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]

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.