Extreme fatigue

[Emma74]

Does anyone have any tips for conquering extreme fatigue please? Today I ironed one shirt and hung some washing out, after that I couldn't move. I had no energy. Felt like I'd been run over. And this was all after a good night sleep (waking to see daughter before school) and then going back to sleep for a further 3 hours! Any advice greatly appreciated

 

[sunkacola]

Here's the thing. If you already have the fatigue I don't think there is anything that will make it go away that day.

But you can do a lot to prevent having the fatigue in the first place, or at least to make it much less frequent. You need to be diligent with this and not give up if you don't see results right away.

I found that when I worked with diet and exercise and my own mind-set to find what combination of things worked best for me, those days of extreme fatigue became less frequent. Still happens, and when it does you just have to submit to it and accept it; there's no way to "conquer" it.

Some supplements will help with this, but there's no way to know what will work for you without trying them. One thing that helps me is Acetyl L-Carnitine and the other is D-mannose.

In case you have not already done so, I recommend you read the following post for suggestions on how you can work with the whole body and your whole lifestyle to get healthier overall, which in turn will help a lot with the symptoms of fibro, especially fatigue. Any questions, just ask.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Emma74]

Thank you

 

[JayCS]

Hi Emma - one thing is the variation of fatigue according to what you do, that's what @sunkacola is mainly referring to. I now know exactly how to pace my body, limits, sweet spots, how far I can overdo things. I know I usually need 2h of rest after certain activities. I know how to do many activities without moving too much, I know how long and intensely I can increase movement on good days. And with know I also mean I do that - well, usually....
With fibro alone and recently again I sometimes have energy spurts of a few minutes where I can feel that my muscles are fine - I can then do 30 or more push-ups without getting sore muscles after.

There's another very important basic "fatigue" tho, the overall lack of body energy to do things. (I've distinguished 15 kinds of fatigue elsewhere.) This is what I feel your "extreme fatigue" sounds like. Praps you can compare.

Again this has absolutely nothing to do with my muscle strength. If at all it's a kind of endurance, but also not the kind that would get better if I did more: I don't need to do more.
I am as "fit" as I was before fibro, where it was possible for me to do 2 hours of sports a day - high speed gym workouts, cycling, table tennis. In the pool of my fibro clinic I was able to swim several stints of 20 yards under water.
This is about the energy and praps oxygen not being properly transported / transmitted or called up / retrieved, praps also brakes being put on it by a kind of inflammation or similar that hasn't yet been identified. I always thought my insomnia might be a major brake, but I now manage fairly restorative sleep, don't need long to be awake, am not tired in the daytime - but it only makes a bit of difference to my energy. ME/CFS doesn't fit, BTW.
There are quite a few possible pathways I've made out -

• ATP / mitochondria,
• neurotransmitters like serotonin (using GABA...) versus cortisol,
• oxygen either supplied externally or transmitted internally,
• inflammatory substances.

I've been going all these routes, lots of supps for all of them plus physio types geared to these and sleep...

This type of overall fatigue has become very conspicuous in my life after I've managed to get all other fibro- and MCAS-symptoms like pain down to about 10%. Because from fibro I had an overall energy of 35% of what I used to have - maximum on good days, and stable only due to hours of self-treatments every day. And the jabs triggering my MCAS took that down to 5-10%. That's not "days of" 35% or of 5%, it's every day, even pacing and 10+ supps for fatigue considered.
35% puts all activities incl. going to work into question as that means best stints of 1h, then a break, I managed 2x1h per day, only possible thru multiple accommodations there.
5% means no longer going to work, home office, mails I can do at length, phone calls short.

So I constantly support & promote all the above pathways and more and this used to increase my energy to 35% (probably from 10-15%) and now to 20-25% (definitely from 5-10%). Which is trebling it, to put it optimistically. Or pessimistically: still pretty debilitating for any physical activity. My glass is always half full.

So what do I do? Supps for all the above areas is something I've often listed. Lots of physical treatments I've tried, but cold therapy and Chinese acupuncture (for cortisol & more) and their combination are the most effective - without them I wouldn't be above 10% = 1 hour / day, Wim Hof breath-holding also helps, esp. when I need more oxygen, like at the moment.
I'm adding even more supps at the moment, increasing to about 35...

Of course we're all different, and will have different combinations of the 15 fatigue types I've identified to date. But maybe some of my ways may lead you to ideas of your own to try.

Answering this was as ever fun and helpful to me, so thank you for the question and sunkacola for your take on it. I think 100% of what I write on the forums helps me clarify my path and 70% is even more useful to me. Writing it reminded me to phone my cardio about my latest bloods to see if I need to up anything, especially B12 (I'd stopped my injections a while) and copper (for oxygen/energy).

 

[sunkacola]

Some supplements will help with this, but there's no way to know what will work for you without trying them. One thing that helps me is Acetyl L-Carnitine and the other is D-mannose.

I wrote the wrong thing here.
It is not D-Mannose. (which can be good for other things)
It is D-Ribose!

I am going to blame brain fog. Always a good thing to blame things on!

 

[Sabina]

Good catch - I was going to ask you if you meant D-Ribose! I also take it & it really helps.

 

[Sabina]

I was doing pretty well with my fatigue levels this summer but then I got a mild case of Covid. Following that I noticed my fatigue levels were worse than ever. One week I was in bed for 4 days straight. My doctor said it was long Covid & probably triggered my Epstein Barr virus & inflammation from my Fibromyalgia. He prescribed low dose Naltrexone & I’ve been much better since. I only take .5 mg per day. I work for a holistic doctor & we’ve seen great success with this med for many different issues.

Is it possible you have long Covid also?

 

[Forgetmenot]

Sometimes your cant do anything but rest.
I've had a rough 3 weeks with this.give me pain anyday over this tireness.
I think pacing yourself and not trying to do what you can't.it will only make you feel bad about what you couldn't get done.
You will learn how to ride these days out.and to work out what your body can do.
You have a child like me and the main thing is to save your energy for them.

 

[EzbG]

I got a mild case of Covid. Following that I noticed my fatigue levels were worse than ever. One week I was in bed for 4 days straight. My doctor said it was long Covid & probably triggered my Epstein Barr virus & inflammation from my Fibromyalgia.

I concur - I was doing okay with everything in Jan, until I got covid - nothing more than mild cold symptoms. When I didn’t get better, but got worse (fatigue wise), we found it was long covid. It was a FB meme from a friend that made us both face palm… the ultimate “Aha! moment”

 

[Zahnj]

Does anyone have any tips for conquering extreme fatigue please? Today I ironed one shirt and hung some washing out, after that I couldn't move. I had no energy. Felt like I'd been run over. And this was all after a good night sleep (waking to see daughter before school) and then going back to sleep for a further 3 hours! Any advice greatly appreciated

Hi Emma,

For me I had a sleep study done, and they found that I'm in the single digits for % of time in restorative sleep. So, basically I'm asleep, but too lightly to actually feel well rested.

I have a sleep aid and I see a sleep specialist to help with sleeping.

I also have GI issues, so if those are flared then I'm also going to have more daytime fatigue.

I also have a very low Vitamin D, so I take maximum dose of IUs to replenish.

I've also been to an Endocrinologist to rule out any other conditions.

I wore myself out completely at the onset of my Fibromyalgia, so I'm still recovering. And some days are flares or GI fatigue, and I take as much rest as I can those days.

I also found a lot of healthy smoothie recipes, so even though I'm really fatigued or my GI is acting up I make sure I eat and drink enough water.

Honestly, I was to the point where I could have slept whole days.

I haven't found anything truly miraculous, but putting these steps helps me on those fatigue days.

 

[JayCS]

I was going to ask you if you meant D-Ribose! I also take it & it really helps.

Of course I'm listening up to anything I've missed for "extreme fatigue", my main issue. D-ribose I've tried many a time, first it seemed to help, but caused some GI problems if more than 2g, then it never helped again. So I've never tried taking it for a few weeks like some recommend.

So I just thought thru it again and remembered that someone recently had said it's not a sugar like other sugars. Which'd be good, cos that'd be something I have to avoid. And I actually found that on draxe: It may even decrease blood sugars it says there. However the reference is to a site which I'd have to sign up for, consumerlab. But healthfully is clearer and cites a 2008 study by a Dr. Oz which showed that injected 10g ribose considerably reduced blood glucose in diabetes inside of 30-45 mins, but only for 1-2h. Well whatever, that does not make it a "good" sugar, rather a strange one. But Oz definitely does recommend it, starting with 3x0.5g/d for a week, then 3x5g/d for 3 weeks, and then staying on 2x5g/d.

But what about lipids? My main problem... Looked again, and sure enough: D-ribose increases triglyceride via upregulation of DGAT in the liver (2019 study). At least in rats. Other than that this hasn't been researched yet.

Looking for more recent studies that quote this one I also find one from 2020 D-ribose and pathogenesis of Alzheimer's disease saying: "Since, D-ribose shows highest glycation ability among other sugars hence, produces advanced glycation end products (AGEs) rapidly. However, there are several other mechanisms suggested by researchers through which D-ribose may cause cognitive impairments. There is a concern related to diabetic patients since they also suffer from D-ribose metabolism, may be more prone to AD [= Alzheimer Disease] risk."
Similarly this study from 2019 D-ribose is elevated in T1DM patients and can be involved in the onset of encephalopathy. (T1DM = type 1 diabetes mellitus) says that lowering that ribose helped in rats, so will thus be a possible help in people. Which takes us back to what I said above: It lowering glucose for a short while (probably by stimulating insulin production) doesn't have to be something good.

Now is diabetes relevant to me? My symptoms often remind my wife of diabetes.
Is dementia relevant to me? My dad "died of" it.
Is it increasing lipids dangerous for me? Highly.

So: No, ribose is not for me.

Even tho Teitelbaum did a study 2006 "The use of D-ribose in chronic fatigue syndrome and fibromyalgia: a pilot study" (no placebo control, not double-blinded etc.) "D-ribose significantly reduced clinical symptoms in patients suffering from fibromyalgia and chronic fatigue syndrome."

 

[cookiebaker]

For me I had a sleep study done, and they found that I'm in the single digits for % of time in restorative sleep. So, basically I'm asleep, but too lightly to actually feel well rested.

OMG, does this sound like what I am coping with...
I am afraid to have a sleep study done because of the predisposition here to jump on the sleep apnea wagon. I dont have sleep apnea.. I just cant get quality, restorative sleep.. mostly due to physical pain.

I also have GI issues, so if those are flared then I'm also going to have more daytime fatigue.

I also have a very low Vitamin D, so I take maximum dose of IUs to replenish.

yup, basically the same here as well...
dietary changes are helping with the GI issues, but still have a ways to go there...
Back in January, my Vit D was down to 8 ng/mL - low normal is 30 - had gotten it back up to 35 as of May... need to get it checked again.

But healthfully is clearer and cites a 2008 study by a Dr. Oz......

Oz has turned out to be quite the joke here in the states... not sure i would trust anything this guy had to say, medically, or otherwise.

 

[JayCS]

Oz has turned out to be quite the joke here in the states... not sure i would trust anything this guy had to say, medically, or otherwise.

Whoops, I can see very much what you mean. And it's not a different one, it's him alright.

But comparing I can see he gets his dosage recommendations from Jacob Teitelbaum, the one who did his study two years earlier on ribose helping fibro and CFS and has quite a stable reputation as a functional doc targeting our conditions. He's also appeared on the Dr. Oz show and similar ones, I hope that doesn't discredit him too much.... But that'll be where Oz got that from. Teitelbaum's talks and supp dosage recommendations come over credible to me, they were never much out of line with other recommendations.
To be on the safe side I've found another two more recent small studies from 2019 (exercise capacity) and 2020 (delayed onset muscle soreness ). The first with dosages of 2x2.5g for 2 weeks, then 1x2.5g for 4 weeks (together with a little B1 and B6), the second with 15g! in 200ml one hour before, then one hour after, 12 hours, 24 and 36 hours after exercise, both seeming to help.

 

[cookiebaker]

Whoops, I can see very much what you mean. And it's not a different one, it's him alright.

lol, yeah..

when he first hit the TV scene, he seemed pretty credible, but over time, that has kind of gone by the wayside..

Teitelbaum - not sure about him.. prolific author of books - about 17 listed since 1996 (several having multiple editions)... all claiming to be able to "cure" you of something..
Am i being too skeptical?? maybe. possibly... or maybe i am just a tad bit jaded with "doctors" like this..

 

[Zahnj]

OMG, does this sound like what I am coping with...
I am afraid to have a sleep study done because of the predisposition here to jump on the sleep apnea wagon. I dont have sleep apnea.. I just cant get quality, restorative sleep.. mostly due to physical pain.

Back in January, my Vit D was down to 8 ng/mL - low normal is 30 - had gotten it back up to 35 as of May... need to get it checked again.

I'm so grateful I found you all, because it's so comforting to know you aren't the only one.

Don't worry about the sleep study. They monitor heart, pulse, breathing, leg movements etc. So, you get a lot of good data. And even though I snore it wasn't at a diagnosed sleep apnea level. For me at least having that type of definitive feedback from a doctor was very reassuring.

I was even able to get an all female staff for me. I have PTSD and being knocked out on sleep meds in a strange place was a bit triggering. They were really great here.