Comorbidities: Autoimmune: Joint Pain + Dry Eyes

Hey, for those who fall under the autoimmune umbrella, whether it is IBD, Lupus, RA (am I missing any other big ones?) which of your doctors were able to help put the puzzle together? I finally saw the ophthalmologist after putting off not going since the crappy colon on its deathbed took precedent, and he said my vision had improved so much since having the colon removed that I didn't even need glasses for reading anymore. But around the time my colon would've become completely paralyzed I started having dry eye issues (it was during the height of Covid so it took forever jumping from optometrist to different eye specialists). The ophthalmologist told me when you have dry eyes it is always autoimmune and that either my autoimmune disease isn't something they know what to call yet or I haven't had the right doctors/tests to connect all the pieces. They know it was something autoimmune that caused my body to attack the nerves in the colon, but right now my label (I think this is the latest label) is disorder of brain/gut function. In Chicago and Pittsburgh I was under the colitis label, but when I moved, Cleveland Clinic was never able to confirm it with their own biopsies so the shift went to motility disorder. I see my general GI doctor this week and a rheumatologist next week. Question(s) for GI doctor: could what is left of my GI system be causing the joint pain and dry eyes? Question(s) for rheumatologist: what is causing my joint pain? Do dry eyes fall under his specialty?

I'm currently on a steroid taper for a migraine and it coincidentally helps so much with the joint pain, but then I also don't sleep for the first couple days of the taper and steroids are not kind to the body over time.

Does anyone who has/had similar-ish issues have any pointers for questions I should be asking? Tests I should be asking for?

I had a follow-up with my neuromuscular doctor last week (they had tested me for a lot of nerve diseases trying to figure out what killed the nerves in my colon before my colectomy last year) and she is concerned I am not absorbing enough nutrients/vitamins/minerals for muscular nerve function- Are there any specific questions I should ask my GI doctor or PCP or other specialty concerning that? For those in the no colon boat, what are your go-to's for making sure your body is getting what it needs?

Thanks :)

MS and type 1 diabetes are also major autoimmune diseases but there's probably dozens of others too and there's a reason why the steroids help with your joint pain. It's not a coincidence, but yes, they are not friendly to your body over time.

My neurologist tested me for Sjogren's according to my symptoms (dry eye for the past couple of years but since after my colon was removed) but my numbers did not indicate that I have it. My ANA has been high on recent blood tests and my gynecological nurse practitioner said my next step should be a rheumatologist to find out why the dry eye, hair loss, joint pain. Now to find the time to do this.

Just googled dry eye and autoimmune. I have Raynaud's which is autoimmune and dry eye, which started about three years ago.

My eye specialist, Tina Turner, never mentioned a connection. I'll ask next visit. WebMD was the site.

When I was first diagnosed for Crohn's in 1970, I was prescribed 60 mg of prednisone daily. My doctor at the time told me that this would likely lead to problems with my joints as I aged. I was around 17 at the time. Eventually, I had my total large colon removed and fortunately Crohn's free in my small intestine. After that, I got off the prednisone. I now have joint issues as well as dry eye. Any medication you take can help one thing and cause problems somewhere else. You have to pick your poison.

Lori, all the appointments can be exhausting... I was looking at my calendar and I get a break from them after the 2nd week of October. My goal has been to get through this year without another surgery... Fingers crossed :)

Yeah, I also have bone-on-bone knee and ankles now because of high doses of prednisone, but it was the only meds that would calm down the UC flare-ups. The only fix for my right knee is a knee replacement, and my left knee is starting to hurt more than my right knee now, lol. Left ankle, right elbow, and wrist both have either arthritis or tendinitis or both. My dependence on prednisone was one of the reasons I got J-pouch surgery years ago.

I was diagnosed with UC in 1991. Out of the blue, I got severe diarrhea that wouldn't stop. After a week, I was depleted. Went to the ER and didn't leave until 6 weeks later with no colon, a temp ileo with plans to reconnect with j-pouch in 6 months. The darn j-pouch never functioned as planned, and it took until 2017 for a GI surgeon at another hospital to remove it. Those were the worst 25 years of my life.

Anyway, I was on prednisolone for a few years early on until one of my doctors took me off. I had diarrhea until the j-pouch was removed.

Here's where things get complicated for me. My diagnosis was changed to Crohn's in 2017 when the j-pouch was removed. The doctors prescribed an infusion Crohn's medicine, but I was allergic and refused to try another one because my Crohn's wasn't causing too many problems for me. I take an antacid if I get indigestion. The Crohn's caused a liver disease called primary sclerosing cholangitis aka PSC. So now I have a liver disease. Then in 2021, I was diagnosed with breast cancer. I had no discomfort, just a small bump that I thought was a pimple. Thankfully, I caught it early. I felt fine when I was fat, dumb, and happy, but the cancer drugs caused gout arthritis in my hands, and I now have osteoarthritis in my ankles, knees, and the joint where the spine connects to the hip bone.

The problem is that so many of my symptoms can be caused by the autoimmune disease or medications. Fatigue, arthritis, dry eyes, hair thinning, dry skin, etc., etc., etc. Oh, did I mention that I'm a senior citizen?

My solution is to take the least amount of drugs as I can. Yes, I do have some discomfort, but if it's not life-threatening, I deal with it. I take many natural vitamins and such. I.E. I take probiotics in the form of kombucha. I take proteolytic enzymes which have many health benefits. They're all natural. Two of the most powerful are papain and bromelain which come from pineapple and papaya respectively, also turmeric (google proteolytic enzymes). For sure it can't hurt anything to try it. When I occasionally get diarrhea, I eat light foods like noodles and eggs, and Garden of Life raw organic meal replacement at least twice a day. It has everything your body needs nutritionally (google it and check out the ingredients). I do take Tylenol when my arthritis gets more painful than I want to deal with, which isn't often. As I said, I can deal with some discomfort. The only prescription meds I take are eye drops for eye pressure and my cancer medicine letrozole with all of its side effects. I take a lot of the regular vitamins like vit C, D, calcium, a multiple, fish oil, etc.

I also work part-time and am moderately active.

I thank God for His blessings!

E& I