I am 24, from Ohio, and have widespread plaque morphea, the start of linear morphea, lichen sclerosus, and a lot of joint pain and fatigue with hands being swollen frequently. I am a biology and sociology college student and physically active (despite the pain) who currently works in the medical field with aspirations to attend med school. Sorry for the length of this post, but I wanted to give you the full picture of my sclero-journey...
This is my first post in the Sclero Forums despite my diagnosis about a year ago. I have found myself extremely frustrated in the last few days- as I have had so much widespread pain through my body, I feel like I can't do anything myself. I have been feeling this way most days for about 2 years now-which is what prompted me to finally see a doctor. Below is my story and some questions for those of you sharing frustrations who might have some advice and answers. I have widespread morphea, lichen sclerosus, and am wondering if I could be possibly have more?
Since about the age of 7, I had this dark colored spot on the left side of my abdomen. It never bothered me, it was just there seemingly overnight. It's about 3 inches in diameter. I can remember my mom taking me to several doctors who told me it was just a birthmark. Then a few years later, I can remember it starting to itch and burn with bright red on the edges-it started to get bigger. At about age 19, I started to notice a few smaller spots popping up that looked similar to this one-under my armpit areas and along my pants line. After tanning, these spots would become a lot more pronounced (I am very fair skinned) and I decided to get them checked once more. Once again, several doctors assured me they were birthmarks or cafe au lait spots.
Then about 2 years ago while in college, I just started to explode with more spots. The ones that I had started to grow in size, sometimes with pain. Aside from this, I was also battling debilitating fatigue, frequent illness, and widespread pain almost everyday for a year. (Pain so debilitating that simply laying in bed hurt and doing anything was just as bad. I also had bouts of 'creakyness', where my body cracked and made popping noises with any movement-my joints and bones feel rickety and creaky.) I started to not go to class, my grades fell. I felt as if my body was falling apart and there was nothing I could do. I went from being a highly motivated pre-med student to not being able to leave my bed most days and feeling guilty because I just physically could not keep up.
I finally decided to go out on a limb and see a specialist dermatologist, because while all this was going on, I was continuing to get more spots. I finally got my diagnosis of morphea. My doctor did not elaborate and all he said was "you have scleroderma, you can look it up online," and sent me home with a script for prednisone.(which helped with the pain and exhaustion but came with its own horrific side effects.) Needless to say, when I went home, the information I was bombarded with online was scary and horrific because he had not distingushed between local and systemic. I made an appointment with a rhematologist/immunologist at the Cleveland clinic.
The Cleveland Clinic doctor was wonderful and cleared up a lot of misunderstandings for me. My ANA tests came back negative for systemic sclerosis, but I did find that I also had morphea and lichen sclerosus overlap and a vitamin D deficiency so low it was almost untraceable (less than 10); which we decided could be the trigger of my pain. We discussed treatment options because my morphea was in a very active phase and seemed to be going through several phases of reactivation.
Although my pain on the whole is a lot better (most days are good days), I still do have very rough days. My vitamin D has come up to an acceptable level after being put on 50,000 units 2x a week for 6 months. My spots have gotten a lot worse. I now can count 4 spots that are larger than 5 inches in diameter. They start from the front of my abdomen and wrap around my side and back, with1 spot which is almost 10 inches wide, as well as 6 that encircle my breasts, and several more along my trunk and opposite side which are also expanding. My spots are indented, hard, and painful. Sometimes they itch but lately the pain in my chest from my spots have been making me feel like I'm having a heart attack.
A few weeks ago I also noticed a discoloration and spotty pattern coming down the backside of my left arm and down my bicep on the right. I am not 100% sure that this is the morphea, but it hasn't gone away and only gotten darker, so I am venturing a guess that it could be linear progression of my spots. My lichen sclerosus (which I have on my body as well as genitals) has also flared and I have been working with my OB/GYN (obstetrician/gynecologist) to treat it. I also have about 7 lipomas inside my abdomen which I can feel under my skin (the doctor told me they are nothing to worry about).
Lately, I have been starting to feel creaky, achy, and in pain a lot more. I have also noticed my hands hurting. They are frequently stiff and swollen and puffy from the finger tips to my wrists. I wake up with them swollen and sometimes they spontaneously do it. I do not have Raynaud's (no color change or response to cold) but I do have some Sjogren's issues (dry mouth, dry eyes). It seems that things are getting worse, despite my creams, steroids, and light therapy. The next step is methotrexate and I am not sure if I can handle it in my last year of school.
I am wondering if I am 'progressing.' I understand that morphea does not 'turn into' systemic, however I do understand that systemic is variable between people and diagnosis is not cut and dry. I have a couple questions that maybe people can lead an ear to from personal experience or knowing someone else:
Does anyone have both systemic sclero AND morphea? Can they be presented the same time?
What is early systemic like? How does it manifest? At what age and how did you know it was getting worse?
Has anyone else had issues with their hands swelling and hurting randomly? Or widespread pain?
Is it possible to have both Morphea and Linear Scleroderma?
Thanks to everyone for your advice and support! I look forward to hearing from you and browsing the forums. Stay strong and thank you! :D