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Dermatomyositis

Updated on June 18, 2015

Dermato...whosiwhatsit????

Dermatomyositis (dur-mah-to-mi-uh-SI-tis) is a rare disease marked by muscle weakness and a distinctive skin rash. "Myo" means "muscles" in Greek and "itis" means "inflamed." "Derma," which means "skin," refers to the skin-related symptoms that accompany the muscle inflammation. (In case you're pondering the picture to the left, this is what healthy muscle tissue looks like under a microscope ~ pretty cool, huh?)

Muscle weakness is initially manifested close to the trunk (shoulders and hips). Patients often begin to notice fatigue of their muscles and/or weakness when climbing stairs, walking, rising from a sitting position, combing their hair, or reaching for items in cabinets that are above their shoulders. Muscle tenderness may occur, but it is not a regular feature of the disease. Periods of remission, when symptoms improve spontaneously, may occur. While this disease is not curable, it is treatable. Treatments can improve your skin and your muscle strength and function. This disease is typically treated with high doses of steroids such as Prednisone.

The cause of dermatomyositis is unknown. Viruses or autoimmune reactions may play a role. Cancer may also trigger the disease. It is possible that an immune reaction against cancer may be directed against a substance in the muscles. In other words, who knows??

DERMATOMYOSITIS IN A NUTSHELL: Your body's own immune system begins to attack and destroy your muscles, causing them to atrophy (waste away). It does not make any difference if you're in good physical shape or not, your muscles will shrivel and disappear even though you are still using them.

Personal Note: Just leave it to me to take a woman's ultimate fantasy (self thinning thighs) and mess it all up!

Please Note

This lens covers my own personal experience and is meant for information and reference purposes only. (I'm not a doctor, ya know ;o)

Myositis, Fibromyalgia, Arthritis et.al. - This is a HUGE homeopathic help!

Got pain? I did, and do. On top of the muscle disease is Fibromyalgia, which is no fun either. I'm not a big fan of prescription medications; we'll toss in the fact that painkillers knock me flat out (and it's awfully hard to work thattaway ;o) I bought these things to try because I was desperate, although I really didn't expect it to work. Imagine my delight when I found they worked very well.

NOTE: I don't use the Arnica all the time, but it is great stuff! The BCAA (Jarrow is the only formula I've found to work) I take daily; it has enabled me to work out again, even with Fibromyalgia! *WOOT*

Dermatomyositis: Diary of a Disease

The signs and the symptoms

In November of 2006, while undergoing the Taxol portion of my cancer treatments, I noticed a funny little purple splotch on my left ankle. Considering the huge number of side effects caused by my chemotherapy, (I often referred to myself as a walking science experiment) I rolled my eyes and added it to my mental list.

In late spring of 2007, however, I noticed that the same little splotch had spread slightly across the top of my foot (hmmmm). Late summer and early fall of 2007 my focus was on reconstructive microsurgery (see my PinkThink lens for more information there). Other than noting that the same rash had now materialized on my right foot, I paid little attention to it as I was now completely focused on my recovery which was huge (two separate procedures totaling over 13 hours of surgery can really wear a gal out, you know).

By January 2008 the rash had begun working its way around the front of my foot and started creeping up my shin. I asked my Oncologist about it, but as it appeared to be a skin condition he was unsure and suggested I consult a dermatologist if it bothered me. Since it didn't itch or hurt and (other than being ugly), really didn't bother me at all I thought I'd just keep an eye on it in case it DID become a problem. This turned out to be a very poor decision on my part.

Spring brought bouts of fatigue and some breathing difficulties, which became troublesome enough to warrant a visit to our family doctor. I was diagnosed with mild Asthma and prescribed an inhaler. The inhaler helped with the breathing, but only marginally. (I figured out later it was the steroid in there that was helping).

Summer came along and with it was difficulty swallowing and trouble with indigestion. By the time August rolled around the fatigue had increased drastically and was accompanied by random muscle pain and weakness (one minute I'm be-bopping along and the next my legs would be like jello and I suddenly had to sit down). It was at this point I started to wonder if I had something quite a bit bigger than asthma; I started Googling my symptoms and came up with things like Chronic Fatigue and Fybromyalgia. Another trip to the family doctor where I gave him a rundown of my symptoms, this time asking about the rash. After inspecting my ankles, he hesitantly proposed the possibility of Dermatomyositis (which he had never seen) and promptly referred me to a Dermatologist for further evaluation.

The first available appointment with the Dermatologist was in the Fall, which meant more waiting. As one who has always zipped along at 90 miles an hour, I now found myself becoming extremely frustrated with my progressively decreasing pace. The visit to the Dermatologist yielded another mention of Dermatomyositis as a diagnosis (it was in her medical book :o) and another referral, this time to a Rheumatologist.

In November of 2008 I was officially diagnosed with Dermatomyositis ~ exactly two years after having noticed that small purple splotch on my ankle. I spent some time kicking myself right about here for not having gone straight to the Dermatologist way back when, but who ever thought a funny little rash would mean something so serious? Not me.

Thought for the day:

It took two years from first noticed to diagnosis; that's a mighty long time.

The testing and the treatment

Okay it's Dermatomyositis, now what?

Bloodwork

Creatine kinase (CK) is a substance made by injured muscles, this blood test is used to check for elevated levels as confirmation of the initial diagnosis.

EMG (Electromyography)

This was the first official test for Dermatomyositis ordered. The test measures the electrical activity of muscles at rest and during contraction. Nerves control the muscles in the body by electrical signals (impulses), and these impulses make the muscles react in specific ways. Nerve and muscle disorders cause the muscles to react in abnormal ways. While this was not the most fun I'd ever had, it wasn't all that bad (except when he missed the muscle and hit a nerve with his nice long needle, but we aren't going to talk about that).

NOT What I Wanted for Christmas

Ordinarily, treatment is begun after the muscle biopsy, which is done to determine the extent of muscle damage. Treatment started before the biopsy is done can sometimes skew the results. Unfortunately, my disease seemed to snowball to the degree that by Christmas Eve I was no longer able to walk at all. The Lord blessed me with a marvelous physician, however, who personally met me in his office (which was closed for the holidays) and decided to begin treatment immediately. It was determined that as long as the biopsy was done within 2 weeks, the results would be valid.

Party Hearty with a Muscle Biopsy

Now I may not have planned to spend my New Years Eve holiday at some big party, but I didn't exactly expect to spend it at a hospital either (yep, that's when I had my muscle biopsy). Other than my friend forgetting my bag of clothes in the room when we went off to surgery, it was rather uneventful. Of course I thought I'd rewrite history a bit when relating my New Years activities afterward, so here's my new and improved [highly fictitious] version: "I went to this monster party at this place (hospital) and got seriously zoned on primo drugs (like anesthesia). I don't remember anything that happened, but I woke up without my clothes (hee :o) Now doesn't it sound much more interesting that way?

Thought for the Day:

Sometimes the cure is worse than the disease [or at lease a close second].

Stop the ride - I wanna get off!

Manic moods and mooning faces

The burning question: I had a student ask me not long ago why on earth I would agree to take the steroid treatments (we were talking about what had "happened" to my face; it was terribly swollen). She avowed she would never have agreed to take them and remained adamant; right up until I explained it was either the steroids or life in a wheelchair. Makes it pretty much a no-brainer when you put it that way, doesn't it?

Not exactly a walk in the park (or a ride either)

I really thought I had covered the superweird when it came to side effects during my cancer treatments, but apparently I was mistaken. My initial dose of Prednisone was set at 60mg per day. This resulted in a roller coaster ride of epic emotional proportions (basically, it makes you feel as though you are going off the deep end). I would liken it to drinking about 247 cups of coffee and then watching some horribly depressing movie...

I think I lasted about a month at that dosage - emoting all over everywhere - before I hollered "Uncle". Mercifully, my doctor cut the dosage in half. Still not a walk in the park, but much more bearable. Of course he also substituted another medicine that had huge warnings all over the label that it was known to cause cancer (sigh).

A Stranger in the Mirror

Have you ever seen a child in treatment for Leukemia or Cancer with their cute little chipmunk cheeks? Up until now, I had always assumed it was either baby fat or weight gain due to their inability to exercise. I have [unfortunately] been enlightened: medically speaking, this severe swelling is referred to as "Mooning of the face" and it is a direct result of high doses of steroids over time. Personally, I call it adding insult to injury. I stopped wearing blush when I could no longer locate my cheekbones. I put away the lipstick when I noticed I was starting to resemble a 400 pound Kewpie Doll. It even affected my eyes, to the extent that my glasses would no longer sit correctly on the bridge of my nose due to the swelling. The final insult? Pain. In general, sure, but also just to smile at someone or express any emotion at all on my face became terribly painful. Laughter? Forget it.

I think it's safe to say I am definitely NOT having fun yet, although the mystery of what I would look like if I were a Sumo Wrestler has now been solved :oP

Thought for the Day:

It is a sad state of affairs when your driver's license photo looks better than you do.

Books on Dermatomyositis - I haven't read any of these, but I'm interested in the holistic one

Thought for the Day:

If I had to come up with something rare, why couldn't it be a winning lottery ticket?

Putting it in perspective

Factoring the Odds

CANCER 1 in 3 people (lifetime)

ASTHMA 1 in 15 people (NIAID)

ALZHEIMERS 1 in 68 people (Wrongdiagnosis.com)

MULTIPLE SCLEROSIS (MS) 1 in 700 (NIAID)

LIGHTNING STRIKE: HOUSE 1 in 200 each year

PARKINSONS DISEASE 1 in 272 (Wrongdiagnosis.com)

LUPUS 1 in 2,000 (NIAID)

CAR CRASHES KILL 1 in 5,000

*DERMATOMYOSITIS 1 in 20,000 *

LIGHTNING STRIKE: PERSON 1 in 280,000

The odds of being killed in a PLANE CRASH are 1 in 11 million

Well, here's where the winning lottery ticket landed (so I guess that pretty much answers my question, doesn't it? :o)

So where am I now?

(at the conclusion of this lens)

Well, the disease is currently in remission and I am walking again (up to 2 miles a day on the treadmill). It sure is at a much slower pace than I'm used to, though. I am gradually decreasing the Prednisone and working my way down to a maintenance dose, which I will have to take for awhile.

I haven't yet figured out what the lesson is in all of this, but I will. It is unlikely that I will return to the shape I was in before this disease, as muscles do not regenerate - we'll see. In the meantime, there are still plenty of things in my life to be thankful for: a merciful God, a loving family (the two legged and the four legged members), and many wonderful friends (both online and off). If nothing else, I do have a much deeper understanding of the cliché, "If you don't have your health, you don't have anything." Boy, you can say that again! :o)

My diagnosis changed

to Polymyositis when it was noted that my rash remained even in remission. You mean I get to keep it? Gee, thanks a lot... NOT :oP

Be careful Googling symptoms...

Hypochondria is only a mouse click away :o)

Wondermous in Winter!

NOW Arnica Warming Relief Massage Oil,8-Ounce
NOW Arnica Warming Relief Massage Oil,8-Ounce

I absolutely LOVE this stuff! Since I'd already tried the arnica gel and knew it worked, I was ecstatic to find this stuff. It heats up almost immediately and feels sooooo good on sore muscles. Can't say I love the scent, but it sure does smell better than "Ben". I prefer homeopathic stuff over all those chemicals anyway :o)

 

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Have you ever heard of Dermatomyositis or Polymyositis before now? - I sure hadn't!

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    • profile image

      myositissupport 3 years ago

      We have known about myositis for over 10 years. Prior to being diagnosed however, no, we had not ever heard the term myositis let alone Dermatomyositis. Our new organization, Myositis Support and Understanding, was founded to support patients, caregivers, family and friends as well as to promote myositis awareness. Thank you for sharing this information!

    • Lady Lorelei profile image

      Lorelei Cohen 4 years ago from Canada

      Just stopped back again. Not sure if you have seen the video of Dr. Cooper from the 2011 Myositis patient conference but they have now determined which antibodies are associated with the higher risk of cancer. This is really a break through as now people like myself with JO1 antibodies will not have to undergo the rigorous cancer testing on diagnosis. That is good for us and will save a lot of medical money as well. Best wishes. I hope you have a wonderful holiday season.

    • Cari Kay 11 profile image

      Kay 4 years ago

      I have not heard of it before now but I've learned to see the Dermatologist first whenever the skin is involved. Saves so much time! Glad to hear you are doing better!

    • profile image

      anonymous 4 years ago

      i was diagnosed 2 weeks ago after 1 year,it's a releif to know what i have and finally get some treatment,at least the pain from my muscles has gone

    • EpicFarms profile image
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      EpicFarms 4 years ago

      @Aunt-Mollie: I am still plodding right along, and thank you so much for asking! I've since learned that in the world of autoimmune disease, diagnoses tend to come at a speed far slower than sloth; I believe diseases like MS and Lupus take something like ten YEARS to diagnose. Oy.

    • profile image

      Aunt-Mollie 4 years ago

      There must be an easier way to diagnosis this serious condition so people can get help sooner. I know that Google isn't a substitute for a doctor, but it does help many patients connect with others and combine resources. I hope you are improving!

    • profile image

      anonymous 4 years ago

      I have been diagnosed w dermomyostits , the rash came first an I brushed it off til it became so bad that I went to see a Dermatologist who said I needed to see a rheumatoid arthritis doctor. Then all the tests. I had Been a very active physical person and then suddenly severe Muscle Weakness in my lower torso my legs hips one of my arms I could not lift I could not get up from a sitting position I could barely get out of bed Or walk putting on clothes was a nightmare. Finally I was put on prednisone Then had to taper off quickly due to severe bone pain. I was then put on next on Methotrexate 10mg once weekly with 800mcg Of folic acid taken daily. At first the side effects were not fun but as the weeks went by they started to get better and My muscle weakness is not as bad and I'm feeling better but I'm told that I will have to be on methotrexate for the rest of my life. It's definitely not a fun disease. I'm what they call "in a constant flare" so I'm pretty much stuck taking the methotrexate for life unless medical technology finds a cure or another medicine that can help it into remission . For all you out there with this disease I definitely feel for you it's no fun an tends to affect one thing then another day something else hurts or is weak. But keep positive an smile an laugh. Laughing is great medicine :)

    • EpicFarms profile image
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      EpicFarms 4 years ago

      @anonymous: Pretty scary stuff, that. I'm glad to hear the lung transplant was a success, and I pray that the muscle weakness is only a temporary problem from the surgery.

    • profile image

      anonymous 4 years ago

      my husband has dermatomyositis and had interstitial lung fibrosis along with it.. he recently had a double lung transplant and was doing well.. he is now experiencing extreme muscle weakness.. glad you are doing better and didn't have the lung involvement..

    • NibsyNell profile image

      NibsyNell 4 years ago

      I'd never even heard of this. Glad to hear you're feeling better now.

    • Lady Lorelei profile image

      Lorelei Cohen 5 years ago from Canada

      I knew I had seen an article on myositis here on Squidoo quite awhile ago but I could not remember where I saw it. I have been fighting this monster for a very long time but the past few years have been turning downward quite drastically. I overdid it when my daughter divorced and I just have not managed to come back since. The illness is slowly taking more and more. I am still hoping to find my way back. If I can survive the lung issues this winter then hopefully I can regain some muscle strength in the spring. Cross your fingers for me to avoid the flu and cold this winter. I am terrified of them at this point.

    • profile image

      anonymous 5 years ago

      @captainj88: thank you for this post. my husband is diagnosed with dermatomyositis. lately some symptom is felt, and i just felt so worried but reading this gives me hope. i believe in a a power higher than ever on earth. thank you.

    • profile image

      anonymous 5 years ago

      @captainj88: thank you for this post. my husband is diagnosed with dermatomyositis. lately some symptom is felt, and i just felt so worried but reading this gives me hope. i believe in a a power higher than ever on earth. thank you.

    • captainj88 profile image

      Leah J. Hileman 5 years ago from East Berlin, PA, USA

      Yes, I had a girl in my youth group with this, and my friend Jan's mom was miraculously healed in the late '80's or early '90's after a prayer chain went around for her following a bad prognosis. She's still alive today, in her early 80's!

    • EpicFarms profile image
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      EpicFarms 5 years ago

      @anonymous: Hi TB. One of the things I learned about autoimmune disease, is there are a lot of people who wind up with more than one. Definitely a question to ask your doctor - it would probably be a good idea to make an appointment to see him (or her :o). It sounds like your immune system may not be doing its job. Hope everything turns out okay!

    • profile image

      anonymous 5 years ago

      Hi, I am from a small town in Victoria, Australia.

      I suffered juvenile dermatomyositis from age 7-17, with three relapses along the way. In 2006 (aged 18) I was officially told I was in remission. I am now 24 and in the past 6 months I have suffered quite a number of different virus' and infections. I am just curious if anyone knows of any post remission side effects?

    • profile image

      anonymous 5 years ago

      Myositis sucks and I have Inclusion Body Myositis

    • profile image

      anonymous 5 years ago

      Interesting lens. Luckily, no one around ma was diagnosed with this ...

    • Lady Lorelei profile image

      Lorelei Cohen 5 years ago from Canada

      Refreshing the blessing on this lens. It keeps disappearing. Fluttering off now....

    • profile image

      anonymous 5 years ago

      @anonymous: hey Tabitha..I too live in West Virginia and have battled this for 4yrs...Just this year i got off the prednisone finally!! My muscles are not weak but with in the last 2 weeks my rash has came back...I refuse to go back on the prednisone....do you know of anything that will help the rash and the redness. Do you mind if i have your email so I can keep in touch with you

    • profile image

      anonymous 5 years ago

      I was diagnosed with Dermatomyositis when I was 8 years old and my mother had never heard of it. I've been in and out of remission for 18 years. After I gave birth to my daughter in 2007, I was in remission once again and I'm still there. I live in West Virginia and there are only 3 cases of Dermatomyositis including myself. My heart goes out to everyone suffering from this.

    • profile image

      anonymous 5 years ago

      Great lens you have here about dermatomyositis. It is very informative which i believe can help a lot of people to be aware about the symptoms of it as well. pinnacle and metal toxicity

    • Lady Lorelei profile image

      Lorelei Cohen 6 years ago from Canada

      Just stopped by once again to say hi. I hope you are well and best wishes to you.

    • EpicFarms profile image
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      EpicFarms 6 years ago

      @anonymous: Oh Clare I am so sorry! Imuran is nasty stuff (I took it for awhile too) although I'm not sure it's any worse than the high doses of Prednisone - did your face swell too? I hope that the doctors at Royal Free will be able to offer you more help. I will say a special prayer for you right now!

    • profile image

      anonymous 6 years ago

      Hey I can't believe where the time went since I last posted here. I have a diagnosis of dermatomyositis but I am not typical. Have since posting last year had 9 months of steroids for diffuse pulmonary fibrosis and sadly although we thought I was improving (stopped steroids in Dec) I was back to square one 3 weeks later. So now on imuran and pred combined and can't complain as have felt a lot worse. Im told I am an anomoly and my consultant is looking ahead to what to do next if this doesn't stop the lung damage. Think the consultant is referring me to the Royal Free and Brompton in London and I just stay a positive as I can. (-: and I know the are are many a lot worse off.

    • profile image

      anonymous 6 years ago

      Dermato...whosiwhatsit, my thoughts exactly. Hopefully it won't affect much on the trunk or hip areas. I've also learned that there has been a recent DePuy Pinnacle Recall for people who have had a hip implant.

    • Lady Lorelei profile image

      Lorelei Cohen 6 years ago from Canada

      I have never met another myositis sufferer on here before...It is such a rare illness. I have JO-1 antibodies which also allots me the wonderful status of polymyositis and multiple forms of arthritis. If you have not visited here yet .... www.myositis.org has an amazing online forum support group. You enter in through the community link then forums.

      Best wishes

      Ladymermaid

    • profile image

      anonymous 7 years ago

      @anonymous: hi i have dematomyositis as well as rheumatoid artheritis and fibromyalgia im anti jo 1 also im 26 and have had it since aged 8 i am now severley disabled and getting iller the damm disease is the burden of mylife because of it ive has two prem babies my second son passing away at 4 months old i wish there were a cure!

    • EpicFarms profile image
      Author

      EpicFarms 7 years ago

      @anonymous: Thank you for your kind words Clare, I'm so very glad you were able to find some comfort here (that was my greatest hope in creating this lens). I am much improved, and hope and pray that you will soon be the same!

    • profile image

      anonymous 7 years ago

      I was so pleased to read your entries and although scary - I have found reading them a comfort. I am being seen by a consultant on Tuesday. I have dermatological problems with my hands and the JO1 antibody (which is associated speficically with poly and dermatomyositis. I have along with muscle weakness in wrists, swelling in fingers etc and can so relate to the issues of fatigue and frustration. I hope you continue to improve. Clare

    • EpicFarms profile image
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      EpicFarms 8 years ago

      [in reply to joy] Hi Joy - I am not a doctor, so I certainly cannot give you medical advice; your sister should see a Rheumatologist (if she hasn't already). He will order a muscle biopsy for confirmation of Dermatomyositis. They do not normally start steroids until after the biopsy, because it skews the results. The steroids are horrid, but effective, and she will need to stick closely with her doctor during treatment. I hope everything goes well for her! - Jen

    • profile image

      anonymous 8 years ago

      hi, my sister is having these symptoms. she already had blood test, and emg. but it really looks like dermatomyositis already. judging from the pictures i've seen. i don't like her to undergo steroids. but i know it's a must. do you think it would help to start on steroids then after the inflamed muscles subsides she could go to naturopathic treatment. thanks. God bless! and take care!

      joyleen78@gmail.com

    • seashell2 profile image

      seashell2 8 years ago

      Interesting and informative! Good job!

    • Heather426 profile image

      Heather Burns 8 years ago from Wexford, Ireland

      you're the only person I have ever heard about having this. Hope you get it under control! thanks for the explanation. It could help someone with their weird symptoms.