A slow return to the keys

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Nerve problems in my extremities makes returning to the piano after 15+ years much slower, more painful, and much more frustrating than I had hoped. The finger, wrist and forearm fatigue sets in quickly, especially when combined with necessary household chores (cooking, cleaning, hand-washing clothing), and work that requires extended mouse and computer keyboard use.
To try to manage this a little better, so I don't lose motivation I'll be testing some of the following ideas:

• Hot water baths for my hands and arms
  I react well to warmth, especially warm water. It allows my muscles to relax (a bit), and gets the sluggish circulation to flow.
• Massage before and after practise sessions
  Again for a circulation boost, and tension reduction. Important both for fibro and Raynauds symptoms.
• Stretch arms, shoulders, chest and neck
  I hold a lot of tension in these areas, bracing myself against pain. Twisting stretches for the back should also help somewhat. And of course I will regularly stretch fingers, hands and wrists.
• Super-short sessions, pomodoro style
  10 minute sessions, spread out over a day, starting with very few sessions and slowly building up. I need to balance stamina building against preventing too much fatigue. This won't let me play my favourite (long) pieces, but then again, I don't yet have the stamina, strength and flexibility for them yet.

I'll also be following my own more general advice for returning to the piano after a long absence.

9 Tips for Managing Costochondritis

In a place where doors are normally not heavy or open automatically, costochondritis can be managed slightly easier. However, where I am now, doors are normally heavy and not powered. Also most people do not hold doors open for anyone. As my costo is a symptom of fibromyalgia, I can only manage it, trying not to let the costo pain flare too badly. The following are some management strategies that I use, or have used in the past.

• Anti-inflammatory medication
  Occasionally taking ibuprofen or other low dose NSAIDs can help the body deal with a small amount of inflammation, stopping the inflammation from becoming uncontrollable.


• Heat packs / cold packs
  A heat pack or hot water bottle on the middle of my chest does wonders to reduce pain. Coupled with progressive relaxation exercises lying in bed helps me fall to sleep. Some people prefer using an ice pack in the same way.


• Backpacks, not shoulder bags
  Evidence is mounting that carrying weight always on one side can cause costochondritis, amongst other postural problems. I carried my high school bag on my left shoulder, it has been a few centimeters lower than my right since that time. Carrying a backpack on both shoulders helps stop uneven compression of the ribs.


• Use a sports gel or tiger balm
  Another of my favourite pain treatments is to use tiger balm. Menthol seems to warm (or cool) muscles, soothing nerves and helps with costo pain.


• Look for alternative paths
  If some doors you frequently need to go through are simply too heavy or awkward, see if there are ways through with fewer doors, or lighter doors. The door into my apartment block is ridiculously heavy, but there is a lighter back door that is not on a self-closing spring. Or use a chock to keep doors open when possible.


• Reduce heavy lifting
  Lifting heavy boxes, cans, bottles, etc. can trigger a costo flare. Lifting items down from above can be as bad as lifting things up from the ground. Refill smaller bottles from larger ones may help. Buying washing liquid in bulk is cost effective, but lifting such a heavy bottle every time I need to do the washing can trigger a flare.


• Reduce stress
  Easier said than done, but relaxation and stress-reduction techniques do help with pain conditions. A relaxing evening (or morning) bath, listening to music, doing relaxation exercises, taking short breaks or naps can all help. Managing stress is a big component to managing chronic pain conditions.


• Exercise gently
  The worse exercises for costochondritis are those which build strength in arms, chest and back muscles, either using weights at a gym or free weights at home. Some yoga poses that put too much stress on the chest muscles can also trigger a costo flare. Gentle exercise, in a warm-water pool, gentle stretching, tai chi or gentler yoga poses help to release the tension around painful areas, while gentle physiotheraphy treatments help to relax and stretch tight muscles.


• Gentle massage
  A gentle massage brings blood flow to tight and knotted muscles, and relaxes the surrounding areas. Combine this with heat or ice treatment, a sports gel or tiger balm, and gentle stretching and I usually have longer lasting relief from costo pain.

Costochondritis can be debilitating. It takes time and patience to work out which treatments work best for each person - every person is different, and their pain responds differently. Correcting postural triggers, limiting movement and lifting triggers, using relaxation and stress reduction techniques, gently stretching and exercising, work together to keep costo flares at to a minimum, keeping pain at a manageable level.

Vitamin D and chronic pain

Having seen an interesting TED talk on hypersensitivity to pain by Elliot Krane from March 2011 (The mystery of chronic pain), I searched for other TED talks that may be useful for chronic pain sufferers. Unfortunately, although there are a plethora of interesting and inspiring medical TED talks, only a couple touch on chronic pain in general. A TED talk by David Agus in 2010 about treating a patient as a whole instead of focusing on specific measurements of one tiny thing, highlighted that supplementation with vitamins is often done without considering the whole picture. He specifically mentioned vitamin D supplementation, based on blood test results indicating a deficiency.

In 2009, the Mayo Clinic found a link between vitamin D supplementation and improved chronic pain. No one knows in which direction the relationship works, as understanding of brain chemistry is still relatively poor. Further research into this link has not shown anything concrete. Despite this, an Australian medical article suggested vitamin D level testing and supplementation to improve in the longer term muscle strength and bone density, even though vitamin D deficiency is not recognised as a symptom or a cause of fibromyalgia.

Both the Mayo Clinic's information about fibromyalgia and the pain management site by Australian rheumatologist Dr. Littlejohn, a fibromyalgia specialist, do not mention vitamin D levels at all.

However, several GPs and pharmacists in multiple countries have suggested to me that there may be a link between low D levels and pain, before knowing my vitamin D levels were almost non-existent. I think there needs to be much more research into the wider effects of vitamin supplementation (and the causes of deficiency). In the meantime, I am taking D supplements to help my bone density, somewhat reduced by Zoladex treatments for adenomyosis. Of course I also try to fit some sunlight exposure on bare skin in as often as I can stand to!

Another look at the link between vitamin D and pain, as published on HubPages

Through disaster

Dealing with chronic pain in the best of circumstances is difficult enough. But when situations worsen, or there are no options available to manage the pain, it can bring depression and leaves immune systems wide open to all the viral and bacterial infections that circulate. In Japan, Assistant Language Teachers (ALTs) often attend multiple schools, co-teaching up to 6 classes per day. They often have a long commute on overcrowded public transport, which is commonly over-heated in winter. The pain medications available in Japan are of the weaker types - paracetamol, aspirin and ibuprofen. Medications commonly used in Australia, New Zealand and the US with codeine or acetaminophen are illegal in Japan, contrary to the advice I was given by the Japanese consulate in Melbourne and the JETAA before I applied and was accepted into the Japanese Exchange Teaching programme, and placed in Fukushima.

I was there to teach, so I prioritised teaching ahead of everything else. I cooked and ate healthily, and kept to a reasonable schedule (most of the time). However, I constantly caught most viruses in each of the schools in which I taught. Unless I had no voice, I continued preparing activities and lessons, running classes and occasionally attending the English club at one school. I got through, with a fair amount of pain and illness, until the magnitude 9.0 earthquake happened.

The constant shaking (500 magnitude 3 or higher earthquakes in the first week), was completely nerve destroying. Wondering if the building would hold, if the cracks at school would destroy the classrooms, if things would fall on you while shopping was very stressful. There was no water for a week, and the lines to collect water were initially hours long. Basic foodstuffs did not return to the supermarkets for a week. Unfortunately, on top of that, the nearby nuclear plant was so unstable and had leaked radiation with the explosions following the tsunami. Initially, there were no English resources to track this emergency. I became very familiar with Google translate, checking reported radiations levels several times a day. I knew it would greatly affect food produced in the local area, and was appalled that the shops were so slow to label their sources (and promoted the local food so strongly). Not being able to use the split-system heating at home resulted in flares that rendered my hands and feet useless. The kerosene heaters in the schools gave me migraine-level headaches, so I refused to use one at home.

The decision to end my contract with JET early was not an easy one. I gave plenty of notice, and the JET programme had many additional teachers from the tsunami devastated coast who were able and willing to replace me. The teachers were extremely supportive, but the government was not. The stress of that decision, coupled with not being able to afford my planned trip to Australia, and the unexpected end-of-contract costs for utilities and services, and a final underpayment has left a very bitter taste, and longer-lasting health effects as I struggle to settle into another foreign country (where this time I know nothing of the language).

Even though it was a huge struggle, even though my health suffered terribly, even though my weight increased (because of the lack of exercise and the terrible lunches served at schools), even though I am still coming to terms with the stress and dealing with the continuing after-effects of going through such an earthquake and disaster, I would not change it. I found my limits, my strength and my determination. And I know this will serve me well in the future.

Mega earthquake and nuclear accident in Fukushima

See my post on Athrist for details.

Changes and consequences

It is amazing to see how a body can change, and adapt to changes. In the last couple of months, there have been some incredibly huge and very scary changes in my life, and my health is coping, surprisingly well. Having an achievable dream that I am actively working towards, focusing on short and long term goals, and not feeling trapped by illnesses and situations, has made such a difference. Even just being enthusiastic and excited about something - a hobby, a goal, travel, an enjoyable job, seems to help significantly.

A scan yesterday gave me a pleasant shock - it was the first time that adenomyosis measurements have improved, and it was a substantial improvement. Whether it's due to higher endorphins, the new Mirena finally stabilising, or perhaps a delayed reaction to the Zoladex treatment, maybe related to significant weight loss (now 40+ kilos), or increased fitness, I really have no idea. It's likely to be a combination of everything, as is anything health-related. But I'm becoming more sold on the importance of having a positive outlook, and dreams to work towards.

On the other hand, some of the downsides of the changes I mentioned before; I am having to study for very long hours (so much typing), and sort through, sell and pack my stuff (so much lifting and reaching). Lack of sleep, fear of big changes, and of course stress, are contributing to ongoing nausea, and I'm having to force myself to eat - something I hate doing. Although my weight has stabilised after a 5kg drop in one week, my clothes are becoming increasingly loose. I've discovered how expensive fast weight loss is, having to replace my clothes with smaller ones at an incredible rate.

But, amazingly, I seem to be coping well. I am now much more hopeful for how I'll adapt when I move overseas.

Travelling

I'm travelling alone, for the second time. And this time, it's an extended trip to Japan. I planned an ambitious amount of walking and sightseeing, and my stubbornness is seeing it through (of course). Travelling with chronic conditions has many challenges, although I am managing much better during this trip, than during my first.

This time, I travelled to wintry Japan (from a very hot Australian summer). I expected to get some kind of respiratory infection, was immunised against swine flu, and I did get bronchitis soon after landing. But I was prepared and brought my standard antibiotics with me.

I knew I could get some form of cold medicine, but was not sure of the common ingredients. Most seem to have ibuprofen (anti-inflammatory), and when my bronchitis became bad, I took on the risk, and used them. Although doctors have said to avoid all anti-inflammatories, I used a lot during my childhood. I judged that the low dose and improved symptoms, was more than worth the risk. When managing my own health, I must be able to make such judgement calls. I have since found another cold medicine without ibuprofen, but it would not have helped with the bronchitis. But as the chest infection has been squashed because I started the antibiotics early. Now, only the lingering cold symptoms have remained.

Walking a lot is taking its toll - my feet are shredded, covered in blisters, but my ankle is holding up nicely because I walked a lot in preparation. Bring two pairs of shoes has allowed me to swap when the tender points become too much to handle. One nice outcome from all the walking - many of the clothes I bought just before coming here, were slightly too tight, but are now falling off me!

Travelling for a month means I need to be prepared for some bad pain days from bleeding internally into muscles. Travelling alone means I can rest when I need to, pause without being forced along with a tour group, sit somewhere when necessary, and eat what/when I want to. Every few days, and especially after a high activity day, I plan for a half-day. It lets me rest, sleep in, and recover a little. It does mean not having supportive people around to offer sympathy though.

For several days after the culture course finished, I missed being around people, new friends and family. I missed sharing things with people who also have my interests. Having my computer with me has helped somewhat - I can stay in contact with people, in my usual fashion. It also means I space out my photo editing and writing, doing a little each day and don't hurt my hands. Unfortunately, despite intending to, I haven't done much study while in Japan!

Travel log (in progress)
Photos

Collateral damage

I like my teeth. Even throughout the period where my top teeth were being straightened, I liked them. Although I hated the mottling, with facings, and now without (take the surface off the teeth and the mottling became more even), and my bottom teeth are still overcrowded, they are good teeth. Even if I'd like my teeth to be a little bit whiter, they are hard and strong, something that is uncommon in my family. The only fillings in my teeth are preventative. But my teeth are disappearing, showing signs of extreme wear.

Subconsciously, as a reaction to chronic pain, I grind my teeth. For me, the bruxism is much worse at night. My molars look like I am 10 years older than I actually am, and a recent trip to the dentist, stress fractures on the surface of my front teeth were discovered (although this is fairly normal with age), my canines are no longer pointy, and the night guard (which has done a wonderful job of protecting my teeth during the night), shows signs of increased wear at the front. The stress fractures are caused purely by pressure, and cannot be fixed. For the moment, they are purely cosmetic.

I often catch myself grinding throughout the day, or gritting my teeth. The muscles and tendons around my jaw are more inflamed, and more regularly lock the jaw. He helps, but I can't walk around all day with heat packs pressed to my face. The tension around the jaw affects the muscles in the neck and shoulders, and causes headaches to worsen. I have no idea what kind of effect it has on my sinus problems, I suspect there is some influence.

When I recognise that I am gritting my teeth, I consciously force the muscles to relax as much as possible. But I am forgetful, and a lot of what I do is on autopilot, subconscious actions. Progressive relaxation exercises do help, when I remember to do them. I probably should do them several times a day, but I forget, or become distracted.

At my next dentist visit I will inquire what options exist for 'day' guards, perhaps something like the plate I wore for many years to straighten the top teeth. I like my teeth, and I'd like to keep them for as long as possible.

Some hidden costs of dealing alone

Over the years, I have observed that living alone and dealing with chronic pain disorders, has additional (hidden) costs, more so than for those without chronic illness. It is generally understood that it is more expensive to live alone, than with a partner, group or family. When alone, shopping and cooking is done more often and in smaller quantities (bulk purchasing and cooking is cheaper), bills are not shared, and there is no one to help with the housework or gardening.

Although not working drastically reduces the overheads for managing illness, increased stress (including monetary stress), and increased activity can worsen a fibromyalgia flare. Managing a household by myself, and looking after the cats alone, sometimes pushes me past my limit. Having someone to support me, both helps to prevent flares, and reduces the severity and duration of a flare.

During a fibro flare, I may find it difficult to walk, move my arms, and typically even breathe. Sleep can be nigh impossible. Without sleep, pain levels increase further, inflammation increases, and the flare worsens. Also without sleep, and with increased pain, nausea also increases and it is very difficult to eat.

With my hands still recovering from over-use (typing), and being a little away from useless on good days, cooking during a flare is completely out of the question, even making a cup of tea is difficult because I can't hold and pour the kettle. Even manipulating utensils can be impossible. Not being able to cook, or hold utensils, means eating less healthily, which again worsens a flare. Being nauseous, and often with an inflamed jaw, I tend to eat very little, which results in less energy, and extends a flare. If I had cooked on the good days, the leftovers then go to waste. If I had bought fresh produce at the time that I felt fine, it typically spoils before I am able to use it.

There are very few takeaway (delivered) options that are healthy and palatable to a nauseous stomach. Takeaway is also much more expensive and requires having cash on hand, which may be difficult because during a fibro flare, as driving and even travelling on public transport to get to an ATM is often impossible. Online shopping, although convenient, is more expensive than shopping within a store, and still requires energy to store, then further energy, and the ability to cook and eat what was bought.

To get some rest, and decrease the pain even a little, medication increases, which has a flow on effect of not being safe to drive anywhere. Doctors visits typically increase, both to deal with secondary effects of chronic illness and a poor immune system (infections and new problems), and to get renewed prescriptions for primary symptoms. Of course doctors visits these days are rarely free. In my experience, my secondary effects masquerade as other physical problems. Suspected sprains, breaks, chronic viruses, etc. require investigation, which again costs. If driving and public transport are not possible, expensive taxis are required, especially when it is necessary to visit one or more specialists.

Because flares behave completely inconsistently and are always unexpected, planned events and classes (ie. my Japanese classes), are cancelled with little to no notice, when most cannot be moved/refunded. This has happened a little too often in the last several years, mostly because my energy has all gone into working and typing furiously in high-stress project-based positions. Unfortunately it happens even more often when I am not sharing the household load.

In the next several months, I will be dealing alone. Expenses while travelling are almost always higher than living at home, despite what company bosses often believes, and with my illnesses, the costs are higher (and I am not even counting the non-monetary costs). Let's hope I get through the next few months, and improve as I focus on my health and studies.

Apologies for any weirdness in language and spelling, my speech-to-text software is rather temperamental, and I'm still getting used to it! It insisted that fibromyalgia had "flair".... not quite what I had meant!

Resting and recovering - not quite!

I have recently stopped working, and am being supported in order to focus on regaining my health (physical and mental), and finish my studies (which were essentially on hold while working). The demands on my health in the second half of my year-long contract damaged my hands much more severely than I expected. I have had to switch to using voice recognition software (MacSpeech dictate), and although it works fairly well, it takes a lot of getting used to, and is quite unstable (crashes regularly).

Several months ago I was contacted by Dr. Geoffrey Rutledge, who offered to feature these blog posts on Wellsphere, in the chronic pain community. Wellsphere republishes blog posts and comments from a range of health bloggers, and encourages bloggers to answer medical questions (regardless of their qualifications or experience). The email I received appeared to be a personally written e-mail, but due to the demands of work, I didn't get around to replying before today. I had a few questions regarding terms of service, so I searched the net before acting. It turns out that the e-mail I received was anything but personal - there were many others (and much commentary from various perspectives). I dislike being misled, don't completely agree with the TOS, therefore I will not be joining their community.

I have finished the Zoladex treatment, and didn't kill anyone. I even lost 8kg while on the treatment, but it was not easy. I don't know if withdrawal effects include blackouts, but a couple of times recently I have almost fainted both during and after intense exercise. The side effects of Zoladex are continuing, but I think they are decreasing slowly. I do need to find a better way to deal with blisters on the balls of my feet from all the walking I have done (and want to do!)

Although I have finished work, the next several months are intensely busy. I must finish my TESOL diploma (correspondence), study enough to pass the JLPT3 in December, visit family in WA in November, and travel to Japan in December/January for a home-stay culture course. Also in November is a 50km charity walk that I would love to take part in, and a 15km fun-run, but I will see how the blisters behave. Busy busy busy!

Recently I have noticed a clearer connection between pain levels and how my brain is interpreting signals from the nerves. The costochondritis has been playing up because I have been doing a lot more exercise, but the medication I use to help me stay asleep throughout the night (Gabapentin - it quietens the signals from the nerves in the brain), also helps control the costo pain. At the doctor's suggestion, I increase my minimal dose, when needed, to help control the costo pain. I find it surprising that such a small dose can have such an effect.

When people say that the pain is all in my head (which happens unfortunately regularly), I confidently reply "Yes - my brain does not react to nerve signals normally!" The brain is one area that is not even close to being understood, let alone treated.