About acety-l-carnitine and other supplements ...

LuisC

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Hi everyone,

I heard that acety-l-carnitive, low doses of naltrexone and other supplements could help with fibro.
I'd like to hear your opinion about that. Thanks in advance
 

sunkacola

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Jemima can give you more information than I can on this. But I am taking acetyl l-carnitine daily now. My chiropractor suggested it when I told him that I consistently had massive energy drops around 3 or 4 PM, becoming deeply fatigued no matter what or how much I had eaten. He said it would improve mitochondrial functioning. I can say that it has helped tremendously with that particular issue.

I have not found a supplement that helps with pain yet. I do use medical cannabis, which helps with certain kinds of pain although not with all kinds.
 

Jemima

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Hi everyone,

I heard that acety-l-carnitive, low doses of naltrexone and other supplements could help with fibro.
I'd like to hear your opinion about that. Thanks in advance
Hi LuisC,

I can't comment on LDN because I haven't tried it, but I do take quite a few supplements.

I found a few things that help me with mental clarity/energy/ditching the fog, which are acetyl l-carnitine, CoQ10, and alpha lipoic acid. Magnesium glycinate helps me a lot with insomnia/anxiety/depression, and I also take low-dose lithium orotate for depression which is a pretty big challenge among my fibro symptoms. Finally, I find that boswellia helps me with joint pain and a general feeling of inflammation throughout my body.

Just like Sunkacola, I'm yet to find anything that does a great deal for more extreme pain, but for me the psychological aspects of fibro are much more disruptive than anything else!

If you use the search function here in the forum, you should be able to find lots of previous conversations about all sorts of supplements and LDN. We all seem to have pretty different experiences, and find different things useful or not. Good luck if you decide to experiment!
 

sunkacola

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That's fantastic, Sunkacola - I'm so happy it helped!
Well, it seems to have. I have been taking it daily for about 6 weeks now and have only had three episodes of energy crashing, each of which I realized happened on days when I had not taken the dose. However, I have forgotten the dose on other days as well and not had a crash. Scientifically I don't have any proof that it is working. But to go from having the crash every day to having three in 6 weeks is enough for me to keep taking it! :)

I am now taking another supplement that my chiropractor sold to me, which he says will help with my painful and clumsy hands. I have only had it a week so I don't know yet if it will help.
 

Jemima

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Fingers and toes crossed for you 🤞🤞🤞
 

DebMarPir

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I read a study that indicated l-carnitine helped and while I don't recall the study size, thought, it can't hurt. So I added it in. Because I already take a lot of pills, I am taking gummies, also vitamin D (I am low), potassium (low), calcium (menopausal), zinc (can't hurt), CoQ10 because the doctor said so, I forget how it helps my meds, but for depression I have taken Effexor some time. And yes, it does help, and I take the max dose. My magnesium isn't low so I haven't taken it this year, but I was getting cramps last year and tried it - before all the weirdness of this year erupted and getting a fibro diagnosis. I can't tell if the l-carnitine helps or not, but in general I am feeling better, but also on gabapentin and other meds. Having said that, I had a flare yesterday and today...but then it's the holiday?
 

Jemima

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I can't tell if the l-carnitine helps or not
Super quick note on this one. Only the acetyl form of l-carnatine can penetrate the blood brain barrier. So. (as far as I understand it!) while other forms of l-carnatine might improve cellular energy production in the rest of the body, you won't experience the potential mental boost.

I seem to flare in the holidays too - SO annoying!! I hope you feel better soon ⭐
 

JayCS

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acety-l-carnitine, low doses of naltrexone and other supplements could help with fibro.
Yes, these and about 20 more might. I had no success with the normal vitamins & minerals last year, altho I used a protocol from a functional doc for FM/CFS several times. And I've never been a supp nut. But supps off the beaten track are improving my quality of life lots, so...
For LDN you'll probably need to find a doc that'll prescribe it, haven't found one yet, and often a pharmacy that'll compound it.
One workaround'd be if you could get naltrexone (prescribed) (= 50mg tablets), also not easy, and make "4.5mg" capsules from it yourself.
But I've also read a lot of bad experiences with it, for some it seems a miracle, for others a curse.
supplement that helps with pain
anything that does a great deal for more extreme pain
Whilst expert physio / acupressure / trigger pointing etc. has been and is still getting all single pains down all over and I use arnica cream in the meantime if something comes up again, pain supps seem to help more with the overall ache and post exertional malaise than these: GABA, magnesium malate, mumijo, NAC, NADH, omega 3 (fish oil or microalgae), CoQ10, SAM-e and serrapeptase all have a bit of scientific evidence. Of these I really notice most difference from GABA, I think NAC, and (30' before/2h after meals, like mumijo) often NADH (B3-co-enzyme) and sometimes serrapeptase, both off and on tho.
We all seem to have pretty different experiences, and find different things useful or not.
There is quite some evidence for them, enough to warrant trying them all. But it's a matter (like said) of what our main problems are and what we can afford (I've yet to sum up what I'm spending this month as I'm taking 30 to try to save a tooth and get my lipids down).
Scientifically I don't have any proof that it is working.
I read a study that indicated l-carnitine helped and while I don't recall the study size, thought, it can't hurt
So. (as far as I understand it!) while other forms of l-carnatine might improve cellular energy production in the rest of the body, you won't experience the potential mental boost.
The (few) studies showing effectivity of it - as well as of L-carnitine and PLC (propionylcarnitine) - seem fairly well constructed. They found out they are much less effective if you take 2 sorts at the same time. After I found ALC quite OK for getting awake in the morning, I've now switched to LC for body energy, as I need that more than mental energy. But I'm not that satisfied yet (esp. as the LC powder 'burnt' my esophagus so it blocked daily for 2 weeks, so I've had to fill it into capsules, now OK again). The best form of LC is tartrate, not HCl (e.g. "Carnipure"). (PLC is impossible to get.) For waking up theanine helps me, and I'm not taking that at night any more, altho that like GABA and NAC are said to help sleep/relaxation and waking/energy (which they strangely somehow all 3 seem to do).
Usual dose of ALC is 3(-4)x0.5g/d. Teitelbaum recommends taking it for 3 months, then reduce to 1x0.25-0.5g or even to zero. (His selection or dosages don't generally fit for me, but his caveats are helpful). For no sfx keep ALC < 3g.
vitamin D (I am low), potassium (low), calcium (menopausal), zinc (can't hurt), CoQ10 because the doctor said so,
Good idea to get bloods checked thoroughly once and even if they're OK regularly every 2 years.
Mine are mostly perfect, vitamin D and B12 on the low side, potassium high, zinc medium.
For Vitamin B12 it's best not to use the common cheap form cyano-cobalamin, instead the other 3, and best s.c. (injected under skin).
For D3 I've been taking 1x 20,000 I.E. per week, but it's still under average, it's best to get it with vit. K2 (best the MK7 form).
Potassium and actually also zinc can hurt if you overdose, so check levels first; D3 praps, B12 can't, it's just shed (it rockets from my 5mg injections).
Low D3 & B12 can cause pain, but getting it high doesn't ever improve that for me - still good to increase it tho.
CoQ10 is the only one of these that might specifically help "FM itself", whilst D3 & B12 is more to check if it's that that's adding to it.
 
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