So sick of having no energy. I'm new to the forum, just looking for support bc i feel so alone and feel like no one gets it

vheart

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Sep 19, 2022
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Hi! I'm new to the forum.. just looking for support. I'm so sick of having no energy, sleeping constantly and still no energy... on top of that, my pain is terrible everyday... worse some days. Any suggestions to help get me out of this funk would greatly be appreciated!!
 

cookiebaker

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Hi @vheart , and welcome! You have definitely come to the right place cause pretty much all of us here "get it" and you are NOT alone!

I am going to suggest that you start with Sunkacola's post for managing fibro (especially newcomers) - there is some fantastic information in it to get you started down the path to managing symptoms.
 

sunkacola

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Hello vherart and welcome to the forum.
You have found a place where almost every one of us understands what you are saying.

Just yesterday I was feeing annoyed and I said out loud (though no one but my animals heard) "I am sick and tired of this! I am tired of being fatigued and tired of hurting and tired of feeling nauseous and tired of the weird thing my left toe does!"

My point being it's OK to vent.

AND......there are many things you can do to make this better and to manage it to the best of your ability. Cookiebaker linked to my post of advice, and if you go there you will find a bunch of info and suggestions for things you can start doing now that will probably have positive effect in your life. Will it "cure" you? nope. Will it be instant gratification? Nope. But incrementally you can feel better. I know because I have done it and so have others here.

Once y ou start taking positive action to manage your fibromyalgia, you will feel better just by the fact that you are not allowing yourself to be a victim to the disorder.

And come here any time for advice, empathy, to vent, to ask questions. We are here to support you.
 

Redbird88J

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Oct 20, 2022
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21
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DX CFS
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08/2021
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SE
Hey vheart, I am also new here. I am also, so very sick of feeling like this. The fatigue is so overwhelming at times, more then the daily dose and I just want to scream. The worst thing is, the energy to scream is not worth it.
 

sunkacola

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Greetings Redbird, and welcome to the forum.
Please be sure to read this post, which may offer you some helpful suggestions.
 

Redbird88J

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Oct 20, 2022
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DX CFS
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08/2021
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Thank you and I have read that post already. Prompted me to buy Q10 and other supplements I had not tried before. Just waiting for them to arrive shortly.
 

Redbird88J

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DX CFS
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Hehe, that prompted me to check where you're from, as we in Germany also say Q10 instead of CoQ10 like is usual in US & UK! 😜
I had to do my research into figuring out if the Q10 here would be the same as the CoQ10.
Thankfully the elaborate the different ones and I should be getting CoQ10 Thursday, though it is labeled Q10.

Have you managed to find it in Germany?
 

JayCS

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I had to do my research into figuring out if the Q10 here would be the same as the CoQ10.
Thankfully the elaborate the different ones and I should be getting CoQ10 Thursday, though it is labeled Q10.
Have you managed to find it in Germany?
(Co)Q10 Is actually one of the most common supplements in Germany as well as internationally, so I can get >50 different products via my online pharmacies, which made finding the best ones the challenge (the cheapest purest one, working out the price per g).
They are 2 terms for set of identical substances, so CoQ10 = Q10, the label doesn't matter.

The other big challenge is deciding on one of the two basic forms of it: ubiquinone (ubichinone) vs. ubiquinol (ubichinol).
On first reading, ubiquinol seems more bioavailable, but a bit more expensive.
However it's newer, so almost all the medical studies have only been done with ubiquinone, one of the reasons that's made me return to that.
Dosing: I found experiences taking the 10-fold dose on one forum. Once really out of energy I tried that a few times and it did absolutely nothing for me.
And on the other hand, for my specific lipids, studies have shown it's good to keep under 150mg, so I keep to 100mg, as more doesn't increase my energy anyway... (It's good for most fibromyalgia/CFS symptom areas, but also for my lipids.)

Since "quick exhaustibility" as I best describe my "fatigue" is actually my main remaining symptom I'm working a lot on this, mainly via videos and webinars. The other day an MCAS webinar had Evan Hirsch on "Fix Your Fatigue" (ordered his book), as well as Robert Murphree, who is a fibro specialist (got his book, haven't had time for it yet). And today I took part in a webinar by the RSM (UK) "for medical professionals", most of which wasn't new to me, but as ever every morsel of information that I don't yet know might be another part of the puzzle - and there were 2 very interesting "morsels" today, and a lot related to the @vheart's OP.
The talks were Understanding fatigue, Fatigue and inflammatory conditions, Living well with fatigue: Occupational therapy, Sleep disorders and fatigue by Dr Hugh Selsick.
From my notes most interesting to me was that
  • the experts do realize what I've been saying all the time that there are many many different variations of fatigue (I've distinguished 15 so far, see a post about that somewhere, of which I have about 10...),
  • often lower cortisol in women (whilst my own problem - as a man - is more too high cortisol (and histamine from MCAS) at night, so Chinese acupuncture is increasing cortisol and thus some energy, but at the same time also insomnia, so I have to concentrate all night on getting the 9.5h I need.)
  • ACT and mindfulness CBT help us see our beliefs as beliefs, rather than changing them. CBT is better than counselling in CFS, but generally for all fatigue over all the many chronic conditions (so many were mentioned!) both interventions improved by 47% (both exactly??) of those who took part. CBT also important and helpful for sleep problems. (I do all that already.)
  • Keep out of bed if you're not sleeping! (What I've been saying all along and definitely practice, unless I decide I need to do Yoga Nidra to get restored, which is non-sleep deep rest and as such even better than shallow sleep)
  • The connection with Inflammation seemed not too important to me, turned out different though: promising research on exercise, neurobiology, neuroimaging, TMS, and more so: the role of cytokines and vagal nerve stimulation (interesting for @miamisunset) in decreasing not only inflammation but also fatigue. (Both are things I do something about already.)
  • Selsick: During the day the brain is breaking up ATP down for energy, using phosphate, and adenosine starts making sleepy. Adenosine is the chemical substrate for the homeostatic sleep drive (vs. circadian rhythm). A small portion of people can be alert and sleepy at the same time (that'd be me). Or have fatigue without sleepiness (me, depending on amount of sleep I get). Also possible hyperkinetic: sleepy without fatigue, esp. kids (me too). "Part brain sleepiness", pre-frontal cortex decides what’s important (that explains the ambivalence of the various kinds in me). Melatonin 6h before last sleeping time (e.g. 10pm if sleep was 4am, etc.) pulls sleeping start forward bit by bit. Only helpful for people finding it hard to get to sleep, not insomniacs with difficulty staying asleep. (explains why it doesn't help me: just makes me more tired, not stop my sleep breaks.) Melatonin seems controversial (Huberman says don't), whilst all my 3 latest talks on sleep agreed looking to the sun several times a day, esp. as early as possible, helps improve our circadian clock.
My homework is now: adenosine as the sleep making bit of ATP, after having seen that my phosphate, the energy bit of it, is deficient. If it were only that and not also stuff like cortisol, histamine and serotonin, then it'd mean I could do with more ATP for more adenosine for sleep AND more phosphate for energy. However directly supplementing ATP hasn't worked so far, there's no evidence for it to do so either.

In case anyone's interested in my current supps for energy and sleep:
Energy: ALA, B12, carnitine, ginkgo, mag glycinate and malate, PQQ, (Co)Q10, SAM-e, luteolin, alpha GPC, huperzia, glutathione, eleuthero. No longer: mumijo, NAC, NADH, ribose, selenium, ATP. Next: L.DNaltr.exone, creatine, praps ATP again.
Sleep: B12, GABA, glutamine, mag malate & threonate, passiflora, PQQ, (Co)Q10, Quercetin, rhodiola, luteolin, honokiol, apigenin, myo-isonitol, plus: looking to the sun several times per day, Yoga Nidra, cold (or warm) showers if necessary etc.
N
o longer B6, NAC, serrapeptase, theanine (mornings, wakes me up), next: LD.Nal.trexone I think will wake me rather than make me sleepy.

I've got my energy back up pretty stably from 15% to 25% for 4 days now, and 4 reasons may be: 1) Chinese acupuncture session #31, 2) more phosphate with less phytic acid in food, 3) a hyperdose of B12 (5mg s.c.) and 4) managing to get my sleep back up to 9.5h, 7-8h of that deep. I'm sure from past experience that 1+4 are contributing. B12 would be surprising and I'm still phosphate deficient, so not sure about 2+3.
 
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JamieMarc

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Nov 17, 2021
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You are not alone, and we get it even if nobody around you does. Super big hugs for you!
 

Redbird88J

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08/2021
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I am going to have to break it down to read it, as I can only handle small pieces of information.
But thank you for being to thorough in explaining everything.

The book The Ghost in my Brain - Clark Elliot helped me a lot in voicing my symptoms.
 

JayCS

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I am going to have to break it down to read it, as I can only handle small pieces of information.
Sorry, I get carried away... ¯\_(ツ)_/¯

Praps it's fairer if I break above post down myself to the bottom lines:

CoQ10
  1. Q10 = CoQ10.
  2. Trying more bioavailable forms of it may be a waste until these are proven to actually work.
  3. Hyperdosing it may 'boost' some, but it's highly unlikely.
  4. It's good for energy and sleep - actually for "everything": also alertness, pain, inflammation, antioxidant and CVD....
  5. There are about 20 supps each (or more) good for fatigue and for sleep, so don't give up or think you've "tried everything".
  6. Plus: In case of rare side effects like heartburn and nausea divide the dose up (not in post above...)
Good for fatigue are:
  1. CBT and ACT therapy.
  2. Cytokines (e.g. via cold therapy).
  3. Vagal nerve stimulation (e.g. youtube videos).
  4. Phosphate-rich foods (for more ATP).
  5. Sleep:
a. Keep out of bed if you're not sleeping. Edit: And the bedroom!
b. Energy and sleep are connected via ATP.​
c. Sleepiness can be independent of physical and/or mental fatigue.​
d. Melatonin can only help getting to sleep, not staying asleep.​
e. Try taking melatonin 4-6h before the actual sleeping time of the "night" before.​
f. Looking to the sun as early as possible improves our circadian rhythm.
 
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Redbird88J

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Oct 20, 2022
Messages
21
Reason
DX CFS
Diagnosis
08/2021
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SE
I am starting with Q10 tomorrow, can not wait.

CBT therapy is not helping.
And ACT therapy, I do not even want to start on that.

What you say about sleep I get all of that.
I do not like my bed, only for sleeping at night.
Melatonin has side effects, for me.
I live above the polar circle, sun light is going away quickly. Like an hour less each week now until 21st of December.
Light therapy is only proven successful in seasonal affective disorder, which I do not have.

I have damage to my vagal nerve from Bells Palsy 8 years ago. Aggrevaiting it with touch is highly unwanted.

Phosphate rich food are also less of an option as they are quite expensive and less available up here.
I will stick to my Cola ;).
 

JayCS

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Hope Q10 does help - I've never felt much difference to be honest... but definitely enough to keep it in together with the rest.

CBT: Maybe wrong point in time, or wrong therapist? I've done it a lot pre-fibro, but I already do "it all". Still the 4th therapist (actually one I'd consulted pre-fibro) did help sorting small daily things out. Now I'm starting an ACT online course, altho I already do that "all" too, just cos I'm curious if there's anything else I can learn about active acceptance.

Yup, melatonin zombifies me, and doesn't help at all, like several others.

Receding sun is something they are of course aware of... Best workaround is apparently using good "daylight" lamps etc. from above early on and in the daytime, and putting lights on "night shift mode" in the late afternoon, probably something you do anyway "at" the polar circle. However this has absolutely nothing to do with any kind of light therapy, e.g. for seasonal affective disorder. It's apparently now been found in many studies that it resets our sleep rhythm if our eyes get blue light early on and redder light late. Not really working for me, but it's not harming (and I like the idea, not bad for my D3-deficiency and emotions either).

Apart from touch, there are many other ways to help the vagal nerve mentioned in youtube videos - would these help or harm you?:
Like a TENS unit (electrical stimulation seems to be one therapy form for Bell's Palsy?), a cold wet washcloth on the forehead, humming "Om" for a vocal chord stimulation, gargling with warm water etc.
or another other one called "6 Easy Vagus Nerve Resets" is similar: 1) Deep belly breathing, 2) Humming, 3) Deep Belly Laughing, 4) Gargling with water, this time cold... 5) Massaging Sides of Neck 6) Prayer
I have (had) trigeminal problems, so I can imagine it's a thin line or nothing can help.

For phosphate some of the best foods are: mozzarella & hard cheese, soaking pumpkin seeds and almonds - expensive & n/a?
Cola - with fizz, and sugar or sweetener? - Would kill me! :eek: But you're right - people eating processed = unhealthy foods have phosphates in everything and won't be deficient. 😜 Mine obviously came up from eating "too healthy" :rolleyes:.
Definitely not then necessary to increase phosphate intake, most people have too much. Unfortunately I can't edit the above post, cos that one then is definitely wrong, sorry, that's what can happen summarizing complicated matters...

So altogether all of these doubts/caveats of yours resonate completely with me.
They of course aren't things from my experience, they are just things I've learnt will help quite a lot of people, and wanted to share.
For me personally my supps seem to help fatigue/energy a little bit and sleep quite a lot (compared...).
But it's only the balance of Chinese acupuncture and doing 100s of things to get my sleep deeper and longer that make or breaks me - yesterday energy halved mainly cos of 1.5h sleep less (than the 9.5h I now need) the night before.... :rolleyes: - sleep has become such hard work. 🪓
 
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