no longer walk. In my simple mind, I have not connected the various things going on with my body as a potential systemic issue. In addition to the hip and foot pain, I have an ongoing issue with my hands (see photo) that the dermatologists says its dry skin…As you can see its pretty dry…this is in addition to numbness and burning in my hands from time to time.
…so at the end of October 2013’ I decide to refer myself to a rheumatologist. Believing that my foot was only a fibroma and that I only had dry skin on my hands, I am convinced that the pain in my hip is do to some plain old arthritis and that the doc can give me some meds that will make me feel better…boy was I wrong.
I saw the rheumatologist at the beginning of November. He listened to everything that was going on and did a thorough exam. He noticed a rash on my shins and a few other things about my skin that I hadn’t noticed. He was taken aback when I told him that I haven’t had any blood work and he orders a full panel. I left his office and went right to the lab. Two days later he calls me and sends me for more blood work. A few more days go by and he calls me and sends me for a bunch of X-rays…now I’m starting to be concerned.
After all the labs and X-rays are done I get the call from the dr. He says that my anti dna is +659 and that he believes I have one of the strangest cases of lupus he has ever seen. He immediately puts me on prednisone and Plaquenil. That was November 18.
I got very , very, very sick from the Plaquenil. I was covered in a rash that can best be described as a chemical burn over 80% of my body (see photo). This was December 18. I feel and look just awful at this point. I mean awful. The dr puts me back on prednisone and suggests a second opinion. I call Johns Hopkins and make an appointment with them. I had to wait about 6 weeks and stay on the prednisone which just sucks altogether. I keep believing that I have lupus and that Hopkins will know how to treat it and I’ll be able to go on with my life…wrong
I see the folks at Hopkins on 2/18. The most thorough medical exam I have ever had in my life. Face to face with the dr for nearly 2 hours. All lab work and then some ordered again. Then the wait. A week goes by and in hear from my dr at home in CT. Hopkins thinks I have myosotis and not lupus…to be honest, I had never even heard of myositis and had no idea what it was. All I know is that it doesn’t sound good…
Now I am in a holding pattern of not knowing and feeling like total shit. Total shit emotionally and physically. I can hardly walk, can’t tie my own shoes, and have some really strange things happening with my muscles that I can’t even describe…something somewhere between extreme pain and nothingness…sometimes it’s as if my leg isn’t even there when I need it…
I’m still on the prednisone, it’s not really doing much for me. Honestly the only thing that seems to help is smoking massive amounts of marijuana and moving around as much as possible. The marijuana relaxes me and stops my muscles from behaving strangely…
So the long and short of it is I have no idea what’s going on with my body and won’t know for quite sometime. Maybe I have lupus? Maybe I have myositis? Maybe I have lupus-myositis?
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