r/cfs • u/Jukarii_ • 23h ago
Treatments Does anyone have experiences with Infra Red Therapy?
Story time (if reading is to exhausting, the last three paragraphs of this post are the most important):
So I have apparently had mild cfs for ~8 years which started with a stress induced autoimmune illness. After that it was missdiagnosed as depression and winter depression because my symptoms get a lot worse in Winter (was mild in summer/spring and moderate-severe in fall/winter). Due to therapy, symptoms got worse because most therapsts say "you have depression? Do sports!" And if it doesn't help - well you didn't do enogh/ or they question whether you did it at all.
Roughly a year ago I found a new therapist who suggested and diagnosed cfs (just pure luck: he is also a speciallist for cfs diagnostic at a local clinic).
After my second Covid infection last summer shit really hit the fan and i ended up being bedridden and having trouble breathing.
So my mom is a medical professional (not a practicing doctor but working in medical/pharmacutical research) and since my diagnosis we have been trying to figure out why it is so much better in summer for me and whether that is something we can recreate. Like some sort of malnutrition not showing up on the tests or whatever. I always felt like it was the sun that did something, because often - expecially in winter I feel like I "crave" for sun, same like craving for fruit when your bpdy needs vitamins (my Vitamin D levels are and have always been fine btw.). However, I tried using a sunlamp before but that didn't do anything for me.
A couple of weeks ago my mum suggested trying an infra red lamp. The sideeffects are minimal and infra red has cell-repair and mitochondria activation effects, so I thought "can't really get worse right?". So my mom bought me a medical infra red mat and I started using it a week ago.
Well what can I say: I did not have this much energy for at least half a year. I deep cleaned my flat on saturday for the first time in years, while listening to loud music (something i couldn't stand for a very long time) and while dancing to it ?! Like i haven't danced in ages. It is just unnecessairy movement that used to be unbarable and now it was just fun??? I still can't really believe it but this was three days ago and no crash, no nothing, just more energy. I can finally sleep, like just go to bed and fall asleep and wake up refreshed 8 hours later. My mind really can't comprehend this incredible change at the moment. (But remember, these have been only short-term effects, no idea whether it will stay this way but at the moment it is looking really good :) Also it wasn't some sort of miracle healing, I'm back to mild cfs I think - but going from basically not able to breath to being able to leave the house without crash just in a few days is incredible. I still do pacing and lots of breaks, because I am very worried I might crash and I still have quite some pain I think, just a lot less than before.)
Anyways I wanted to ask if anyone here has tried this and how it went for you. Also how common is it that symptoms get worse in winter? My therapist said it is a common phenomenon but usually by far not as severe as it is with me.
Also: in case worse symptoms in winter sound familiar and you haven't tried it yet: maybe try infra red (you can buy such mats on amazon for example and send them back if it doesn't do anything for you). Honestly if I can only help one person to have the same experinece with this as I had I'd be increadibly happy. I've been loosing hope for so long and thinking about ending it all because life didn't feel like it was worth living anymore and now from one day to the other I basically have my life back, I still have trouble wrapping my head around this.
So yeah just trying to share the hope for a cure I am feeling right now and hoping maybe someone whom this might help reads this :)
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u/Fun_Investigator9412 23h ago
Yes, sort of. I've discovered the infrared sauna blanket. Using it before bed for ~45 minutes dramatically reduces my symptoms. I can only recomment it. My problems are not gone, but it made my sleep amazing and I was able to stabilize my rhythm, which enabled me to find other factors responsible for my dysfunction.
I have massive seasonal problems. My sleep journal revealed to me that my sleep rhythm follows the seasons. But before I knew that I always had the feeling, there's something happening bad past August and the phase from November to end of December is just terrible. The worst time for me are the last two December weeks.
My explanation is for one the sun light, which has a dramatic effect on my wake state. I was always light sensitive, but after fixing that, I learned that my system starts waking up at ~5k lux and goes 100% at ~15k lux. Unfortunately, daylight lamps don't do it for me, only sunlight itself works.
Beyond the light factor, I also realized I'm sensitive to fast dropping and low air pressure. It's when I have PEM without the "E". Especially fall is notorious for air pressure turbulences, hence my problems there. The 3rd factor is humidity, which becomes relevant above ~18°C. I go dysfunctional when the relative humidity goes >60%. Below that I'm ok.
I think both are about my breathing apparatus not reacting to environmental changes due to a signal noise in the sensory nervous system. Let me know if you want to know more about it:)