I believe that pain and fatigue aren’t two separate symptoms, but are two sides of a single symptom. Pain drains the body’s energy, leading to fatigue, and pre-existing fatigue from other causes can make the body less capable of coping with pain, so it feels worse.
So you can see why I’d be interested in an article titled “Health-related quality of life and fatigue in adult rare bone disease patients.” What really matters for understanding and treating both pain and fatigue isn’t the exact pathway, which differs from condition to condition, but the effect on the patient’s quality of life.
I only have access to the abstract and a few snippets from the article, but what I could read confirmed what I’ve experienced and what I’ve heard from other rare bone disorder patients. If you’re having trouble getting your clinician to take your fatigue seriously, a link to this article might be a good one to share with them, and they should be able to access the full article.
One of the main findings is that “Rare bone disease patients exhibit higher fatigue levels than [patients chosen to represent the general population without a rare bone disease.” Not surprising to us, but good to have documented with data.
I thought it was particularly interesting that when compared to osteoporosis patients, who have a more common issue with bone health, the rare bone disorder patients had higher (worse) fatigue scores. That would seem to be consistent with my theory that pain is a component of our fatigue, since osteoporosis, while affecting bone structure, isn’t usually associated with pain (at least not directly, although it can lead to painful effects, like broken bones).
The comparison with osteoporosis also demonstrates the value of looking at several rare bone disorders together, rather than just one at a time. This study looked at XLH, hypophosphatasia (HPP), and osteogenesis imperfecta (OI). All three have very different biochemical causes for the fatigue, but the research showed that the effects on the patients across the three disorders were very similar. (That also matches what I’ve observed when meeting OI patients in person or through their online community.)
Given how little is understood about fatigue (and pain), looking at similar patient experiences across disorders could provide insights that studying one disorder alone would not. Imagine how differently you might think about fatigue if the osteoporosis patients experienced the exact same level of fatigue as the rare bone disorders, even though the OI patients weren’t experiencing pain. In that case, you’d probably think that fatigue was directly related to bone structure anomalies, rather than some more complicated cause. Or what if the data showed (just choosing at random here) that XLH patients and OI patients experienced significantly more fatigue than HPP patients did, and the HPP patients had the same level of fatigue as osteoporosis patients? That might suggest there was something different about HPP and osteoporosis, and further research could be done to see what that difference was, and whether the better understanding could be used to help the other rare bone disorder patients.
Finally, while I’m talking about the importance of looking at more than just one rare bone disorder at a time, if you’re on LinkedIn, I highly recommend following the Osteogenesis Imperfecta Federation Europe. They frequently highlight research, like in the linked posting, that is relevant to a variety of bone disorders, not just OI. They’re doing great work for their community, and some of it also applicable to XLH and the other chronic hypophosphatemias.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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