CoQ10-ergy! Still hoping!

Well, it's been over a week now that I've been trying the CoQ10 and stopped the statins. Time for another quick catch-up!

The pitch has been queered a bit this week as I developed a cold which forced up my blood sugars and left me achey and feverish.

However, the cold has dried up very quickly (by my own horribly low standards of recovery speed!). My throat is  quite sore, still, which is either from the cold, or maybe the typical M.E.-type of razor-bladey throat.

My Mum was over at the weekend as usual to help with domestic stuff. The weather was so beautiful last weekend here in northern England. Warm temperatures up in the 60s, sunshine getting everyone out in the gardens. Mum,  bless her, gave my back lawn its first taste of the lawnmower this season, while I pottered, sitting down on a chair most of the time, to do a spot of pruning. 

I managed well enough, with frequent rests and naps to keep me going, but considering I had a virus this week too, I'm really pleased to have achieved as much as we did.

I've had plenty of "payback" from that activity since then, in the first three days of this week. (The sun's taken its hat back off and the temperature has plummeted!) But on the whole, since stopping the statins and taking the CoQ10, my head has felt "clearer" and I've been able to wake earlier and felt more alert, I think. 

My current dose is about 100mg CoQ10 a day, taken in the morning. This means taking 10 capsules of 10mg, from a bottle of just 100! As you can guess, this is rapidly diminishing the stock of pills. But I have some more on order, the cheapest I could find online from a company doing a BOGOF (buy one get one free) deal. The new tabs will be a higher dose of 100mg each, and I'm getting 30 capsules with 30 extra free for £14.99 from a company called "Simply Supplements" at 

www.simplysupplements.net

I did some comparison of the prices per mg of more than a dozen brands and this was the cheapest I found online. However, after clicking send, I realised I hadn't compared the unit price of the Holland and Barrett original purchase from a branch in town. This actually proved the cheapest (about 10p per mg compared to 24p per mg). One online pharmacy was actually charging 99p per mg, while most seemed to be about the 50p mark. This is frankly unaffordable longterm, but if I am convinced of their good effects, as I said before, I can just keep them in reserve for days of particular energy need.

The original Enada Nadh has quickly run out, and as it has a very similar function to the related coenzyme, I am persisting with the readily available  CoQ10 alone. Mainly because it is well documented in the M.E. community and also among the statin takers of the world, of whose number I'm a member on both counts!

I've slept quite well, most nights, and the main difference is a clearer (if not totally clear!) head. I still struggle for words and co-ordination when I'm getting tired etc, but onward and upward! I don't think I'm as itchy as I was prior to stopping the Simvastatin. A patch on my left shoulder blade has calmed down a little.

Sadly, the online delivery from Simply Supplements was promised for the following day if ordered before 6.  I ordered on Sunday evening and even allowing for the weekend etc, it's now Wednesday! Still, I'm not quite out of the original stock yet, so if they come soon, I'll be able to go seamlessly onto the 100mg capsules by the end of the week, in the build up to Easter with its extra energy challenges!

As ever, watch this space!

Running out of spoons! Welcome to the energy juggling circus!

How 's it going today, flower? You DO look well!

Had a better night last night and slept through most of it. Which was nice. And refreshing!


Woke early with the Song thrush (I nearly just wrote "thrush" but that would have been a different problem altogether!) and the sunshine. No statins again last night. Supposed to be collecting a repeat prescription for more statins (along with loads of other meds) this afternoon, but not planning on actually taking any more Simvastatin any time soon.


Head felt clearer today, compared to often. Very clear, for me, which is delightful! That could be no more than a "good" day, I suppose, but it's always a great feeling, and I survive on balanced optimism!

Aches and pains at a minimum, which isn't that often the case. Took my 15mg Enada NADH with water about half an hour before breakfast. Blood sugars a bit up this morning 13.2 mm/ol, nothing unusual, but nowhere near perfect. Somogyi Effect or Dawn Phenomenon? Whatever! That's not my concern in this study.


Took 50mg CoQ10 with brekkie. Had a small spoonful of olive oil to swig it down with. Yes - it sounds disgusting but my breakfast was only fruit so didn't contain the right accompanying fats today, and I don't have the capsules that come with Vitamin E (an oil). Something to think about if I can afford to buy another lot after this.


Decided after breakfast chores, feeding the birds, catching up with emails etc, walking slowly round the sunny garden to take a few photos for my blog, that I'd better test this energy out properly.

As ever, it's all I can do to keep on top of jobs around the house and garden, even on the better days, so my first stop was cleaning the downstairs and upstairs loos which I managed perfectly well. (Oooh! Doesn't she look WELL? Yes, dear. *rolls eyes*).

Then I decided I'd take the dustpan and brush to clean up any obvious major fluff etc ready for a proper hoover through later or, if need be, another day. I started with great enthusiasm (as always!) downstairs and then it was time for the stairs, landing and bathroom. I managed all and felt pleased as I was finishing the bathroom carpet. So far so good.

 I went downstairs. This is a good day indeed, I thought. Then I began to make a drink. For the energy-bankrupt among us, drinks don't make themselves. There's reaching for a mug, walking across to the sink, cupboard, bin, drawers, pushing plugs, filling kettle, lifting said kettle, spoon, mug, balancing, pouring, stirring, turning, negotiating worktop edges. 

Sounds crazy, I know, but no wonder we're sometimes too tired to drink or eat what we prepare. 
And that's just for one!

 If there's a mate or mates with you, that involves talking, listening, understanding, showing caring by processing what you are hearing, co-ordinating jokes or replies if you actually want to show the real you inside this awkward mess, through the crash of cups and hiss of steam as your wrists buckle and you try not to misjudge the distance to your mouth or forget your train of thought!

All this costs units of energy for each part of a task. We start with a limited number of "spoons" as one clever lass explained it to her friend (bless you, Christine Miserandino at butyoudontlooksick.com!) Go look at her wonderful explanation of what it's really like to live with illnesses where you have limited energy for seemingly trivial tasks that others take for granted, here:

The Spoon Theory by Christine Miserandino 

It's such a great explanation of diseases like Lupus, M.E., CFS, M.S., Parkinson's Disease, Huntington's Disease, Hashimoto's Thyroiditis, Fibromyalgia, Gulf War Syndrome and so many other "invisible illnesses" which mean energy can't be taken for granted any more. Out of sight "invisible" doesn't ever mean out of mind, for those who live with them (even less out OF our minds!) Well, not more crazy than we were before, anyway!

As I picked up the coffee mug, I could feel the world slowly (not very slowly!) collapsing into painful slo-mo round me. No. Not hypoglycaemic. Just M.E.'s "post-exertion malaise", that hits like a sledgehammer at any time after exercise. That's why graded exercise is often counterproductive when administered to people with ME/CFS by therapists with no imagination or real experience of such conditions. The after effects of exercise are just that. After. Not when you see us "well" (haha!) doing it. Any time from a few minutes, to a couple of hours or quite often, the next day. Even when the "exercise" seems minimal. I wasn't exactly dancing as I brushed!


My hands, knees and back felt, if it doesn't sound too ludicrous, nauseous. So did I. My ears were ringing like an express train was going through a station inside my head. My temperature began to rise (no, I don't mean a bit of a hot flush!) and I was starting to get unsteady. My vision was starting to be blurred. My head was banging and my muscles felt as if they were turning to water. Water and fire and fog. My stomach felt so raw from the weak core muscles in my torso. My throat was getting sore and dry and my neck glands tender. Painfully tender.


I lay down for a minute or two (I wish it was that short!) to recoup my energy to begin again. But for the rest of the day I've not been able to. I managed to boil a kettle for soup, but wasn't even up to cooking, let alone eating much for lunch. Certainly nothing involving a series of complex "spoon" wasting processes!

Still, taken as a glass half full, that's a big achievement for me. I always think "what if somebody visits today without giving me a day or two to prepare?" I love visitors, even if my M.E. raddled body sometimes pays after they've left, unbeknown to them. I wouldn't want to be a recluse completely,  just to save the energy it takes to love your friends and be loved by them. (That's usually a very small and self-selecting group of true friends, as anyone who hasn't been able to have the common decency to be 100% fit again within the fortnight will know only too well!)

Folks are very kind in "not noticing" a layer of dust or a stray pair of knickers down the back of the radiator, but I know. I'd sooner be prepared so I can at least keep what energy I've got to help my guest have a laugh and to enjoy each other's company, not be secretly whittling whether I've had the energy/warning to check the milk's not gone off!



Not out of the woods with the M.E., yet, then, but I'm still thinking that stopping the statins may well maximise my chances of keeping a clear head, a more normalised sleep pattern and hopefully no extra muscle pain from the CoQ10 deficiency. If so, and the statins are hindering not helping, triggering even worse troubles, how can the medical establishment justify not warning people with diagnosed diseases of the central nervous system that they should either

(a) avoid statins or

(b) take hefty CoQ10 suppplements to redress the loss?


I certainly shall be!  I'm determined to be  fighting in the future to help make others more aware of these matters so we can all make informed choices about our own body's particular needs, and support one another with humour and hope.


I hope as my body starts to get statin-free and my CoQ10 built up a bit more, my cells will be increasingly able to make a better shot at sparking their own energy, as they have in the past after periods of severe illness.

Sooner rather than later, preferably!

Sleeping Beauty. Well, sleeping, anyway!

Q10 joins the party!

Too ill to venture into town today. That would have been two bumpy bus rides too many. Not to mention all the mixed blocks of effort in between. Yesterday was worth it, though. I just can't do stuff back-to-back at the moment.


The kind person who went into town to run a couple of errands for me, brought back another related supplement from Holland and Barrett. The very helpful staff in our Rotherham branch explained that they didn't stock Enada NADH Coenzyme B3. It might be snappier to call it Niacin, for those who remember "O" level science classes? They aren't exactly the same, but very closely related in function within the human body, as I understand it. Enada was only available from their larger branch in Sheffield. But they do stock the other Coenzyme supplement Q10 so familiar to M.E./CFS patients, if only through online discussions, so I am adding this into my trial.

Q10 has been recommended for replacing the deficit in the body's naturally occuring Q10 in those taking statins. I have taken Simvastatin, a common cholesterol-busting statin prescribed in the UK, since just before my major M.E. relapse/crash in the autumn of 2005. Guilty of hastening my collapse? Or was it that flu jab again? Your guess is as good as mine.

Statins are known to inhibit and deplete vital Q10 in the body. Many M.E. patients have also been found to have a measurable Q10 deficiency. Some research has indicated that this Q10 deficiency may be causing some of our symptoms, such as profound and disabling fatigue, plus a raft of autonomic and neurocognitive symptoms. Q10 deficiency may also explain why for some severely affected M.E. patients the condition can eventually lead to heart failure at a younger than expected age.


I had heard about the link between Q10 deficiency and M.E./CFS even before I heard about NADH-Q Coenzyme of B3. Both function in a similar way within the body. Q10 is a kind of nutrient which helps to metabolise ATP in the mitochondrial cells, also acting as an antioxidant, mopping up dangerous "free radicals". So both the Enada and the Q10 are complemantary coenzymes that give a boost of energy where the body is unable, because of mitochondrial damage from diseases such as M.E., to do this without outside intervention. This is similar to the way I must inject artificially produced insulin to compensate for the hormone insulin that the "islets of Langerhans" inside my own pancreas have refused to produce naturally since at least 1984!

Since Coenzyme Q10 has found its way into mainstream pharmacies, it has been touted as the "miracle nutrient" and the "miracle antioxident". From its healing properties it has also been heralded as a treatment in Alzheimer's Disease, heart disease, cancer, immune diseases like HIV, AIDS-related complex and Hepatitis B. It is also believed to help the body fight such neurodegenerative diseases as Parkinson's Disease, Huntingdon's Disease and Friedreich's Ataxia. Gum disease, wrinkles and the whole ageing process have also come into the sphere of its influence since its discovery!

If this is all not entirely due to clever marketing techniques, it has to be worth at least a try, alongside the "pacing" through which I survive day to day! I don't consider myself especially gullible, but I'm open to what can't harm me, and might just prove useful in inching my way back to some semblance of health and fuller functioning!


The recommended dose of Coenzyme Q10 varies between 100-400mg for people with M.E., and overdose is simply impossible at such levels. Considering the tub I have just acquired at 'Holland and Barrett' cost £10.29 for 100 10mg capsules, overdose would be out of my price range, too! Ten days at just 100mg a day would see the kiddie-proof bottle empty!

The Enada NADH is best taken in the morning on an empty stomach with water, perhaps half an hour before a meal. The Q10, on the other hand, prefers to be washed down through the day, accompanied by something...erm...oily. That's a meal containing Omega-3 fatty acid type foods that are staples for me anyway. For example, fish like mackerel or failing that, a spoonful of olive oil. One of the easiest ways of getting the combined oil fix, is to take it with Vitamin E, which acts on the metabolism in the same way as an oil.


Sadly, as some of these medicines and supplements take at least a couple of weeks to have noticeable effect, my plan to stockpile such resources for days when I have extra energy needs, or greater M.E. challenges from within, may prove less than effective. I can only try.


The itching, burning and crawling all over my skin at present is apparently a known side effect of taking NADH Coenzyme B3, I now discover. I can't blame my own symptoms on it for certain, of course, as my diabetes and multiple chemical and food sensitivities from the M.E. can have exactly the same effect. At the moment I'm ready to scratch my skin right off, even though there's no visible rash. A rash that I had all over my body two years ago was never fully solved beyond a vague diagnosis of "psoriasis" by the dermatological specialist. In the end, they thought the M.E. might have caused it indirectly as my immune and neurological system struggled.


I was reading earlier about one woman with CFS who had been taking 10mg of Enada, which seemed to help her fatique for a while, but it also caused gastrointestinal problems. My own stomach feels as if it has been hollowed out from the inside, though I usually put this down to M.E. muscle discomfort and weakness. I don't know for certain either way, but am soldiering on as usual.

As soon as the woman had to discontinue the Enada NADH because of these well-reported stomach side-effects, she found she had the worst CFS crash she had suffered for ages, leaving her worse off than before. She was advised to continue with a smaller dose, say 2.5mg. I couldn't break these 5mg babies in half in any case!

I have decided that I will keep taking 10mg until the Enada runs out in the first instance, continuing after that with the Coenzyme Q10 to see how it goes for me.


Off for a proper lie down now, till my muscles settle down and stop playing pat-a-cake when I'm not intending to move them! My eyes feel as if someone has been at them with a blowtorch. They need to put that blowtorch away and give me a break!