Myositis and Me – Dermatomyositis and More
It is currently July 2020 and I started getting sick over July 4th week 2019. We were on vacation and as I was sitting by the pool (in the sun) a rash quickly appeared on my right shin. It was bright red and very painful – not even itchy. It felt like I was stung by many bees at once. I immediately radioed my husband at our camper to bring me some cortisone cream or aloe vera – whatever he could get his hands on.
Within the next four days my hands started swelling up; I could no longer make a fist; my jaw hurt so much to open my mouth, my eyes were all swollen and in general every joint ached. On 7/8/19 I went to my primary care physician and literally had no idea where to begin with my complaints. I was sure I was losing my mind – and probably dying. The exhaustion was unbelievable.
Immediately I had volumes and volumes of blood work done. As soon as those results came in I started my crazy journey.
The next few months were difficult. My first order of concern was my hands since my job requires typing I really needed to get that under control. When I went to the hand surgeon he gave me some cortisone shots which definitely helped me get through the next few months. My hands were still swollen and when he resolved one swollen area, another would pop up. His normal recourse would have been surgery but clearly alot more was going on so until we figured that out – surgery was not an option.
In September I finally had an appointment with my rheumatologist. I hadn’t seen him in more than five years because at one point I was diagnosed with Raynauds but that went into remission and I was pretty much discharged.
As I was sitting in his office there is a digital billboard type sign that scrolls through a series of autoimmune disorders. I was sure I had every single one of them. I was like “holy smokes” this is what my life is going to be like. I honestly expected all tests to come back as lupus. By the time I saw him my hands were bloody and raw. I had more bandaids than exposed skin. Every little movement I made caused my skin, which is now hard and scaly, to break open and bleed.
He referred me to dermatology for my hands, ophthamology for my eyes, oncology for cancer potential, pulmonology for my lungs, gynecology for a pap smear, back to orthopedics etc… The constant stream of tests started – blood work (felt like daily), catscans, xrays, MRIs, pulmonary tests, biopsies and more.
By December I had multiple diagnosis’ – Lupus “like” disease, dermatomyositis and Raynauds and we could start doing something about it. I wasn’t too stressed about it because I figured how bad could it be. Until I would go to appointments and say Dermatomyositis and people offered condolences and I knew I was in trouble.
So what is Dermatomyositis?
Well first, it is not a very common disease so you really need to have a medical provider(s) that understands what they are doing, looking for and symptoms. I am fortunate that I have an awesome team working with me. Per Wikipedia:
Dermatomyositis (DM) is a long-term inflammatory disorder which affects muscles. Its symptoms are generally a skin rash and worsening muscle weakness over time. These may occur suddenly or develop over months. Other symptoms may include weight loss, fever, lung inflammation, or light sensitivity. Complications may include calcium deposits in muscles or skin. The cause is unknown. Theories include that it is an autoimmune disease or a result of a viral infection. It is a type of inflammatory myopathy. Diagnosis is typically based on some combination of symptoms, blood tests, electromyography, and muscle biopsies.
It is a disease that affects women more than men and typical the patient is in their 40s or 50s though there are pediatric patients with the disease.
For me so far it means constant itchiness with my hands – all the time like my entire hand is soaked in poison ivy. My knuckles are all red, knuckles can be blistered, sides of my fingers blistered and blistering on my palms. Due to the calcification my hands become hardened and the skin breaks and bleeds with movement. Besides how extremely uncomfortable it is – it is so embarrassing that I try to hide my hands whenever possible. The same thing happens with my toes. To treat these I have to use cortisone cream on my hands and toes then followup all day long with a very strong lotion on my hands all day every day. This does help but it never gets rid of it. For my feet I also soak them in apple cider vinegar for 15 minutes then add in baking soda. It is very soothing and really helps to calm down the inflammation.
It also means swollen joints and I never know what each day will hold. Sometimes it is my hands, sometimes toes, sometimes shoulders, knees, elbows etc… At one point I couldn’t hold anything – if I tried it would fall right out of my hands.
The exhaustion is unbelievable – I wake up, take a shower, get dressed, lay back down; make the kids breakfast, get them out the door to school, lay back down; drive to work and do all I can to survive the day – get home from work, lay back down; make supper, take my daughter to karate, check on my horses, go home and lay back down; get up, do some blogging – lay back down. Prior to this I would do all my own horse chores (we own three horses) and that is very manual work. Once I started not feeling well I have all I can do to just prepare their grain buckets. I don’t even have the energy to fill their water buckets anymore – so I pay someone to care for them and all I do is enjoy them. Of course I no longer have the energy to ride – it takes alot of energy to tack up a horse.
I already had joint issues and have had multiple surgeries but now the struggles are at a whole new level. With constant inflammation there are days I wake up and just say – nope, going back to bed.
The jaw pain comes and goes. It is quite annoying and painful. I have insomnia and can lay there for hours not sleeping even though I am beyond exhaustion at all times. I try to lose weight but then I end up with kidney issues and more. The medications make me nauseous all the time. Now I have interstitial lung disease as part of this fun stuff. One medication caused me to have medication induced hepatitis. My hair is thinning daily – there is no way I won’t be bald in a few months and that is totally stressing me out. And kidney stones just keep coming and coming – I am always in the process of passing a stone and once so far even had to have surgery to get it unstuck.
Sitting in the sun by the pool or at the beach is no longer an option. I sit under a tent and if not under a tent I have my sunglasses, long sleeve shirt, long pants and shoes. The good news is I don’t need to be embarrassed any longer about how I look in a bathing suit – but now it just isn’t fun doing the things I used to enjoy.
My bones fracture, my tendons rupture and muscles tear. Muscle weakness causes me to fall in ways I never would have before. In one year I have fallen multiple times resulting in wrecked shoulders, torn muscles and a chipped bone. Even my teeth are suffering. Fingers and toes are starting to bend in unnatural directions and I can no longer straighten them. My eyes are extremely itchy all the time – sometimes they are just swollen and other times they have large red, rashy rings around them that make me look like a zombie.
I get these spontaneous blood vessels bursting – it is the strangest thing. I will be sitting in a meeting and all of a sudden my arm starts to bleed out of a pin prick sized hole and has no desire to stop bleeding. Not just a little – like the drip down your arm kind of bleeding. So I need to step out of meetings often and deal with it. Bloody noses seem to be a normal part of my life now too.
Things get better for short periods of time and I almost forget that I have these issues. But then two months later the flares start and I am all over this nonsense. When I first started on medications I gained around 20 pounds – which I completely did not need. Now I have lost that 20 pounds and hopefully continue to lose more.
COVID comes along and now everything is a crisis – I can’t go grocery shopping, can’t go to work, can’t do anything and therefore my family really can’t either since they can’t bring anything home to me. I am to susceptible to everything.
When I started this journey I had a gynocologist, primary care physician and ophthamologist. Now my list is this long:
Primary Care Physician
So that is year one of my journey. I am hoping by year two I have a remission to report but who knows. At this time I have switched to a predominantly plant based meal plan. It isn’t extravagant but in some ways I am feeling alot better with this way of eating. I seem to have a bit more energy but still need to lay down throughout the day. The diagnosis was the hardest part and now that I know what the issue is we can work through trying to put the diseases into remission and be more comfortable. It will never go away but I look forward to periods where I can just be comfortable.
I am incredibly thankful for Facebook where I can run questions by people around the world who have been there and done that. I am incredibly thankful that I have a team of medical providers that knows what I am talking about and how to proceed and consult with one another.
Now I will say that for some reason I am a very tricky case. I really don’t know what is tricky about me but I am used as a case reference often in the medical field over the course of the last year. I hope I get to be a success story for them – that’s my plan anyway.