Help?😭😩
I’ve been on my medical journey to find out what is wrong with me for a couple years now. Based off everyone who has seen me they like no way it isn’t autoimmune. I thought FORSURE I had RA given how painful my joints are in my hands (mind you I am 27!) but while positive for RA my levels are within normal range. My ANA test is negative. Lupus is negative. I do have abnormal results but nothing points to anything. Rheumatologist ordered a scleroderma panel and I was so disappointed still having no answers I waited til last minute to do the bloodwork. I am a very hard stick often needing to use an ultrasound machine so it can be a long process. They always say I have thick skin as well. So I thought might as well just do it to cross it off the list. The results came back and everything is normal besides 1. The th/to one which is 18. When I looked it up it scared the heck out of me. But if everything else is normal that’s means it’s not it? My lungs are not in great shape. I’ve had asthma since a baby and did have many attacks that were crazy but none after 18 but my lungs were no better because the asthma made me susceptible for sickness. I had bronchitis and pneumonia every year. It caused damage to my lungs. I haven’t had a scan on them in a LONG time but I did have a CT scan on my abdomen for other reasons and the findings showed the bottom half of my lungs and it listed the damage to them. So even though I feel like my lungs are okay they’re not lol it’s just all I’ve ever known. Seeing what the th/to can do to the lungs and heart absolutely scare me. I had an ultrasound on my heart from cardio after 6 abnormal EKGs and the cardio said my heart is all good. I will now list everything I deal with
-joint pain mainly in my hands
-swelling in my hands and on really bad days my arms too. Sometimes I’ll have good weeks where only 1 day it will be swollen. Other times it is everyday. Most the time it’s that I wake up with the swelling and it calms down throughout the day unless it’s real bad. But people can notice it even when it’s down. Rare times it will start up at night before bed. The joint pain and swelling started in 2018 and it started as a once a month thing and became this now.
-redness /splotchiness. Especially in my hands and feet but has now spread my entire arm. It used to go away but now it’s “permanent” … purple shades as well.
-whole body stiffness when I wake up it is so intense now. This started around 2016 but not as bad as it is now. I stretch every night to help. When I get up to walk some morning I straddle like a penguin. It is so hard to move my joints. It’s like it makes my muscles ache sometimes.
-I have POTS and low BP. I used to take meds to raise my BP but it hasn’t been needed. Diet really helps. But oh man when I have those days when my pots/bp is low and I wake up with the stiffness and be weak on top of swollen af it really sucks. Whole day is spent in pain and can’t do anything.
-I do have nerve damage. In my back left upper side. The developed during having to nurse and rock my infant over 4 years ago and still hurts. Sometimes parts of my upper thighs though this has improved! My left big toe which seems to be spreading still causes pain like my back.
-GI issues. Colitis I think? Idk if that was a one off diagnosis and I don’t have it anymore I don’t know. I had the CT scan showed colon was infected and inflammation. I deal with severe constipation and now take linzess which helps a ton. While on it for a bit I had a colonoscopy they said my colon wasn’t inflamed anymore but I had a pre cancerous polyp which was removed. I’ve dealt with pretty bad bloating my whole life. Literally look so pregnant. I wish I atleast was a bigger person cause it looks so odd being small and have a huge belly. It used to go away during the night and I’d wake up with a flat belly now I’m lucky if that even happens but when it does I all of a sudden have abs 🤣
-my facial rosacea has gotten worse. I’ve seen much worse than mine but for me myself it’s worse. It never calms down.
-KP bumps. Used to just be on the back of my upper arms and come and go. It’s been permanent since 2018 now and have spread to my legs and every part of my arms. No matter what I do it doesn’t go away. I’ve had prescription cream even. I figured the KP is why my skin is thicker but I don’t know.
-I’m allergic to vibration (yes lol it’s a real thing!!)
-when I get out the shower my skin is so itchy. Cold water has no effect. It’s got to be warmer /hot water. This started around 2020? Maybe a bit sooner.
-if I do too much the day before my swelling is going to be worse.
-I bruise easily.
-endodontist thinks I could have something wrong connective tissue wise because show badly my gums or whatever respond to dental work. I have to be prescribed a steroid (which helps a ton immediately)
I may have forgot something and I know some of this is not related at all but I wanted to give a full picture of what I am dealing with. The swelling and joint pain has caused me so much pain I just want answers already and to treat it finally. And it so embarrassing leaving my house even strangers ask me what is wrong with me why am I so red and swollen. Im literally looking into getting some body foundation lol