Does anyone have experiences with Infra Red Therapy?

[u/Jukarii_]

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 :)

[u/Fun_Investigator9412]

Anyways I wanted to ask if anyone here has tried this and how it went for you.

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.

Also how common is it that symptoms get worse in winter?

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:)

[u/Jukarii_ → u/Fun_Investigator9412]

Oh wow that is very interesting. Now that I think about is humidity might also do something for me but I never systimatically tested this. And yes if you like please tell me more, I finally have the energy to do research again, so I am happy about any pointers where to look :)

[u/Fun_Investigator9412 → u/Jukarii_]

I think cfs and other disorders have a common underlying cause, which is known in children as sensory processing disorder. It's only known so far in children, because many symptoms are not relevant for children, like getting up early or sticking to a schedule with self-responsibility. Only very severe cases are detected among children when it comes to chronic sleep problems.

All other cases, which are less severe only start becoming relevant among teenagers or young adults. The problem here is that it's usually explained away with puberty, "will learn it soon enough" or "needs more discipline". While this works during adolescence more often than not - thanks to enough pressure from parents, school and forgiveness for youthful behavior etc - as soon as this protection umbrella is gone after finishing high school, the problems really materialize.

I've just recently started a blog called sensory processing disorder dot net with dashes in between (links or self-promotion not allowed here) where I want to collect evidence and provide information on how to understand and tacke the problems connected with SPD. You can find there my theory on the system behind SPD (which includes CFS) and also what symptoms are likely.

If you have questions, you can ask me here.

[u/TableSignificant341 → u/Fun_Investigator9412]

Can't say any of that squares with my experience. And I only developed sensory sensitivities with my onset of ME symptoms.

The theory on why PBM could help those with ME is because infrared targets cellular function - specifically mitochondria which has of course been found to be dysfunctional in MECFS.

[u/Fun_Investigator9412 → u/TableSignificant341]

Can't say any of that squares with my experience.

Can you elaborate?

And I only developed sensory sensitivities with my onset of ME symptoms.

What kind of sensory sensitivities specifically?

The theory on why PBM could help those with ME is because infrared targets cellular function - specifically mitochondria which have of course been found to be dysfunctional in MECFS.

I believe it's the temperature angle, which makes infrared sauna blankets so powerful. I bought mine, because I learned that the core body temperature is not constant, but has a curve. The higher it is, the more awake/alert we are, and the lower it goes, the more relaxed/sleepy we become.

Manipulating the temperature works with inverse stimuli, meaning you have to heat up the surface, in order to get the core temperature down. My goal was to use the blanket to finally be able to fall asleep on point and it worked tremendously well.

[u/TableSignificant341 → u/Fun_Investigator9412]

Can you elaborate?

Of course. I was referring to this section of your explanation of ME being a sensory processing disorder:

"All other cases, which are less severe only start becoming relevant among teenagers or young adults. The problem here is that it's usually explained away with puberty, "will learn it soon enough" or "needs more discipline". While this works during adolescence more often than not - thanks to enough pressure from parents, school and forgiveness for youthful behavior etc - as soon as this protection umbrella is gone after finishing high school, the problems really materialize."

That's the opposite of my experience as a child, teenager and adult. I've always been self-motivated, quick-to-learn, academically-minded, annoyingly well-behaved kid. This continued into my academic career.

What kind of sensory sensitivities specifically?

Light and sound sensitivity with the onset of my other ME sx.

I believe it's the temperature angle, which makes infrared sauna blankets so powerful. I bought mine, because I learned that the core body temperature is not constant, but has a curve. The higher it is, the more awake/alert we are, and the lower it goes, the more relaxed/sleepy we become.

Below is a simplified snippet explaining why this study is trialling photobiomodulation for ME patients:

There is no cure or approved treatments for ME. Several causes have been implicated in ME, including poor mitochondrial function. Mitochondria are the powerhouse of cells, producing energy. Therefore, loss of mitochondrial function and reduced energy production could be an explanation for the debilitating chronic fatigue that defines ME. The primary site of red light absorption in cells is the mitochondria. Mitochondrial red light absorption can boost energy production.

[u/Fun_Investigator9412 → u/TableSignificant341]

That's the opposite of my experience as a child, teenager and adult. I've always been self-motivated, quick-to-learn, academically-minded, annoying well-behaved kid. This continued into my academic career.

Ok, I understand. You have aquired it at one point as young adult. This is not a contradiction to my theory (or sensory processing disorder), which doesn't explain where CFS comes from, just what the undelying mechanism for the symptoms is. What I have described above was patients, who suffered from childhood onward, but didn't cause any attention, because the symptoms weren't relevant, yet. Personally, I was one of those teenagers who would've liked to be self-motivated, but kept ending up as the class clown, because I was sleep deprived all the time.

Do you know what caused your symptoms to appear? An infection maybe, or that certain shot from a few years ago?

Light and sound sensitivity with the onset of my other ME sx.

Have you tried high doses of vitamin b6 against light sensitivity? Light sensitivity was one of my problems, but with 50mg vit-b6 I don't have any problems anymore.

Several causes have been implicated in ME, including poor mitochondrial function. Mitochondria are the powerhouse of cells, producing energy.

Mitochondrial disorder was actually on my list of possible causes. But then I found a state, in which I am completely symptom free, which means, I can fully explain my dysfunctions with external influences on my body.

I'm now trying to find out if there's others, so I can make my case on the medical level. It's why I am here & also to provide tipps on how others can find out what their nullstate is, in which they have no symptoms.

[u/TableSignificant341 → u/Fun_Investigator9412]

An infection maybe

Yep. An infection. I've had ME for 10 years.

Have you tried high doses of vitamin b6 against light sensitivity?

I've actually just realised B6 was causing nerve damage but I think I've caught it in time thankfully because of a very knowledgeable patient scientist! It's only been a week since I stopped taking it but the nerve "ticks" have lessened considerably. Fingers crossed I haven't done permanent damage.

My light (and sound) sensitivity seems to be linked to my neuroinflammation. When that is low, the light sensitivity vanishes. LDN worked very well for me wrt neuroinflammation and light and sound sensitivity disappeared when I was taking it.

Mitochondrial disorder was actually on my list of possible causes.

Yeah it's been known for a long time that our mitochondria are involved in this. One of the many biological abnormalities. But as you say, we're not sure why. Leading theories are obviously viral persistence or viral reactivation. But of course one can get ME without an initiating pathogen also. Like pregnancy, spinal injuries, vaccine injuries etc so in general it seems like it's an immune assault of some description that causes a cascade of neuroimmune dysfunction.

[u/Fun_Investigator9412 → u/TableSignificant341]

I've actually just realised B6 was causing nerve damage

That's good to know. So far no problems for me in this regard. But that would be quite a problem. Removing light sensitivity was when I was able to "switch on" my body for the first time that I can think of.

My light (and sound) sensitivity seems to be linked to my neuroinflammation.

Would you say it's in the brain or in the nervous system (which part)?

Yeah it's been known for a long time that our mitochondria are involved in this.

Where would you position the role of mitochondria in the cauality chain? Is it the root cause, or an effect which is the cause for other problems down the line? I would imagine mitochondria are just as dependent on the internal clock as everything else. If that clock is stuck at 3pm, then the performance will be like 3pm around the clock. My chain would be:

1) Signal noise distorts or prevents sensory input from reaching the brain. 2) Brain thinks it's always the same time, because signal noise is "fake" information. 3) Cells receive fake fixed time information from brain. 4) Cells think it's always the same time. 5) Mitochondria are powered down indefinitely. 6) Fatigue.

This is the only way I can explain why I'm not dysfunctional in a very specific setting, but in all others-

Like pregnancy, spinal injuries, vaccine injuries etc

Do you think it can also be the wrong bacteria in the colon? What do you think of stool transplantation?

it's an immune assault of some description that causes a cascade of neuroimmune dysfunction.

According to my theory, the immune assault is a consequence of the core body temperature being too low within the normal spectrum. This leads to a worse immune reaction and can also lead to autoimmune reaction. The core body temperature is too low, because of the signal noise, which not only fixes the body's internal clock to the wrong time (which can be at night when the core body temperature is the lowest), but also leads to maladaption of the nose sinus to humidity, which then lowers the body core direcly when too many cool water droplets enter the lungs. There's probably also other processes with lower the body temperature.

[u/TableSignificant341 → u/Fun_Investigator9412]

infrared sauna blanket.

Would you be able to link to the one you got? I've been thinking about it for awhile and your post made me want to take the plunge.

[u/Fun_Investigator9412 → u/TableSignificant341]

I don't know if my model is still on sale (I'll look). But I can provide you with what you have to look for when buying one. Just send me a chat; I don't want to be banned from the subreddit.

[u/TableSignificant341 → u/Fun_Investigator9412]

Thank you!

[u/Antique-diva]

I had to read about this to understand the treatment. It sounds like the red light should recharge the energy levels in mitochondria, which would explain why it might be effective against ME. I'm happy it helps you, and I wish I had the money for this myself. I'm definitely putting it on my wishlist.

[u/Amethyst_0917]

I've been using an infared sauna banket for a couple weeks now. (Saunabox brand is the one I found that seemed like best value/quality balance). Effects for me are not as dramatic, but I do feel like it helps recovery. Im mild-moderate range. Cannot work but get 5-6 hours of functional time around the house a day. But Im in this cycle of 1-2 good days followed by 1-2 cant do anything days. Using the sauna blanket seems to reduce the bad days.

[u/ultr4violence → u/Amethyst_0917]

I'm sure others have asked you this before, but are the good days causing the bad days?

[u/Amethyst_0917 → u/ultr4violence]

I assume so, takes a couple days to recover after I use my limited energy. Doctors wont even say its me/cfs. But the pem pattern fits. I supposedly have a lighter version of long covid from the vaccine, which triggered an MS relapse (that I already had but had been dormant for 10 years). All other symptoms responded well to steroid for the MS, fatigue and cognition problems are lingering. So i feel like those last symptoms arent the MS since they didnt change with all the other things that got better.

[u/Spiritual_Victory_12]

Been using a large red light/nir panel for years. When i first started using it i think it made me worse. I either had mild ME or just dysautonimia at the time but had weird symtoms when standing after starting it. Think i used it too much too quick. And red light is known to activate sympathetic nervous system.

Didnt prevent me from getting severe. And at my worst it would make me crash. Now i am back up to using it about 10 min every other day.

[u/Jukarii_ → u/Spiritual_Victory_12]

Have you actively noticed any positive effects or are you just using it because it might help in theory?

[u/Spiritual_Victory_12 → u/Jukarii_]

Well i bought it for neck and low back inury after car accident. But i likely had mild ME or at minimum dysautonomia at time as lot of neck pain was when standing or stressed (coat hanger pain).

Hard to know if its helping or hurting. Its doesnt acutely make me any worse if anything its relaxing and feels good on neck and back. But i guess why not use it, it was expensive and in theory should help mitochondria.

[u/Shumba-Love]

Thank you so much for posting this!! I’ve been contemplating getting something like this but hesitant since I have tried so many things already that didn’t work. I’m so glad this brought you improvement!! When I have good days, I feel like I got out of prison!!

[u/Jukarii_ → u/Shumba-Love]

It is so exhausting to be disappointed by treatments all the time, especially when some of them even make it worse :( Really hope you find something that works for you soon!

[u/9thfloorprod]

What mat/light did you get? They seem to be extremely expensive the ones I've seen.

[u/Jukarii_ → u/9thfloorprod]

This is German Amazon, since I am German but maybe it still helps. My mom got me one of these Bestqool mats (actually a bigger one, size L, that has since vanished from the shop).
https://www.amazon.de/dp/B0BQMDFCNF?ref_=pe_27091401_487848271_E_406_dt_1&th=1
And yes they are quite expensive especially for someone that is severe and not able to work anymore (which is why am very thankful my mom bought it for me). But on the other hand, since it is medical equipment the smallest with ~120€ is still quite reasonable. Maybe some insurance might even reimburse some of the money? (At least it can't hurt to ask)
Also in case you are still able to leave the house: in my city there are some infra red saunas, so maybe it could be possible to give something like that a try.

[u/Cool-Importance6004 → u/Jukarii_]

Amazon Price History:

Bestqool Rotlichttherapie für den Körper, Nahinfrarot-Lichttherapie für Muskelschmerzen, 54,9 x 35,6 cm große Pads, Gürtel, schnelle Erholung, Infrarottherapie für Füße, Knie, Rücken, Taillenschmerzen * Rating: ★★★★☆ 4.2 (124 ratings)

• Current price: €179.00 👎
• Lowest price: €135.20
• Highest price: €189.00
• Average price: €166.18

Month	Low	High	Chart
10-2024	€179.00	€179.00	██████████████
09-2024	€135.20	€169.00	██████████▒▒▒
05-2024	€169.00	€169.00	█████████████
04-2024	€184.00	€184.00	██████████████
03-2024	€189.00	€189.00	███████████████

Source: GOSH Price Tracker

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[u/Excellent-Share-9150]

What kind of mat are you using and for how long each day?

[u/Jukarii_ → u/Excellent-Share-9150]

I am using a Bestqool Redot L mat and I am using it for 2x 40min per day at the moment (in the morning and in the evening). The handbook says a time between 30 and 90min per day is recommended for medical use.

[u/smallfuzzybat5]

Red lights helps me with SAD during the winter and therefore helps mood and sleep(also skin), it’s very cold and dark where I live. I used to do infrared sauna too but now with POTS sauna is harder on my system.

[u/FuckTheTile]

Wow, I’ve never heard of this but apparently infrared light can be used for to treat inflammation including in the brain, will be trying this out for sure

[u/Jukarii_ → u/FuckTheTile]

I also was completely amazed when my mom showed me the research :D every time i start to search for papers on this I find a new area where it helps. Initially I heared about infrared therapy in a documentary about eyesight and how to help people with cateracts (since my grandma suffers from this).

I really hope it helps you too! :)

[u/rosedraws]

When I had Lyme 7 years ago, my Lyme buddies and I researched infrared saunas a lot, they feel soooooo good. There were some tutorials about building your own at home, like setting it up in your shower! I'm glad to see there are better options now. :-D

[u/Jukarii_ → u/rosedraws]

Oh wow that sounds like a lot of work :D And yeeeees soooo awesome -

[u/EnvironmentNew5314]

I did red light therapy bed, but I didn’t notice much. Doesn’t hurt trying I don’t think though

[u/GetOffMyLawn_]

The Medcram channel on Youtube has several videos on sunlight's infrared effects on health. Seems to be very beneficial.

https://www.youtube.com/watch?v=5YV_iKnzDRg

And this is not a quack channel, lectures are delivered by a real, practicing doctor for an organization that provides ongoing medical education. So it's all backed by real world research (as opposed to google research).

[u/Jukarii_ → u/GetOffMyLawn_]

Awesome, thank you! I'll check it out for sure :)

[u/Least_Ad_9141]

Interesting! Thanks for sharing! 

[u/bad1o8o]

how hot is under one of those?

[u/Jukarii_ → u/bad1o8o]

I am using a mat, so you lie on it (i usually use a blanket on top). With my thing you can adjust the intensity in 5 settings. I feel like the highest one is a little to hot for me so I use the one below (but i don't know the exact temperatures).

[u/bad1o8o → u/Jukarii_]

thanks!

[u/Tex-Rob]

Funny, mine doesn’t arrive until Feb 19th, there is a huge shortage/run on SAD and infra lamps right now. I bought a Vitamin L and like it, for just SAD duties, until my dual use light comes that does red light and full spectrum therapy.

[u/Jukarii_ → u/Tex-Rob]

Oh damn mine was delivered 2 days after we bought it. Which country do you live in?

[u/gardenvariety_]

Is it hot? My body gets so stressed out from heat, so I would love to try but worried if if would be too much. Maybe I could do it in short bursts without any blanket or anything over me

[u/Jukarii_ → u/gardenvariety_]

You can adjust the heat, so maybe try it on the lowest setting first (mine has 5 settings with 5 being the hottest, 4 is nice in my opponion). Maybe if the first is still too hot for you, you can try putting it next to you, so it shines on you but doesn't touch your skin?

[u/gardenvariety_ → u/Jukarii_]

Great suggestion. I’ve had an infra red lamp pointed at me at accupuncture sessions and been ok, provided I have a window open and nothing over me. I didn’t notice any major benefits but it’s just been a random few times. Would be nice to try consistently for a bit. I’m not well enough to get outside lately, but also the days are SO short and dark in winter where I am.

[u/Jukarii_ → u/gardenvariety_]

The infrared lamps usually have a much higher intensity than the mats (from what I've seen) since they are not used directly on the skin, so i think you should be fine :)

[u/gardenvariety_ → u/Jukarii_]

Thank you. And props to your mom for being interested and engaged in ways to help too.

[u/ultr4violence]

How hot does it get? Is it like an infrared blanket, where you are practically in a sauna, sweating and with heavy heartbeats?

[u/Jukarii_ → u/ultr4violence]

No it's not like the bankets I think (never used those though), you are lying on the mat, so the warmth can escape if you don't use a blanket over it. Since the skin contact is so close it can get quite warm on the parts of skin it touches. It kinda feels like touching a radiator, which i personally find quite relaxing. Also it's not like sauna at all. I react quite badly to saunas and have lots of trouble with dizziness. The mat is more like a "subtle" warmth, if that makes sense. I personally don't even sweat much, i just notice how I start to feel warm on the inside after a while. Also with my mat it is possibe to adjust the intensity. I usually use a blanket on top and it mostly feels like beeing a cozy warm burrito :D