I've been absent/silent lately here! If you follow me on social media, you know I'm still struggling to recover from COVID, which just made all my ME/CFS symptoms much worse (as you'd expect). Last week was particularly bad, and I spent several days in bed.
But, in between, on the days when I felt a little better, I managed to record, edit, and upload a new video: Orthostatic Intolerance in ME/CFS, long COVID, fibro, Lyme & EDS. You can click the link to watch on YouTube or watch below:
This video is based on my most popular blog post in over 16 years of writing this blog! Year after year, this post that I wrote in 2010 shows up as the one with the most visits.
Orthostatic Intolerance (OI) is a hot topic on my blog for good reason. It is an integral part of ME/CFS (one study showed that over 97% of us have some form of it), and it is treatable! It can take a bit of trial and error (and patience), but treating OI often brings dramatic results, decreasing all symptoms and improving quality of life. It's been life-changing for my sons and I over the years--got my two sons back to school full-time when they were young and allows me to be active without crashing (usually, without COVID messing things up!).
I also wrote a 2-part article on OI for the ProHealth website. All of my articles (and many others) were taken down when they revamped their website last year, but making the video gave me the motivation to scan my articles and get them back online last week. This two-part series covers:
Part 1: Diagnosing Orthostatic Intolerance
Part 2: Treating Orthostatic Intolerance
These articles are especially good for sharing with your doctor(s), as they are brief, cover the most important points, and include scientific references at the end, in case your doctor wants to look up more information.
Check out the video or read the blog post or articles, if you prefer. If you are sick of being sick and struggling through each day, treating OI is one of the simplest and most effective things you can do to improve your life!
And please let me know if you have any questions, in the comments here or in the comments below the video or on Twitter or my Facebook page.
2 comments:
Hi Sue, I haven't had a chance to watch the videos yet so I apologise if my question is answered in them, I have had ME for 30 years, I am now 52, and OI has always been a symptom and since getting a HRM to help me pace 8 years ago I believe it is in fact POTS. As yet I have been too ill to pursue a diagnosis for that but I have an appointment for May. I am not sure what they can do as I have a v low RHR of only 50 so I don't know if I can use Betablockers. Recently I saw Workwell Foundations latest guideline of using 15bpm above your RHR as your AT, so this explains why I continue to deteriorate as I had been using 100bpm as my AT. Anyway my question is because of the increase in HR caused by POTS even when just sat eating, can you not use a HRM for pacing for ME if you have POTS? Thank you
Hi -
Thanks for taking the time to leave a comment - sorry to hear you are struggling with all this, too! I'm 56 and sick now for 20 years. I'll answer your last question first, then circle back around to a few other important points.
Yes, a HRM is even more useful if you have POTS - most of us do :) That high HR, over your AT, that you are seeing even during routine activities of daily living is why you need to treat OI! Then, you can stop that vicious cycle of constantly being crashed because every thing you do puts you over your AT.
You can see the high HR easily with a HRM, but it is almost certain that you also have NMH, in addition to POTS (97% of those with ME/CFS have NMH!) - that's where your BP goes down when you're upright. So, the combined effects of BP dropping and HR going sky-high makes you even sicker. But it's all treatable :)
A low-dose beta blocker may or may not be an option for you - that's something to discuss with a doctor. Since we use them at very low doses for OI (as opposed to their normal use for high BP), they could still be an option. But even if beta blockers aren't an option, there are LOTS of other treatments to try - both the video and the blog posts/articles review some of those, including some things you can do on your own (though those kinds of lifestyle changes generally only help a little bit - you get the biggest improvements from medical treatments).
The good news is that most treatments for OI are very inexpensive and readily available; most are older meds that any doctor will be familiar with.
Step 1 - perhaps at your May appt? - will be to diagnose, though you can already tell from your home monitoring that you have POTS and you almost certainly have NMH, too, given the statistics, so your doctor may be willing to jump right to trying treatments. Share your home monitoring data and the ProHealth articles I linked to in this post - they are just right for sharing with doctors (brief but with scientific references at the end).
Good luck! Take a look at the articles and let me know if you have any other questions.
Oh, and here's more info on using a HRM:
http://livewithcfs.blogspot.com/2011/02/heart-rate-and-post-exertional-crashes.html
And more in this article on calculating AT:
http://suzanjackson.homestead.com/PH_-_Using_a_HR_Monitor.pdf
Best -
Sue
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