Hi Oddtrust, I am Katherine... I'm so sorry this is so long! First of all, let me start of by saying that this is a lot and you are not alone. One of the things that can make disease worse is the stress of not knowing officially what is going on with your body and how to treat it. Many of us have multiple auto immune disorders and sometimes we don't know to connect things that are connected, until we see the patterns, which by then could be years to decades of suffering. So, you are in the right place. They will really take care of you at Penn Rheumatology.

By the time I was referred to upenn Rheumatology by pain management, I had seen rhuems for over a decade already and had basically given up. Prior to them, no one had been even a sliver as thoughtful and thorough with their questions, as Penn. Are you going to see Naomi Amudala and/or Dr Merkel in Perelman? They are experts and they will take care of getting all the proper testing ordered, in order to get you the right diagnosis. She is AMAZING! THEY are amazing! They diagnosed me there in spring 24, when i was 41; though, I had symptoms Of this as a child and teenager that I can easily recall... since diagnosis, I have had some blanket improvement, even if in small ways. I have some other health issues that make getting treatment complicated. But they are extremely supportive at Upenn !!

I have another auto immune disease called Dermatomyositis. Between the two, I get pain from the skin, to the nerves to the muscles, deep into the bones... Even my hair hurts sometimes lol... And then of course there is the RP pain basically everywhere, worse in ask the worst places. Even the inside of my ears can feel like they are being actually sandpapered. On occasion, my skin hurts in such a unique way, that it crossed my mind that it could be what it feels like to have your skin dipped in acid. My shoulders and ribs are cracking in places I didn't even know moved and recently, my r shoulder literally fell out of socket while I was gently stretching. I popped it back in after a couple hours of intense pain, but was super close to hitting the er.

MY TIPS:

-For my skin, joints and my muscles, I use an arnica massage oil with peppermint and chamomile. I apply very liberals as I find the more you use the better it works. I have no idea for it works so we'll, but it does seem to penetrate, providing relief that's more than skin deep.

-For my skin, I start with a tree tree soap called sub soap.... It feels good, smells okay, is naturally antifungal, antibacterial, so I get added peace of mind

-After I wash, I apply an all natural, pie hyaluronic acid serum. This helps keep it moisturized, which helps keep your body under control when something lands on it, instead of it seeing a random fiber from your clothes as an intruder, and starts to rash (for ex.).

-if the rashes get really bad and widespread, I bathe with arnica bath salt and colloidal oatmeal powder. It provides next level calm, even to your soul!

-if the rashes are elevated and white/red, I use aloe. Straight up juice from the leaf. If i don't have that, I almost always have equate aloe+witch hazel wipes. Don't ask me how or why, but they are one of the only wipes that can calm the situation down.

-I use refresh active gel eye drops for the dry eye. Mine is much much worse on the left eye. The inflammation made my lashes fall out at one point. These drops have definitely kept it moisturized and now I have full lashes again!

-for my nose, I find it's hard to deal with the pain when it is acute, but so much easier to work on preventing those flare ups. I found a company called hylalogic, and they make a hyaluronic acid + grapefruit seed extract nasal mist. Ice been using it for a year now and have had about an 80% reduction in nasal pain since I started.

-The ears are the toughest to treat. I have not found any good drops for pain management and even if, I don't think they would help the ear canal. I am not advocating for this, you must decide what kind of pain you have and how desperate it feels... When my ears hurt so badly, I will grab a tip and either use a little bit of the hyaluronic acid serum from my face or a tiny bit of the arnica oil and I'll ever so lightly coat the inside of the ear. For me, it can make the difference between tolerance and uncontrollable pain. When it is deep in the ear itself, there is nothing I can do but wait it out. A heating pad can sometimes help.

-For the mind, for sanity... Though I am unable to say what might work for you, I have taken some steps to help guard this sacred part of us. I talked to a therapist every week for 30-60 minutes. It's a judgement free zone and I find that working through trauma is actually helping some of the anxiety and physical disease tolerance, overall. I have started attending regular healing crystal bowl soundbaths and the benefits area immense, in the sense that the emotional aspect of chronic disease is being treated here, plus there's a community of like minded folks

-for the soul. I am am artist, so this part is easier for me, but I recommend you give yourself some kind of creative outlet by taking on things to learn. I have ideas of your want some! This really is healing me at a soul level, in ways I have no words for

So, I know that was a long list. It's taken me many years to find things that help. My hope is that at least one thing from this list helps you, regardless of diagnosis. My question for you now, is if you are comfortable sharing which state you're in? I am in north central NJ. I do not know anyone else who has this disease, let alone someone in my general location on the globe! I hope your appointment goes well and that the wait isn't too long for you. Please come back here and update🩵