Before I begin this posting I'd like to say that I can't believe that I've found this site. And when I say this site I don't just mean this site, I mean any site to do with peripheral neuropathy. Because for the first time in ten years I can recognise symptoms that are exactly the same as mine. When people describe burning tingling sensations and tiredness they are talking about me. For long time I just assumed I had some form of chronic fatigue, and maybe I still do. But it was too non specific in identifying exactly how I felt and my forays into medical diagnosis and treatment consequently yielded nothing. I feel now, not that I have reached the end of the road, but that I have just found the road. I will end my preamble and add the rider that I don't blame anybody if they don't get to the end. I wrote it a few years ago when I was trying to articulate, to myself really, exactly how I felt. As a result it's a bit self indulgent and long winded. (It's actually truncated to about a third it's original length). It is also written in the past tense, but everything is still the same.
Also I'd like to add, in keeping with the nature of this conferennce, that there is an underlying question. i.e. what the hell is wrong with me? What I describe below is an accurate account of the origins of my illness and the progression of my symptoms..
The first indications I got that something was wrong was in 1990. It was around Easter and I was studying for my final exams. I would start to read and within about 10 or 20 minutes I'd be overcome with an intense tiredness. It wasn't due to lack of sleep. Even in those days I slept a lot. Also the nature of the tiredness was unusual. It wasn't actually an overbearing tiredness but it was focused in the middle of my head, like it was concentrated in the centre of my brain. It had a draining effect, forcing me to stop and rest for a while. Within a few minutes the feeling would be gone and I'd feel fine, like nothing had happened. As soon as I'd start again, the feeling would come back. It was an uncomfortable sensation and worrying. It was preventing me from studying, which had it's own inevitable consequences. I decided that even with the exams looming I needed to take a break. For about a week I did nothing. Fresh air and exercise were on the menu. A couple of games of golf, a little bit of swimming, sitting out the back garden. I'm a natural worrier, so I was never completely at ease with this scenario, but at the same time I had no real choice. When I was finished with this period of recuperation therapy and started back in to study the problem had not gone away. I could only study in bursts. Panic was starting to set in. At that stage I was more worried about failing my exams than the implications and possible long term effects of what I was feeling. The turning point, of my life, if I can be allowed such a melodramatic emphasis, occurred sometime around then.
I don't know the exact date, but it was late in the evening. I can even remember what subject I was studying, Power Electricity. By this stage the focus of the tiredness had moved to the lower back of my brain. Normally when I start to read or concentrate on anything I can feel a kind of sensation in my head. It starts off as a tingling sensation and rapidly develops into a sort of heaviness. It's not an uncomfortable feeling. Perhaps the best way to describe it is like a very slight headache. For all I know it's the same for everybody. One of the reasons I am mentioning it is because I was trying to explain this to a Doctor at one stage and she wouldn't believe me. She was already sceptical about that before I even got on to my main complaint. In any case on this night I had started studying. The sensation of concentration started off in the front of my brain and continued towards the rear. As soon as it reached the lower back the tiredness was activated. It was like a feeling of being over tired. You can't sleep but you're totally drained. It was intense, and concentrated in that part of my head. I tried to force my way through it. Then all of a sudden it was gone. Whatever 'it' was had transferred itself to my spine. In that instance I could feel it go down into the middle of my back. As if the pressure of my concentration had been such that I had forced it. Once again, although this was a worrying development, my priorities still lay with my exams.
I passed my exams. My best subject was ironically Power Electricity. But the damage had been done. Looking back, knowing what I know now, I would have done things differently. Not knowing what I know now I would have done the same. Over the intervening years, to this date, that concentration of tiredness, exhaustion, fatigue, call it what you will, grew and spread from its base in the centre of my spine.
Gradually it started to increase in size and as it did so, spread. Firstly it was concentrated on my spinal column, and then started to probe beyond it. It seemed my nervous system was under attack. It would choose some point, like it was looking for the weakest point, and concentrate on it, pressuring it until it eventually gave way. It was like a slight burning sensation, a relentless, pulsating wave of.............of something, viral, bacterial, I don't know, cells that could move around their conquered territory with ease and were constantly trying to increase their sphere of influence. I had no problem sleeping. Far from it. I was starting to need more, and I never seemed to get enough. I couldn't sleep for 24 hours on the trot or anything like that. But when I woke up I was always still tired. Going to bed early or staying in bed late made no difference. If I missed out on sleep I felt a lot worse. The size of this moving mass of concentrated tiredness was definitely a function of the amount of sleep I got. When I missed sleep it grew and when I recovered lost sleep it shrunk. But there was always a lower threshold beyond which it wouldn't shrink, and as the years went by this threshold increased. There was never a waking moment when I couldn't feel it.
Well that's basically it. I'll save you the rest. . It is not a muscular or physical thing, but does cover all my nerves and nerve endings. As I said previously it's like a burning tingling sensation. Everything, my arms, my legs, my torso, my brain, is infested with this energy sapping disease. At any rate that's what it feels like.
A few years ago I came across an article about the nature of sleep. According to the article our bodies produce tiny bacteria during the day which causes us to sleep at night. It went on that the only discernible benefit of sleep is that it makes our immune system more active, which presumably destroys this bacteria. I showed this article to my doctor to see what he made of it. I was thinking along the lines that perhaps this bacteria had somehow gotten out of control within my nervous system. I meant to say this but I didn't. I didn't want to sound like some gobshite layman mouthing off about something he hadn't got the first notion about. My doctor wrote away looking for further information. Eventually he got a reply referring him to the source of the information, which he passed on to me. I have a name but I didn't feel confident writing off to some professor in England trying to explain my problem
I'll leave it at that. I'll more than welcome any opinions, suggestions, pointers etc. Thank you for listening.
Sorry that you had to endure such a lengthy set of symptoms. We really do not understand sleep, at least the reasons for our needing a hunk of time spent going through the various stages. The bacteria you speak of is a thought that has been around but has not been proven. We all have gut flora but our bodies do not produce bacteria. The defense system of the body produces cytokines against a bacterial infection that can induce tiredness/sleepiness. However, when there is not present infection, these cytokines are not produced in amounts that would affect the sleep centers in the brain.
Constant fatigue and paresthesias, especially that have lasted for many years are not well understood. We see patients who have these complaints but usually we do not find a reason. If you had increased symptoms with exercise etc, or the symptoms were episodic we could concentration what might be occurring at those times. So, we give the label of chronic fatigue syndrome to many of these disorders if the criteria of pain points and duration are evident.
Sorry, but I don't have an answer to your problem. Outside a possible mitochondrial problem, although atypical even for a mitochondrial problem, there is currently nothing I can offer.
I do get increased symptoms with exercise. It becomes more focussed and intense. Initially I feel better, and sleep better. But gradually the effects catch up on me and can last days or weeks before I return to the status quo, which is no picnic basket.
If you are interested in learning more about neuropathy, try www.neuropathy.org They have a bulletin board for posting questions, as well as all kinds of information about the disease, clinical studies, etc. Good luck in your search for answers!
Cathal on sunday Hello.Peripheral neuropathy, burning, tingling,tiredness,unable to study feeling of heaviness,worse with lack of sleep,energy sapping disease, increased symptoms with exercise etc may be long standing deficiency of Vitamin B-12 (cyanocobalamin) that can be treated not cured with massive doses of daily B-12 injections up to 12 cc per day. Go back to your doctor and obtain the article in the New England Journal of Medicine June 1988 -NeuroPsychiatric aspects of cyanocobalamin deficiency.Get the blood tests described in the article and post here to let me know the followup. good luck 6/14/2000
Sorry for the delay in responding to your response. I very much appreciate you taking the time and interest to read my posting and suggest a course of action. I checked the New England Journal of Medicine website and it doesn't go back that far. I have gotten numerous blood tests which do not point to a deficiency in Vitamin B. Perhaps the specific test you mentioned would give a more exact prognosis. My doctor is on holidays at the moment so I haven't been able to follow it up with him. I may actually forgo the test altogether and just get the injections, if my doctor agrees. I have heard in the meantime of another case where it worked. I presume it can do no harm. Once again, thank you.
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