What's wrong with me

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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That looks so painful, Jhouiy, you must have been miserable. How long did it take to clear up?

Has anyone considered a foreign body reaction to tattoo ink? I had a patient with a terrible rash like that and it turned out to be a reaction to his tattoo ink? Just a thought.

Hi, Jhouiy:

I have been diagnosed with polymyositis and the "Skin" variety of Lupus - not the same as the systemis variety. Your rash problem sounds and looks like mine. If your muscles are involved it sounds like Polymyositis - a rare and chronic autoimmune disease.It could also be Dermatomyositis, which also affects the skin. My meds regimine includes Aziothiaprine (Immuran), an immune suppressant, Prednisone( Initially in high doses - 60 mg daily) and Plaquinil for the Lupus rash - which cleared it up completely. I was also hospitalized with a rash that was like a chemical burn that covered my chest and upper arms. When I was first diagnosed my CK level was 10,000 - inndicating massive inflammation and an immune system that attacked my large muscles and my Lungs. Have you had a CK level reading when blood work was done? Has an immune suppressant been prescribed along with the Prednisone? I found that these two meds work well together to control the onslaught of the myosittis although it took months! I hope you get a firm diagnosis soon. I can really relate to and sympathize with your illness.

Please say more…It’s was mentioned at Hopkins…

suebee58 said:

Has anyone considered a foreign body reaction to tattoo ink? I had a patient with a terrible rash like that and it turned out to be a reaction to his tattoo ink? Just a thought.

How long had you had the tattoo before the Placquenil episode, Jhouiy? It seems like the Placquenil acted like more of a trigger than the tattoo, unless the tattoo was quite new,

Here is a very thorough patient guide about myositis, put out by the Muscular Dystrophy Association: http://mda.org/sites/default/files/publications/Facts_Inflamm_Myopathies_P-199.pdf

Read it carefully and see what fits and doesn't fit. It will help you form questions for your doctors.

I was thinking the same thing last night Maybe you have had a giant reaction to the tatoo ink. At one time I wanted to have some lip enhancement done but they wouldn't do it because of the possible reaction? Perhaps it was the trigger for your whole immune system to go haywire. Just a thought. Also, be careful about being in the sun too much. With this rash you have to sunscreen thoroughly and cover yourself up. Long sleeves, hat etc. Don't lie in the sun and tan. That was a big mistake I made.

I read further about the tattoo issue and learned that the tattoo doesn't have to be new to create a reaction. It can be a delayed trigger, so to speak. All of which makes it very difficult to pinpoint the cause of your symptoms, Jhouiy. But I hope the tests will be illuminating.

Hi there! I'm a little late to the party, but I wanted to pop in to let you know how sorry I am that you have been going through this, Jhouiy.

One thing that my rheumatologist has shared with me is that sometimes autoimmune conditions can be very slow to start and then simply need a trigger to tip the hat. The trigger can be something with your health, or simply stress.

When you mentioned the pain in your foot beginning a few years ago and culminating with the intense debilitation that you experience now, I couldn't help but be taken back to how Dermatomyositis first appeared in my life.

I left a job that I loved as a hair stylist thinking that my body just wasn't cut out for that type of work. Then, I began getting little bumps on my fingers that my dermatologist told me were warts and proceeded to laser off. This resulted in massive infections that nearly lost me a few of my fingers. After they healed, I went to a new dermatologist who took one look at my hands and said, "That looks like Dermatomyositis!" She asked me if I had trouble raising my arms or weakness in my thighs and I stared at her dumbfounded like, "How did you know?"

My DM took a turn for the worse shortly thereafter, which couldn't have happened at a better time, since I now had the right doctors behind me. This whole process from the start of my symptoms to my lowest point was about 5 years.

More recently, I have started to get rashes that look a lot like yours. My rheumatologist seems to think that it looks like a lupus overlap, whereas my dermatologist just simply says that autoimmune diseases with skin symptoms are all crazy and react differently. She most recently gave me this cream called Cloderm that works great.

One thing that truly changed my life was being able to be seen at the Mayo Clinic, so I am really excited to read that you will be seen at Johns Hopkins. They will get to the bottom of this!

Know that I'm thinking of you and hope that you are hanging in there. Looking forward to hearing how everything goes.


P.S. If you're on Facebook - there is a great group where you may also be able to find someone who has shared some of your experiences. https://www.facebook.com/groups/2296244717/