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| Vivi-Mari Carpelan: "Insomnia" (handmade mixed media collage 2011) |
Well, of course I don't have all the answer... if you scroll down to my first blog post you will find a very thorough version of an article I wrote about severe, chronic insomnia. It was cut down quite a lot for the magazine Fibromyalgia Focus and I will attach the short version here. Since I wrote the article, a couple of things have come to my notice. One is that after years on sleeping medication, it's a good idea to start rotating the available medication quite often. Inspite of what your doctor may tell you, all the different pills do act differently in your system. So for instance, Diazepam and Temazepam can be alternated succesfully. Even better if you have more stuff to rotate with. I use Quetiapine and the mood enhancer Mirtazapine, for instance. The latter I only use for max. two weeks as I don't wish for it to start acting as a moodenhancer (by which time it's not as effective as a sedative anyway). Quetiapine is one of the best non-addictive substances I have found. But of course, your doctors have to be sure that you know what you're doing and don't have problems with substance abuse.
The other thing I have found is that apart from doing Qigong movements just before going to bed, it's very useful to rub your tummy. You can do big circles that gradually get smaller (and do it slowly, both ways). You can also lie in you bed with the left hand below your belly button and the right hand on your solar plexus (under the heart). This is already calming. Your hands are quite relaxed this way too. You can get into a meditative state by stroking your hands up and down on your tummy from the position described above. It can be surprisingly effective!
Some people have done a "sleep regime" which means they were only allowed to stay in their bedroom for six hours to start with, and then gradually increase the amount. However, it seems to me you have to be a healthy person in order to do that and to deal with the lack of sleep as well as the stress. But if you don't sleep anyway and medication doesn't help, it might be worth trying it.
It has also been suggested that having a hot shower about an hour before bedtime is beneficial, because after this the body temperature drops radically and this is conducive to sleep.
Beware of one very important thing though! If you have suffered severe stress, burn out and possibly even posttraumatic stress disorder, you need lots of sleep! So it's my sincere opinion that you need medication more than anybody else and should not just "try and make do". Your body needs to repair itself, and it can only do so if you get lots of sleep. This thought is based in my personal experience, as I am gradually picking up from severe burn outs through great amounts of sleep. You can tell how much better things are just from the fact that I can watch an action movie without getting incredibly stressed (as the fight and flight alarm goes off). I have gotten to a stage where my body sometimes feels very heavy in the morning and I sleep really well during that time. I allow myself, and feel so much better as I literally feel how the nervous system is buzzing from pleasure and restoration. At some point when I am ready, I will try and get more disciplined and keep regular hours, but so far I have had to put the sleep first.
INSOMNIA – WHEN A NATURAL FUNCTION GOES AWRY
By Vivi-Mari Carpelan
Many people with FM struggle with sleeping, which can increase FM symptoms of pain and fibrofog, not to mention fatigue. Here Vivi-Mari shares her experiences of sleep deprivation, the effect it has on her and practical ideas for improving your chances of getting a good night’s sleep.......
Consider for a while that sleep deprivation is a known means of torture. Imagine what bad quality sleep can do to you. Since sleep deprivation causes health issues and most people with fibromyalgia suffer from it, you may ask yourself whether your aches, pains and brain fog are in fact all due to fibromyalgia? In the following account from a patient’s perspective, we are about to enter a maze of symptoms and medications where things may not be quite what they seem to be and the way out is hard to find.
I have recently relocated to Britain from Finland. It was one of the most strenuous moves I’ve ever undertaken and it aggravated the insomnia I have suffered from since 1999. Having tried to establish relationships with the local GPs here in the UK and also listened to many testimonials about the lack of help people with fibromyalgia experience in regards to their problems with sleep, I have to say that the situation is deplorable. Many patients get only a couple of hours sleep a night and the doctors have turned their backs on them. One GP suggested to me that this is a problem that is outside of normal medical practice, implying that he would prefer to wash his hands off this issue altogether. Another GP has tried to find an expert who would take on my case, but to no avail. Anecdotal accounts indicate that many NHS patients complain of sleep problems so this lack of expertise is more than a little strange.
Sleep deprivation can cause severe mental and physical issues as the brain is unable to get the restorative sleep it needs in order to function properly. I can certainly testify that my physical fibromyalgia symptoms of aches and pains, often teamed with a strange numbness in places, are hugely aggravated as soon as I get less sleep than I feel I really need. Even within a few hours of having had a bad night the problems begin; I start feeling depressed, irritable and anxious (sometimes with suicidal thoughts), nervous and jittery, as well as having a negative and judgemental attitude. I’m unable to exercise, unable to undertake relaxation practices, unable to have sex. I’m unable to process relationship issues, unable to deal with normal social challenges, unable to think coherently. I experience a lack of creative initiative and inability to perform monotonous tasks (with the obvious consequence of not making money). I’m also unable to focus on any form of reading or following the plot in a movie or documentary…the list could go on and on, and as you can see it comprises most things in life! It’s hardly surprising that you easily start to victimise yourself in this sort of situation, and may lose the will to live.
All this could also potentially ruin a marriage. When under slept, I feel that I’m going insane, and the sense of strain in the body is very much like severe pain. It has been said that sleep deprivation very quickly starts to resemble a state of drunkenness as it causes a similar lack of mental presence and attention. These are symptoms people with fibromyalgia (and chronic fatigue syndrome) have anyway, but to me the difference is still like that of night and day. As a disabled person with time on my hands, I actually manage life quite well if I have had a reasonably restorative night’s sleep. In my case it means sleeping long enough (up to 10 hours), although, as far as I know, for many FM sufferers getting more hours of sleep doesn't necessarily mean they feel any better.
Sadly, insomnia is a vicious circle in that it also increases the use of sleeping medication – yet some insomniacs will not be able to survive without them. Life with a chronic illness is hard enough as it is – we should not need to also suffer from surplus fatigue if there is any form of remedy. Like most people, I would absolutely prefer not to be popping pills. But after all, fibromyalgia is now a recognised illness and should be treated with the same respect as so-called high status illnesses such as cancer or heart disease.
In reality, insomnia is defined as a subjective experience of sleep deprivation and varies greatly from person to person, and this should be recognised by the medical establishment. It’s not easy to talk about it to the GP and asking for help usually equates with a fear that they suspect you’re a junkie. I have yet to encounter anyone who takes a clear stand for really difficult cases of insomnia and very many times I have been scorned. Doctors often seem to panic - possibly because if a patient expresses a continuing need for sleeping medication, they equate this with addiction, although the need may be perfectly genuine.
We are all very different when it comes to sleep, and I know this problem is not quite so severe for everybody. But when it’s bad, it really rules your life.
My insomnia was triggered 11 years ago when I was 34. Up until that point I was always tired and easily dozed off during lectures at the university. That year, I had a short relationship that left me devastated. I resisted sleeping medication for a year but at the end of it I felt so burned out that I gave in to the need for medication and was prescribed Zopiclone (a commonly prescribed short-acting sleeping pill). It’s noteworthy, that I slept about 7 hours at the time but it just wasn’t enough. I suspect that the quality of my sleep has been poor since the onset of my spinal disorder at an early age. I managed quite well on Zopiclone alone for about 9 years, but then the real trouble began. Eventually this medicine was no longer effective on its own, and so an indefinite period of trying out various combinations of medication started. I was waking up after 5 hours, had to somehow get 9–10 hours in order to function at all, and was unable to take naps in the daytime. As with many chronic insomniacs, I was often unnaturally alert during the daytime (possibly due to excessive production of adrenaline and the stress hormone cortisol).
My need for sleep had gradually increased and it was clear that I wasn’t suffering from the usual problem of an over-active mind. In fact, it appears that I have a problem on the level of the autonomic nervous system and it’s possible I may no longer even be able to have natural sleep. It is also possible that personality is involved in the process as it makes sense that high energy, intense and sensitive people like myself require more energy and also respond strongly to all sensory input to the point where they feel constantly feel stressed and overwhelmed. As a consequence, it's truly vital to learn how to avoid unnecessary stressors and stay calm and mindful throughout the day.
My fibromyalgia has not come out of the blue; it has come about as the result of an unusual deformation of the spine, followed by a fusion of vertebrae. Of course the spine as the vertical axis of the body and home to spinal nerves is crucial to the functioning of the autonomic nervous system, and it’s very important that it is flexible. Nerves can get physically damaged and lose their suppleness under long-term stress and difficulties in achieving the restorative deep sleep. The autonomic nervous system, on the other hand, affects the brain and the release of vital hormones – not least the growth hormones and the sleep hormone melatonin. It’s during the latter phases of the intermittent NREM sleep (non-rapid eye movement) that the body restores itself, among other things by releasing growth hormones. It’s in these stages of slow brainwaves (delta) that the body is at its most peaceful. During REM sleep we dream, and this is important to our psychological health as dreams help us process life’s mental challenges. We tend to wake up more easily during REM sleep which is probably why it’s so hard to sleep during the early morning hours when this occurs. The pain of FM can result in disturbances in the quality of both of these, but most of all in deep sleep which seems harder to attain, probably because it’s a deeper state of consciousness and one in which the nervous system really needs to be relaxed. In people with fibromyalgia the nervous system is probably not only incapable of dealing with pain signals, it is also unable to “turn itself off” the way it’s supposed to when you go to sleep. The sympathetic nervous system seems to be dealing with a fight and flight response at all times, and this state of stress is obviously exhausting to the system.
THE GOOD NEWS: WHAT YOU CAN DO!
As most of you know, sleep hygiene is not the ultimate answer to chronic insomnia. However, there are some things we should try in order to facilitate sleep. The following is a list based on my own experience of various things we can do ourselves.
Your bedroom:
Make sure that your bedroom is clutter free. Make it into a really cosy sanctuary with lots of soft cushions, a fluffy down duvet and good quality bed linen that preferably has no synthetic fibre in it. If you're considering a memory foam mattress, remember that it's plastic and loaded with chemicals. Don’t use the room for any activities other than sleep or sex, and especially not for work – you want your mind to turn to sleep the minute you step into the room. Keep fresh flowers or potted plants there if possible.
Make sure it is dark enough (get black out roller blinds), and that it's neither too warm nor too cold (cool is good).
If you feel so inclined, arrange your room according to Feng Shui practices. For instance, your head should face the East, you should not have mirrors facing your bed and strong colours (e.g. dark red) can be stressful and bright colours (e.g. yellow) engage the mind. Light blues and greens are soothing.
A sense of security is really important. You need to address the emotional issues that may make you feel insecure as well as making sure your bedroom feel safe (sleeping on the ground floor could for instance cause subconscious stress because you might feel that someone could come in through the window while you’re not awake). Try and feel that nothing out there is out to get you, or that you are surrounded by benevolent forces that keep these negative energies at bay while you sleep. Feeling vulnerable is not a crime.
Possible remedies:
The old adage about milk and cookies or a sandwich before sleep is correct. Don’t eat too much. You could try some herbal night tea but beware of having to pee during the night!
Alcohol can be bad for quality of sleep and should not be used on a long-term basis, but an occasional glass of wine or beer can be helpful in calming the nerves. Alcohol is often badly tolerated by people with fibromyalgia.
Lavender oil (make sure it's essential!) can be burnt in an oil burner or sprinkled onto something close to your nose.
Take a magnesium supplement for the sleep and vitamin B to help restore the nervous system. Remember that your brain consists of fat and so it’s important to eat cold pressed oils and Omega 3.
Practical solutions:
You might need to wear ear plugs. Get cheap ones online – the T-shaped foam ones are the best.
Consider getting an alarm clock that wakes you up by turning on bright light.
Bad sleep teamed with a lack of exercise is guaranteed to make you feel sluggish because your body has not been able to deal with waste products properly, so make sure you get enough exercise in the daytime, for instance a half-hour walk and/or 20 minutes of work out during which your heart gets going for a few minutes. Do stretches mindfully, bringing awareness to your whole body.
Meditate before sleep. Focus on your breathing, for instance. It’s possible to slow down the brain waves through relaxation practices, even as far as mimicking deep sleep (equalling delta brain waves, the third and last level of relaxation). So at least in theory you could get deep rest without sleeping. However, this is not the same as just lying around in some half-conscious state of mind, which only corresponds to the first or second level of relaxation. Real meditation is a very deep experience and takes time to learn.
Try the following relaxation technique. Lie on your back with your left hand on your tummy just below the navel, and your right hand on your chest. Breathe as slowly and deeply as you can and feel how your abdomen and chest are moving. This connects you to your body while you’re also in a sense giving yourself love and healing through your hands. The meditation is complete when you can focus your attention on one point while at the same time being aware of your breath and how your hands are warming your body. Your thoughts will gradually subside and you should feel wonderfully peaceful. Be patient with yourself.
If you have a helpful partner, he or she could stroke your back while you gently fall asleep, especially when you’re agitated.
Qigong and Tai Chi are helpful in tuning in with your body and calming the mind. When you’re stressed, a moving meditation like this may be easier to perform than a sitting meditation. The practice that I have learnt (www.zhinengqigong.eu) is easy to do and especially useful for people with difficult conditions.
Lying on a Swedish Acu Mat, (other names include Chi Mat, Shakti Mat, and Bed of Nails) for half an hour before bed helps me feel more relaxed. The spikes increase blood flow and may stimulate acu points and the creation of endorphins – often great pain relief for those with fibromyalgia. Your partner could stroke your body at the same time, for instance the middle of your chest and your tummy while you’re lying on your back – this combination can be very effective stress release when you’re wound up. It will be a bit difficult to get started but you soon get used to the sensation.
You may have heard that it's best to get out of bed for a while if you can't sleep. This works for some people but for others it only means that it's harder to get back to sleep. Find out what works for you but remember that worrying about your sleep is the best way of avoiding it.
Going to bed at the same time every day is an important thing to strive towards even if the mind may make all sorts of excuses to avoid it. One problem could be the feeling of not wanting to get up the following day, and so you postpone going to bed. Try and counteract this by sticking to the schedule and finding reasons that make getting up in the morning into a more pleasant experience. It could simply be having more time to wake up and having something nice to drink or eat that you can look forward to.
Consider changing your sleep schedule. However tempting it is to stay up late, going to bed reasonably early should allow you more time in the morning to waking up. This may have an effect on your level of relaxation in the morning, thus allowing your body to get into a more restful state.
It really is best not to watch engaging action movies before bed as they will trigger your own fight and flight response, but a neutral documentary can get your mind off your daily issues. For some, reading a boring book helps but in my case it makes me have to focus and so it has the opposite effect. Looking through a magazine and dreaming about a beautiful home seems like a better option. In general, it’s better not to allow books or a TV into the bedroom.
Whatever is on your mind needs to be dealt with, so write it down or settle an argument before sleeping. Seriously consider cutting the cord with people who distress you on a permanent basis. Do whatever it takes!
Sometimes, soft music or audio books can be comforting and help you drift off to sleep.
Sleep tight!
Copyright © 2011 by Vivi-Mari Carpelan
Read about another all natural sleep aid
here!
The longer article about insomnia
here.
