Dermatomyositis I have been there...
I actually came to this site because of a "Lisfranc" foot injury. I decided to see if there was a Dermato board and I was surprised to read how many people are battling it. I wanted to answer everyones questions because I have been through it all with Dermato. So I figured I would just share with all of you my experience.
I was 23 when I was diagnosed with Juv Dermatomyositis and associated Ischemic Colitis that had caused 7 bleeding Ulcers in my colon.
I was living a normal life..married with a 3 year old. I was working and began to wake up with stomach pain. It burned and made it hard to eat because my stomach would get upset. I then started spending hours (literally) in the bathroom on the toilet feeling like I needed to go but didn't. I slowly started to get worse. The Dr dismissed me saying it was IBS and gave my Pepcid. Then I woke up with this weird rash ALL over my body. My hubby noticed I was lifting my leg into the car with my hands. I felt like someone attached weights to my ankles. I started having trouble lifting my son. My stomach pain became severe. I would fall asleep in the bathroom crying. I was passing blood in my stool. Then I was having trouble swallowing. I was in and out the ER and my Dr office. They gave me so much antibotics...they had no clue what was wrong. Weeks of no answers and I was getting worse. Lost 40 pounds, couldn't walk, couldn't eat. It was literal hell on earth. My poor family didn't know what to d for me.
I live in Los Angeles and went to one of the most famous fancy hospitals where all the celebs go...and they could not figure out what was wrong with me. I hurt so bad. To this day (after 3 kids all natural births) I have never felt pain like that again.
I had a battery of tests and procedures done. MRI, CAT scan, EMG, muscle biopsy, angiogram or is it angi0plasty (they injected dye into my groin) the even biopsy a piece of my face!!!
Finally they asked me to be a case study. Oh no I was the first human EVER to have some weird illness and when I died of it they would name it after me!! (this is what I thought) They treated me so mean because I cried in pain and they didn't want to give me pain meds because I was to young and could become dependant...but I WAS SUFFERING.
Finally, a Rehumatologist (sp?) from UCLA said she recognized my symptoms...as a auto immunity like Lupus...she tested my CBC and SED rate...BAM we had an answer...THANK U GOD! And the 6th round of colonoscopy and sigmoidoscopy and the other one down the throat showed 6 blleeding ulcers in my colon due to my auto immunity flaRE UP.
I was placed on 120mg per day of prednisone and don't remember how much Methotrexate, and an arsenol of drugs...pain meds (finally) methodone, oxycontin(bare with my terrible spelling) and ultram, prevacid, you name it I took it...I was a walking pharmacy!!
Spent little over 3 months in the hospital. One year on the meds with slow weaning down till no more meds needed. I had some loose skin and stretch marks, and now I gain wieght easy...I use to be thin but now I am heavy. I get achey and fatigued sometimes...but you know what?
I have not had a flare up ever again. I have had two kids since (total of 3) and I live a normal life. It is just a bad memory now.
Here I am present day in a cast post foot surgery. Because of the mass steriods my bones are a bit weaker than a normal 31 year old. The son I had 4 years after my Dermato bout is mildly Autistic and I fell on the sidewalk trying to catch him (hes a runner) and dislocated the bones in my foot. I had surgery and had 3 screws put in my foot to hold them together. I have not been able to walk (here we go again) since the accident June 19 and will not be even able to try till mid September. CALCIUM CALCIUM! take it...and your folic acid. (I didn't listen and ignored the DR)
Anyways other than recent foot drama I live a normal life...I wish you all well and know my outcome is not typical and we are all different. God bless you and your families and stay strong. Miracles happen everyday so keep fighting. Take care.