Fighting PFS from All Angles

My personal belief is that some people recover from the crash/PFS and others do not. Of those that recover, some do it quickly and others take years. And ‘recovery’ is probably also never 100% no matter where people fall on the spectrum. Why that is…I have no idea. Thank god for the Foundation and for those working to figure it out.

We have zero control over PFS, and for me that’s one of the hardest parts because I like to always have some sort of control over my own circumstances. I think aggressively fighting PFS is a way to help me feel like I have control over something though. It may do no good in the long run, but the psychology of belief and effort are powerful things in my opinion. With that being said, I am trying to fight PFS and the symptoms in any way that I can think of. I think giving your body the best environment to heal is the best approach, and so my focus has been on things that boost immunity, reduce inflammation, reduce stress and improve mood/spirits. I’ve listed below the things I’m currently doing to try and let my body heal, but I was curious what things others have tried? Even if it wasn’t “the cure”, what are some things others have tried that made them feel healthier or happier during the endless waiting?

I’m currently doing these:

  • Pelvic Floor Physical Therapy
  • Hyperbaric Oxygen Chamber therapy
  • Red Light therapy
  • Ketamine Infusion therapy
  • Acupuncture
  • Yoga
  • Walking
  • Weightlifting
  • Diet control/awareness (plant-based diet and no caffeine, junk food, etc.)
  • Probiotics
  • Talk Therapy w/ Psychologist
  • Sleep emphasis/priority (set bed time each night)
  • No sex/masturbation
  • Hydration (half of body weight in ounces of water each day)
  • Massage Therapy
  • Chiropractor Alignments
  • Tanning Bed/Light Exposure

I am trying to refrain from taking any medications to aid in sleep, enhance mood, relieve pain, etc. to allow my body to fully detoxify. I don’t believe anything I’m doing will cure me, but they do help me to cope.

Has anyone else out there tried any of these things with any degree of success or failure? I’d love to hear about it. Or has anyone out there tried any other types of integrative or alternative treatments outside of what a doctor might prescribe? I’d love to hear about that as well.

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Survey

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Are you saying doing surveys helped you in your recovery?

No he’s saying it’s an easy way to collect data for our condition and contribute to the community.

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Can you describe your experience (and maybe improvements) with Hyperbaric Oxygen Chamber therapy? A user called braziliandude said that his penis function returned to normal after ozonetherapy. But I have read A LOT of side effects of this treatment (some very dangerous). I don’t know if I would risk it.

Look:

I’ve only had one session so far. I was in the chamber for about an hour, and it kind of feels like the sensation you get when taking off in a plane and your ears pop a little. I watched Netflix on my phone while I was in there. There is a difference in hospital-grade hyperbaric oxygen chambers and mild hyperbaric oxygen chamber therapy. I am doing the lower mild one that is available to the general public. In the hospital-grade higher pressure units there are some potential side effects, but those side effects are generally the same risks you’d take with pressurization/depressurization such as with diving. If you’re going to undergo oxygen therapy, just be sure to do it at a reputable clinic and you should be fine.

I’ve not felt any positive or negative effects so far with only one session other than when I got out my brain fog was slightly better and I slept really well that night. Typically you have to have several (4-5) sessions before you feel changes. But world class athletes have been using hyperbaric oxygen chambers forever to help their bodies repair and perform better. I think ESPN did a story once on NFL linebacker Clay Mathews when he played at Ohio State. He had a chamber at his house he used to help his body recover.

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Thanks for the explanation. I think that in the end, we are talking about two different therapies. I think ozonetherapy is another type of therapy. Anyway, it is interesting to learn about new approaches to try to use in our condition.

This is actually the unit that I’m using for the hyperbaric oxygen therapy: https://www.oxyhealth.com/respiro-270.html

If it helps, fantastic. If not, I just spend more money and watch a lot of Netflix while I lay in it. The idea of saturating your body/brain with as much oxygen as you can though is a good one.

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For what it’s worth, my experiences on what you’re doing are here. I have to commend you for sticking to it. Motivation is my biggest challenge.

  • Pelvic Floor Physical Therapy——while I didn’t specifically do this, I did yoga which included a mild form of this, and seemed to help with “morning wood”
  • Hyperbaric Oxygen Chamber therapy—didn’t try, seems interesting, and waiting to hear your results
  • Red Light therapy—didn’t try
  • Ketamine Infusion therapy—-saved me last summer from almost debilitating depression, which got worse after all these years of PFS, and helped me fight off new panic attacks I was getting
  • Acupuncture—I’ve had good success with this for joint pain management
  • Yoga—terrific, if I can keep up, which is tough. I found Bikram ‘“hot” yoga to be the best
  • Walking—I’m a New Yorker, and 10,000 steps daily is an easy day
  • Weightlifting—absolutely the best, with heavy weights. Tough to maintain. I feel much better the following day, but muscles disappear after skipping only a couple of days.
  • Diet control/awareness (plant-based diet and no caffeine, junk food, etc.)—also helps tremendously. No junk at all.
  • Probiotic—I stopped them because they upset some lab tests.
  • Talk Therapy w/ Psychologist—haven’t done
  • Sleep emphasis/priority (set bed time each night)—worked well, when I can do it.
  • No sex/masturbation—easy to not do
  • Hydration (half of body weight in ounces of water each day)—helps a lot
  • Massage Therapy—I would do, but costly
  • Chiropractor Alignments—see above
  • Tanning Bed/Light Exposure—-had Melanoma, so I keep away from this…

Solid list but I would like to add:

-Meditation
-Get a pet
-Cold showers
-Meet new people

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This and hot saunas.

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@Darn how did the ketamine therapy help? I’m considering giving this a shot, but it’s expensive

It is expensive, and insurance won’t typically cover it. But for me, it saved my life from the depression/anxiety. Ketamine infusion therapy is said to have two sides to it. 1. The mental health/brain reset side which helped me to feel relaxed and come off of depression medications and 2. The neurogenesis effects that can regrow and repair brain connections. I personally think it’s worth the money for either reason alone.

If you do it, let me know how your experience goes. There is a lot of variety in ketamine therapy clinics so just make sure you’re going to a legit one. I did six 1-hour sessions and there was a therapist in the room with me during all of them doing talk therapy while I was under. Crazy stuff comes up from your subconscious so be ready to deal with shit you never knew you had locked away.

What labs were messed up from the probiotics

Fecal tests.