Monday, 28 June 2010

chronic pain - medication v meditation

if you have read some of my other posts you will know that pain plays a big part in my life. due to me/cfs/fibro everyday my muscles and joints are achey and sore - a similar feeling to when you have the flu. some days are worse than others with certain parts of my body felling pain that may be throbbing, hot, deep or piercing. sometimes even just typing at the computer for a while can make my pain worse or bring on muscle weakness. (impaired ability to sustain force during and after repetitive muscle exercise) other times too much activity like bending, standing too long or walking can bring on a 'flare up' in my pain. this will be more than familiar to the majority of people affected by me/cfs/fibro - we can all push our activities a little too much (especially if we have nobody to help us with day to day things that need to be done, or we are enjoying an activity) and pay for it later.

after a long time suffering without much help, my doctor eventually sent me to the pain clinic at stobhill hospital. (like most nhs services there was a long waiting list) i had already tried amitriptyline which helped slightly but left me feeling groggy and totally out of it all day. the dr at the clinic prescribed gabapentin, building up the dosage over 6 weeks. this offered me no pain relief but gave me more side affects that were awful including yet again that groggy feeling, this time with depression thrown in. (if it did not trigger depression it most certainaly made it worse)at my latest appointment last week, i was told i would be prescribed yet another medication to try (this on will be similar to amitriptyline but fingers crossed, should have less side affects.) i am also wary of long term use of painkillers like co-codamol which i am meant to take daily, but don't always help relieve my pain anyway.

so i have also been looking into other ways that may help my pain. i tried accupuncture sadly without any success, although it has been known to help many others. the nurse at the pain clinic told me that a tens machine may help, however it can only be used in one area at a time and my pain is more general. it still may we worth discussing this with my gp. when using a tens machine small electrical pulses are delivered to the body via electrodes on the skin. this is thought to affect the way that pain signals are sent to the brain, if pain signals are blocked we may experience less pain. i have also read about natural pain helpers including supplements of magnesium, vitamin b12, malic acid, omega 3s and vitamin d. i have discussed these with my own gp and dr at the homeopathic hospital and both say that they don't see any advantage in taking supplements. this is a bit of a surprise to me, and i am not sure i agree that i get sufficient nutrients in my diet alone, especially when i am often to poorly to feed myself properly! on a limited budget, like many people affected with me/cfs it's not easy to stock up with proper supplements.

the other avenue i have explored for pain relief is meditation. i have previously mentioned this is one area with lots of research showing benefits for chronic pain. i have been reading'living well with pain and illness' by vidyamala birch, founder of breathworks, and i am planning to go on one of her courses later in the year. vidyamala herself has suffered from chronic back pain for over 30 years, now a wheelchair user she shows that by developing a calm, mindful awareness of your body in each and every moment it is possible to let go of frustration and distress. this book is an inspiring, practical guide to living with and managing chronic pain and illness. vidyamala says:

''its easy to get locked into aversion and distraction if you're living with pain as a fixed and hard 'thing'-a monster lurking in the shadows that dominates your life because you fear it. that's where mindfulness comes in. the awareness you can develop through mindfulness is steady, calm and kind, and it's subtle and precise enough for you to notice the different elements of an experience. paying attention to a painful sensation, for example allows you to investigate it, to explore it's texture and to see it for what it is, rather than what you imagine it to be''.

i am also a big fan of the wildmind which has many articles about the benefits of meditation for chronic pain like this one. i have found that through regular mindfulness meditation i cope better living with daily pain, and for that reason would encourage anyone who who struggles with chronic pain or illness to practice it.

Saturday, 26 June 2010

help to heal

before i pop back to the library with this book 'healing without freud or prozac' by dr david servan-schreiber i wanted to give you my thoughts on it. it was on the recommended reading list for people attending the WEL course. i found this book very interesting and would be a good read for anyone interested in well being, even though it was written for those suffering from depression. as we know depression can be a symptom of cfs/me normally due to the lack of support, change in lifestyle and day after day feeling exhaustion, pain and a host of other symptoms. this is what has happened to me recently so i was interested to check out this book to see what i could perhaps try to help myself.

in this book dr servan-schreiber discusses 9 self healing treatment methods, each method in its own way supports the body's constant attempt to foster coherence, to recover its balance-

''these different methods work in synergy, they all strengthen each other and the parasympathetic nervous system. in chronic conditions modern western generally helps only with crisis, it does not help the underlying condition. a chronic illness arises through complex interactions between body systems that have started to malfunction. to overcome a chronic illness, we need to capitalise on all the mechanisms of self healing to which we have access. each one of the following methods has been studied individually and found to be effective, the most effective treatment is to find a combination that is best adapted to each person, the combination that has the greatest chance of transforming his pain and giving his life his energy back''.

1. practice heart coherence. this is about learning how to control our emotional being. throughout our life's we all develop our preferred method of self soothing during times of increased stress, like relying on booze, cigarettes, drugs etc we would be in better shape to capitalize on th self healing abilities of the emotional brain and of the body to reach a balance between cognition, emotions and a sense of what life can provide. to practice heart coherence begin by taking two deep breaths, stay focused on your breath and pause for a few seconds in between breaths. unlike eastern meditation practices in which you stay focused on the breath it works best to centre your attention on the region of the heart after your breathing stabilizes. then imagine you are breathing through your heart (or through the centre of the chest if you do not yet feel your heart directly. imagine when you breath through your heart that each intake of oxygen nourishes your body and each exhalation rids it of the waste it no longer needs. imagine that they are helping your body make the most of the gift of attention and respite it is receiving from you. then become aware of the sensations of warmth developing in your chest, encourage your heart by drawing on a feeling of gratitude or love whither towards another being, an object, a peaceful scene, a memory of an nice experience. the very act of recalling a positive emotion or imagining a pleasurable scene rapidly provokes a transition of heart rate variability towards a state of coherence. this practice can in turn benefit the immune system. the heartmath institute is dedicated to the research of cardiac coherence. (i have practiced heartmath meditation however i do still prefer mindfulness meditation - i will continue to practace both.)

2. address painful memories. do you have painful memories when thinking about past events that continue to trigger painful feelings? if thinking or talking about them brings tears or feelings of anger then it hasn't been resolved.any memory that you actively try to suppress is generally one that left a scar on your emotional brain. old wounds can continue to condition how we experience life. a few sessions of EMDR can clear out the consequences of old suffering and give rise to a new and more harmonious perspective on life. apparently a specially trained phychiatrist makes people move their eyes back and forth in imitation of the way our eyes move when we are dreaming while we evoke an image of the memory. (i would imagine this would be quite expensive but sounds really interesting)

3. manage conflict and 4. enrich relationships. it is important to identify chronic conflicts i present relationships. if they continually pollute the flow of our emotional life, they can end up blocking our mechanisms of adaption and self-healing. dr servan-schreiber tells us in order to effectively assert ourselves through healthy emotional communication we should follow his six point STABEN cue card for handling conflict: S source - make sure you are dealing with the person who is the source of the problem and has the means to solve it. T time and place - make sure that the discussion takes place at a favourable time in a protected, private space. A amicable approach - make sure the person feels at ease with your very first words, preferably the listener's own name. B objective behaviour - get to the heart of the matter, explain the behaviour that motivates your grievance while description to what happened. E emotion - you must say what emotions you feel as a result, like 'i felt hurt'. N need - what need do you feel that has not been recognised? i.e 'i need to feel like i matter to you'. (i plan to try this method out while talking to my mother! i will let you know how i got on!)

5.maximise omega - 3s. consider re balancing your diet by increasing fish content by eating more mackerel, herring, tuna etc (or veggie sources of omega 3 fatty acids - walnuts, spinach or flax seeds) and reduce unhealthy fats. (i have started taking supplements daily and will be eating more sardines etc!)

6. get high on exercise. 20 to 30 minutes three times a week can do wonders for anxiety and depression, pick an activity you enjoy, if possible join a group of like minded exercisers for motivation. (sadly for people with me/cfs this is not an option. i have to pace myself as even small amounts of exercise can make my symptoms much worse. (although some movement is vital to prevent further muscle wastage) for the moment i walk and do gentle yoga stretches for short periods each day if possible and i dream of the day i can get high on exercise again!)

7. wake up to the sun. our body's benefit from waking up more peacefully in the morning. all that is required each day to reset our biological clock is to replace our alarm clock with a dawn stimulator. (i would love to purchase one of these in the future)

8. tap into your meridians. in tibetan medicine emotional symptoms and physical ones are simply two sides of the same thing: an imbalance in the circulation of energy, the qi . acupuncture treatments can address this re balance. can be good for physical symptoms such as pain. (sadly a course of treatment did not help my pain - read about my experience here -but it works for many people)

9. seek a larger connection. for most of us a true sense of peace can only be reached once we have found out how we can contribute to the community that we live in and feel comfortable with the role we have in it. those who have the good fortune of being connected this way often feel propelled much beyond a simple well being: they feel that they draw their energy from what gives meaning to life itself, in good times and in hardships. (i felt this way for years when i helped out at a soup kitchen)

to find out more about this book visit the website which contains more advice and useful addresses.

biomedical research

last thursday myself and many other folk affected with me/cfs symptoms attended a meeting in the south side of glasgow about the developments and advances in biomedical research and treatments of this illness. cathcart me support group welcomed dr abhijit chaudhuri, consultant neurologist at the essex centre for neurological sciences in essex. renowned as a caring researcher of me/cfs he formerly held the position of clinical senior lecturer and consultant neurologist at the university of glasgow and the southern general hospital.

i took a few notes while he spoke and here is what i jotted down:

there is still no proper understanding of the condition, although there is no blood test to show it exists diagnosis is still possible, the severity of fatigue and it's impact on quality of life are similar to ms, emotional issues such as depression, muscle pain weakness and sleep disorder contribute to overall fatigue but are not the cause, it has been over hyped that patients are depressed - this is not unnatural in patients who can't work or have a normal life, ms is not thought of as depression but affects sufferers the same amount, different virus's are linked-these can trigger me but are not the cause, chronic fatigue and depression are different conditions, intervention for depression does not cure me, different stressors can trigger me - virus, trauma etc, there is no primary muscle disease in me,drugs for chronic pain, sleep problems and depression may improve quality of life but are not a cure, controlled trials for any treatment is necessary as symptoms may become better or fluctuate, some neurologists are now interested in me as they specialise in infections although most have stepped aside - this may change the way it did for stroke patients, nhs has failed patients as it is not practical for the government to care for a complex condition like me, could me be genetic? why are some people prone to viral infections.

dr chaudhuri then detailed some autopsy's carried out on me sufferers (i think they must have had very severe symptoms as many of them committed suicide-this highlighted desperation and lack of support from the medical profession) from them one major link stood out (seen in all but one case) and that was inflammation of the spinal cord-dorsal root ganglion cells (that's what the above photo is of). these could be a marker of previous infection like chicken pox. these cells however can't be seen through scans, only through extraction. this makes it that a controlled study should take place. maybe if this was shown to be the cause then anti inflamatory injections could be used as a treatment.

the only supplements that dr chaudhuri discussed were vitamin d and essential fatty acids for muscle pain.

i left (probably like the majority of others) feeling sad. everything that was discussed except the information on dorsal root ganglion cells was already familiar to me through my own research and understanding. i am taking fatty acids (omega 3)and will purchase some vitamin d as i have heard quite a bit about it recently. i guess i was not expecting to hear about a major breakthrough, but it would have been nice to come away with a bit more hope for myself and others with this illness. i did however come away feeling lucky - i had spoken to one woman who's daughter had been confined to bed for years. most of the time i get by and for that i am truly grateful.

Tuesday, 15 June 2010

hello again!

hello! im back again at last! i have been busy on my quest for wellbeing and for the last sixteen weeks i have been on the WEL course run by glasgow homeopathic hospital and intended for people with cfs/me symptoms. i have mentioned it here already but only gone into a bit of detail about some of it. it was really in 3 chunks, the first with a doctor, the second with a physiotherapist and the third with two more doctors. the last part was by far the most beneficial to me. this eight week (optional) MBCT course has been truly amazing for me in many ways, so i would like to tell you a wee bit about it here.

MBCT stands for mindfulness based cognitive therapy. this is a type of meditation called mindfulness meditation. meditation is by no means new to me. many years ago i developed an interest in yoga, meditation and buddhism. i learned how through yoga and meditation i could find a retreat from this crazy, fast paced and busy world if only for a few minutes a week. later through buddhist philosophy i learned how to face many of life's challenges and difficulties in a gentle way with kindness to myself and others. along with healthy eating and a bit of exercise i thought i had the perfect healthy lifestyle for my mind and body. when i became poorly with cfs/fibro some of this fell by the wayside. i had no energy (or cash) to attend my normal yoga/meditation classes, and what was the point anyway? i had gotten ill even with 'doing all the right things'!

by going on this mbct course i feel that have once again found a little bit of that breathing space. why meditate? well for one thing research shows that people who meditate may handle emotions such as anxiety and frustration more effectively and may also aid healing and lower blood pressure to boot. the course reminded me that mindfulness meditation is not about 'stopping thoughts' and thinking of 'nothing'. it is listening to your voice, your heart and your breathing and being present with your emotions and body sensations without trying to change anything or judge yourself.

mindfulness teacher and author jon kabat-zinn describes this nicely; ''one way to envision how mindfulness works is to think of your mind as the surface of a lake or of the ocean. there are always waves on the water. sometimes they are big, sometimes they are small, and sometimes almost imperceptible. the waters waves are churning up by the winds which come and go and vary in direction and intensity, just as the winds of stress and change in our life's, which stir up waves in our minds. people who don't understand meditation think that it is some kind of special inner manipulation which will magically shut of these waves so that the mind's surface will be flat, peaceful and tranquil. but just as you cant put a glass plate on the water to calm the waves, so you can't artificially suppress the waves of your mind, and it's not too smart to try. it will only create more tension and inner struggle, not calmness. that does not mean that calmness is unattainable. it's just that it cannot be attained by misguided attempts to suppress the minds natural activity. it is possible through meditation to find shelter from much of the wind that agitates the mind. over time a good deal of turbulence may die down from lack of continuous feeding. but ultimately the winds of life and the winds of the mind will blow, do what we may. meditation is about knowing something about this and how to work with it. you can't stop the waves but you can learn to surf''

not judging your thoughts does not mean being resistant to change. by tuning into how a certain thought makes us feel we can then decide how to deal better with our emotions. it makes us more aware of reoccuring negitive thoughts and we realise that they are just thoughts, not facts. we may be able to deal with problems, illness, relationships better with a clearer awarness of the situation. as the dalai lama points out 'meditation is merely the process whereby we gain control over the mind and guide it in a more virtuous direction'.
on the course we spent time learning different practices including bodyscan, sitting meditation, mindfulness of movement, walking meditation and my favourite - mountain meditation. we got to spend time talking over any difficulties we were having commiting to formal practice and share our progress. we got lots of homework that had to be handed in so this helped keep us motivated.

i think everyone can benefit from meditation no matter how old or healthy. you don't need you be a buddhist or meditate for hours on end. even just a few minutes a day can be really helpful in daily life. in fact we learned 'three minute breathing space' that is good to make you stop, tune into your mind and body feelings and just be. for more formal practice a guided cd is ideal to get you started. focusing on your breathing is the best way to go and when the usual millions of thoughts that come and go arise, just be aware, don't push it away. but ask yourself how does this thought make me feel? what emotions? how does my body feel? now when i feel strong emotions like anger i greet it like an old friend 'hello anger come and sit beside me' (along with frustration, self pity, fear etc). so far it has helped me cope with the onset of depression due to my symptoms and daily stresses due to my lifestyle change over the last few years or so. oh and no need either to sit cross legged on the floor if this is not comfortable, i just use a chair for the time being or lie down. the only thing about meditation that can be difficult is the commitment you need to give mindfulness practice. i am still struggling with this but it is getting easier as i feel the benefits!

during the course i struggled to concentrate due to building works outside my home, the noise has been driving me crazy and by no means perfect for meditation. i asked one of the teachers for advice and was told to make the noise my focus for meditation. as crazy as it sounded it worked!

want to give it a go? you can start by searching for local classes, purchase or borrow a cd and a couple of books and take it from there! let me know how you get on!

SOME RESOURSES: i have borrowed the following from the library and they are recommended reading: full catastrophe living by jon kabat-zinn, wherever you go, there you are by jon kabat-zinn, healing without freud or prozac by dr david esrvan-schreiber (notes the benefits of heartmath meditation) and living well with pain and illness by vidyamala burch. a friend has lent me cd's also narrated by jon kabat-zinn and by vidyamala birch that accompany some of the books. here are some websites to find out more about mindfulness meditation and related research: mind and life, meditation for the masses, mindful purpose and wild mind.