My journey to dermatomyositis.
Most of my life I have been a very healthy person. I am rarely sick and have only been on antibiotics a few times. How ever for the last 5 years I have had random vague symptoms. Occasionally I would have joint pain and fatigue, lasting a few days then it go away. I also have raynaud's.
In the fall of 2013 life was very stressful and I started having severe diarrhea (i've always had an icky stomach but never like this). A colonoscopy resulted in the diagnosis of lymphocytic colitis. Treament was pepto bismol and immodium.
The following spring I was training for a half marathon and started having pain in my lower leg. I did physical therapy, massage, rest etc and the pain just kept coming back. I finally found a surgeon who diagnosed me with chronic exertional compartment syndrome (CECS). I had a 4 compartment fasciotomy done on both legs this past November.
This end of January this year I had what I thought was a viral illness, body aches, low grade fever, fatigue, no appetite. Later that week I noticed a rash on my hands and outer upper thighs. I saw my general family NP and she didn't know what it was but did a punch biopsy and got me into see a dermatology NP within a few weeks. The Derm NP took one look at my hands and said "dermatomyositis." He did biopsies on each hand and said the next step would be rheumatology. He called to try to get me in the the rheumy (usually takes 6-9 months) and she just happened to have a cancellation and I was able to get in immediately. She agreed with the diagnosis but ordered more blood work and wanted to wait for the biopsy results. She started me on 10mg of prednisone which honestly didn't help much. My ana was positive and cpk was slightly elevated. Skin biopsies confirmed DM and she increased my prednisone to 20mg and started plaquenil. It has been about 2 weeks now and my rashes have spread to my chest and neck, plus I have started having increased muscle weakness. Next steo is to start methotrexate which I find very scary.
Although the Dr's say they are not related I can't help but wonder if the colitis, CECS and DM are all related. Colitis is inflammatory in nature, the CECS and DM are connective tissue related.
In the fall of 2013 life was very stressful and I started having severe diarrhea (i've always had an icky stomach but never like this). A colonoscopy resulted in the diagnosis of lymphocytic colitis. Treament was pepto bismol and immodium.
The following spring I was training for a half marathon and started having pain in my lower leg. I did physical therapy, massage, rest etc and the pain just kept coming back. I finally found a surgeon who diagnosed me with chronic exertional compartment syndrome (CECS). I had a 4 compartment fasciotomy done on both legs this past November.
This end of January this year I had what I thought was a viral illness, body aches, low grade fever, fatigue, no appetite. Later that week I noticed a rash on my hands and outer upper thighs. I saw my general family NP and she didn't know what it was but did a punch biopsy and got me into see a dermatology NP within a few weeks. The Derm NP took one look at my hands and said "dermatomyositis." He did biopsies on each hand and said the next step would be rheumatology. He called to try to get me in the the rheumy (usually takes 6-9 months) and she just happened to have a cancellation and I was able to get in immediately. She agreed with the diagnosis but ordered more blood work and wanted to wait for the biopsy results. She started me on 10mg of prednisone which honestly didn't help much. My ana was positive and cpk was slightly elevated. Skin biopsies confirmed DM and she increased my prednisone to 20mg and started plaquenil. It has been about 2 weeks now and my rashes have spread to my chest and neck, plus I have started having increased muscle weakness. Next steo is to start methotrexate which I find very scary.
Although the Dr's say they are not related I can't help but wonder if the colitis, CECS and DM are all related. Colitis is inflammatory in nature, the CECS and DM are connective tissue related.
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