My wife has CFS - was diagnosed at least 10 years ago - and it doesn't seem to be getting any better. Doctor's have been pretty useless in helping her. Only thing that helps is lots of sleep...

I was wondering, has anyone read or heard about a connection between CoQ10 depletion and CFS???? The reason I'm asking is that I had a problem with muscle pain, weakness , general tiredness and lack of stamina due to long-term statin usage (Lipitor). Statins deplete the level of CoQ10 in the body and tissues. CoQ10 levels also decrease as we age...

One thing that helped me was taking CoQ10 supplements. CoQ10 is vital to the proper functioning of the mitochondria and in energy production for the body....

The supplements helped me and I'm starting to get back to normal - it took about 10 months of stopping the statin and using the CoQ10 to notice a significant improvement - but I have a lot more energy now.

I'd like to see if CoQ10 would help my wife - but wanted to check to see if anyone on this board heard of it helping with CFS...

Bob

I must admit I've not heard of this, but a quick search on the net gave me the following from a website:

Coenzyme Q10
Coenzyme Q10 has long been prescribed for Chronic Fatigue Syndrome patients. CoQ10 is a potent antioxidant that aids in metabolic reactions including the process of forming ATP, the molecule the body uses for energy. Virtually every cell in the body contains CoQ10. It is concentrated in the mitochondria, the area of the cells where energy is produced.

Judy (1996) presented a study of 20 female patients with Chronic Fatigue Syndrome who required bed rest following mild exercise and 20 healthy controls: 80% of the Chronic Fatigue Syndrome patients were found to be deficient in CoQ10, which further decreased following mild exercise or over the course of normal daytime activity. After 3 months of CoQ10 supplementation (100 mg/day), the exercise tolerance (400 kg-meters of work) of the Chronic Fatigue Syndrome patients more than doubled. All patients had improved: 90% had reduction and/or disappearance of clinical symptoms, and 85% had decreased postexercise fatigue (Judy 1996).

Hope that's of some help! I'm off to see where I can get this stuff from - anything that has some potential to help is worth a look.

kiya

Hi MrBob

I haven't been diagnosed with CFS yet, or anything else for that matter... just getting pushed from pillar to post by the doctors and specialists for the moment. Grrrrrr!

HOWEVER, I had heard that Co-enzyme Q10 is supposed to really benefit sufferers! I have seen in the chemist stores that it is quite pricey stuff though, so haven't bought any as yet.
I'm curious if taking it has helped anyone on the boards too.

Good luck with you and yours, mrbob.

Oh, can't remember who advised me, but I have managed to get my doc to get my thyroid blood tests done. :)

Take care.

Has your wife been checked for mitochondrial disorders? Metabolic? carnitine deficiency?... found out through my kids' testing that I do not have "true" chronic fatigue- I have a mitochondrial disorder with secondary carnitine deficiency!
I take CoQ10, as well as the other ingredients in the "mito cocktail"- it is said to help some, not help some- but worth a shot.
ALA
B-50
Carnitine
Omega 3 fish oil
Cod Liver Oil
Cal/mag/zinc
Melatonin
Olive Leaf extract ( when my knees flare)
take care, C-GA

Hi MrBob

I haven't been diagnosed with CFS yet, or anything else for that matter... just getting pushed from pillar to post by the doctors and specialists for the moment. Grrrrrr!

HOWEVER, I had heard that Co-enzyme Q10 is supposed to really benefit sufferers! I have seen in the chemist stores that it is quite pricey stuff though, so haven't bought any as yet.
I'm curious if taking it has helped anyone on the boards too.

Good luck with you and yours, mrbob.

Oh, can't remember who advised me, but I have managed to get my doc to get my thyroid blood tests done. :)

Take care.

I was "diagnosed" with CFS after a normal blood screen (which obviously didn't test everything) so I'm still chasing a final diagnosis!

I bought CoQ10 yesterday - damn expensive (£24 for a box of 30! :eek: ) - I'm going to give it a few weeks to see how it goes.

As for thyroid tests - I'm waiting for my results to come through *fingers crossed* they come today.

Hi Bob & Kiya,

I take co enzyme Q10, but only 60mg a day, not sure whether it helps or not, but this is a small dose and people take alot more than this, like you say Kiya, though it is really expensive, how many mg are in the ones you have?

Chris

I'm taking 120mg tablets of CoQ10. There was an article by Dr. Teitelbaum which suggested taking between 100 and 200mg a day; and the trial I referenced in my first post in this thread suggested 100mg. I'm just going to see how it goes - hopefully I can reduce the dose down at some point as the 50mg tablets are under half the price.

Hi Kiya..

Yup CoQ10 is damn spensive stuff. I couldn't afford to buy that, even if I wanted, cos I lost my job through having so much time off sick. :rolleyes:

Let us know if it helps you at all though.

Did you get your thyroid test results back today?

My MAIN symptom is my throat. It's been killing me for 6 months now, constantly. Besides that, some days I feel ok... other days I ache all over and moving is hard work. I wish I could blame it on plain ol' laziness! lol

I WANNA BE ABLE TO DO THIS! ---->> :bouncing:

Hehe!

Keep on keepin' on.

Didn't get the results today - had to phone the place I ordered them from and they've posted them today, so hopefully should get them soon!!

I'll keep you all updated on how the tablets are working.

kiya

i have cfs and my dr told me to use co q-10 among other things. i take 100mg a day. i think i feel better when i do take it. yes, it is expensive. a tip, if you are a member at a costco or pj's etc. they are a bit cheaper there.
my dr told me to take the following when he dx'd me with cfs
good one a day vitamin
co q-10
evening primrose oil ( i use the caps)
vit b-complex + c
i also asked about magnesium, which he said yes, by all means go ahead and tak eit. i hear cfs'ers are low on mag. my dr said if you had a heart problem and went to a cardic dr, the first thing they would do is put you on mag. i don't know if this is true.
anyway, i have NOT taken my sup's in a long time, and i notice the difference. i feel weaker, no energy, internal trembling is back etc. so i have to get back on them.
hope this helps
karen

All,

Thanks so much for the feedback - it is appreciated.

My wife started taking the CoQ10 yesterday - 100mg/day. Yes, it is expensive, but if it helps, it's worth it.

I've been taking it for about 3 months for my muscle problem and it seems to be working. I also take it with L-Carnitine and an Omega-3 Fish Oil capsule - I've heard both help with absorption of the CoQ10...

By the way, CoQ10 is expensive. Don't mean to plug a site, but I get mine at [ please do not post commercial websites - use brand names only ] They often have sales that make it more affordable and their brand (QSorb) is approved by consumer labs. Here's a link to Consumer Labs that has a partial list of CoQ10 brands that contain what they claim on the label... Some brands only contain a fraction of the dosage on the label - so don't necessarily shop on price alone:

[ please do not post commercial websites - use brand names only ]

My wife was never tested for mitochondrial problems, but I suspect that if Epstein Barr (which she tested positive for) depletes CoQ10, that the supplements have to help somewhat. I told her to start taking it, and not to expect a quick reaction - could take months.

I'll post back to let you all know how she's doing.

Thanks again,

MrBOb

Oh, I tested positive for epstein barr- just what caused me to be susceptible was the mito , etc.

C-GA

I've taken two CoQ10 tablets (120mg) yesterday and the day before and remarkably my legs ache much less in the morning. Is this me having a crazy moment or are they really working already?!

Kiya,

I've never heard of it working quite that quickly - but I'd stay on it, and see how you feel over the next 3 months. If you feel consistently better, I'd say it's having a positive effect...

By the way...CoQ10 is better absorbed when you eat it with something that contains a little fat - I take it with a fish-oil tablet. It also works synergistically with L-Carnitine - I take 200mg CoQ10 daily (100 morning/ 100 dinner time) - and I take it with L-Carnitine (250mg - morning only) and a fish-oil capsule....

Get well soon....

MrBob

Ah, it's probably psychological then. It's just weird as every single day for the past 10 months I've woken up with severe muscle pain. And the past two days it's been significantly better.

I thought of trying L-Carnitine as well, but all these things cost money... I might consider it though at some point.

My test results will have come through today, but I'm at work until 6pm!! They'll be lying on the doormat all day! :rolleyes:

Kiya,

Don't automatically assume that the effect is psychological - stay on the CoQ10 for at least a couple of months and see what your results are...

Everyone reacts differently to drugs and supplements - you may have reacted quickly...

Did you change something else in the past 2 days (different medications, diet, exercise level...) that could explain the pain reduction?

I'd stay on the CoQ, and see if over the next few months you are more or less free of the pain, or experience a significant reduction in pain. That to me would indicate that CoQ is helping you.

If you want more proof, and you're feeling brave, you could then stop the CoQ temporarily and see if the pain comes back... If so, I'd say the CoQ10 is definitely a factor in your improvement.

Once you're relatively sure it's helping, you might throttle-back on the dosage anyhow to find the lowest (and least expensive) dose that keeps the pain in check...

MrBob

I'm still going to take the CoQ10 because you're right and also because it doesn't really matter whether it's psychological or not - so long as it works.

Got my test results back today. My TSH is now 3.3 - it was 2.17 in November! Didn't expect it to rise like that. And it's not really reflected in the fT3 and fT4. The doctor who authorized the tests says it suggests I'm mildly hypothyroid as it falls outside the normal range given by the British Thyroid Society. Hopefully now I'll get a referral to an endo rather than a gastroenterologist!

kiya

i am taking these co-enzyme q10 tablets, one a day -not making much difference so far :-(

but then again, what does with this illness :confused:

What strength? I'm currently taking 120mg in the morning and 75mg at lunchtime.

I've found that it doesn't help with the general fatigue or with the brain fog, but I don't feel exhausted and have pains/aches in my legs when I wake up or climb the stairs anymore. It makes all my limbs feel... hmm... energetic, I guess.

And urgh! CFS is classified under neurasthenia in the Read code system (used by GPs). When will science stop treating patients with CFS as headcases?! Makes me so mad.