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!
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!)
Well, quick update on the Enada NADH received yesterday.
The tablets are small and very easy indeed to swallow. Mind you, I'm known for being able to swallow the most revolting and/or huge pills without breaking my stride! Diabetes "metformin" tablets are my least favourites and can even make me shudder and wince!
Took two 5 mg Enada tablets (i.e. 10mg) when I got the package from Amazon through the post just before lunch yesterday.
Nothing dramatic through the day, which isn't surprising. Most courses of medicines will need a period of time before they "kick in".
Today, took another 10mg dose before breakfast which consisted of fruit, rasberries to be exact, plus a slice of toast. That's about half a carb of raspberries (about 35g) plus 2 carbs of toast. My morning ratio for my fast acting insulin (Novorapid) is currently 1 +1/2 times each unit of carb, so I took 4 units of Novorapid, plus my usual 6 units of basal insulin (Levemir), which is half my daily dose which I take split in half at 9am and 9pm to help it last through the entire 24 hours.
Hadn't slept well last night, and so woke with "rubbery" limbs, slight headache, cold hands, spells of dizziness as I move about. Nothing unusual, really, and a relatively "good" day, as I am now up and about.
My BG before lunch was 3.9. Hypo to some, but quite normal for me before a meal. My BG after fasting this morning was 7.4, bang on normal. I get a lot of the "Dawn Phenomenon" coupled with many episodes of the opposite "Somogyi Effect", so I'm always pleased to see a normal reading first thing! I'm sometimes in double figures then, due to the above mentioned ie high after a night hypo ("Somogyi Effect") or high because of the body's adrenal and hormonal responses to the "fight or flight" of early morning ("Dawn Phenomenon"). So far, so good.
Through this morning I've been borderline hypo twice, at about 10.30am and 11.30am. I get very few hypo warnings these days, apart from a kind of "glowing fog cloud" in my field of vision when my blood sugar drops to 1.9-2.2 ish. Yes, alarming to some, normal for me throughout the 27 years I've been diabetic!
On those occasions I took 3 jelly babies (fast acting sugar, 10g) and a plain rich tea biscuit (not so fast acting 10g) to bring me back into normal range. Before lunch (soup and a slice of bread with a chunk of cheese) I was 4.5. I took 1 tablet more (5g) of the Enada (15mg in all today) to make sure I'm neither under or overdosing myself. The recommendation on the packet says best to take it in the morning, which makes sense as more energy expended during day than at night.
So far: borderline hypo most of the morning, which can happen anyway at times. Any more hypos and I'll have to start wondering if the Enada is a cure for Type 1 diabetes instead! I do wonder if I'll find that with the extra energy the Enada may be encouraging my body to store, I may need less or more insulin (less would seem the case, if any, from this morning, but of course, this is far too early to make any judgments or changes). There's the wise "Three day rule" in insulin therapy, that adjustments should only be made on the evidence of several days, rather than switching amounts around willy nilly.
Activity levels this morning were things like catching up with email and checking in with friends online, cleaning the downstairs loo, making a Mother's Day card for the weekend (already partially made), feeding the birds, pulling the wheelie bin back in (my kind neighbour drags it from the kerbside to my back gate for me), doing a load of washing. Rested in between each of these to some extent. At this moment (early afternoon) I have the vaguest headache still, tingling in my hands, ringing in my ears from time to time and still sore glands/throat. Have to bear in mind that I led my one service per month at the weekend, which usually takes every last ounce of energy and co-ordination I have and can take a very long time to recover from, even on the best of weeks.
I feel no worse or better than normal. My mind was racing in the night, as often happens with illnesses like M.E. that involve disturbed sleep patterns, so I won't read anything into that. I just take a bit of time for quiet prayer and a little gentle jazz till I drift off again! Or just lie quietly and let the world softly turn! I'm just reporting this for the record, if it might help anyone else on their personal journey.
Stick with me.
I'll report back again soon on this one.
While people with M.E. look forward to a breakthrough in medical research and treatment, with standard non-treatments offered by many doctors and the "M.E. Clinics," usually no more than CBT and GET, we are often forced to take our treatments into our own hands.
Most of us have learnt to "pace" ourselves, when we can do so, to maximise our energy and minimise pain and other symptoms. Normal painkillers, like Ibuprofen and Paracetamol are limited in their effect, in my personal experience. Nothing touches those nerve pains, like having toothache in your neck, chest, wrists, back etc. Many touted "M.E. treatments" out there are often disconcertingly varied in their (reported!) success rates or prohibitive in their costs.
When I was first ill, I learned to deal with the pains all over my body and feverishness and swollen glands all through the night by lying (as best I could) on a stick - yes, just a normal polished wooden walker's pole. Mad? It worked for half an hour at a time sometimes, as the pain of feeling its hard lumpiness under me helped me to filter out the more diffused all-over pain I could not put my finger on or soothe in any way. Then I would wake up, back where I started, but at least I'd had a few minutes of sleep!
Over the years, I have tried Melatonin. I asked my doc about it, as I knew from researching it, that in the UK, at least, she was not allowed to prescribe it. She said as much, so I quietly sent for some online and took it for as long a period as I could still afford it. I had some sleep. Whether from the Melatonin, or sheer exhaustion or going through a better period, impossible to tell.
I drank pints of Berocca over the years too. Expensive but readily available fruit flavoured drink designed to restore "You, but on a good day" as the popular advertising campaign proclaims. I did have good days. But bad ones still arrived. As with many treatments aimed at those with no better options, my purse became emptier as my health continued to fluctuate.
My sense of humour and positive spirit ( not to mention what we Christians call "prayer" and "Giving thanks in every circumstance"), got me just as good results, for free, as did time, and whether or not there was an "R" in the month or a "Y" in the day!
Last year, in a better period for me, I sent away for a special powder called ME-Relief, designed by a man, Paul Carpenter, who believed he had skills in such matters, as well as being an M.E. sufferer himself. He had devised the powder based on what he knew of the body's chemistry and the science behind the illness and immune system, such as it stands. That, and his sheer desperation to be well again.
Again with hope and an open mind, I took the powder as prescribed through many days until the trial starter pack, at its reduced introductory cost, ran out. I still had bad days and weeks when I could manage very little and symptoms were disabling. My good periods were good when they were good, and bad, as ever, when they were bad. Please understand I am not saying that anything does or does not work, and if you believe it safe, then everyone has to decide for themself what may do them good. I object, however, to giving undue credit to substances for my regular oases of slight improvement. I have those same oases and crashes without any outside intervention or cost! The powder certainly didn't make my symptoms any worse or better in the end, but I bless him for his initiative. His website's support and information is a lifeline in itself to those struggling to understand and live with M.E.
The "Lightning Process", a hot potato of frighteningly emotional proportions in the M.E. community, is known to have transformed the lives of some and left others poorer and unhelped, longterm. I haven't tried it, so can't give my opinion either way. Others in the media are very quick to sing its praises in "curing" them, only to relapse (as I have done for at least the past 20 years, as well as going into remission without apparent intervention) before re-emerging for the next interview a few years later as miraculaously "cured" once again. It's always "once and for all" at the time, of course. Pyramid selling techniques in some "cures" mean those who find it helpful become evangelical practitioners of whichever course helped them, or, if an uncured "failure", they are quietly brushed under the carpet and not mentioned in statistics for fear of being "negative".We must draw our own conclusions, and will do so.
The Perrin Technique is another treatment involving among other things a method of massage to drain lymph nodes and provide stimulation and relief which I have tried. It feels good, when you can bear to be touched, but, for me, had no lasting measurable benefit, though I still get my Mum to press the suggested Perrin points when I'm ready to scream with discomfort and pain!
All along, I have read how NADH-Q (NADH-coenzyme Q oxidoreductase, Coenzyme Q10), a protein that occurs in the human mitochondrial genome DNA is involved in helping with energy matters in the cells. It helps to generate energy in the form of ATP (adenosine triphosphate) as it does naturally in a healthy body. Googling will explain any of this I'm not expressing clearly enough!
Considering the nature of M.E., the seeming inability for your inner battery to recharge, and all the attendant knock-on effects of this, taking this as a supplement seems to make sense to a sufferer.
So here I am. Ready to try something else. A friend whose sister has M.E, told me recently that her sister swears by taking ENADA (NADH) tablets which have given her more energy. Yes, she still has M.E. which affects her life on her bad days, but she believes in the power of these pills to transform for the better.
This week I sent for 30 5mg tablets from Amazon (cheapest deal I could find this week, at least, at £11.90 the box).
Reading medical opinions online, it seems that 10-20 mg is the safe and recommended dosage. At the higher end of this to be effective in touching the complex demands of a body compromised by M.E.
I've taken 10mg as an introductory dosage before lunch. I know I can't afford it regularly, but will save enough to target days when I have particular challenges, like weekends when I have promised to take a service for an hour through to the summer months. Even with a working wage, I don't see how I could do it longterm, but once back well enough to work, might only need it for extra draining challenges?
Summer is often less virus-riddled than winter (often but not predictably, as with most things M.E.-related!), so the tablets have the best chance of helping, perhaps, at this time of year. The clocks have been put forward. The spring equinox is past. The lighter nights are here!
So watch this space without judgment or fear.
Bring it on!
