It's a busy week, and I've had a little crash today (from doing too much!). We're getting ready for a long road trip to visit my family in my hometown for Easter. So, I don't have much time, but I wanted to let you know about some important updates here on my blog.
I updated my page, Summary of Effective Treatments for ME/CFS and Long-COVID (you can use this link or click on the ME/CFS Treatments tab across the top of the blog).
This is a sort of roadmap of treatments to try if you or someone you care for has ME/CFS or Long-COVID. It runs through a lot of treatments options, providing an overview of what's dysfunctional in our bodies and how to treat that dysfunction, with links to blog posts or articles that explain the treatment details. All of this information is based on scientific research and the practices of the top ME/CFS doctors treating patients, as well as our own experiences.
This is a great place to start if you have never tried any treatments or to look for additional things you can try to improve your condition. Use it as a sort of checklist. Some treatments require the help of a primary care doctor or GP, some you can try on your own (though it's always best to consult a doctor), and only a few require help from a specialist. Most are inexpensive and readily available.
We have learned some new things in the past few years--about treating GI problems and endocrine issues--that I would like to add to this summary when I have time, but it's still a fairly complete overview of the most effective treatments readily available today.
I'd love to hear your feedback!
Which of these treatments has helped you the most?
Are there treatments that helped you that aren't included here?
4 comments:
Sue, thank you for the extensive research that you've done. Thank you for sharing what you found and your results. Thank you for inspiring so many people to share their stories here.
When I first heard of listlessness, food sensitivities, migraines, fibromyalgia, chronic fatigue, adrenal insufficiency, hypothalamus-pituitary-adrenal axis disorder, autoimmune disease, tick disease, and then dysautonomia, I was overwhelmed by the lack of effective support that I got from my health care providers, and the haystacks of resources that rarely contained a speck of helpful information. Fast forward to last Fall, and the world has changed! Thanks for the superhighway of information that you built. I zipped through some of your posts and look forward to taking a more leisurely cruise through.
Cancer preceded my current episode. I sailed through the diagnosis and surgery and then got my first infusion Nov. 1, last Fall. That flattened me. I pushed myself through each day until I gave up at the end of December. In early January my PCP suggested that we consider the possibility that I might have CFS. That was such music! I began looking into the latest findings, and was delighted to discover the Beyond ME CFS Physicians Guide.
Fast forward to yesterday when I searched for heart rate monitors for dysautonomia and I found you. 💐🎉
Thank you
Hi, Grace -
Nice to "meet" you but sorry to hear you belong here! You are the second person I know of whose ME/CFS was triggered by cancer treatment.
Thank you for the kind words about my blog and articles - I'm so very glad to hear you found it helpful! It's been a lot of work, but the connections I've made and the people I've helped make it all worth it.
It IS a lot of complexity to understand. Just tackle one area at a time - nothing is a miracle but everything helps a bit. I suggest beginning by correcting sleep dysfunction and treating OI/dysautonomia. Those 2 things will yield the most improvement in how you feel and your quality of life, allowing you to do more without crashing. Third would be treating immune dysfunction - since that is at the heart of the disease, treating it will help everything (including sleep and OI!) - so you could also begin there :) Your PCP should be able to help with a LOT of this - specialists are only needed for a few treatments. Sounds like your PCP is open-minded and willing to learn and help you, so start with him/her.
And please let me know if you have any questions! Good luck on your healing journey -
Sue
Thank you, Sue for your response. I appreciate your suggestion to just tackle one area at a time. This week, I'm tackling heart rate monitoring. A few months ago, my physical therapist was helpful when he explained that I need to keep my pulse below 130 to facilitate recovery from my severe fatigue. The idea of keeping it lower than that is intriguing! A couple weeks ago, he and I started talking about activity trackers, and I almost got a Fitbit like his...until I read that the alerts only work when the pulse has been at resting level for 10 minutes. They are designed for afibrillation detection, not dysautonomia. For the same price, I got a Garmin Forerunner 45. I can set it to alarm me when my pulse goes outside the range that I specify, just like my old Polar chest strap/wrist watch that broke a few days ago. I had been wearing it for 2 days and was FASCINATED by the results. My Garmin arrives tomorrow. I'm so excited to set it up so I can learn to be more mindful of my heart rate!
You suggested that I work on my sleep. The Garmin watch has a sleep monitoring program, which I hope to learn from. I did a sleep study years ago, but my autoPAP machine woke me up most nights blasting puffs of air at me, and continuing to do so as I tried to go back to sleep. My doctor's office adjusted the settings, but never adequately. I considered making an appointment for another sleep study just before the pandemic...
I'm working with a dysautonomia clinic. I asked for Midodrine a year and a half ago, and they finally let me try it a couple months ago. It's been great supporting my blood pressure! I had been using Butcher's Broom tincture, which eliminated my chronic severe migraines, and relieved my need for using an abdominal binder to keep my blood pressure up. During my recent crash, I needed the extra pharmaceutical help.
Regarding my immune system, I was diagnosed with Hashimoto's thyroiditis several years ago, but both endocrinologists whom I consulted refused to treat me. I found that my mostly-carnivore diet brought my blood levels back to normal.
By the way, I noticed that you're from Rochester, NY. I'm nearby, north of Syracuse. Two of my kids are living in Rochester. Hooray for the Finger Lakes!
Thanks for being here. You inspire me!!!
Hey, another western NYer! Small world! Where, north of Syracuse? I went to college at Clarkson in Potsdam :)
Sounds like you're on the right track on lots of treatment paths - good for you! I hope things improve for you.
Sue
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