It’s back, and with a vengeance! I had my first bout of ME/CFS 21 years ago only in those days it was just called ME. Three months ago I had comparable attack. This post is basically a copy of a summary that I’ve drafted for my GP explaining my current symptoms. This illness is no laughing matter. It destroys your life.
I was bed-bound for about three months 21 years ago through ME; I was able to work part-time after four months, and largely recovered after twelve. Over the following year I recovered my remaining food tolerance and stamina. In the last 20 years, I have had perhaps a dozen CFS ‘echoes’, usually triggered following a virus attack and increased stress at work. These produced similar though somewhat milder symptoms that I could largely manage through bed-rest and diet restrictions; however recovery was typically quite quick and I was able to work from bed after perhaps two weeks in the worse of these and fully recovered within 1-2 months.
In the run up to this current attack over this last two years I have had a general decline in my health. I lost two molars through abscess and one of these was followed by an extremely painful two-month-long jaw infection. (Think of bad tooth-ache for two long and continuous months. The only upside was that at least I replaced the teeth with implants.) I was also plagued by early-onset cataracts in both eyes, which lead to my having cataract surgery mid-2007. Even so, up the end of 2007, I was still within general fitness norms for my age (for example my wife and I would routinely do a 6-7 mile speed walk at the weekend). Perhaps a factor in all this was that my job involved a lot of personal stress, which is itself another story, and not one for here. Then I started to suffer from viral conjunctivitis in November, followed by a short bacterial conjunctivitis infection (and this was quickly treated by antibiotics). However the viral conjunctivitis is intermittently a problem.
In early December I had a flair up of gingivitis around another two molars and my dentist prescribed a two week course of amoxicillin, followed by a 6 week course of Periostat (a low dose Doxycycline treatment). Towards the end of this second week course mild CFS symptoms started to show themselves, and I treated as one of these mild echoes; so I decided to discontinue the Periostat, after consultation with my dentist. By the 22nd I thought that I had pulled through the ME echo, and I went for a routine walk with my wife. After a few miles I knew that something was badly wrong: I just ran out of energy and my balance was off. By the time that we had got back to the car (after ~4 miles) my body had basically crashed, kicking off the full CFS symptoms.
Over the last 3+ months, my symptoms had been fairly flat though in some areas I have had improvement. I would describe them as follows:
- Lack of Energy. I can basically cope if I lie in bed with head support and limit my head movement. I am mobile and can ‘potter’ for short periods (say up to 20 minutes). I can’t sustain sitting upright or even semi-reclined, so I am spending perhaps 23 hours a day flat-out in bed.I can undertake short bursts of increased activity (for example going to the bathroom, making a cup of tea, or briefly joining my family for meals). However, I have a very limited energy budget and as I approached this I get the symptoms described below. My recovery period is quite short (1-2 hours) if I rest before hitting this budget. However if I go over this invisible line then I rapidly ‘crash’ and recovery can take days — for example it took me nearly a week to recover from my last visit to my GP (a 40 minute round trip).
- Muscle cramps and pain. I have been suffering cramps and pain intermittently throughout this illness. The degree and sites have shifted (mostly upper arms, back and shoulders) but the general effect is that individual muscle bundles can knot like iron for days. Massage helps to alleviate symptoms and relax the cramp, but I am still left with the internal bruising and general ache. At its worst, this disrupts xmy sleep patterns as I find it very difficult to get to sleep in the first place, and the pain wakes me up after 4-5 hours as I again surface to shallow sleep.The degree of cramp correlates to the symptoms of mental confusion discussed below, particularly when the cramp site is in the upper back or shoulders. I also have poor temperature tolerance. I have to sleep in a sweatshirt under my duvet, and I need to keep my shoulders and arms warm when sitting supported (e.g. by wearing a wrap). My muscles can easily get chilled and this invariably triggers cramp. There is one muscle bundle in my left deltoid that has been in cramp for months to the extent that movement in my left upper arm is now limited (e.g. I can no longer comfortably lie face-down with my left arm bent). I also had quite frequent headaches.
- Coordination and balance. These are woeful compared to my previous healthy condition. When I first get up after bed rest I can walk almost normally, but within 10 minutes or so of pottering (or perhaps 30 minutes if just sitting) my coordination and balance start to go. I cannot move from sitting to standing nor walk without consciously controlling my body position and balance. I have to walk open legged and rely on support. As I approach my ‘crash’ point, I start to get tunnel vision and a detached feeling; I lose fine control of my hands; my balance goes entirely; my limbs start to tremble; and my legs start to buckle. I find it difficult to speak clearly. From this point I have a few minutes to get prone and resting, and if I do this then my recovery is quite quick — perhaps as little as a few hours. If I don’t start immediate bed rest, then it can take days to recover to my previous levels.
- Mental Function. This can be very poor; at its worst I am incapable of coherent creative thought and I can’t maintain concentration for periods of more than 10 to 15 minutes; I can’t even concentrate enough to read or to watch a video. There have been weeks when I have been like this (e.g. when I was suffering bad back cramps). At its best and when I am fully bed-rested my mental function is now at near healthy levels, and I can do quite complex creative work on my PC (such as writing this note).I have a simple test which correlates well to my general mental function: when I can’t think clearly, I also hear a scrunching sound behind my ears at the top of my spinal cord when I turn my head left and right. (I can’t hear this at all when I feel normal.) The louder the sound, the poorer the mental function,I am also particularly sensitive to any form of stress at the moment. It seems to trigger an almost immediate worsening of my current symptoms as well as the usual anxiety ones. I have had to make a conscious and deliberate decision to ‘walk away’ from any involvement with work.
- Depression. I have suffered some depression during this illness but no more than could be expected given nearly four months of total physical incapacity, intermittent pain with long periods of loss of mental function and a poor immediate prospect of recovery. The physical aspects of this illness are extremely tedious, but it is the mental aspects that I find most difficult to cope with. The odd ‘boo-hoo’ can provide a useful safety valve here.
- Diet, etc.. This hasn’t really been an issue during this illness as we have had 20 years to understand my dietary sensitivities with respect to CFS/ME: keep away from additives and processed foods. I have had to give up alcohol and coffee because I react badly to these. I haven’t noticed any symptoms of gluten intolerance, and my bowel function, peristaltic action, etc. have remained within acceptable bounds.
- Energy. My general energy budget has been flat, perhaps with a weak low point in Jan / Feb; and certainly no clear improvement. Energy recovery times are noticeably improving though: it now takes me perhaps an hour to recover from ‘pottering’ that might have taken three to four hours in January.
- Muscle cramps and pain. These were particularly bad in January and February. This month it has been more a case of low-level back cramp. Bed rest and inactivity don’t help here, but there is less impact on my sleep and mental function.
- Coordination and balance. No noticeable improvement for a given energy level.
- Mental Function. This is one area where I have observed a marked general improvement over the last three months, though I have had relapses during post-crash recovery and once from a food reaction.
- Depression/Mental Attitude. I have tried to maintain a positive attitude here. (It’s either that or curl up and despair.) Yes, the physical incapacity does get to me, but I can cope with this and life in general as long as I can think straight. I certainly feel less ‘burnt out’ now.
- Diet, etc.. No change, other than giving up the last of my ‘sins’: alcohol and coffee. My wife mentioned last week that my halitosis had cleared at last and that my breath was back to normal. And she hadn’t mentioned the halitosis previously, not wanting to upset me further, I hadn’t actually realised that I had had very bad breath since the onset of illness.
Comparison with my 1980’s Attack
In my first attack I had acute headaches for a lot of the time and I was yeast, dairy and gluten intolerant which made my diet difficult. The main site for my cramps was in my legs, and my temperature control was very poor. And of course the illness was new to me and largely unknown to the medical professions. My low point was definitely lower, but looking back I feel that my recovery was steadier.
This time, my diet, etc. have posed few problems; the cramps have been in my upper body, and I have had fewer headaches. I am also familiar with the illness and its management. Technology (laptop, Internet, DVDs etc.) also helps to alleviate the boredom. So this attack hasn’t quite plumbed to the same depths. On the other hand I feel that my mental confusion has been worse and the recovery is far flatter. My wife and I disagree on which of these attacks was worst, so I guess that the two are broadly comparable.
I believe that my work environment and associated stress factors led to a slow collapse of my immune functions and general burnout in the few years prior to my illness, which in turn opened the door to various infections and triggering the CFS/ME. Looking at the general trend I feel that this episode will ultimately prove worse than my first attack 20 years ago.
I feel that my mental function (and therefore hopefully my immune function) is now recovering thanks to this enforced break, and despite all of the other stress factors. Hopefully, over the next few months this will start to manifest itself in my physical well-being. Nonetheless barring miracles I will not be fit for work in the foreseeable future.
To date my employers have been tolerant, but I think that this will change at some point and this is going to involve some lifestyle changes for my family.
The primary healthcare system is likewise tolerant, but is unable to offer active support: ME is that least now better understood than it was 20 years ago, but there has been little or no effective progress in its treatment. Any recovery has to be found within me and with the support of my family.