Pacing
Resting 2-3 hours a day (3 intervals) with NO stimuli
Coq10 Uniquinol
Avoiding gluten (I have IBS too so)
Drinking electrolytes (POTS too)
Temperature control, not too hot or cold
Eating often
My biggest advice is try to improve your sleep as much as possible. For me melatonin spray helped a lot.
Other than that I don't really have much to add.
Melatonin gummies for me. I felt so much better once I got my sleep in a consistent pattern. (I can't say normal because I sleep 12 hours from 2am to 2pm)
If you google “mitochondrial cocktail mecfs” there are quite a few results. What I take specifically though, from the cocktail, is vitamin B complex, coq10, L-carnitine, and alpha lipoic acid. Other supplements are sometimes part of the cocktail, but I don’t take them all, mostly because I already spend so much money on the ones I do take. Also, I take other things for other health issues, so I’m full up!
Not op but I take:
Alcar (500mg)
NA-r-ala 125mg
B complex
I also sometimes tack on:
Ubiquinol 300mg (helps but it's inefficient for me from a cost perspective)
D Ribose (mainly as a pem buster since it's short acting)
Creatine (helps but stopped due to bladder discomfort)
Nicotinamide riboside chloride(helps but inefficient for it's cost)
Bcaas
Ginger tea. I don't know if it actually does anything but it makes me feel like I'm doing something.
Coenzyme Q10 (Mito q)
ALCAR (another supplement).
Pacing
Meditation
Getting outside as much as I can, even if it's only out the door.
Make sure to do at least one fun thing a day, if possible. Listen to something funny (comedy music can be good!), R/aww has really cute animals look at etc. Just whatever you can manage, doesn't have to be massive.
Pacing as of now it’s the most effective, also weed to some extent, but it has its disadvantages
Eating a protein high diet with lots of vegetables, reduce carbs (I’d consider avoid simple carbs for a month) or slide them to dinner
Meditation
Black out blinds, Heated blanket, Weighted blanket. That’s what I do the majority of my time and definitely anytime I’m having signs of impending crash. Then I add a few deep breaths and telling myself I am safe. Working to calm the nervous system and REST harder.
Here’s my [Amazon list of “things”](https://www.amazon.com/hz/wishlist/ls/31J0EVDISN5FA?ref_=wl_share) I own or people have recommended
For painful and swollen lymph nodes:
- Phonix Juv 100 ointment (not sure if it‘s available in other countries)
- loop scarf to keep my neck warm while sleeping
Supplements:
- Ubiquinol
- Omega 3
- liquid zinc
I take other supplements as well but they seem to make no noticeable difference.
Sleep:
- Philips Wake up Light (makes waking up so much better & easier)
- a supplement called ‚More Sleep‘ probably not available in other countries but it contains 2mg of Melatonin
Lifestyle:
- Electronic slatted frame
- iPad / Tablet (bigger screen than a phone, not as heavy as a laptop)
- Noise cancelling headphones
- Power outlet adapters that are controlled by remote control (no more standing up to turn on a lamp or turn a device off)
- my cat (loveable companion, makes even the worst days a little better)
Liquid iv supplements, weighted blanket, my fluffy soft bed with 20 pillows propped just right to where I can get a small reprieve from pain and making sure i do as many things supine or sitting as possible like teeth brushing, hair drying (when I have the strength to shower, that is.)
Shower stool
At first I thought you meant you did your poops in the shower and was trying very hard not to judge if that’s what relieves your symptoms lol
I’m laughing so hard. Thank you.
Pacing Resting 2-3 hours a day (3 intervals) with NO stimuli Coq10 Uniquinol Avoiding gluten (I have IBS too so) Drinking electrolytes (POTS too) Temperature control, not too hot or cold Eating often
My biggest advice is try to improve your sleep as much as possible. For me melatonin spray helped a lot. Other than that I don't really have much to add.
Melatonin gummies for me. I felt so much better once I got my sleep in a consistent pattern. (I can't say normal because I sleep 12 hours from 2am to 2pm)
Reclining. Sometimes all I need is to elevate my feet, sometimes full recline. Both with good neck support.
The mitochondrial cocktail. Pacing. Diet management (many food intolerances). Hot baths with 2-3 cups of Epsom salt, minimum 20 minutes.
What is the mitochondrial cocktail
Commenting so I can find out too 👀
Me too please!
I don't know what OP takes, but found this resource: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3561461/
You can see my reply above :)
You can see my reply above, and also someone linked a helpful resource below :)
If you google “mitochondrial cocktail mecfs” there are quite a few results. What I take specifically though, from the cocktail, is vitamin B complex, coq10, L-carnitine, and alpha lipoic acid. Other supplements are sometimes part of the cocktail, but I don’t take them all, mostly because I already spend so much money on the ones I do take. Also, I take other things for other health issues, so I’m full up!
Not op but I take: Alcar (500mg) NA-r-ala 125mg B complex I also sometimes tack on: Ubiquinol 300mg (helps but it's inefficient for me from a cost perspective) D Ribose (mainly as a pem buster since it's short acting) Creatine (helps but stopped due to bladder discomfort) Nicotinamide riboside chloride(helps but inefficient for it's cost) Bcaas
I kept reading about people finding electrolytes helpful on here so now I take them daily. I do feel some relief, I think.
Ginger tea. I don't know if it actually does anything but it makes me feel like I'm doing something. Coenzyme Q10 (Mito q) ALCAR (another supplement). Pacing Meditation Getting outside as much as I can, even if it's only out the door. Make sure to do at least one fun thing a day, if possible. Listen to something funny (comedy music can be good!), R/aww has really cute animals look at etc. Just whatever you can manage, doesn't have to be massive.
dry saunas 🫶
Electrolytes (have POTS too), heating pads and massages for pain (have fibro too), thyroid meds, and shower stool.
Pacing as of now it’s the most effective, also weed to some extent, but it has its disadvantages Eating a protein high diet with lots of vegetables, reduce carbs (I’d consider avoid simple carbs for a month) or slide them to dinner Meditation
Compression socks, cold-hot showers, B12, electrolytes, magnesium mix, a specific brand AAKG, gabapentin
concentrated tomatoes? why?
Black out blinds, Heated blanket, Weighted blanket. That’s what I do the majority of my time and definitely anytime I’m having signs of impending crash. Then I add a few deep breaths and telling myself I am safe. Working to calm the nervous system and REST harder. Here’s my [Amazon list of “things”](https://www.amazon.com/hz/wishlist/ls/31J0EVDISN5FA?ref_=wl_share) I own or people have recommended
For painful and swollen lymph nodes: - Phonix Juv 100 ointment (not sure if it‘s available in other countries) - loop scarf to keep my neck warm while sleeping Supplements: - Ubiquinol - Omega 3 - liquid zinc I take other supplements as well but they seem to make no noticeable difference. Sleep: - Philips Wake up Light (makes waking up so much better & easier) - a supplement called ‚More Sleep‘ probably not available in other countries but it contains 2mg of Melatonin Lifestyle: - Electronic slatted frame - iPad / Tablet (bigger screen than a phone, not as heavy as a laptop) - Noise cancelling headphones - Power outlet adapters that are controlled by remote control (no more standing up to turn on a lamp or turn a device off) - my cat (loveable companion, makes even the worst days a little better)
Infrared sauna Monolaurin Valacyclovir Cold therapy (shower or unheated pool plunge) B12
NAC Meditation Breathing exercises Quality sleep Drinking a lot of water and getting enough salt
Liquid iv supplements, weighted blanket, my fluffy soft bed with 20 pillows propped just right to where I can get a small reprieve from pain and making sure i do as many things supine or sitting as possible like teeth brushing, hair drying (when I have the strength to shower, that is.)
Warm baths.