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I have moderate ME, 3-4 on the PR scale. I also have POTS, various skin issues, allergies, and GI issues.
Yesterday I had an appointment at a pain management clinic. I had booked the appointment as I was interested in trying red light therapy for my skin primarily (I had a very severe rash flare on my face), but also hoping it would help with my fatigue as well. The clinician did the intake, and offered to add on PEMF therapy. I had never heard of this before and the way she explained it did not instill any confidence in me. However, she offered me a considerable discount to try it, mentioning that I am a young person, a student, struggling to work, etc. So I thought okay, what the hell. Let’s try it.
She got me to lay on this mat, explaining that it would send electromagnetic pulses into my body (?) that break up cell clumps (?) and reduce inflammation (??). By this point I was sure I was being scammed, but whatever I was willing to be scammed out of $15 here. Next, she put a nasal cannula in and told me she was administering oxyhydrogen, which apparently “hydrates the cells better than water” and “has powerful antioxidant effects”. Then she had me wear this mask, put in earbuds, and close my eyes. The mask flashed lights on my closed eyes and the earbuds played binaural beats.
I laid there for 20 or 30 minutes, just focusing on my breathing. Usually when I lay down and focus on my breathing for this long, I get very tired and cold and I feel sluggish getting out of it. But in this case, I felt a pleasant warm sensation inside my body. I felt stimulated but relaxed. It felt like being in a forest on a summer day, being very at peace, taking in the nature, feeling the sun warm my body through the trees.
Next, I did the red light therapy. I laid naked in this booth for 20 minutes. This time my nasal cannula was just giving me oxygen. I felt a bit uneasy but nothing major.
After my appointment, I had to go to physio. In physio we usually spend a few minutes on exercises and mainly focus on body work, such as lymphatic drainage. This time, we did 20 minutes or so of exercises. We stopped because I was concerned about crashing, not because I was feeling unwell in any way. After this, I was able to go grocery shopping, stop by the pharmacy, head home, and prepare myself a nutritious meal. I felt a moderate sense of wellbeing throughout the evening.
I looked into the first treatment and found that PEMF is a validated therapy for a few things like injuries, but isn’t well researched for fatigue. Oxyhydrogen is apparently quackery, with only anecdotal evidence.
Today, I woke up feeling better than usual although my sleep was not great. Normally I wake up feeling like I was hit by a bus, and it takes me about 4 hours to really get going. Today I woke up with that feeling at about 50% intensity and it only took me an hour before I was in the shower washing my hair. I rested after that. I’ve been seriously freaked out by this sense of wellbeing and energy, worried that I will cause a crash but feeling so motivated. Later on, I studied for an hour and 15. Lately I’ve had brain fog and have had to study in 5-10 minute increments, but today my brain fog didn’t start kicking in until the 80 minute mark.
Normally doing what I did yesterday would be feasible, but difficult, unpleasant, and would necessarily involve a crash. Maybe I will still crash, but my crashes are rarely this delayed and usually I am able to predict it. I don’t know what’s going on, but I am going to try this for 4-6 weeks and see what it does, because if it consistently produces this effect, that would be an incredible improvement to my quality of life and functioning.
Before I end this post, I need to note several confounds that might influence this.
Yesterday I had an appointment at a pain management clinic. I had booked the appointment as I was interested in trying red light therapy for my skin primarily (I had a very severe rash flare on my face), but also hoping it would help with my fatigue as well. The clinician did the intake, and offered to add on PEMF therapy. I had never heard of this before and the way she explained it did not instill any confidence in me. However, she offered me a considerable discount to try it, mentioning that I am a young person, a student, struggling to work, etc. So I thought okay, what the hell. Let’s try it.
She got me to lay on this mat, explaining that it would send electromagnetic pulses into my body (?) that break up cell clumps (?) and reduce inflammation (??). By this point I was sure I was being scammed, but whatever I was willing to be scammed out of $15 here. Next, she put a nasal cannula in and told me she was administering oxyhydrogen, which apparently “hydrates the cells better than water” and “has powerful antioxidant effects”. Then she had me wear this mask, put in earbuds, and close my eyes. The mask flashed lights on my closed eyes and the earbuds played binaural beats.
I laid there for 20 or 30 minutes, just focusing on my breathing. Usually when I lay down and focus on my breathing for this long, I get very tired and cold and I feel sluggish getting out of it. But in this case, I felt a pleasant warm sensation inside my body. I felt stimulated but relaxed. It felt like being in a forest on a summer day, being very at peace, taking in the nature, feeling the sun warm my body through the trees.
Next, I did the red light therapy. I laid naked in this booth for 20 minutes. This time my nasal cannula was just giving me oxygen. I felt a bit uneasy but nothing major.
After my appointment, I had to go to physio. In physio we usually spend a few minutes on exercises and mainly focus on body work, such as lymphatic drainage. This time, we did 20 minutes or so of exercises. We stopped because I was concerned about crashing, not because I was feeling unwell in any way. After this, I was able to go grocery shopping, stop by the pharmacy, head home, and prepare myself a nutritious meal. I felt a moderate sense of wellbeing throughout the evening.
I looked into the first treatment and found that PEMF is a validated therapy for a few things like injuries, but isn’t well researched for fatigue. Oxyhydrogen is apparently quackery, with only anecdotal evidence.
Today, I woke up feeling better than usual although my sleep was not great. Normally I wake up feeling like I was hit by a bus, and it takes me about 4 hours to really get going. Today I woke up with that feeling at about 50% intensity and it only took me an hour before I was in the shower washing my hair. I rested after that. I’ve been seriously freaked out by this sense of wellbeing and energy, worried that I will cause a crash but feeling so motivated. Later on, I studied for an hour and 15. Lately I’ve had brain fog and have had to study in 5-10 minute increments, but today my brain fog didn’t start kicking in until the 80 minute mark.
Normally doing what I did yesterday would be feasible, but difficult, unpleasant, and would necessarily involve a crash. Maybe I will still crash, but my crashes are rarely this delayed and usually I am able to predict it. I don’t know what’s going on, but I am going to try this for 4-6 weeks and see what it does, because if it consistently produces this effect, that would be an incredible improvement to my quality of life and functioning.
Before I end this post, I need to note several confounds that might influence this.
- That morning, I took 5mg prednisolone and 10mg ketorolac for my skin flare. Prednisolone normally makes me feel energized for a few hours and the effects are completely gone by the next day. NSAIDs have never helped with any ME symptoms.
- That morning, I also started 40mg doxycycline once a day. However, at a sub-antimicrobial dose, it usually takes weeks to notice an effect.
- I had a flu about 2 weeks ago, and my physio noted residual lymph node swelling.
- I have been on LDA for about a week at this point (0.5mg), but hadn’t noticed any effect as of that morning.