When I first had this condition it took me a while to accept the idea of taking medication, as I worried that I would just be poisoning myself and giving my body another load to carry. However I eventually came around to the idea, realising that I really wasn’t going to get anywhere unless I got some quality sleep. I have found two things particularly helpful at different times: low dose amitriptyline and melatonin.
Amitriptyline is a tricyclic antidepressant that in a low dose is used for a variety of other conditions because of its relaxing effect on muscles and nervous activity. It is often prescribed for people with ME/CFS for pain relief but has the additional benefit of helping you sleep. It needs to be prescribed by a doctor. The average therapeutic dose for treating depression is around 70mg but it can be helpful for treating ME/CFS with a dose as low as 10mg (or even lower for young people). The 2010 ME association survey of illness management requirements found that respondents had very mixed experiences of this drug. Only 48% of people who tried it found it had a good to moderate effect on symptoms, and 13% found it made them worse, the rest found little or no benefit. Click here to link to this report.
I have had mixed experiences of this medication. At times it has been extremely helpful but it has also made me feel worse at a different stage in my illness. I hope that by explaining how it affected me it will help you to make a choice about whether it may be beneficial to you.
When I first took this drug I had very stiff and painful muscles that seemed to be really overworked even when I had done little to deserve it. Although I slept quite a lot, because I wasn’t able to do much else, my sleep was always broken and un-refreshing. After a couple of weeks of taking amitriptyline I noticed that my muscles were starting to relax, I was in less pain and my sleep was much more satisfying. Although these benefits appeared quite small in the great scheme of how exhausted and disabled I seemed they were a spring board to more improvements. I was able to gradually start doing more and I started attending a weekly a T’ai Chi class. With a little more energy I was better able to look after myself and prepare healthier meals. The knock-on effect of these small benefits just grew and grew. I continued to take this low dose for about 18 months until I was only experiencing very occasional muscle pain and found that I could sleep reasonably well most of the time without it.
My experience has been that doctors don’t like prescribing this drug in small doses and have always tried to make me take larger and larger doses even when I was perfectly happy with the benefits I was receiving from my present dose. They may have thought that I needed an antidepressant dose or they may believe that people are supposed to develop a tolerance to this drug so need to take more and more for it to continue to benefit. But this has never been the case for me. I think that we are often more sensitive to the effects of medication, or medications often don’t affect us in the same way as it does the average person. Don’t let your doctor bully you into taking a higher dose if you think you are still enjoying the benefits of a low dose. With two different doctors I’ve had to cut my medication in half because, after taking an initial dose of 10mg, they’ve prescribed me 20mg tablets on my repeat visit despite me expressing that I didn’t want to take a higher dose.
The second time I got ill I decided very early on to take amitriptyline because of the combination of poor sleep and stiff and painful muscles I was experiencing. It was very helpful and my symptoms stayed mild. However after about 6 months I visited a homeopath because of a new complication of food intolerances and he suggested I try melatonin for my sleep difficulties instead. Always keen to take a more natural route I took his advice and found it worked for me too. Melatonin is a hormone that is naturally produced in our bodies that regulates our sleep/wake rhythm. Some argue that when you take a hormone supplement the body adjusts by producing even less of it, risking the development of a dependence on the supplement. I’m pretty sure it didn’t for me. I stopped taking it after a two week yoga retreat where I learned the benefit of daily meditation, without any ill effects at all. In England you may find your doctor will prescribe melatonin but it is also readily available on the internet (e.g. amazon).
After 4 months of medication-free, satisfying sleep, my sleep pattern was disrupted again by a big change in my circumstances. After a couple of weeks of worsening symptoms because of lack of sleep I decided to try amitriptyline again. However this time it didn’t suit me, although I slept better, I generally felt a lot worse. Basically, I was ok if I was doing something but any time that I rested I felt extremely low and totally lacking in energy. I hadn’t been experiencing much muscle pain this time and in hindsight I realise that was an indication that my nervous system hadn’t quite reached the same level of overdrive to need this medication. It seemed as though taking amitriptyline this time slowed my systems down too much.
Since then I’ve been able to settle my sleep down with the methods described in my last post with a little help from essential oils. I’ll talk more about essential oils in the next post.
In summary, amitriptyline at a low dose was very useful to me when sleep disturbance was part of a symptom pattern that included stiff and painful muscles; when it felt as though my body was in a kind of unstoppable overdrive. I found Melatonin useful in settling my sleep pattern at times when my muscle symptoms were not so severe.