I’ve had a major uptick in my fatigue level so I haven’t been able to manage writing the couple dozen of posts that I wish I had over the last few weeks, but my health care team is working on a new batch of tests, a med change, and probably an additional diagnosis that may eventually lead to improvement, so stay tuned…
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Joanne Corey 
I wish the best for you and that your health care team can find ways to mitigate the fatigue. Most people don’t really realize how debilitating fatigue can be. It’s so much more than just being tired. Good luck and I hope for a quick resolution.
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Thanks so much for your well wishes. My chronic fatigue is part of my hypermobile Ehlers-Danlos syndrome, an inherited disorder that I was just diagnosed with earlier this year at age 65. If you’d like to read a bit more about it, you can check out this post: https://joannecorey.com/2026/01/17/a-diagnosis-finally/
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I’m glad you were finally able to get a diagnosis. I’m sorry it’s EDS. I have a couple of friends who have also been diagnosed with EDS. I will go read your post about your journey to getting a diagnosis. Getting a diagnosis can be a mixed bag. On the one hand, the medical community can no longer gaslight you regarding your symptoms. On the other hand, you have a handle on some ways to treat the symptoms.
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I’m fortunate that specialized nurse-practitioner who diagnosed me also has connections to some of the EDS-aware specialists and tests I need to get proper treatment. It was amazing how she saw things on my imaging that a half dozen doctors before her had missed.
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I have great respect for NPs. The ones I’ve had always listened to me, followed up to make sure whatever treatments I was given were working, and paid attention when I said something was wrong or not working.
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It’s wonderful that you have had such good experiences with NPs. Listening and caring about patients have too often gotten lost in the shuffle in the medical community with the pressure to only see patients briefly and cram as many into an hour as possible.
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May your body regain its energy.
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Thank you, Frank.
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I’m sorry about the increased fatigue. I hope your team can find ways to phase in various aspects of care so you can get relief.
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Thanks so much, Devon. We did decide to take me off one med that has the side effect of lowering my blood pressure, which wasn’t high to begin with. Hoping it will help.
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I’m sorry your fatigue has increased, but glad you’ve got a team working on it. It sounds like they are working diligently. Wishing you good energy!
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Thanks, JoAnna! SInce Wednesday, my team has made a medication change which has raised my blood pressure out of the cellar, which is helping. Chronic fatigue is still a feature but I can manage to be upright more than before.
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Good news!
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It is such a delicate dance, balancing the potential of medication to help while assessing potential side effects. I’m glad they alleviated the low blood pressure and hope they can improve the fatigue.
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Thanks, Ellen. I’m back to my usual level of chronic fatigue. Here’s hoping we can improve on that in the coming months.
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