TL;DR: My primary doctor’s office doesn’t know what to do with me. Basically none of my doctors do.
Today I went to see my primary for a followup. In October I was told that I now have to come in every time I need a refill for my Tramadol (opioid painkiller that I’ve been taking for my joint pain for about five years). I also got a bit of a lecture on opioid addiction, which I know they have to do but, yeah. This after I had to jump through hoops to get the refill in the first place.
Anyway, I’d scheduled today’s visit when I got my refill in October, but I also wanted to come in to show them my swollen thumbs. Every time I try to take a picture of them, it doesn’t show up on my crappy iPhone 4 camera, but both of them are swollen at the joint. Late last year, my rheumatologist Dr. Memet said I have enthesitis-related arthritis, which means my tendons are inflamed where they connect to my joints. This explains why my inflammation markers in my labs are always negative. After that, she diagnosed me with Reactive Arthritis, but when she left the practice, my new rheumatologist canned my diagnosis—until my anti-dsDNA came back positive. Right now we’re looking at possible Lupus.
I see Dr. S (my rheumatologist) on December 1st, but in the meantime really wanted my flareup and swollen thumbs on record. (My PCP and rheum are both in the same medical group, so they use the same patient portal.) My appointment was with the APRN at my primary doctor’s office. I went in with a two-page list of concerns, plus pictures of where I have joint pain in my chest. (Fun fact: There are joints everywhere. Everywhere.)
On my way to my primary doctor. It's hard to tell in the pic, but my thumb joint is swollen. Possibly the tendon? I was told I have enthesitis-related arthritis, so. I also took pics of all the spots my ribs/sternum hurt, with Sharpie Xs. I'm going in armed with a two-page list of concerns, so wish me luck. Blog post later with recap. #flareup #spoonie #chroniclife #lupus #autoimmune #arthritis #author #writersofinstagram #chronicpain #chronicillness
To be fair, the APRN was nice and she listened. But… she admitted she doesn’t want to mess with me because “there’s so much going on.”
I showed her my thumbs and we discussed my other trouble joints. I also asked her about Tramadol. A friend with a slipped disc is in pain management and her specialist explained that Tramadol doesn’t work for pain unless you stay on top of it. Meaning, if you take a dose at the end of the day when the pain is already high, like I do, it ain’t gonna touch it. I’ve long suspected this, so it was nice to actually “hear” a doctor confirm it. I asked my APRN if there was any way I could split up my 100mg dose throughout the day. She instead urged me to go to pain management.
I have… doubts about pain management. For one, I’ve heard a lot of horror stories. And… I don’t want anything stronger than Tramadol pushed on me. I’ve tried Percocet and other things and, yeah, they worked really well for the pain, but they knocked me out or made me super loopy. Either way, I couldn’t function. I like functioning. I have writing to do.
Another concern I have is that very few pain management clinics in the state take my (state) insurance. My friend has the same insurance and had a lot of trouble finding a place. She ended up with a clinic an hour away. I can’t swing that because Mike works full-time and we only have the one car. Family members have offered me rides to appointments but honestly I feel bad about asking them to take me that far, especially when pain management wants patients to come in often.
Maybe this sounds like excuses.
Anyway, I expressed all my concerns to my APRN and she said there was one in Southbury. Alas, they don’t take my insurance—but she did find one closer to me than an hour away. Just not as close as Southbury. 😂
Honestly, at this point, I didn’t feel like I had much of a choice. My rheumatologist has suggested pain management before (after grilling me about my Tramadol prescription), and last time I saw the APRN she wasn’t too crazy about me and Tramadol, either. It seems like more and more doctors just don’t want to mess with painkillers. Which is a shame, because when used correctly, they’re extremely beneficial to chronic pain patients. Plus Tramadol is honestly the baby aspirin of the painkiller family. No one is going to pursue it to get high. But I digress.
So, I’m going to pain management. Hold me.
To be fair, my friend had the same fears at first, but she really likes her clinic now. They’ve got her Tramadol dose to a point where it’s helping, and she’ll be having surgery for her neck soon. She’s very happy with the care she’s getting, so hopefully this will be a blessing in disguise.
I also talked to my APRN about my GI symptoms. They’re… pesky. And embarrassing, so I’ve never mentioned them here before. Nor have I discussed them in-depth with my doctors. But I bit the bullet and flat out told her. She said it sounds like IBS, which I’ve been wondering. The kicker is, when I asked what we can do about it, she said she doesn’t want to mess with my body because “there’s so much going on.” And laughed.
I was not amused.
Honestly, I just feel like I’m always being passed on. No one wants to help me. They’re either too busy or don’t have the expertise, so they hand me off. And nothing ever gets taken care of.
This has been going on for almost 10 years.
I had to fight for a cortisone injection in my toe. I eventually got it, but I had to jump through hoops. Cortisone injections are standard procedure for patients with arthritis. My grandmother gets them all the time. I’m pretty sure my dad got a couple in his problem hand (he has tendon issues). But when I walk in, it’s always “You’re too young for all these problems.” Like it’s somehow my fault, or like I’m making it up.
I eventually got the shot, and you know what? It worked like a charm. It wore off, and when I mentioned so to my APRN last time and said I need another one, she said I’m too young and laughed. Like this is all one big cute joke.
Why, today, I couldn’t start Prednisone to fight the inflammation, or at least get cortisone shots in my thumbs, is beyond me. I was flat out told they would only treat my IBS when it’s flaring—even though I said I have symptoms all the time—because they don’t know what to do with me.
They never do.