View Full Version : mystery symtpoms = dermatomyositis?

04-20-2014, 01:27 PM
I think I am on to something. I started having crazy symptoms over 2 weeks ago. On April 2 I had just recovered from a cold and went outside late one afternoon in the sun - just walking around the yard with the dogs and kids. Later that evening I noticed I had a streaky rash on my arms and legs where I had been exposed to the sun (this was 5 pm sun, not mid-day). I thought it was very odd. The next day the rash was all over my face, neck a v-neck area and also on my legs. The rash on arms and legs was like linear streaks like I had been scratched and some were flat red splotches and some were red bumps. My neck was splotchy red with red bumps. I thought it was hives from the sun. But it was definitely not sunburn. This rash did not itch. I just assumed I had a reaction to the sun. I also began having dry eye syndrome in Dec '13. I had already been wondering if I had lupus and I knew sunlight sensitivity was a lupus symptom. I began to worry.

Then that Sat/Sun I began having severe muscle pain in my thighs when climbing the stairs at our house. It felt as if my muscles had maxed out from extreme exercise, however I had not been doing anything strenuous to cause the pain. I found it excruciating to stand up from sitting, or to sit from standing. In the days ahead the pain worsened and spread to my calves. Walking is slow and painful. It feels like a charley horse is about to come on, but never does. Sitting and resting - there is no pain. Only during movement. When I am sitting it is impossible to raise my legs up off the chair at my hips because of the pain/weakness. I had a few days of low grade fever that caused more pain and misery. I went to the doctor and had several blood tests. ANAs for lupus, sjorgens were negative and thyroid and RA factor was normal and everything else is on track. Sed Rate 25 and Bun/Creatinine ration 20.9. so those were slightly high, but nothing my dr was concerned about. He tested me for Mono, Lyme Disease and Rocky Mt. spotted fever as well as for parasites and all is normal. He prescribed Prednisone and that has taken some of the edge off the pain, but my weakness and pain are still present. The muscle pain spread from thighs and calves into my butt, back, abs and arms.

I am a 35 yo female with no other major medical problems besides trouble with a few herniated disks over the years and the dry eyes since Dec'13. This has stumped my dr. and he is willing to test for anything at this point. He told me to research on my own as he would be thinking of possible causes of my symptoms as well, and if I were to come across something that matched up to let him know and he would test for it.

Over the weekend I have search the internet over and I keep coming back to dermatomyositis. The rash following a virus and sun exposure, extreme muscle pain and weakness showing up a few days later. The rash has not disappeared as hives do, and the rash on my neck has become extremely red, tender, painful and itchy. It itches but it hurts when I even gently rub it. The skin is bright red and inflamed and almost scaly looking but not dry scaly.

I am convinced that I have dermatomyositis. I go for my follow up visit with my GP tomorrow. Should he send me to a rheumatologist? What tests should I have done? I am on Day 7 of 12 of Prednisone - will the Prednisone interfere with my test results? I am using OTC Hydrocortisone cream and taking Tylenol to deal with the rash - is there anything else I can do for the rash? My arms and hand rash does not itch or hurt and is not as intense as the chest/neck rash. The rash extends to my face so I am not using my normal beauty products for now in case they may aggravate it.

I am aware that there is the possibility that I don't get any answers at my visit tomorrow and the dr may not believe that DM is what is going on here with my current test results. But everything lines up in my opinion. I just want an answer. And for example, like my sed rate being 25 - how does he know if that is normal for me? It may have been 5 a year ago, but we don't know. Do certain numbers rise over the course of illness? I have only been having the rash and muscle problems for 2 weeks. I hope that when the Prednisone treatment is over that it does not return as bad and as disabling as in the beginning. I was having to slide down the stairs in my house on my butt because it hurt so bad to walk or hobble down. This has been very scary. And when I research DM it says that one of the causes could be exisiting cancer...should they test me for cancer too?

04-21-2014, 02:59 PM
I am posting my story on several boards because I still do not have a diagnosis :(

I was tested for Lyme last week and it came back unusual. The IgG and IgM for Lyme were negative and the Rocky Mt. Spotted fever was noraml, but the Western Blot for Lyme antibodies was .97. Negative would be .90 or less and positive would be 1.10 or more. ??? This may or may not mean I have Lyme. But now he put me on tetracycline just in case and told me to stop the Prednisone because he's sending me to a rheumy on Wednesday. Today he tested my creatine and for DM. Not sure what to expect at the rheumy. This is a confusing mess. I hope to find answers soon!

My rash has intensified and is spreading. He prescribed me some cream to put on it and my hubs is picking that up tonight. I'm too embarrassed to go out in public looking like this :(

A lady at my church was recently diagnozed with DM. She has it so bad that she was in the hospital and is in a wheelchair. She had to have ladies from the church come help her bathe (she is divorced, but staying with her dad now that she's sick). My dr. told me that she was put on 1,000 mg of prednisone! She has it so bad. But he also said, if I understood him correctly, that all of her tests were NORMAL for DM, but she was diagnosed with it anyway. ?? I don't know what to think of that. My hubs wondered if it some kind of new virus/disease going around that has not been identified. It would be odd that my friend at church and I both get Dx with a rare disease within a month of each other. I'm trying not to panic.

In the meantime, I wait...again...for the results. I'll keep you posted.

04-23-2014, 04:55 PM
I went to the neurologist today. I had a nerve conduction test done and the needle test to "listen" to my muscles. The neurologist is very sure that I have Dermatomyositis. Not the news I was hoping to hear but it is a relief to know that this has a name and can be treated. I will visit a rheumatologist to confirm the diagnosis. I have started back on Prednisone (amen!) and finally have Rx cream for my rash.

I am still in a state of shock about going from healthy one day to chronic illness the next. This is overwhelming. But I am determined to fight it. I am going to follow an anti-inflammatory diet in hopes that I will not need to take meds the rest of my life.

I am thankful that it is not worse and that my body is responding to Prednisone. I just had a friend to be diagnosed with DM in the past few months and she is not responding to Prednisone and had to be hospitalized and is now in rehab to regain her strength. I wouldn't wish this on my worst enemy whether it is severe or textbook case.

If anyone has any suggestions on how to deal with this disease, I am all ears.