Thursday, November 6, 2014


A curious element of my particular experience with ME/CFS is all of the different kinds of inflammation and aching that I feel in my body from time to time.

I talk about "inflammation" in the broadest sense, this is not a medical diagnosis of what I go through, simply a way of describing feelings of discomfort in different parts of my body.

There is inflammation in the gut and stomach, of course. Many people with ME/CFS have irritable bowel syndrome (IBS), and while I don't think that is quite true in my case, I do have a lot of food intolerances that cause bloating, discomfort, tenderness in the stomach. If I eat a lot of a food that I can't usually take, like wheat or cow's milk products, it can feel like my gut is swollen and inflamed. Even small amounts of certain supplements or medications (D-ribose for example) can do this too.

I have also had prostate inflammation for years now, it started a couple of years into my ME experience, so it has now become an everyday part of my existence. I have discovered, through various ME forums, that this is quite common in men with ME/CFS. It can manifest itself as a dull ache in the prostate, and a strong desire to urinate, often frequently. It is, at times, literally a pain in the balls. At its worst it can be uncomfortable, even to sit down, and can wake me up at night, though this is rare.

Six months ago I had what could have been a very serious
car accident. I was told by multiple people that I was lucky to be alive, the car skidded and turned on its side in a ditch while I was going 100 kilometres per hour. I emerged with only some aches in the back and tingling in the feet. I have had some physiotherapy

recently, and this has improved, but it is still an issue, intermittently. The feeling is often that my lower back is stiff and sore and aching. It sometimes also feels like my neck and upper back too are jammed and locked up.

And the last main area is the chest. After a cold - something I had last month - I often get a cough or wheezy chest for a few weeks after, and I have been experiencing this recently. There are times when I have had difficulty breathing at night, or when I haven't
been able to speak because of the coughing. I am not sick anymore, but the heavy, irritated chest has stuck around. I also react to animal dander, especially cats, which just chokes me up.

There are a number of things related to all of these symptoms that I have discovered over the years that are quite curious. Firstly, the various forms of inflammation seem at times to be random, and are all intermittent. One day I may have an aching back, the next my prostate may be sore, this may last a few days, and then I may get a temporarily inflamed stomach. There isn't an easy way to predict what I will be experiencing from day to day.

Secondly, I rarely have more than one symptom at once. So for example, if my back is aching then my prostate is generally calm. If my chest is tight then it is unusual to have a disturbed, disrupted digestion.

This has had interesting implications. I have found that my chest and sinus are effected by something in my bedroom, it has been like this since I moved into this house, two years ago. I solved it initially by getting an air purifier, and so have been relatively fine recently.

Then, a couple of weeks ago the cartridge in the purifier ran out, and I haven't been able to get a new one as the company I usually buy them from is out of stock. So my chest has been heavier than normal, I've been wheezing, having trouble breathing at night.

What I have also found in this time, is that I am much less reactive to problematic foods than normal. I have eaten pasta, apple tart, cow's cheese, cream, bread, pastries, all with minimal reaction. I haven't eaten great quantities of these, but the fact that I have been able to eat them at all is remarkable.

Somehow it seems that my body can only react one way at a time to the environment. If my chest is reacting to whatever irritant is in my room, then my stomach is much less likely to have a bad reaction to problem foods. The same happened a few months back when my back was giving me trouble. I was aching and stiff for weeks, then I had a period of prostatitis which was particularly uncomfortable, and my back stopped hurting so much, pretty much immediately.

The final curious element in all this is that, during relapses, the various kinds of inflammation that I normally experience often disappear. In May of this year I had a relapse after a stomach bug, and again, my back, which had been giving me a lot of trouble for the previous two months, eased off pretty much immediately.

The same was true of the prostate, which was fairly calm, almost normal. I had few digestive problems also, and didn't tend to react too badly to problem foods. In fact, I knew I was getting better when I started to have more aching in the back, an achier prostate, and when the stomach started to react to things again.

I don't pretend to understand this, but the times when I have most energy, when I am most clearheaded and "normal", are when I have a stinging prostate, or an aching back, or an inflamed gut. It is perhaps that the inflammation, the stinging or irritation is a sign that the central nervous system has woken up, is kicked into action, is no longer dormant. The various forms of inflammation that I experience are possibly by-products of a dysfunctional nervous system overreacting while trying to return to a more normal state.

Though this is all speculation. As I said, I don't really get it. I would love to know a little more about human biology and physiology, to know how these various reactions come about, and what causes them. What is true though, is that I now welcome a certain amount of aching somewhere. It means that I am probably going to have some energy, that I am not going to be as lethargic or sleepy or drained as I am at my worst, that the occasional headaches or nausea that I get will be kept at bay.

This is what happens in a condition as messed up as ME/CFS. You can learn to welcome things that healthy people would see as annoyances. I live with my various inflammations, and, as long as they are only slight inconveniences, they are a bizarre sign of some rare, much needed energy that is not always available. I would love one day to feel good without feeling bad somewhere else, but for now the trade-off is the only thing available, and that is what I have to accept.

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