Reading Forums of Others With Dermatomyocitis Hmmm...

So I wanted to offer some perspective about this disease and just autoimmune diseases in general. I really think a lot of the emotions going on in these comments are similar to the emotions going on in many other disease and in some degree to all diseases. As everyone knows, it is always helpful to look at people with the same illness for emotional support and treatment options. For instance, should I be on the traditional treatment? This is a good question. I just copied and pasted this from this site: http://www.dailystrength.org/

"Hi Everyone,
I've had dermatomyocitis for the past two and a half years. I was diagnosed at 19. I should have joined a site like this a long time ago, instead Ive really let things get to me and have been near suicidal at points, which scares me because I am only about 3 years in and do not know how I am going to make it the rest of my life if I can not handle 3 years. I am not super depressed or anything right now. I'm actually feeling good, I do get super depressed when I am on Methotrexate. Does this happen to anyone else? It literally makes me crazy. I was on the shot but couldn't do it anymore. It made me sick, and I couldn't even look at the color yellow with out wanting to vomit. Just talking about chemo makes me sick to my stomach. I am "on" the pill form now. I put that in air quotes because I do not take it like I should. Im supposed to take it weekly. But havent for months, which is why I haven't been depressed. I hate lying about my medicine to my mom and doctor, but the stuff makes me incredibly depressed. I do not want to be near suicide again, and when I'm off it im fine. When I do take it, I have a nervous breakdown and cry hysterically, and am then sick for at least 3 days afterword. I can not eat or do anything but feel sick to my stomach and start brooding over life, which makes me feel worse because I know there are people who are a lot more sick than me. Does anyone take another medicine besides Methotrexate? My body is going to fall apart if I do not start taking it again, yet my problem with Methotrexate is so bad that I'd almost rather be paralyzed from this than take it. I've always had a really sensitive stomach (I can't swing on a playground swing) lol. Any help would be very much appreciated. Thanks for listening to my long ramble."

So I am randomly interjecting here inbetween these forum comments. :p Now obviously this girl above is struggling. She does not want to take her medicine because of the side effects on her mood. Obviously she cannot live a lifetime feeling suicidal on these drugs...the comment below seems like a natural next step to her difficulties...

"I would tell your doctor that the meds make you sick and maybe they can give you a combination of things or something that is easier on your stomach. I tried to not take meds for Dermatomyositis and it affected my lungs so, now i will take meds for the rest of my life. I take prednisone and imuran. I am sure they can come up with something that will help you. Good Luck! The side effects might wear off after being on the meds a few weeks. "


So perhaps if the combination of the drugs are changed she can have the positive effects of the drugs with less of the side effects? This is a possibility. The most important aspect of this comment is the warning it gives. Autoimmune disease can affect the lungs! Not being on the drugs puts one at a risk of this happening to them. Of course being on the drugs there is still as risk of this happening as well. If the proper alternative treatment is being undergone perhaps all of this can be avoided. How does one know if they are on the proper alternative treatment? These are all good questions. For me I have been feeling better, so I know something positive is happening in my body. My ANA is still quite high though despite all of my other improvements. Of course there is always the chance that I am making the wrong decision. I always say, if I was getting worse then I would know I was doing something completely wrong. So far I have not gotten worse that I can tell or that my lab tests tell.

"Hi,
I have lupus and APS and am on the injectible form of MTX right now (which isnt working well). I don't get side effects from it like you do, but I'm really scared to try another chemo drug if this one doesn't work. My advice to you is to speak to your dr. about switching to a new med because it is VERY important to take your meds and control your immune system. It will only get worse for you if you dont and you are so young....There are other meds out there that may not make you as sick and will help control your disease. When it gets out of control, like my disease's are, its much harder to control them. Imuran may be better for you. Plaquenil may even help (not sure if that is used for Poly). Im on 3 immuno suppressants and still sick (plaquenil, predsnisone and MTX). Not sure if I have Polymyositis but I have severe muscle issues right now. You really need to tell your dr. whats going on so they can try you on something else. They will try you on something until they find the right med for you. Also, they can prescribe you anti-nausea meds to take with any chemo type drug that can help with your stomach problems. Hang in there and please call your dr.
Hugs"

Another perspective and another experience. These autoimmune diseases are perdy scary folks! Goodness! DD:...

"TAKE CHARGE!! Tell your doctor no more! You are the one in the drivers seat. You are the one responsible for your medical care, not doctors, nurses, ect. I tried every "treatment" the doctor told me I should. ALL of them made me worse.

Not hear to preach or wave some weird naturalistic lifestyle in your face, but I stopped eating processed foods and started to eat healthy. Six months ago I was preparing to die, today, there may be hope.

I told my doctor no more drugs like chemo, or steroids or immune suppressants. He was fighting me all the way, until one day I could get out of the chair in his office by myself. He is on board now. We work together, and we talk things through together.

If your doctor does not listen to you, I say walk away. Go find a doctor that will listen to you, and take how these terrible drugs make you feel into consideration."

And then this comment. Hmmmm...Whenever the drugs seem to completely and utterly fail that is when I generally see people going more holistic. And she can get out of the chair now by herself when she is off the medications and eating better. Interesting.


IT'S A LOT TO THINK ABOUT! IT'S ALSO VERY INTERESTING TO SEE THE POWER OF DIET. IT'S ALSO SCARY TO SEE THE DISEASE AFFECTING SOMEONE'S LUNGS.


Holy smokes! It really is a lot to think about!

My angry, bitter stage.

The truth if this diagnoses is correct, I am partially disabled. But it's invisible and working out may actually tear and degenerate my muscles faster.


Not all of my muscles, only the one's mainly affected by my disease. It leaves me not able to work out at all. Granted I am not in a wheelchair. But I don't know if I'll end up in one. It may be sooner than I could have ever imagined.


There is a chance that this treatment will fail.
Or maybe I will end up dying of cancer like a lot of people with my disease. For some reason dermatomyocitis and cancer are often associated.


*BUT* Perhaps they are associated because of celiac disease, which has been shown to be an underlying cause of cancer and now being on a gluten free diet my risk for cancer has greatly decreased?? Perhaps I will fight off this strep, heal my stomach, and my disease will go into remission. I will then take all of this knowledge that I have gained about being healthy and become a for life health nazi. This of course is my ideal scenario.


Wouldn't it be nice.


It would really.


I don't think I've truly accepted the fact that I might not get better. Like I'm in some massive, epic state of denial. It leaves me working hard at trying to get better. It's nice to know there really is a chance, considering I've emailed a woman in Florida with my disease who received remission due to diet. Her take on it was a bit different than the one I am following now. Which is interesting!


Am I convinced still that I am going to die young? I don't think so. I really don't think this is going to happen. Based on a lot of gained knowledge. Based on the amount of improvement.


It's really like a puzzle! A time sensitive puzzle at that. But a puzzle. I do believe it is possible to solve a lot of the mysteries of health. How long each different disease would take, I obviously have no idea.


So I became angry. Really angry at the whole idea of major struggles, some of them being permenant. Wondering why there is so much suffering in the world. And such unequal suffering. Not that I want other people to have to go through what I went through, although I have gained from it. But really, if I live an entire life like this...I just don't think that it is necessary to teach me all that I can learn from this disease. I'd really like my energy back eventually. I'd really like my full mobility back. I put a great deal of effort into being energetic around people, but it's a struggle. I get home and I am really tired. I look at perfectly abled people not using their bodies. People who never really enjoyed being active. But me, I enjoyed being active! I felt an intense passion in being active. I snowboarded, ran, joined the military, worked out, dreamed of climbing a mountain someday, wanted to go backpacking, wanted to run a marathon someday, enjoyed swimming. I am in the process of possibly being kicked out of the military because I cannot pass a physical fitness test. I know I shouldn't feel this way, but it makes me feel shameful. It makes me feel inadequate. Am I going to be able to be a floor nurse a few years down the line?? Possibly not if this disease progresses. Yes I am currenlty a nurses aid, that is a lot of lifting. This disease makes my job twice as hard. But it's all invisible. And sometimes I cry and sometimes I look at the sky and wonder why the world that brings me so much joy can be such a hellish misery at times.
It's perspective? Perhaps. But look at the quadriplegic. Is that quality? I'm not a quadriplegic so I really have to say no. But hey I'm a different person than any other person out there and I have never experienced that type of what I would call suffering. Yes I have suffered. But nothing to that extent. I wonder if there is a quadriplegic out there who is happier than a completely abled person? For some reason I think I can answer yes to that question. 


The band the Postal Service.
"Let me please interject here. You're getting carried away feeling sorry for yourself."
Even Michael J. Fox, the man with a disease who up to this point up to my knowledge has never had a case go into remission. Parkinsons disease. He still named his book, Lucky Man. But what is his raw emotion really, what are his thoughts in his lowest moments? And then again there is Hunington's disease. That's a pretty horrible disease. A woman in the nursing home I work at has it. She used to work a full- time job. She used to live a normal life. Now look at her. What are her raw emotions. Both of these diseases take one's mind as the disease progresses. What are the last raw, completely genuine thoughts of people before the disease takes their mind?
Let me say it again.
Let it ring.


"Let me please interject here. You're getting carried away feeling sorry for yourself."


Paraphrasing here, but Fox stated if only my body was where my mind is now.


Disease does make one a better person on the inside, even if they are projecting outwardly in at times a negative and angry way. It matures. It breeds intense compassion and understanding. A time is fleeting and our existence really is tenuous. Just in case you forgot because it is easy to do. Even if one believes in heaven, what does that entail exactly? I guess if it's heaven it's supposed to be good right? In my opinion there is a lot of mystery in this world.


That then turns me to ask another question. Can I be happy with whatever time I have left on this earth, even if it is not my most desired quality? Yes, yes I can be. And that's what I need to start doing. In all honesty it's better for my health. Now that's all nice and easy to be said, but what can I do to actually make this possible? I can list many obvious ideas: yoga, meditation, positive thinking, staying organized, getting enough sleep, seeing friends and family, trying to keep the most normal life as possible...and I can go on...and on...and on...
But what I think is the real answer is on a more umbrella, bigger scale...
I can work hard, learn, live one day to the next, and just enjoy the journey.
Yep. We've all heard it before.


Enjoy the journey.


Every damn day. I had to add this with thought of one of my best friends Roseann.


Enjoy the journey, every damn day!!!


I enjoy the curiosity. The world really is interesting. It keeps me going.

My Signs and Symptoms/Mostly invisible- If this is you, no you're not crazy!!

Ok so there were symptoms that I always took as normal that were not normal. I had these for years...Those all had to do with my stomach and the food that I ate. Diarrhea (ewww :p) especially after eating certain foods. Extreme fatigue after eating certain types of meals. I noticed it especially with pasta because I used to eat so much of it. Unfortunately none of thes alarmed me to go seek medical treatment. I did not pay good enough attention to my own body. Also I've always had allergies. I was already using a special shampoo, conditioner, soap, and soap detergant.

Now progressively working out started to become harder and harder. I remember trying to run, but my knees would swells up. I just took it as having bad knees. I also was more easily fatigued from working out. I just took that as getting older and being out of shape. One of the most noticable early symptoms was one day I walked with my friend Roseann a couple of miles, and after the walking my legs just ached and ached like crazy. I thought it was pretty weird. I also caught strep throat and could not get rid of it despite being given an antibiotic.

Early on I developed a rash on my forhead and on my chest. I also had some abdominal pain in my left lower quadrant. I went to the doctor for the pain and the rashes. I was given a steroid cream for the rashes. When that did not work I went to get a second opinion from another doctor. The rash had been getting worse and was now moving further down my face and around my eye lids. I was told that I had psoriasis, so they gave me a shampoo. Nizoral.

Then things became frightening and my symptoms became severe:
I woke up one day and my left arm was stuck at nearly a 90 degree angle DDDD: No matter how hard I tried I could not completely straighten it out (one of my only visible symptoms- at least my family could visually see this). I no longer felt like a crazy person. Something was seriously wrong.
My legs were so tight it was nearly impossible to put my socks on. So I stopped wearing then.
Half of my back went numb.
I had muscle spasms randomly throughout my entire body.
I developed carpal tunnel in both of my hands so severe that I had to use two hands to open my car door.
Tight arms and legs all of the time as though I just worked out.
Muscle weakness from physical activity.
My muscles would randomly burn.
My arms, legs, and neck became heavy and hard to lift.
I was extremely fatigued no matter how much I slept. I began sleeping 15 hours a day. 
I began falling often and had a hard time walking up stairs.
My abdominal pain became severe and left me bedridden for a few days.
My inner knees had a numbness and tingling feeling in them.
Red nodules formed on my fingers.
I then began not digesting my food properly. Food I ate would sit in my stomach undigested. I would wake up with a full tummy.
My stomach and intestinal areas on my back would burn.
Right upper quadrant (where my liver is) would burn.
...Then the extreme weight loss began. I lost 22 pounds, which was a lot for me. I went from 130 to 108. I went from a size 7 to a size 2.
I then started to become hypoglycemic. I would take my blood sugar with my grandmothers tester. I was usually around 70. This left me feeling out of it all of the time.
I had a cold like symptoms including a fever, sore throat, and chills.

My current symptoms and I am on no medicine aside from a long term antibiotic for the strept throat:
Muscle tightness and weakness from physical activity.
Muscles generally always feel sore in inner arms and legs.
Digestion is sluggish.
Red nodules on hand.

What's the big deal?? Autoimmune disease plus gluten free diet.

Who?? Me! Davea :DD I'm a 24 year old nursing student (I graduate in two semesters- woot- 'bout time)


What?? I was diagnosed with a pretty scary autoimmune disease- Dermatomyocitis (Dermaomyo what?? I thought the same thing :P) It's when one's own body starts to attack its' own muscles, which causes them to slowly degenerate (yikes! don't worry, this blog is not meant to be super depressing or anything!). This disease also causes redness of the skin. Thennn with a lot of work (you wouldn't think it would take that much work D:) and many months later I was diagnosed with Celiac Disease (Thank you Dr. Auckerman- a Celiac himself. This diagnoses is controversial because unfortunately CD is hard to diagnose.) Hmmmm...and this is when things get interesting- at least from a medical perspective.


When?? These shenanigans have been going on for about a year now (when my symptoms started to really show, although I think I showed subtle symptoms for years that I took as normal). But things started to get scary starting July of 2010. But I wasn't diagnosed with Dermatomyocitis until the beginning of February of 2011 and I also was not diagnosed with Celiac Disease until mid March of 2011.


Where?? O-H-I-O :)) Yep. I'm from Ohio, from near the Cleveland/Akron area.


Why?? Good questioooon!!! Why the heck did my body start to go super crazy all of the sudden?? That would be the main point of this blog.
And also I've learned too much during these escapades to not share. I want to encourage people to fight for their health, to not lose hope, and to form a partnership with their doctor. I also think it's important to have someone else to who can understand to talk with and to support one with their health. I would love to talk to anybody about their health. Even those who have a different diagnoses than I. The information in this blog, especially the information concerning autoimmune disorders has been giving me my life back, and it would be morally wrong for me not to share this vital information. I'm living proof that at least for me thus far I am heading toward remission. Just look at my labs (I will be sharing them :))


And last but not least. WHAT'S THE BIG DEAL?? I am currently not on corticosteroids. I am not telling anybody with an autoimmune disease to stop taking their corticosteroids, but I am not a fan of those drugs because they do not treat the underlying cause of the disease. They just treat the symptoms. And they can have such awful and scary side effects. Although I suppose it's a double edge sword because they have thrown people's disease into remission. But generally the longer one is on them, the more the dose has to be raised, and the worse the side effects are. Plus generally you do not reach long term remission with them. And I am living proof that thus far without the corticosteroids plus the proper diet and supplements that my symptoms have improved tremendously and I have the lab tests to prove it. I see no reason that I should not get full remission. My doctor specializes in nutrigenics. Gene testing and then placing a patient on a diet according to their genes. Yes the diet is tough to follow, but thus far it was been completely worth it. I am also on a long term antibiotic to fight the strept throat that my weakened immune system could not fight off.


...Aside from Celiac Disease being a possible underlying cause of autoimmune disorders, there is another form of treatment that has caught my eye. That is Dr. Brown's antibiotic therapy. That form of treatment is also being incorporated into my healing process. But I'll be getting into that later. I have read about some getting remission just on the antibiotic therapy, some with just a gluten free diet, and others with a combination of both.