Dermatomyositis PSTD
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It's been about 3 years since i was diagnosed with dermatomyositis (a rare autoimmune immune disease centered around skin rashes and extreme body muscle pain) ... and it has caused me stress ever since them, because it was such a traumatic event. I live in the USA and so I am really fortunate to have all of the healthcare resources that I had when this event struck my life. This is not a pity party, it's just me putting my feelings out in the open and hearing if anyone else has similar situations. So let's begin... woo!
When sophomore year/10th grade was coming to an end, I was 16 years old when I noticed this strange rash on both of my legs. The rash covered my whole leg- even thighs. It looked fungal so we didn't really thing it could be anything important- we just thought I used a bad moldy razor on my legs and that is what caused it. It went away after a month and summer started. (this little detail wasn't that extremely important till the diagnosing of my illness)
At the beginning of 2014 summer, I went on a school trip to Europe in June... And we walked 8 to 12 miles per day for 14 days. I must note that I am a tiny person who weighed only 85 to 89 pounds and measured to be about 4'7" back then, so i had no muscles or fat. It was nice being in Paris, London, and Dublin and I am SUPER fortunate to have been able to go on such an amazing opportunity, but lots of excessive walking lol. I was forgetful about buying sunscreen because I usually never worn it unless I was going to the beach. So the intense sunlight (it was sunny in Paris) definitely helped trigger the dermatomyositis.
I came back and i was super sore and tired. I thought i would just need to sleep it off because it is jetlag and lack of sleep. However that wasn't the case, because ever since I got back from the trip, I slept well enough over 10 hours about everyday, and when i woke, i felt like i did intense crossfit sessions in my sleep.
So July was fun because I went to the ER about three times to get answers. And it was so upsetting not knowing what exactly I am sick with. I thought it wasn't anything major, just like rhabdomyolysis because of the 8 to 12 miles we walked everyday. I did drink lots of water everyday after we suspected that it could be rhabdomyolysis (which it wasn't IRONICALLY).
On the last ER trip, i ended up being an inpatient for 5 days. So many blood draws and so many tests... It was a lot on my 16 year old self. The muscle biopsy and the MRI showed the inflammation of my muscles and the rash on my legs helped prove that I did infact have dermatomyositis- but in my cause juvenile dermatomyositis since i was a minor (sorry if that didn't make sense.. it's hard to explain this).
I first started on the wonderful (sarcasm) Prednisone on a dose about 40 mg. So i was trying to get back into school and have a normal-ish life... but Prednisone caused me to have insomnia and extreme feelings like heightened anxiety. Then of course, I started my 10 mg methotrexate which was the injectable kind to really chill my immune system as soon as possible.
I didn't go back to school for a week. And even then, it hurt so much moving. And even though I had leeways and accommodations for me, I still pushed myself to be a normal 16 year old. And it was hard for me to just accept the fact that I wasnt like any other 16 year old and I had to wait longer to do what 16 year olds do, like getting a driver's license or getting a job.
And junior year in America is such an intense year where you have to be good about getting good grades and being in clubs and doing sports and making your school career look flawless so colleges will be more inclined to take you as their student. But i couldn't do that. I was super dependent and I disliked that so much. I went home as soon as I could so i could rest my muscles.
Over these past 3 years, i have really made myself surpress and forget most of the little details of when dermatomyositis was strongly in my life. For example, my parents told me that on some occasions my two older brothers found me in my room on the floor not moving and crying because I was hurting so much and couldn't move. (i remember some of those events now since they helped me recall those memories).
That whole summer has caused me to have insomnia (what is sleep lol) and feel anxious 24/7 and sometimes go into bouts of depression. I don't like going out in the sun a lot because I am scared the sun will trigger the dermatomyositis. I do wear SPF 100+ sunblock, but even that isn't enough to make me feel safe and comfortable. Multiple fights or bad situations have been caused by my paranoia of triggering my dermatomyositis. I am also jobless at the moment because I am so scared that I will hurt even after one day of working.
BUT I am in a community college taking classes and I am trying my hardest to have a social life (it is hard for an anxious introvert... but i'm trying my best) and joining clubs and all that fun stuff. And of course I am eating healthier to get vitamins and exercising as much as I physically am capable of (slow and easy and i'm lazy so exercise is not a second nature). For the past month, I have been taking Prozac to help my depression (maybe anxiety but i don't feel like it is helping yet) I am so grateful that I am better (no more methotrexate for the past 7 months!) and if the dermatomyositis pain comes again, i do have multiple healthcare and hospital resources to help me put it back into remission.
Also I've seen two therapists and a physical therapist, and now one psychiatrist over the three years, and they all have said this was a super traumatic event and I am definitely facing PTSD. And I truly agree.
I am definitely am stronger than I was but fear is controlling my life and that is a big issue for me because I crave independence and freedom.
I'm trying to cope and deal with the fact that dermatomyositis is a chronic illness and could come back at anytime. And also remind myself how I shouldn't be scared because I have been in remission for about 2 years now. It's hard.
So if you have any experience with a rare illness or an autoimmune disorder or anything, feel free to add your thoughts and experiences. We can form a support group... :"
0 likes, 2 replies
modelar sgbdoesart
Posted
Hello sbgdoesart,
It's incredibly tough to accept a chronic illness, particularly when theres little knowledge and therefore no real helpful support to overcome and heal.
I have been diagnosed with fibromyalgia and due to the absence of visual ailments has prevented me and others from accepting this as a serious medical problem and also being met with ignorance and lack of any beneficial support medically and emotionally.
Autoimmune is on the increase and my perspective and that of many researchers/functional practioners is that it is our modern living that has contributed /caused the epidemic.
What we eat , drink,think, breath....
It is believed that it is the extreme stresses our mind and body experiences ie environmental toxins, low nutrient foods, viruses, bacteria, fungus and mold, super bugs - due to antibiotics, stresses from work/college..etc.
It is also believed by medical authorities that autoimmune generally is incurable .
However there is growing scientific evidence to prove that with correction of nutrional imbalances and retraining the emotional response that autoimmune is something we are able to overcome and recover from.
You only have to look on YouTube to witness the thousands of success stories.
I am in the UK and unfortunately the new research from around the world hasn't been fully embraced.
I begin a treatment program end of September in the first UK based clinic treating ME/fibromyalgia ..using psychotherapy/nutrition and testing - ie thyroid, mitochondrial function, serotonin etc...
Unfortunately I have to pay(borrowing money from my mum)
Many of the practioners have also recovered from this condition, and are trained and highly experienced.
So I feel I am in good hands.
I guess my take home view on all of autoimmune is....find the right practitioner, do the test, follow their advice on lifestyle and nutrition and there's a very good chance you'll be on the road to recovery.
Ps.
Listen to meditation videos- they have been extremely helpful when the anxieties get a hold.
Best wishes 😊
ayde2016 sgbdoesart
Posted
Hello! Is crazy how having this decease change your whole life ...i was diagnosed with DERMATOMYOSITIS last year ..i was working..and I was doing fine..i went to zumba classes...like any normal day...next day..at work I started to feel weak specially in my arms and shoulders by then I had a bad rash in my hands ,but I thought is was from the dish soap!.. once my day was over from work..i call my doctor to see if she can see me ...i went with her , took some blood samples and she told me to come back...one week later she call me...ans send me to a reumatologys..the reumatologys also took some blood samples and a muscle biopsy...one week later...she calls i go to her office and tells me the bad news you have dermotomyosistis so she put me in 80mg prednisone..after that I had 2 surgery because I had liquid in my right lung..but I was still feeling weak I lost 33 pounds in 4 months..i had to quit my job then after getting out of the hospital..my reumatologys put me in methotrexate...and something went wrong...7 months had past since I was diagnosed with DERMATOMYOSITIS and i noticed my under arms where like hurting is like a burning sensations..then i started to have .."dead skin is so horrible to see my arms they are black..like when you cut yourself and after that you have that black hard..thing that you need to leave alone until you skin heals..well mine is big size ..i went to the dermatologist and I still don't know why I'm having that in my arms...aldo have one in my back knee..and there's another one coming out in my right knee I don't understand..my dermatologist said is because of methotrexate...but not sure...i had skin biopsy and it only show inflammation so she said to take 40 mg of prednisone....still don't know why of my dead skin...