Showing posts with label muscle. Show all posts
Showing posts with label muscle. Show all posts

Monday, 4 April 2011

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!



Sunday, 3 April 2011

Enada NADH Progress Report Day 4

Another update.
Yesterday I took 10mg of the Enada and today took another 15mg before breakfast.
Fasting blood sugars within the normal range but a couple of minor hypos both days, between mealtimes.


M.E. symptoms particularly trying this weekend, which could still be a knock on effect from last weekend's major challenge leading worship on the Sunday morning. Maybe I'm not taking a large enough dose of the Enada to hammer the deficit?

Nights have been disturbed, waking up several times every couple of hours with the sensation of lying on a "burning mat" as if lower back region on fire, actually generating heat I could feel from outside too. Getting "benign fasciculations" (muscle twitching and fluttering) in calves, soles of feet, toes, chest, arms, fingers, palms, lower back, eye region. These are observable from the outside. Core muscles in stomach area sore (feeling inflamed) and tender to touch, exhausting to sit up. Tender lymph nodes in neck and under arms, tiring sometimes even to lift arms for any length of time.


Last evening (Saturday) my whole skin felt it was crawling and itching, and I felt feverish with flu-like symptoms. Skin hot to the touch. Eyes reacting to ordinary light by the evening. Hyperacusis (sounds appearing too loud to me, or startlingly loud intermittently). Kneecaps feel "rubbery" and unstable.


Was determined to go to church, when I might normally have rested because of severity of M.E. this weekend. It was Mother's Day, for one thing, and wanted to give Mum a good day. Plus a dear friend of ours had texted on Saturday to say if we were going to be at church today, she would take a bus through from her home in town to share the special service with us.


Just walking round the corner to church (a five to ten minutes paced stroll on a beautiful sunny spring morning) was almost a challenge too far. Having been unable to keep warm "inside" for the past few days (this often happens since M.E. - my inner body temperature control is all up the spout, a common M.E. symptom) the friend asked several times during the service whether I was ok (visibly shaking and struggling to stand for the hymns probably gave a clue!) She was amazed how cold my face and hands were to the touch. I wasn't! Lol!

Co-ordinating to stand, smile, sing and focus on the words on the screen by the last hymn was a challenge, to say the least. The floor was turning to "rubber" (haha - so inconsiderate!).


By the time I went in for coffee after the service, my brain was fried. I had difficulty remembering some of the words I wanted to say to carry on various conversations with friends. Not so unusual for we middle aged, you may say! Wish it really was so simple. M.E. brainfog is recognisably different from the inside, believe me! Things were going into slow motion and going blurry round the edges by now. That and carrrying a plate and cup across the room and selecting a table to sit on with friends, was all I could manage, with a little help!


After this minor period of 'rest', decided that taking Mum for a Mothering Sunday pub lunch would save the energy I'd have had to expend preparing, cooking, serving (serving often uses up more units of energy than the cooking), washing and drying the pots etc. Sitting in a quiet familiar local pub, semi-dark and quiet before the later rush (the pub in question was actually slightly closer to get to on foot than walking home straight away), I got a bit more time to sit and recoup my dwindling energy and pain resources.


It was good to see Mum enjoying her Roasted Vegetable Jalfrezi, Vanilla Ice Cream and Cappuccino with complementary biscuit (not all on same plate!) and I knew I could rest up later. Real life, including things like special occasions, doesn't take account of the need for "pacing", of course.


Once home again today, I've not been really up to much else, and have had to sleep, on and off, for most of the day since then. I am now very hot and flesh crawling again, ears sore and overreactive to sounds, muscles in hands feel inflamed and are twitching, weak as I type, but again, I want to make sure I do this update before it becomes a bigger job to remember what has happened by tomorrow!


Tomorrow I may try to up the Enada dosage to 20mg, as I believe a slightly larger rather than the minimum dose is more beneficial for M.E., according to the experience of other sufferers I've read about in the past. I'm already a third of the way through the 30 tablets that cost me more than a tenner!

Till then, I'm hoping for some wholesome sleep tonight.




Night night, sleep tight,
Mind the bugs don't bite (or those itchy, invisible creepy crawlies I can feel flickering over various muscle groups! Lol!)