25 or so years ago I was told I had IBS (Irritable Bowel Syndrome). I was told there was no cure for that either. You just have to live with it.
Over the years I tried various supplements, digestive enzymes, vitamin supplements, live yoghurts, but found the best 'cure' for my IBS was a couple of pints of real ale of an evening. It relaxed the symptoms and I felt nicely mellow. During the day I would have the bloating, and after meals, my tummy would be like someone had stuck a full sized football inside me. But in the evening, a couple of pints of real ale made it all OK.
I continued with the Real Ale 'treatment' for 25 years, generally a couple of pints every night, though sometimes I had two and a half pints. Initially I favoured Salt & Vinegar Crisps with my real ale, but after maybe 5 years, upgraded to Cheese & Onion. I never looked back. Cannot now understand what I saw in Salt & Vinegar.
Around three years ago I started getting pains under my ribs front and back, they were sharp twinges which would come and go, like I was being stabbed. Also heavy night sweats. I eventually looked up the symptoms, which matched 'chronic pancreatitis'. So I was convinced that is what I had. The cause, according to my on line research, was probably linked to excess alcohol. Over many years, 14-16 pints of real ale a week is quite a lot of units of alcohol. Something has to give eventually.
I decided to reduce my real ale consumption by rationing myself to an allowance of 10 pints a week. This reduced the symptoms, but did not eliminate them. So I cut down again, but eventually concluded, with great sadness, that I had to stop my lovely real ale. So I did. I have never had a problem with stopping something that is not good for me. When I stopped smoking, I just stopped and that was it (the odd lapse I allowed, but essentially I had stopped and so never missed them). So it was with the real ale. An old friend - but we had to part.
After a few months, the pancreatic symptoms eased off. Actually it took me a while to completely stop the real ale, initially rationing it, but sadly, only complete abandonment of the real ale worked. Every now and again, on special occasions, I have allowed myself a pint, which I can get away with, but the moment I have a pint, even one pint, for more than three or four nights, I can feel it causing problems.
Soon the IBS got a lot worse again, plus I started to get these aches in all my muscles, feeling generally very fatigued. Walking up steps was a problem; I was exhausted half way up a flight of steps. However my main concern was the bloating, difficulty digesting, and the periods when I could barely eat. I went through a month of treatment in
Yet on my return, I still had myriad strange symptoms - thick headed feeling, aches in legs, hips, arms, elbows, wrists, every joint. Terrible leg tingling after walking, worse in evening, preventing sleep - learnt this was RLS (Restless Leg Syndrome). Awful. Loud tinnitus, tender points that I could push in on and feel pain. Lower back ache so bad that I wasted a lot of time having scans done and seeing a neurologist. I wondered if the RLS was caused by some trapped nerve or deterioration in the back. But three privately paid for scans of different parts of back revealed nothing wrong. The private neurologist, finding nothing he could identify as the cause, lost interest, despite his high fee.
I later learnt I had all the classic symptoms of fibromyalgia. Tiredness, lack of energy, even walking seemed exhausting. The aforementioned neurologist referred me to a colleague down the corridor who looked at me briefly, listened to me relate my symptoms, said I had fibromyalgia and relieved my wallet of another £200 or so.
Great - a diagnosis. But no cure. Just a silly little leaflet saying to live with it.
For a few months I researched every single supplement I had taken to see what the side effects were, in case the cause could be attributed to something I had taken. Lots of side effects, benefits and facts and theories about all the vitamins and minerals and so on available, but no link to the fibromyalgia. One thing I did find interesting was a reference to 50% of fibromyalgia sufferers having IBS. Anyway, here was a connection, which in my case, made a ‘cure’ possible. It does not follow that what worked for me will work for everyone with fibro, but anyone with an IBS connection may get a result.
Before tackling the fibro, I first underwent a month's treatment for the IBS in a clinic in
There is one key element of the Russian clinic's diet - all of which made perfect sense - which I still religiously use. You would not readily find it in the
If I drink a pint of milk I will not tolerate it, but a pint of Kefir is no problem at all. It is essential for lining the stomach and reducing inflammation and once you address the inflammation problem, you start to improve digestion.
I found Kefir to be absolutely invaluable in reducing the soreness. However it is not the only solution. I recently had a repeat of the pancreatic pains and a sharp new pain, like a stitch, worse when walking, on my right side. I read up more about 'biliary sludge' and concluded I might have progressed to stones in the gall bladder. The NHS doctor reckoned the theory was worth checking and within three weeks of the symptoms starting, I had an ultrasound scan.
In the meantime I researched all about the bile duct, learning what I needed to do to stimulate bile production, and eliminate stones and sludge. If you look up 'biliary sludge remove' on line, you will find what to do. Though some of the stuff is theory, I did find I could stimulate bile flow with increased water intake coupled with grapefruit seed extract - citrus fruits are recommended to increase bile flow, along with apple juice, olive oil, raw vegetables etc.
By the time I had the scan, I felt much better but was beginning a nasty flu. The scan, to my pleasant surprise, showed I no longer had biliary sludge, let alone gall stones. There was nothing wrong at all. What caused the flare up - I don't know! Maybe it was the flu – who knows? But I do now drink more juice and water and if I need to feel 'hungry' before a meal, I know what to do to stimulate bile production.
The use of citrus fruits is certainly not suitable for anyone with a tender stomach - so a couple of years on the live Kefir yoghurt and a careful diet is needed to reduce the inflammation first. To get the balance right, and to work out what to do, it certainly is not easy. The medical profession probably have the answers between them all, but the information is sort of scattered everywhere, so you can focus on the wrong information, miss things out, and misunderstand your own symptoms. You puzzle over the causes of a condition you think you have, only to find what you have is actually something else with a differing cause, though the symptoms may be the same or similar.
I have learnt that several different initial causes can end up giving you the same set of symptoms. There are many roads leading to the same destination.
Eventually I was able to tackle the worst of the IBS, though I still get bloating after anything fatty, anything sweet, anything that is 'incorrect' to eat, and I do not think you can ever completely eliminate IBS.
Yoghurts are good for lining the stomach, but their fat content can cause bloating. There is a lot of talk of allergies but personally I think allergies are over-rated. There are people with food intolerances, but they do not have allergies, just an inability to absorb certain foods efficiently. The most common digestive disorder, at least in my case, centres on the lack of absorption of fats.
Finally I was beginning to establish - at least in my own case - the link between IBS, mal-absorption and fibromyalgia.
Further research on line brought me to a specialist who had a clinic in
He, as with other professionals, saw a link between Chronic Fatigue Syndrome (also known as yuppie flu) and Fibromyalgia. All these conditions are exceedingly tedious and destroy your quality of life, yet because they are not life threatening, there is little effort by the medical profession generally to address and resolve these conditions. Indeed, given what doctors have to go through to get qualified, it is amazing some of these conditions are so baffling to them.
Patients either give up and ‘live with it’, their quality of life really mucked up by the symptoms of IBS and fibromyalgia and chronic fatigue, or they are forced to find their own answers. Most will go down the supplement route, reading up on vitamins and minerals and wondering what claims to believe. They may have some limited success depending on the relevance of what they choose to take, to the original cause of their symptoms, which in most cases, will probably remain permanently unknown to them.
Since most patients, myself included, are not medically qualified, this can be a pretty long road to travel down. The more I discover, the more I find I do not know. As I understand more, I know there is more yet to know.
At one point I was doing four hours of research on line a day, for three months, just into the side effects of supplements. This was a complete blind alley, although I do have a very useful spreadsheet of every single supplement and ingredient I have personally come across. I can in an instant look up their supposed benefits, and their side effects (if any).
Being self-employed, at least I had the time and sufficient funds to put a lot of energy (such as you have with fibromyalgia) into solving the problem.
This Bristol Doctor was the most useful person I met on my journey to discover a fibromyalgia cure. He made the point that taking food supplements, vitamin supplements, or even attempting a correct diet of fruit and foods containing magnesium (e.g. bananas) and foods containing the B vitamins, would not work if you are not able to digest the food or vitamins correctly.
There are those who say vitamins are a waste of time, and that it is taking any form of supplement is a waste of time. My wife says anything that is not a medically approved drug, with precisely measured quantities, all the ingredients known and proven and tested, is just nonsense, a mere 'food supplement'.
Others, quite rightly, say that if you have the correct diet, you should not need food supplements or vitamins. Sellers of vitamins would disagree with this, but the issue goes beyond whether vitamins and supplements actually do what they are claimed to do.
The key issue, is whether you are fully able to absorb whatever you eat. This is something very few medical practitioners, health food proponents, and sellers of vitamins address. A seller of any supplement, vitamin or food is not going to warn you that if you cannot absorb whatever they are selling you, it will not do you any good.
So this
I never have any trouble getting to sleep, so could not understand why he considered I was not sleeping properly. However a key theory in fibromyalgia is that poor sleep quality may be a cause of the condition.
Muscle aches can be attributed to a magnesium deficiency. As for the B vitamins, I suppose the brewers yeast in my real ale had been a major source of B vitamins, and a deficiency in some of the B vitamins had been noted by the Russian clinic. The chances are when I stopped drinking Real Ale, I lost my source of extra Vitamin B - that's my theory anyway.
I persisted with the injections somewhat more erratically than prescribed, for several months. They were rather painful. So as I felt I was getting my IBS under some control, I started supplementing with 250 mg Magnesium tablets once a day, some Vitamin B, and kept drinking loads of the Kefir yoghurt. I also still take half a sleeping tablet every night, on prescription, and notice I do now have dreams I remember.
I am not sure which of the fibro symptoms started disappearing first. I think the awful leg tingling left first. It took a while for the back ache to resolve and once or twice I've had problems with it again, but it resolves itself now after a week or two. There was nothing wrong with my back in the scans, but the pain had at one point been excruciating. I was having difficulty moving some days. Gradually the back pain left.
The head fug took a while to go, probably a year. The muscle aches gradually reduced, and eventually ended up just in the right elbow, plus a period of pain in the right wrist. This also, eventually, and quietly, disappeared. Lastly, the sleepiness, which is very dangerous if you are driving, stopped being a problem, though I can still feel exhausted after eating.
Have I cured my fibromyalgia? Well, I am not so confident as to assume the condition will never return. In the summer of 2010 I spent two months doing hard physical work in the garden, including shifting large amounts of earth by wheelbarrow and lifting heavy objects. I could never have envisaged myself doing this a year earlier.
I do seem to have put the symptoms of fibromyalgia into something approaching long-term hibernation. Normally the slightest cold would exacerbate all the fibromyalgia aches and pains. Yet I have been suffering the diabolical winter flu that is doing the rounds (Dec 2010), all the elements of cold, cough, and flu symptoms you'd expect, including a temperature - chances are you have gone down with this same flu this year. Yet the one thing I have not had are the muscle aches associated with flu. Nor have I had any return of the tender points, the brain fog of fibromyalgia, the tell tale weakness when moving around.
So what was my 'cure'. 1) Tackle the IBS and poor absorption of food. I still never get this quite right but I am ‘living with it’. 2) Injections of magnesium and the B vitamins needed, at least until digestion improved. 3) Supplements of magnesium and B vitamins, also Vitamin D supplements, and half a sleeping pill as prescribed, each night. 4) No alcohol and no foods that can muck up the digestive system. 5) General acceptance that one won't ever feel fully 100%, but definitely it is possible to get to a state that one CAN "live with".
There is however, no need to have to live with the symptoms of fibromyalgia. IBS is another matter, but in my case, certainly, fibromyalgia was caused by the IBS and poor digestion.
IBS may not be the cause in every case, but it is logical to assume if you have IBS and fibromyalgia, that tackling the first condition may improve the second.
If you have found this article helpful, let me know or email me at martin.gover@selclene.co.uk
