Why Do I Feel so Bad If I'm in Remission?

First of all, let me just say I’m not “officially” in remission. By that I mean that my rheumatologist has not touched me on both shoulders with her magical medical staff and pronounced me as being in remission. And while there is a huge amount of discussion in the RAcommunity (healthcare providers included), I tend to subscribe to the one adopted by the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) which is based on a low disease activity indicating a good prognosis. I have all the indications of low disease activity and have had for several months.

Looking at the labs

Since I was diagnosed more than 10 years ago, my labs have always been stone cold normal. Even when I’d go in with painful, swollen joints my labs were proclaiming that I didn’t have any inflammation (and probably never had any nor would I probably have any). But when I’ve had nuclear bone scans, my joints would light up like a Christmas tree. So when I suggested to my rheumatologist that we might need to tweak my current treatment plan and she suggested a bone scan, I agreed.

The results of the scan showed a lot of degenerative changes, but no active inflammation. That’s good news.

Even if how you’re feeling doesn’t match with what the lab and test results reveal, at some point you need to accept what the data is telling you and look at other options. The data tells me that my treatment plan is doing a good job of controlling my RA activity. And that is good news because (1) I didn’t really want to “tweak” my treatment plan and (2) now that I know what it’s “not” I can think about what it “is”.

Other options

So, if it’s not RA that’s causing my joint pain and generally feeling unwell, what could it be? There are a number of culprits that could be involved:

  • Permanent joint damage. A joint can be damaged permanently either by RA or regular wear-and-tear (osteoarthritis or OA). Damaged joints can cause ongoing pain and do not work as smoothly as they once did. I know that I have damaged joints and my bone scan showed more degeneration, so I’m sure that’s part of the problem. Even with my RA under control, damaged joints will continue to cause pain and other issues.
  • Other conditions. As well as RA, I have been diagnosed with Sjögren's Syndrome (SS). In addition to causing dryness in eyes, mouth, throat and other areas, SS is linked to joint and muscle pain. Further, I have indications of some thyroid issues and these can also cause symptoms similar to RA. https://www.mayoclinic.org/diseases-conditions/hypothyroidism/expert-answers/hypothyroidism/faq-20057789
  • Side effects from medications. On top of RA and SS I have some other conditions. These include high cholesterol for which I take a statin. Even though I’m on a low dose, one of the side effects of statins is muscle pain and this could account for some of my symptoms. https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statin-side-effects/art-20046013
  • RA affecting other tissues. We know that RA affects more than joints. It’s a systemic disease and can attack various soft tissues of our bodies as well as our bones and joints. While I discount this somewhat in my case, it’s possible that’s why the bone scan came up clear. My RA could be active, it’s just not active in my bones enough to show up on the scan.
  • A combination of all of the above.

    RA doesn’t exist in a vacuum and, as humans, our symptoms are often a combination of multiple factors. You can see that I have a lot of things going on that, individually, might go unnoticed. However, when combined could very well be the culprit(s) causing my discomfort.

As RA patients I think it’s natural for us to assume that RA is causing our joint pain and fatigue. And it’s natural for us to get aggravated with our rheumatologists when they claim that isn’t the case. We need to remember that there are other causes – even people without RA get RA-like symptoms. However, if these symptoms persist and RA is ruled out as the cause, then we need to have a chat with our doctor about what could be causing the problem.

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