The most difficult thing about chronic pain

I found the most difficult thing about chronic pain was that it turned me into something I didn’t want to be. Perhaps my personality type would always have meant that I was going to be super-organised and highly motivated but chronic pain resulted in me becoming very tense and angry as I attempted to control factors that I thought would minimise the pain. I lashed out at those I loved most and this only made me feel guilty that I was not the mother and wife I had dreamed I would be. This grew into a deep sadness about myself. As time went on and the pain only grew worse I felt trapped as all my efforts to overcome it were useless and the medical profession seemed to be at a loss to help me.

When I look back at myself now I am amazed that I managed to do as well as I did. I know that inwardly I was putting my children’s and husband’s needs before my own while all the time I was longing for someone to come and nurse me. Perhaps the pressure to keep caring for my family kept me grounded. I simply did not have the choice to cave in to sorrow. And anyway I did so love them! I did so want to care for them!

Certainly by the time I presented at the first Pain Clinic – after about 18 years of increasing pain – I think was showing the psychological strain of trying to rise above my condition. I was confused about what was wrong with me and I seemed to be hovering perpetually on the edge of break-down.

stretched to breaking point

stretched to breaking point

 

Recently I watched a program called *The Secret World of Pain, a documentary produced in 2011 by the BBC program ‘Horizon’. The thing that most stood out for me were the last 2 pain sufferers. One was crying almost continuously, as if begging for pain relief. The other was holding back a lake of tears but when she experienced pain relief she opened the gates little by little so tears could flow.

In an instant I recognised myself and what can happen to humans who are subjected to relentless pain from which their minds are unable to rest. When you are the person in pain it feels as if you are being heroic by not crying too much and yet the tears you do release seem to be too much for others to cope with. I’m not talking about feeling emotional after only several months of pain – in 1989 when one side of my lower back and leg first became inflamed I was the very picture of optimism. I soldiered on with 5 young children, a husband whose work was demanding and a faith that God would help me sort it out.

But when the pain has gone on for ages, when the pain is often strong and causes sleep deprivation, when no treatment seems to alleviate it and others have exhausted their efforts to help THEN it is extremely difficult to maintain emotional equilibrium. I have cried in all manner of ways– sobbing quietly on my own, hysterical crying, a few tears filling the eyes or sliding down the cheeks, crying in the morning, crying in the evening, crying at anytime – even in cafes because I’ve been beyond caring how I look or how it makes others feel.

And then I stopped crying (well almost)! Because it didn’t change the pain. And sometimes it even made the headaches a lot worse. Also, why cry, when the people who love you can’t do anything more to help. It seems better to spare them some of the agony. But at the back of my throat there was a hurting sensation as if I was holding back a river of tears.

I didn’t want to have the pain but I didn’t have a choice. I simply had to learn how to be a loving person as well as carrying the pain at the same time. My secret is that God kept speaking to me as I would read the Bible in the mornings – somehow I was able to draw strength through spending time with him as my friend. It wasn’t that he spoke to me a lot about dealing with the pain, rather that he was able to concentrate my mind and energy on other thoughts, hopes and plans. I still felt like I was pleasing him and this gave my life such meaning and purpose. And by daily experiencing his close presence it didn’t feel as if I was alone while in pain or that he didn’t care about the pain.

Nowadays he has given me so much to alleviate my pain that I can never be grateful enough. And I haven’t lost the love of my family as I have seen happen tragically to others when they have been overtaken by the misery of constant pain.

There is a time to cry and a time to refrain from crying. There is a time to push through for medical help and a time to wait. But there is always a time for meeting with God. And God will give me what I need today to deal with this day.

Two pale-headed rosellas enjoying the blue berries on a dianella.

2 pale-eahed rosellas enjoying the blue berries on a dianella

Look at the birds … your Father in heaven feeds them day by day (Matthew 6:26)

 

*  The Secret World Of Pain, a BBC documentary which can be watched at

https://www.youtube.com/watch?v=75wkm9NTOb8

 

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Exercise works

Exercise may be the last thing you feel like contemplating when your body is in pain. So let me tell you I would be one of the last people on earth to recommend exercise UNLESS I had found that it really reduced pain. Exercise on its own will never be enough but it can make significant inroads into your pain levels.

Strangely enough I can now remember the different types of exercise I have tried according to places I have lived. In Whyalla, South Australia I began with walking. I would get up before the children were awake and walk a number of blocks. My husband persuaded me to go to circuit classes at a local gym and there I found that the cool-down stretches made a big difference to the pain I was experiencing. This was followed by freestyle swimming at the Whyalla Recreation Centre. I would pay a babysitter to come at dinnertime and off I would go to swim a number of laps. By the time I got home the children were in bed, I would eat dinner and take some Mersyndol (Codeine plus antihistamine) – otherwise I would develop excruciating headaches in the night. I kept up with the swimming regime because it really reduced the pain in the lower half of my body. Much later I learned to swim with a snorkel and mask because this stopped the need to turn my head which brought on the headaches.

Some memorable backdrops to exercising have been

  • Mt Victoria in Devonport, Auckland, NZ.  Walking the dog on the circuit of this mount with panoramic views of Hauraki gulf and the green-blue waters of the harbour.
  • A small secluded beach near Whyalla. Watching multitudes of rainbows fragmenting in the sea around me.
  • A heated olympic outdoor pool in winter in Perth, W.A.. Getting there early to watch the rising mist as the pool covers were removed, breathing in the clean crisp air.
  • The bush pathways around Claremont, Perth.
  • The pathways around the New Farm Park, Brisbane which connect to paths along the Brisbane River.
local landscape whilst walking

enjoying the local landscape whilst walking

Somehow these surroundings have the added dimension of improving my mental state which can be overloaded with pain management.

Altogether, as well as walking, swimming and going to the gym, I have tried PUMP™, Pilates, Yoga, Jogging, Power Walking and Denise Austin aerobic videos – now replaced by other exercise DVD’s such as Increase Your Flexibility with Hun Yuan Tai Chi Chan Si Gong Foundation Exercises (see http://www.taichiacademy.com.au/products.php). Lately I have improved my backstroke swimming and I am currently learning more about Walkactive™.  (Learn about Joanna Hall’s method at walkactive.com)

I have found out for myself that Pilates and Yoga are too difficult for my body and instead of getting a nice deep stretch I can easily strain the muscles resulting in  a long episode of pain. Likewise jogging is too jarring for my body and can leave me with terrible headaches. Conversely ordinary gardening and housework are insufficient to bring about pain relief.

Another important tip I have learnt regarding myofascial pain is to stretch my muscles after the exercise not before. If you want to walk or jog or swim just start off at a slow to moderate pace and gradually build up speed and intensity. Then your body will be ready for deeper stretching at the end of your session.

Let me give you an example regarding the benefits of exercise. Twenty years ago I was attending a *fibromyalgia support group which a rheumatologist had recommended. A speaker talked about the idea of helping this condition by resting. It sounded quite attractive so I put it into practice.  I was running a household with 5 children, and my husband and I were preparing to go away for his long service leave. A few weeks had passed without exercise and I now felt I needed to clean the house  for my mother who was coming to mind the children. After a couple of very intensive cleaning days (barely sitting down) the bottom of one of my feet started to burn. Whenever I put my foot to the floor I experienced significant pain to the extent that I got myself some crutches. I was now forced to spend quite a bit of time resting on the bed. A couple of good friends came and helped with the chores til my Mum arrived. But the more time I spent lying down the worse my whole leg became – sometimes feeling a bit cold or heavy.

I realised that I needed to do something or I would not be able to go on this trip of a lifetime. So I began swimming in a heated pool at Takapuna (I hope those damp change rooms have been upgraded!). This was the best strategy – not to keep staying on my feet as that only made the pain in my foot worse but to keep the leg moving and active in another way. I kept this up for a few days more when my Mum arrived and thankfully I was able to get on that plane. [Years later I learned that the foot pain was stemming from the buttock/pelvis area and the swimming had mobilised that area.]

Obviously the lesson I learned from this was to KEEP on exercising, forget resting – and now if a certain part of my body gets stirred up I still need to keep it in motion but not with the activity that caused the area to malfunction. For instance I currently need to do gentle exercising of my shoulder but I mustn’t keep pulling out weeds as this caused the shoulder to flare up – admittedly we live on a large property and I have been pulling out thousands of weeds so that the land will return to native bush. I have also had to switch the arm I use for the computer mouse as that also fires up my shoulder even through it wasn’t the original cause.

Another lesson I have learned is to take medication with breakfast and wait an hour or so for it to take effect before I start exercising. And I exercise most days of the week.

Over the years I have settled into moderate exercise with many repetitions of the same movement for a number of different muscle groups, while maintaining a good posture. I suppose this is best described as exercises that tone and stretch. I am grateful in particular for  a DVD that provides 10 minute workouts to shape and strengthen the abdominals, the thighs, the buttocks and the arms & shoulders. I find that most exercises therapists recommend for me after treatment are already embedded in routines on this DVD.

Cindy Whitmarsh will be forever young to me. XXX

Cindy Whitmarsh will be forever young to me. XXX

All exercise DVD’s come with a disclaimer and I stress that I am passing on what works for me but you need to work out for yourself what type of exercising suits you best (Disclaimer). You need to find ways of exercising that you actually enjoy and that suit your own temperament or else you won’t be motivated to keep exercising. So don’t be afraid to gradually build up an exercise regime – it will give you pain relief and also stamina to cope with the condition. You may as well have the benefit of looking fit!

* Other doctors have since dismissed the diagnosis of fibromyalgia.

Chill out!

If ever I get into a dreadful episode where one part of my body will not stop ‘burning’ then I can switch off the pain for a while by applying an ice pack.

Ice can be used if you twist an ankle, if you get a bee sting, after chiropractic treatment and after some operations. Many health professionals recommend alternating ice and heat for inflammation and only applying them for short periods e.g.http://thephysiostudio.com.au/health-tips/ice-and-heat-application/ . 

An eHow article identifies whether heat or ice or both are suitable for different types of medical conditions – and quotes orthopedic surgeon Dr. Stephen H. Hochschuler that ‘ice should… not be used for patients who have rheumatoid arthritis, Raynaud’s Syndrome, cold allergic conditions, paralysis, or areas of impaired sensation’. This article also says that heat is most often used for chronic pain conditions such as arthritis. So be warned by my Disclaimer as I want to explain what has been an effective tool in reducing my pain but it is outside the above medical advice. 

It started when I did not have access to any of the electrotherapy devices I will describe in other posts. I could sit in my own special chair (which I dragged from home to many social occasions) and in my own special seating in the car to keep my pain levels low. But holidays posed excruciating problems with seating on plane flights (I would stand up when possible), in motels, restaurants and hire cars. Sitting in these would set up an unremitting burning sensation in one buttock and leg. When we decided to fly to Queensland for a family holiday I became absolutely desperate. How could I manage the pain so that I wouldn’t spoil the holiday? The thought came to me to use an ice pack so that I could numb the pain. In this way a campaign began to freeze my butt off!

The ice treatment worked so well that when I returned home I started carrying a small esky wherever I went. The esky contained several icepacks and an ice brick with a tea towel or two for wrapping up the icepack. The tea towel meant that the ice pack didn’t directly touch the skin (or else you can get an ice-pack burn!). And the more I did this, the less I experienced pain – which lines up with the one principle for reducing pain : the more pain relief you can provide the more the nervous system is damped down and the pain levels are lowered. It felt like I was helping the entire buttock area go to sleep and forget the pain. 

old styrofoam esky complete with ice pack covers

old styrofoam drink cooler complete with ice packs & covers

Ice is never going to be a complete remedy. Sometimes the pain in my butt has been too strong for the ice to control. But it is a good way to help stabilise the area and to use in conjunction with other tools. I had already noticed years ago when swimming in the surf and diving under the waves that the chilly water soothed my headache. Sometimes I will tuck an ice pack up under the base of the skull on one side or drape it round the back of  my neck and shoulders and this can mitigate a few headaches. If you’d like to try a safe alternative you could consider rubbing something such as Mentholated Ice Gel (widely available in supermarkets and pharmacies) around your neck and shoulder tops. Of course if you wake up one day and your neck is stiff and you can’t turn your head then draping a hotpack around the back of your neck is best. Don’t use ice in that situation.

As a matter of fact, heat is one of the worst things that can really ramp up the level of pain I am experiencing – such as working out in the garden for a couple of hours in high heat and humidity. I can almost guarantee that I will activate high-level pain when I have a spa (buttock-ache) or sauna (headache). One musculoskeletal specialist said that this reaction to heat is just another indication of how my myofascial pain is intertwined with my nervous system.

You probably don’t have this sensitivity to heat but you can still trial this ice treatment – but only do it for 20 mins – and track whether cold (or heat) alleviates your pain. I know that my first instinct years ago was to reach for a hot wheat pack so I wanted to mention this basic type of pain relief in case you have never tried ice.  You don’t need to adopt my  practice of constant ice packing but I can say for myself that it has never given me an adverse effect in all those years. It has actually helped me to chill out mentally too – my mind can switch off from the pain for a while.  Many is the time I have gone to bed not with a hot water bottle but with an icepack wrapped around my buttock!

NOT snug as a bug

Headaches are the hardest

I have accumulated a number of electrotherapy devices to reduce pain but I must admit that I cannot give unqualified support to these aids when it comes to chronic headaches. Thank goodness for the effective medication which I will describe.

I have been given various diagnoses such as cluster headaches, non-classical migraine, neuropathic pain, old whiplash injury, the C2 joint becoming locked, restrictive movement of head caused by postural weakness/ muscle rigidity/ joint stiffness in upper and mid-back, shoulders or neck which can disturb the occipital nerve,  hormonal fluctuations that causes rigidity of upper back which impacts on my neck, fibromyalgia,  aggravation of myofascial points in my shoulders …whatever!!!

My headaches are easily exacerbated by heat, by working on the computer, by sleeping on the wrong side at night, by chiropractic adjustment, by menstrual patterns, by expending a huge amount of energy, by turning my head whilst swimming, by travelling long distances, by emotional tension, by looking at electronic screens for too long, by lack of sleep, by BEING ALIVE!!!

a headache is starting

stuck on public transport when I need to get home to bed NOW!

I am interested to know that there is now a theory* that migraines involve neural activity which (if I understand this correctly) would fit with my whole condition so that the headaches are just one painful manifestation of nerve disturbance which I also experience in other parts of my body. A specialist explained to me that the overly sensitive nervous system is at the base of why the muscles, connective tissue and nerves become so aggravated.  Over time repeated episodes of pain lead to entrenched and faulty reactions in the body. Again, if I understand it correctly, this malfunction of the nerves works in conjunction with the malfunction of soft tissue around the skeleton to produce pain that perpetuates itself.

Older medications for migraine (e.g. Ergodryl) were not as effective at reducing the pain for me or took a lot longer to work and required more than one dose. Even then I would spend inordinate amounts of time lying in bed with a cold washer covering my left eye and that side of my head. Sometimes I would still need an injection to stop the vomiting and rushing to the toilet. As I write this I feel myself  re-living how the minutes passed so slowly as the pain kept jabbing into the back of my eye … the waiting and waiting for the driving pulsating pain to subside or be obliterated by merciful sleep.

 ### throbbing eye ### 

throbbing eye

jab#jab#jab#

Thankfully Sumatriptan has intercepted this torturous occurrence and within 45 mins of taking this medication I can feel the pain subsiding. Of course you cannot simply shop for this – it has taken years of pain and various treatments to arrive at the effective medication I now take – your headaches may not be identical to mine so keep  my Disclaimer in mind.

There is one thing I can recommend for the reduction of headaches for fellow sufferers – swimming! especially back-stroke!  as much as possible! It seems to work for me in 2 ways. 1. The constant coldness of the water on the back of the upper body and head dulls the pain and generally seems to calm the nervous system. 2. The repetitive but smooth action of the shoulders relieves the deep clenching of one of my shoulders and the tension in the spine of my upper body. I am not talking about tense muscles which massage can ease – yes the muscles are tight, but this is a lifetime of restriction which operates continuously on the structure and fabric of my body. An extra tip about backstroke – while moving through the water lengthen out the back of your neck by looking at your toes splashing but don’t lift the head, instead, tuck in the chin. Somehow swimming (every 2nd day)** tones the body so that it reduces the number of headaches I suffer. Swimming also provides greater alleviation of pain than having a deep massage – plus it is something I can do for myself! I hope  you can think of another activity that will reduce your headaches if swimming is not possible.

* http://www.ncbi.nlm.nih.gov/pubmed/11359360

** On alternate days I do different types of exercises that are more effective for the pain in my lower body.

### pulsing eye### Courtesy http://www.creativecolours.org/freebies.html

Finding the right pillow

Hi there Fellow Pain Sufferers,

I acknowledge that it’s been a while since the first post – I have just been through a rough episode of headaches when I tried to find a new pillow. The old one is wearing out from several years of compression. It was never going to be a long-term solution anyway. I had reversed an egg-foam contoured pillow as I found the foam on the underside to be softer and less dense. However that pillow manufacturer no longer makes that  pillow as it prefers, naturally enough, to make a pillow from sturdier, longer-lasting foam.

It’s difficult to explain to people selling bedding what I need in a pillow.

Yes, foam is good.

No, not memory foam (which feels like it is  moulding tightly around my head).

Yes, soft.

No, some soft ones can compact into a hard brick under my head.

Yes, it needs to be low as otherwise it can feel like my neck is being stretched higher than it wants to go.

No, some low ones are still too high.

And it all depends on the surface of the bed I’m lying on – if the bed is too soft that is enough to make some low pillows seem too high and my neck feels under pressure again.

If it all sounds as if I’m being too fussy it only takes a short time lying on the wrong type of pillow before I wake up in trouble. Both my eyes become bloodshot and narrowed. I am going to need some serious medication to recover.  It isn’t a normal case of needing to take a week or so to adjust  to a new pillow. If it causes my head to feel rigidly compressed  then I will never adjust to it. I don’t know whether it’s the nerves, the blood vessels, the muscles- something feels like it is being pressured – all I know is that I have got to get off that particular pillow.

Needless to say I have a huge collection of pillows for visitors.

Last week I got pretty desperate for the umpteenth time when I had very carefully worked out with a chiropractor what would be the next most suitable trial – only to wake up in a very short time with the kind of glittering headache that a migraine tablet alone can deal with. In desperation I cut up some foam and combined it with a low feather pillow, I tried a child’s first pillow, I cut foam off a homeless person’s bed (only a tiny amount!) in case it was of a less-dense variety, I googled other people’s solutions for pillows which support the head but do not trigger headaches …

Eventually I looked back at a pillow I had as a teenager which I had saved for just such an occasion. I googled the words on the label and eventually tracked down a manufacturer in the U.S. (I live in Australia) and arranged through Amazon to order that type. It arrived a few days ago and I am fine. When I awoke later during the night without head pain I felt a deep level of relief which has lasted for a number of days.

my old disgusting pillow

This information may be totally useless to you as I realise that my head is extra-sensitive – I never lie on my left side even when I have a suitable pillow as it stirs up a headache on the left. And I never attempt lying down unless I have taken pain medication for the nervous system. Consequently I sleep on my back or on my right hand side and I don’t take naps or lie on a lounge during the day.

For the record the pillow is a Dupont Dacron II Polyester Hollofill. **  If you have found a pillow that works for you, stick with it. If you need a new pillow in the future and you were not satisfied with your old one then you might consider this pillow. I would only write this blog if I thought that some of my ways of alleviating pain were transferable to others who suffer with chronic pain. If the diagnosis ( I am referring to chronic myofascial pain with a component of nerve disturbance) is correct then there have to be common physiological changes that can be addressed in the similar ways.

**Disclaimer