The start of a (hopefully smooth) journey!
Found this website in hope of getting to know others with similar struggles. After reading through some threads, I think I've found the right place! Let me start with some (I'll try to be brief) backround.
I was born in Midland, Texas and soon moved to Boca Raton, Florida when I was 2 y/o. It all started in the 5th grade. I had been complaining of pain that my pediactrican soon named 'growing pains'. I suppose after continuing the complaints, he reffered me to a very popular pediactric rheumatologist. My mother and I traveled down to Miami to visit him where I tested with an elevated ANA accompanied with symetric joint pain. He diagnosed it as juvenile rheumatoid arthritis. I don't particulary remember starting any medication, given that the pain was definelty nowhere near severe.
Years went by and I continued to be extremely active (spent 5 nights at the dance studio, then starting playing sports all through out high school..) My main symptom was still the joint pain. Towards the end of HS, I started getting muscle pain and 'nerve pain'.. (these random breif bursts of shooting pain in the most random of areas). Though the continual development of pain, I stayed pretty active and tried to ignore it. Every once in a while I would mention it to our family doctor but becuase I wasn't so faltered by the pain I don't think he took it too seriously.
I was again tested short after high school, and my ANA was normal. This detered him to believe that the pain I was experiencing was stress-related (due to frequent moving and paretns separeating and divorcing). The stress comment angered me. My activity level started to decrease due to working more often and the pain to start worsening. I continued to have bouts of staf infections from the occasional scrape or cut, as well as several times a year colds and flus. While visiting the same doctor for a common cold, I noticed my patient profile while waiting for the doctor saw they had me listed as mildly obese. Mind you, I'm 5'3" and at the time, I was 150 lbs. I wouldn't typically call that obese as I am a very curvy woman.. But hell, what did I know.
I started having other symptoms. (Until recently, I hadn't connected the dots to Lupus, or anything else auto-immune.) I started getting a rash while spending time in the sun.. At first I thought it was maybe the necklace I was wearing (the rash was localized to my chest and extended to my shoulders and neck) and being in and out of the lake (in Texas). The next lake trip we took, I didn't wear the necklace. The rash was pretty itchy, but was scaly and raied and weird and hurt way too much to even think of touching it. I assumed it was from the lake water, though. I grew up in south Florida and had only spent my water activities in the ocean.. So maybe being in the freshwater of the lake was irritating it. But then I went to Florida to visit mom, and the same rash appeared after being in the sun.
Then I was told I was mildly anemic. I started taking the iron supplements she perscribed me to, but the side effects involed weren't as bad as whatever the anemia had been causing me. I stopped taking them. I was partying a lot and staying up super late regardless of having to work the next day. I was exhausted. I was soon transferred/promoted to a more secure job within the company with an office and everything. I straightened up. Ended up getting serious with a boyfriend. I started getting more sleep and hardly ever party anymore. I still wake up as exhuasted and fatigued if I had been out partying all night, which kind of worried me.
Several months ago, I started having some upper back pain that was localized to the left side. It was extremly mild and almost only was noticable if I was lying on my stomach for a long time. I had been calling it back pain for a very long time.. Until it started paining me while breathing. After a month or so if it bothering me, mildly, I saw a dr. It only hurt while breathing deeply. He told me it was costocondritis. After two months, no matter how deep I breathe, it hurts. I also can be holding my breath and still feel the aching pain. Sometimes, when I'm stressed... Or even when I'm doing minimal activity around the house, it just starts throbbing. The pain has slowy moved to the other side as well. I'm starting to be convinced it isn't costo, as the typical sign of the condition is the tenderness when pressing on the sternum or the other rib joints is not there. And if I HAD to point to my pain, which is pretty hard to do, it's almost like under the armpit area of ribs, which to me, doesn't make much sense in costo. Again, what do I know though.
On top of that.. I've starting getting some sores on my scalp. They're sort of itchy but very tender to touch. I also very frequently get some sort of facial rash. I'm not sure if it's the malar rash or not.. I thought for a while I was getting fevers but when checking my temp, it was alwyas normal. Who knows.
That's my current story. Hopefully as I restart this journey of diagnosis I'll have some more positive feedback! SO happy to find this community. Wish me luck!
"Rule number one is, don't sweat the small stuff. Rule number two is, it's all small stuff."
Dx: Potential Lupus, Diffuse Systemic Sclerosis, Mixed Connective Tissue Disease
Rx: Prednisone 5mg 1x daily, Lyrica 75mg 2x daily, Omeprazole 200mg 1x daily, Xanax .5mg prn