So I May ... MAY ... not have PsA After All

You ever have one of those the-heavens-open-up-sun-shines-down moments of clarity? I might have had one yesterday. And it MIGHT change everything I think about myself. I won't get confirmation about that until tomorrow so I could be getting ahead of my skis here. But it makes so much sense that I'll be surprised if I'm not right.

I've been struggling with puzzling health issues for about 4 1/2 years now. Longer than that, even, when I think back on it. It started with pain in my arms going back probably 8-10 years ago. And sinus issues. And coughing after eating. Three things I NEVER put together as all being part of the same problem. I just thought I was getting older. And I wrote the pain in my arms off as tendonitis from weight lifting.

Then four and a half years ago I came down with a really bad bout of bronchitis. It lasted for weeks and was really hard to shake. I coughed longer and harder than I ever had in my life. When the illness finally lifted I was left with a puzzling pain in my chest, shoulders and neck. I googled and googled for months to try and figure out the cause of this pain that would not go away, finally landing on psoriatic arthritis. I'd had a small patch of psoriasis behind my right ear and a dime-sized patch on my right arm for decades, so it made sense. A rheumatologist confirmed the diagnoses but not really based on anything solid. That's the trouble with a PsA diagnosis. There's no one definitive test for it. He put me on Indomethicin and sent me on my way. But I always had this nagging feeling ... did I REALLY have PsA?

I visited a rheumy at the Cleveland Clinic who looked at my blood work ... all inflammation markers in the standard range ... who said, "I'm not sure you ever have psoriatic arthritis." But she wanted me to get off the indomethicin right away as I have been on it for a year and a half which is far too long to be on a medication like that. She also noted that I had low iron in my blood, which she thought was odd, but she wrote that off to the effects of the indomethicin. When I went off of it the pain flared up again. I tried to make a follow up appointment with her but I wasn't going to be able to get in for FIVE MONTHS. I I made an appointment with a different rheumatologist at the Cleveland Clinic. The blood tests she ran showed the same thing. Inflammation markers all in the standard range. Because the pain was mostly in my chest she did an MRI of my chest. It showed no inflammation, which again was puzzling. But she diagnosed me with PsA anyway based on an MRI of my wrist and a couple of pitted fingernails. The inflammation in my wrist, however, was likely due to a torn meniscus.

She prescribed Humira and it worked the VERY NEXT DAY. Again, I thought this was kind of odd. For most people it takes weeks and months but I experienced relief instantly. So the inflammation was coming from something and the Humira worked to tamp it down immediately.

Flash forward to this year. I'd been getting increasingly sick to my stomach. I went out to a high end steak house for our anniversary and decided to try wagyu beef for the first time. It's a VERY fatty cut of meat. I got sick a few hours later. We thought it might be food poisoning. We even called the restaurant but everyone else who had the same cut reported no problems. Over the last two weeks I'd been REALLY sick to my stomach. And it all started ... and again this is a clue ... after a weight lifting session.

I had had my suspicions for months that this COULD be a gastrointestinal issue. I'd had a nervous stomach for about a year even though I wasn't nervous. I felt constantly anxious for reasons I could not explain. THREE TIMES I asked my PCP to refer me to a gastroenterologist and she blew me off every time. (For the record she is no longer my PCP.) I finally made an appointment with one myself. After talking about my symptoms he decided it a good idea to schedule an upper endoscopy, which I have tomorrow.

I was nervous (and still am a little bit) that I might have stomach cancer. But stomach cancer is really rare in the U.S. and rarer still in people under the age of 55. It's like a one in a million thing. It's a frightening possibility but highly unlikely. So I spent most of yesterday googling and googling and trying to make sense of it all. And THAT is when I ran across this - HIATAL HERNIA.

I'd never even heard of that before but, apparently, by the time people are 60 years old, 60% of those people will have one. It's when a part of your stomach pushes up into your esophagus. A lot of people have them and never realize it. Sometimes people have them since childhood. They're caused by ... wait for it ... lifting heavy objects, coughing and straining when going poo. ALL things I do. I've been a weight lifter since I was 19.

The other thing I always found odd ... that I could never quite make sense of ... is that my problems were ALWAYS worse when sitting. The pain, the pressure in my head, the dizziness, the tinnitus. Always worse when I was sitting. Well, if you have a sliding hiatial hernia, sitting pushed it up further into your esophagus and pushes fluid into your sinuses and ears. Hence the sinus pressure and dizziness when sitting and eating.

Now I don't KNOW that what I have is a hiatal hernia. But the more I read about it the more things clicked into place. Suddenly everything I've been experiencing over the last four and half years made sense.

I'll find out for sure tomorrow and I'll follow up this post to let everyone know. But if I'm right ... and I hope I am ... it just goes to show you that you HAVE to be your own advocate. The knowledge of PCPs is too limited and specialists always view your issues through the lens of their own specialty.

Or I'm wrong about all of this. We'll see.