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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What has helped improve your energy the most?

Seven7

Seven
Messages
3,444
Location
USA
1) Pacing. I get to do more if I don't overdo.
2) D-ribose (not immediate results, slowly just noticed if I stop after a bag)
3) LDN
This combo I got from a video on mitochondria disease. I get the most results with any recommendation for those patient group. Is what I increase when in crash
4)COQ10 400mg twice a day (I can go as high as 1200mg a day ) I don't due to cost.
5) ACL with ALA 500mg (they come together in a pill from GNC).
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
In the 'Possible PEM Blocker' thread in the PEM sub-forum I recently gave my observation of what worked for me last week: cumin seed. I had some cumin seed in a pancake, and it gave me 8 days of vacation from PEM and a great reduction in my baseline ME/CFS symptoms. That certainly counts as 'improved energy'. It wore off a couple of days ago, and I feel really lousy in comparison. I'd forgotten just how lousy I was feeling, and how good it felt to lose that temporarily.

So far one other person has reported trying it and finding it beneficial. I hope some other people try it and get a benefit too. It's a simple experiment, since many people already have cumin in their kitchen, and it's a safe food rather than a hard-to-get and dangerous drug.
 

perrier

Senior Member
Messages
1,254
In the 'Possible PEM Blocker' thread in the PEM sub-forum I recently gave my observation of what worked for me last week: cumin seed. I had some cumin seed in a pancake, and it gave me 8 days of vacation from PEM and a great reduction in my baseline ME/CFS symptoms. That certainly counts as 'improved energy'. It wore off a couple of days ago, and I feel really lousy in comparison. I'd forgotten just how lousy I was feeling, and how good it felt to lose that temporarily.

So far one other person has reported trying it and finding it beneficial. I hope some other people try it and get a benefit too. It's a simple experiment, since many people already have cumin in their kitchen, and it's a safe food rather than a hard-to-get and dangerous drug.
We have cumin powder. I'm now putting it on food. No result. How did you take it? Did you use the actual seeds? This is rough for folks with GI pain.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I ground the seeds (although the seeds were maybe 5+ years old) and put a couple of teaspoons worth in pancakes, along with ground flax seeds. It was just one of my occasional tests to see if cumin started working again, as it temporarily did about 15 years ago. I was amazed that this time it worked again. Originally I noticed that curry made me avoid the symptoms I expected to show up, so that was a partial teaspoon of cumin. I then took a teaspoon or so a day, and after a couple of weeks I realized that it was no longer having any effect.

What happened this time was that the day after the cumin, I did some strenuous activity (chainsawing) that I was sure would cause PEM...and it didn't. Other times I'd tried it I may not have noticed PEM that failed to occur, so it might have had an effect then.

It's most likely the cuminaldehyde, so perilla, which also has that component, should have the same effect.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Diet as in avoidance of all sensitivities and allergies.
On top of that systemic anti-inflammatories / mast cell stabilizers / anti-histaminics like quercetin, boswellia and curcumin.
Stress avoidance, mental and physical.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Aggressive rest therapy (which allows me more physical strength for when I really need to use it)
ALA and Carnitine
Prednisone (for short bursts but wears off)
NADH
Aloe Vera juice (but most brands make me sick so need to be careful)
 

notmyself

Senior Member
Messages
364
coq10 can almost return me to normal energy levels..the only problem is that is causing me insomnia..i think is one of the safest and most efective supplement for energy..it is also good for the heart..
 

jpcv

Senior Member
Messages
386
Location
SE coast, Brazil
low carb diet, probiotics, pacing.
I feel that probiotics work for a limited amount of time, then i have to change the strains I´m using.
coq10, prednisone, Magnesium, multivitamins: No effect at all
 

jpcv

Senior Member
Messages
386
Location
SE coast, Brazil
Treatment of thyroid and adrenals, if these aren't functioning well you won't have energy. After that using an oxygen concentrator for up to 30 minutes after each meal or exercise.

Pam
Very interesting, do you use O2 when you crash? Do you feel any diference?
 
Messages
43
Diet first went low carb high protein wasn't working so increased carbs and feel better for it.

Rest when I need ,work when I can works better than pushing myself like I used to

New protocol and constant monitoring of minerals, blood sugar levels etc
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
Very interesting, do you use O2 when you crash? Do you feel any diference?

Yes it helps to bring me out of crashes pretty quickly. I was in a crash yesterday from 3.30 pm and had to rest the whole of the day and felt pretty terrible. Used double normal amount of oxygen. Didn't have a good night but managed about 6 hours sleep so still poor this morning. Somehow managed to go to Pilates after 30 minutes of breathing oxygen but had to sit for the standing part of the class. Rested when home and more oxygen and able to go the dentist for a check up this afternoon feeling a lot better than 24 hours previously.

Stamina is running out more quickly than usual but if I am sensible should get over it tomorrow or Thursday at the latest. No way could I do this without it.

Pam