Can everybody make a list of things that helped their fatigue?

[AnishME]

Hi, everyone
Just wanted to make a list of things that helped their fatigue.
Theres help for. Pain but not any help for fatigue from doctors so please comment

Can everybody comment a thing that helped their fatigue?

 

[YippeeKi YOW !!]

There are so many threads on this I dont know where to start, and unfortunately, I cant remember all, or actually, any of them. But I know some smart, savvy people who, I'm betting, can ....

Just a brief word of warning ..... what works for one of us may not work for anyone else, so if you want to try something that's mentioned here, start with a low dose, and raise it very very slowly, until you're sure it has no negative side-effects on your particular system and version of this crabby little creep show of an illness /

There. That said, @Shanti1 , @Hip , @Jyoti, @godlovesatrier , @Judee , @Gingergrrl ....More later, if I can think of the ....

 

[Wishful]

What she said: what works for one isn't all that likely to work for someone else. What's the largest percentage of people that a certain ME treatment actually works for? Is it 20%, 10%, or even lower?

Also, keep in mind that treatments for normal fatigue are unlikely to work for ME's "fatigue-like" symptom, since they are most likely completely unrelated mechanisms. I've found a treatment for my PEM, my neuropathic pain, and general symptoms (I think that included my fatigue-like symptom), but nothing specific for the fatigue-like symptom. FWIW, the latter treatment was T2 (3-5 diiodothyronine) or supplemental iodine (some becomes T2), and that was one 100 mcg dose every 21 days. If you search the forums, you can find more info. No one else reported benefits from it.

I'd love to find a fatigue-(like)-reducer, but I'm not expecting to find one even if everyone here did list what worked for them. If there is one for me, it's probably a tiny fungus growing on an insect only found in a few square km of remote jungle.

 

[Judee]

You might want to read these pages:
https://forums.phoenixrising.me/thr...went-on-to-live-their-lives-35-stories.81050/

https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/

If you are in the first two years of your disease you might have a chance at recovery by practicing something called Aggressive Rest Therapy which is taking pacing to a higher level. Here are some threads on that: https://forums.phoenixrising.me/members/judee.28070/#about

Also I'm in the beginning of it but you might want to read about the protocol being talked about in this thread: https://forums.phoenixrising.me/thr...eficiency-as-a-main-contributor-to-cfs.89406/

A survey on the healthrising has a survey supporting that idea: https://www.healthrising.org/?s=thiamine
(It's one of those three articles.)

I do think a lot of us still around here continue to struggle with this unfortunately.

It's my #1 symptom with it's twin PEM, and triplet of feeling faint all the time. Brain fog is a younger sibling that I could possibly live with if I could just get rid of the other three. (The tremors are also something I could live without.)

Sorry to throw so much info at you at once.

If I had to say which to start reading first, I think it would be the thread on thiamine and those surveys on healthrising as that seems like the area where a larger number of people are reported as improving whereas the others in the stories of success are maybe a handful here and there. (There might be more but once someone recovers from this disease they tend to disappear from the site so we don't know if there were more).

The thiamine is also an easy to obtain treatment that doesn't require a doctor's Rx. However, that doesn't mean that it doesn't still have some precautions...some of which are addressed in those threads.

And then I would say to go onto the Aggressive Rest Therapy threads in my summary because even if you find something to fix the underlying cause for you, you'll still need to give your body time and rest to heal.

 

[Hip]

Just wanted to make a list of things that helped their fatigue.

Usually it requires improving the ME/CFS illness as a whole before fatigue improves. This of course is easier said than done. Some approaches to trying to improve ME/CFS are detailed in this roadmap.

Stimulants such as Ritalin can help fatigue, but hard to get a prescription. And drugs like moclobemide or amantadine might help fatigue a little. See the energy section of the roadmap for references.

If you have gut issues like SIBO, addressing that can greatly improve fatigue levels. See SIBO section.

 

[hapl808]

Stimulants such as Ritalin can help fatigue, but hard to get a prescription.

Is there a consensus on stimulants like Ritalin or Modafinil for their likelihood to worsen crashes if they help fatigue?

 

[Vladimir]

I got my first major fatigue improvement when I removed wheat and dairy(except for cheese) from my diet. Expanded it to FODMaP later.

It still works for me in terms of fatigue, but I do often feel unbearable cravings for the forbidden stuff. I feel like I get a serotonin or dopamine boost from that almost immediately, however it comes with a price of weakness and fatigue for the next day(s)...

 

[Hip]

Is there a consensus on stimulants like Ritalin or Modafinil for their likelihood to worsen crashes if they help fatigue?

I am not sure. I avoid stimulants, because even when I was healthy, I found they give me lots of energy, but then make me feel miserably depressed the next day.

With modafinil, the benefits often cease to manifest after some months. Some patients report energy boosts with modafinil, but then some months down the line it stops working for them. I am not sure if the same applies to Ritalin, because there are fewer anecdotal stories with this, due to the difficulty in obtaining it.

 

[gregh286]

Sauna
Gluten avoidance.
Food additive avoidance.
Low carb diet.
Intermittent fasting.
Immodium
Slow eating.
Decaf drinks.
Digestive enzymes.

 

[YippeeKi YOW !!]

If there is one for me, it's probably a tiny fungus growing on an insect only found in a few square km of remote jungle.

...... ditto ....

But that doesn't mean that maybe someone WILL post a 'helper' that's possibly more universal in its effects, so don't be discouraged @AnishME . These warnings were posted just to make sure that you know how to approach info you find here .... I did find information here that helped me enormously, mostly in the form of research studies that members or staff had posted, and that pointed me in the right direction ....

 

[Mary]

BCAAs (branched chain amino acids)
d-ribose
B-1 - large boost in energy
B6
methylfolate (large boost in energy)
B12
Potassium - had been deficient, have to take it daily
Phosphorous - " have to take it a few times a week

All of these have given me more energy for daily living, where I sometimes feel normal. I still crash, still have to pace to avoid PEM, but have many more good days since adding these to my regiment. I do agree, start slow and only start one thing at a time. e.g., thiamine (B-1) gave me a major boost in energy, followed by severe fatigue because it caused my phosphorous to tank (refeeding syndrome)

 

[YippeeKi YOW !!]

I do agree, start slow and only start one thing at a time.

I wasn't sure about including you in my tags for this thread because I havent seen you around lately, and thank you for posting the things that helped you !!!

And thank you, too, for including what I forgot .... to trial ONE THING AT A TIME, as well as the start low and go slow part .... @AnishME , if we trial more than one thing at a time, we have no way of knowing which of them produced either good results, or a not too pleasant result ....

That's also one of the reasons that I avoid multi-factored supps or herbs for the most part ....

Can't believe I forgot that ... thanks, again @Mary !!!

 

[Wishful]

to trial ONE THING AT A TIME

There's an argument for the opposite too. If you're absolutely desperate for some benefit, trying a bunch of things at once isn't that bad of an idea. I took a multivitamin/mineral tablet, got a temporary remission, so I knew there was something in that list of components that I needed. I worked my way through the vitamins separately, finding nothing useful. Then I tried copper and iodine, since those were available in my kitchen, and that worked, so it was easy to identify iodine as the functional mineral. If I tried the whole list of components individually, "starting low and slow", how long would it have taken to identify iodine?

The downside of the "shotgun" approach is that you might have one component that would work for you, but another one that counters it, or at least masks it. An upside is that there might be one component that would work, but it requires a cofactor, so if you try it alone, you might get a false negative. You can counter that by checking for necessary cofactors before trying something.

It's a tricky business, with no "one true way".

 

[Mary]

@YippeeKi YOW !! - I've been kind of sidelined for a few weeks but I'm getting back to baseline!

 

[lenora]

Yes, @Mary, I did notice that you weren't very active. I hope things are heading in an up direction. Yours, Lenora

 

[Rufous McKinney]

With modafinil, the benefits often cease to manifest after some months.

I tried modafinil twice and had PEM crashes afterwards both times, even though the second time I made sure to do "nothing out of the ordinary"...(ie. I did not exert). Was not worth it.

 

[Belbyr]

This is a strange story, but I once came down with iodine toxicity. A Dr (quack) was telling me to take these iodine pills as a supplement for about a year. Welp, I built up a huge store of iodine in my thyroid and got sick with a fever once. Once that happened it kicked off a huge dump of iodine into my system and I felt like I was running on endless energy. Resting heart rate unfortunately was very elevated for about 3 months, but I would go running at 2-3 in the morning just to burn off some energy. It was crazy!

I don't suggest taking iodine as a supplement and the endocrinologist said it was one of the dumbest things he's ever heard of a doctor doing to a patient like myself.

 

[GreenEdge]

Pacing - stop before you get tired.

Exercise regularly but keep it short so you don't add to your fatigue.
Types of exercise that I've found beneficial are:

• Tai Chi - (at first sign of pain, check and correct your posture or stop)
  • can be as gentle as calm smooth movement whilst lying in bed.
• Walking - best done: after Tai Chi, in nature, on level ground. (stop at first sign of pain or fatigue)
• Swimming - full body exercise whilst being weightless in the water.
  • Wading: walking forwards and backwards along swimming lane center line.
• Weight training: 2 sets and only 2-3 reps. Select the weight that you would normally use for 10-15 reps.

A diet high in animal proteins (eg. meat, poultry, fish, eggs and dairy) will help you gain muscle. Isn't that obvious?

 

[GreenEdge]

I got my first major fatigue improvement when I removed wheat and dairy(except for cheese) from my diet. Expanded it to FODMaP later.

It still works for me in terms of fatigue, but I do often feel unbearable cravings for the forbidden stuff. I feel like I get a serotonin or dopamine boost from that almost immediately, however it comes with a price of weakness and fatigue for the next day(s)...

Hi Vladimir, I think you might benefit from a zero carb diet.

Anecdotally, zero carb seems to cure anxiety and depression.
See this video: Separating fact from fiction with Dr. Georgia Ede — Diet Doctor Podcast

So my suggestion is go from FODMaP -> low carb high fat (LCHF) -> carnivore -> lion.

I've been on carnivore diet now 12 months and lion(ish) diet now 7 months and my mental health has improved enormously, especially my mood in the last week. I might eventually reintroduce plants in very small amounts for flavor, but I will never go back to eating plant based. I still have some way to go. I've had ME/CFS for 27 years - it will take time to reverse that.

 

[Shanti1]

Things I use/do daily for energy:
-B1 in the form of allithiamine and cocarboxylated thiamine
-Oxymatrine
_valacyclovir
-Liquid turmeric capsule from Gaia Herbs
-Multivitamin
-Avoid wheat, sugar, food sensitivities, or too much of any grains.
-Strattera

I have to rotate some things or the effect wears off. Here is what I currently rotate for energy:
-One 1-2 400mcg nacent iodine drops 1-2x a week
-Methylene blue 2 drops twice a week
-Greg's B12 oil
-High dose selenium
-Modafanil (small dose once a week at most)
-Russian immune stimulant Cycloferon
Peptieds:
-GDF-11
-GHK-Cu
-Semax

Edit: Checked the iodine dose I use and corrected it