My Recovery From CFS/PVFS/ME/...

Hi All,

When I was at my worst with CFS, I used to search the internet for information and grow ever more despairing at the lack of people who seemed to be recovering. Now that I'm recovering I realise that the last thing on your mind when you are recovering is going back to those depressing forums - there's too much fun to catch up on!

So my first point is don't despair.

Secondly, I'd like to share the understanding of CFS/ME/etc that I came to through my extensive reading and also the contributing factors to my recovery. I'm still not back to 100% but it's only been three months since I was at my worst and I'm well on the way back to full-health. I'm not going to come back and check replies to this post, or enter into correspondence, because I don't want to think about CFS anymore, and I won't have anything to add.

I also won't mention many details of my symptoms as I don't believe the exact symptoms are relevant to the cause of the illness or recovery from it. Suffice to say, I was most definitely unable to work or cook, and could only walk for approximately 5 minutes a day, on a good day.


Understanding
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From all my research, the explanation that made most sense to me, and fitted my experiences most closely was as follows.

I became ill because I was extremely stressed - possibly in conjunction to getting a bad virus. This combination of extreme stress, worrying worsening symptoms and incompetent doctors (leading to increased stress) led to a vicious circle whereby the increased levels of stress hormones led to my body being in a perpetual state of alert, thus worsening my symptoms. It was this permanent stress response, and the absence of the normal healing state the body requires, which led to my myriad of seemingly random symptoms.

I absolutely deny that any of this was "in my head". It was a neurological condition where the chemicals in my body got into the wrong balance, and my nervous system perhaps learnt the wrong unconscious response to situations. There were times when, despite my illness, I was relatively content, so I initially resisted this explanation but I now see that my body was unconciously in an underlying state of panic.

Again - it was most definitely not all in my head. However, we all know that the things we think about affect us physically: if you imagine tomorrow's job interview, you body starts to panic today. When this system goes badly wrong, as in CFS/ME/etc, it's no-longer enough to calm yourself down or be determined - you need to calm yourself down for a prolonged period (days/weeks) before you will see the benefit.

Recovery
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Relaxation / 'Meditation' / NLP

When I understood this, I resolved to listen to a relaxation tape every day. In my case, I listened to "Supreme Self Confidence" by Paul McKenna, which I happened to own from many years previously, and also followed the techniques described in the HeartMath book. I don't suppose the exact details are relevant. I spent about an hour and a half a day performing these relaxation exercises, and a variety of others. At the time, that wasn't a great time-commitment because I was unable to do much to occupy myself anyway. And it was definitely worth it.

Within three or four weeks I started to feel an inner-strength and calmness and an acceptance of my situation and calm belief that everything would be ok in some way.

I also used NLP-type techniques to visualise doing normal things and get my brain "used" to me being out and about and it being fine. I also used it to further relax myself. Rather than a chore, I actually managed to make this an uplifting experience and used similar techniques to help myself get to sleep - and on the occasions I still couldn't sleep, I didn't mind so much because I was enjoying my visualisations. I also, somewhat strangely perhaps, would frequently let out a sigh of relief and think (and really try to believe) "thank goodness that's over" - long before there was any sign at all that my symptoms were even reduced.

Not long after that I started to notice I could do a little more every day. When I went for a (very) short walk, I wasn't as stressed about the potentially disastrous consequences, and I noticed that I could walk a little further each day and feel ok when I got back. Two months afterwards I was able to move back into my own flat and look after myself, and a month later I am still recovering well. After a busy day trailing around London during the tube-strikes I've just come home and gone for a 4km run!


Brain-Tonic

I would also like to mention that I am now on Citalopram - an anti-depressant. An interesting thing I read about anti-depressants is that they should perhaps more accurately be referred to as "brain-tonics" as they help the entire nervous system and are certainly not useful for merely treating depression. Despite being somewhat prone to depression, I was amazed how well I kept my spirits up during my worst days and was certainly no more depressed than anyone who had had their life taken away would be - though there were of course many tears... So I wasn't taking the Citalopram for depression as such - but a number of doctors had told me that it seemed to help in some cases for unknown reasons.

Another point relating to the Citalopram was that I had to go on to my therapeutic dose (20mg) extremely gradually (phased in over 2 months), by cutting the tablets up with a knife. I'm not sure how a doctor would feel about this (my doctor reluctantly "allowed" me to), but I had previously failed to be able to handle the terrible side-effects of going straight onto 20mg of Fluoxetine (another anti-depressant). When the doctors repeatedly encouraged me to try again, and as I was at the end of my tether, I chose Citalopram as it was directed more at anxiety than depression, and because it came as a tablet rather than a capsule, thus enabling me to cut it up. I have since read that CFS/ME/etc sufferers do indeed often need to start medication extremely slowly as side-effects are worse than usual.

It's hard to say, but I think the Citalopram probably did play a role in calming me down and reducing my stress-levels, perhaps helping to get me to the point where I could at least listen to a relaxation tape. As I say, I wasn't really aware at the time just how stressed I was, though I was obviously aware I was pretty down. Some people advised me against using anti-depressants but I was desperate and they have helped me at other points in my life. I don't like taking them but I'll put up with it.


Lightning Process

A month after my recovery began I attended the Lightning Process course and it definitely helped speed up my recovery. I'm also happy to accept that if I hadn't already started recovering, the lightning process alone would probably have been enough.

Even without going on the lightning process course, which is fairly pricey at about £600 (though in my opinion worth it), the free explanations available at www.lighningprocess.com made great sense to me and helped me understand the illness, thus encouraging me to pursue the relaxation tape route, and making me determined to find the money to attend the course.

I really would strongly recommend this course. I read "Overcoming CFS with CBT" and was not at all impressed by their apparent lack of understanding of the illness or explanation of it. The Lightning Process though made perfect sense to me, and seems to be the way forward for the treatment of CFS/ME/etc. I have no affiliation with it however, and maintain that I initially triggered my own recovery as described above.


Other Notes
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Other things perhaps worth mentioning, for completeness, are:

- My recovery corresponded to a time of reflexology treatment. I (still) don't really believe in this stuff but I was desperate... and it's possible that just being pampered and receiving a nice foot massage every week helped reduce my stress levels.

- I also started taking Boots Everyday Energy and 100mg CoEnzyme Q10 tablets. This didn't really correspond particularly to my recovery but it may be worth mentioning.



I obviously can't predict how my health will be in future and it's already been a long and very hard journey, the extent of which a non-sufferer could never understand, but I really feel I understand more about the illness than all the doctors I talked to, and I will hopefully be able to use this knowledge to complete my full recovery soon and keep myself there.

Thanks and good luck,
Joe