Balancing multiple diagnoses: constant calculations

This post was created for the 5th annual RDBlog week, a week of rheumatic disease blogging founded by Rick Phillips where many different writers answer the questions chosen by readers. Make sure to check out the blogs of the other awesome people participating!

I joined RDBlog week after meeting founder Rick Phillips at the Arthritis Foundation’s Live Yes! Conference of Champions (about which I still need to write a post). The prompts are all really important chronic illness issues that need to be talked about, so I’m excited to see others’ responses to prompts even if I don’t have anything to write about them yet. While I don’t feel like I can answer all the prompts, the question about dealing with multiple diagnoses is something I work through on a daily basis.

Managing any chronic illness is complicated, but managing multiple adds a whole new level of complexity. I don’t usually talk about conditions other than arthritis, because the arthritis usually impacts me the most, but multiple diagnoses is something many people with rheumatic conditions face. And it’s not easy. The medicine I take for one condition makes the other condition worse which means I need to take medicine for that which causes another side effect which—

That scenario can keep going, but I think we’ll stop it there. I have spondyloarthritis, interstitial cystitis, a currently-undiagnosed GI problem, and migraine (oft-forgotten by me, but it can be a real problem when it decides to make itself known). One primarily affects my joints, one my bladder, one my gut, and one my brain, but they all have the potential to make me feel miserable and exhausted.

The various aspects of each condition interact in ways that combine, amplify, complicate, and confuse symptoms. And don’t even get me started on all the separate appointments needed to make any progress on treating each condition.

It can be frustrating that specialists often only focus on their system of specialty (urologists on the bladder, for example). My back pain, bladder pain, and gut pain often arrive in groups, so how do I really know what the problem is? Is one irritating the other conditions, or is the cause for all three linked? It can also be hard to separate what is caused by which condition in order to get effective treatment for anything. Not to mention, when doctors are only focused on treating one condition, it can have harmful effects on the others.

Treating my arthritis, bladder pain, or migraine with NSAIDs can have problematic effects on my GI tract, so sometimes I have to decide if the GI pain is better than the pain I would treat. Treating a migraine with caffeine is a very bad plan for my bladder, as are most of those spices that are supposedly anti-inflammatory. One treatment for my interstitial cystitis left me with debilitating migraines with aura multiple times per week.

Sometimes, and these are the best times, the medicines help with more than intended. When I was on Humira, both my arthritis and my gut problems were (largely) solved. Some of the medicines I’ve taken for my bladder also make my arthritis better. And I have to believe that less irritation in my body is good for all systems, because otherwise I can’t explain why a painkiller that only works in the bladder made me stop feeling nauseous.

One thing I can do that seems to make me feel better overall, regardless of the condition, is exercise. (Okay, maybe not exercise during a migraine, but that’s a given. I’ve stubbornly tried it before. Not recommended.) Exercising is great for my arthritis, great for my health overall, and most importantly, great for my mood. The frustration of dealing with multiple conditions is much easier to handle when approached from the right mental place. That’s not to say I’m an expert at following my own advice, but I do try my best.

Unfortunately, in many cases today, patients are responsible for managing the interacting parts of their health conditions. It takes a lot of responsibility and initiative on the part of the patient to get everything straight, something I’ve actually made my focus recently. It’s a lot of time spent at various specialists, and sometimes referrals to more specialists before you can get an answer. I will say, though, that it’s been worth it for me. I had thought that the weird interactions between my bladder, uterus, and back were a hopeless tangle of circular logic, but I’ve finally gotten treatment and answers that make managing it not impossible. The right doctors can make all the difference.

Have hope! The healthcare system sometimes works.

-Bri

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