How to Cope wtih Pain: Can you tell us a bit about yourself?

Jeisea: I'm a wife of 35 years and a mother of 2 fantastic adults.  In a previous life I was a teacher, creator, thinker, lover of life.  In 1998 I broke my right wrist which is permanently stiff. In 2000, I was diagnosed with complex regional pain syndrome (CRPS).  Drug treatments failed, and in 2004 I was told to look at alternatives as conventional medicine was not suitable for me.  (CRPS is a nerve pain disorder characterized by pain, temperature instability and movement problems in the affected area. -HTCWP)

HTCWP: What's been your personal experience with pain?

J: After my arm was put in a cast, I was shocked that I was in fairly extreme pain.  I was told it was because of the severity of the break.  Because of pain, I was anaesthetized to have pins removed.  I began physical therapy straight away, despite the pain which I then believed was normal.  Within 4 months, my right and left shoulder were very painful.  I was told I had rotator cuff tendonitis.

I believe that as months turned into years, and I changed my perception of pain.  I ignored it and "got on with my life."  I loved my job as a senior language teacher.  But I wrote little and used lots of pre-prepared resources.  I was lucky I was at new schools so everything was new to them.  I clung on to work as I felt more valued.  I struggled with home chores.

In 2000 I became concerned because my hand was getting weaker, despite so much physical therapy.  I was then diagnosed by a hand physician with CRPS.  I didn't believe him.  I read about burning, excruciating pain.  That wasn't me.  From the start, I had nerve firing like being pricked with pins.  My pain was constant in my hand and arm, with other areas gradually being added.

At this stage, I had deep bone pain, aching, hypersensitivity, and discomfort from clothing touching my skin.  Sudden heat or cold caused pain, and if I stood or sat in any position for more than a short while, my skin and nerves seemed to become overstimulated.  I didn't have burning pain.  I had free flowing anxiety, the anxiousness when you can't pin down why you're anxious.

Over time, I was aware I was gradually in more and more pain.  Mid 2000 I developed burning in my lower back and the backs of both legs.  Later I developed whole body waves of nerve firing.  Very creepy and unsettling.  By far the worst pain has been after migraines and dental work.

HTCWP: Overall, what have been your treatments for pain, for example, medication, procedures, etc?

J: For the excruciating nerve firing, I've found no treatment.  However my pain psychiatrist found UK research about vitamin B2 preventing migraines.  After the diagnosis, I also tried antidepressants and have found that low dose amytryptiline was very effective for pain and helped with sleep.

Professor Scott Reuben in the US has developed protocols for dental work.  My dentist puts cream on the skin to deaden the area, injects a non-adrenaline local and follows at the end with another injection.  We keep the sessions short and this so far works.  Prevention is certainly the way to go.

While at a pain clinic, I learned Mindfulness meditation.  I found that the silence took away distractions which left me facing the pain.  At the time I thought this was counterproductive.  The extraordinary thing about this mindfulness meditation was that every time I did it, my hands at the start were both freezing and a grey /purple colour.  As the session progressed, on every occasion my hands became warm and finally very warm and pink.  It was so remarkable that before the session people would feel my hands and were as amazed as I was with the change.  Having read your interview with Dr Moseley, I think I'll look again at Mindfulmess meditation.

Other medications I've tried include the blood pressure medication Catapres, Tramadol and Tegretol, but the side effects weren't acceptable.

Next I had a Phentolamine Infusion. This had a remarkable result with much less pain.  I had three more infusions with less benefit.  It was at this point that I was told by my doctors that medication was not suitable for me.  I was advised to look at alternatives.

HTCWP: What has been the most difficult part of your experience?

J: The most devastating for me was, when I knew I was getting progressively worse, being told by the loveliest, most clever doctor that modern medicine could do nothing.  I felt I had lost control.  I had made the mistake of abdicating management of my condition to another person.  I then visited my very kind and clever psychiatrist who became very practical and started writing a list of possible alternatives.  These included omega 3 oil for inflammation, magnesium for cramps and so forth.  He gave me back control.  Later he told me about Capsaicin cream.  I'm allergic to something in the store-bought cream, so I found a recipe on the net and make my own.

The other most difficult thing has been to accept what has happened.  I've had to redefine who I am.  I can't do physically what I took for granted before.  I could do fine portraiture.  I now struggle to hold a pen.  I'm no longer the person I was then.  My relationship with people has changed.  I find it hard to concentrate when people are talking.  I am dumbed down by lack of concentration and forgetfulness.  I thought I had dementia.  I was tested for it and am grateful that I don't.  In reality I sleep poorly due to pain.  At present I'm learning to accept and delight in the things I can do.

HTCWP: Have there been any "silver linings," or positive things that have come from the experience?

J: Yes.  Just as I was devastated by being told the medical profession couldn't help me, in a sense it was my salvation.  I've had to become strong and work hard at finding a solution and that has been a great distraction and comfort in itself.

I've learned to "smell the roses" and appreciate the small and beautiful in life.  I appreciate each moment with my family.  Life-changing experiences are apt to make you reassess.  I cherish friendships which have remained despite my lack of effort in maintaining them.  I plan to be a better friend.

HTCWP: My impression is that you have worked hard to understand pain, and to figure out what will work for you.  What's been helpful in learning to cope with having chronic pain?  How about your attitude?

J: Distraction is wonderful.  Focusing away from pain.  I have to remember to stop often and change activities and pace myself.  It really isn't worth overdoing things because the time for recovery is greater than the time spent on the activity.

Last year I finally felt I was getting somewhere in my efforts to get some relief.  The thing that has really helped me most is mirror therapy.  I'd read research on the internet and in the book "Explain Pain" which Dr Moseley spoke about.  I positioned a mirror at right angles to my body so that my painful side was out of site behind the mirror.  I then watched the mirror image of my pain-free side (arm) move up and down in a way which would have been painful for my affected side.  I only did the movements about 8 times.  I repeated this exercise several times, with breaks in between, throughout the next few days. At first I noticed a slight relaxation.  I thought I imagined it.  After a few days I realized I was more comfortable.  I kept doing the exercise several times a day until the pain finally was gone. This took about 3 weeks. The interesting thing I found was that I had pain in my whole side from head to foot.  As time went on, the pain gradually decreased in area until it was isolated to my shoulder.  Finally that settled as well.  Unfortunately when the side settled, my back burned. However over time, I'm getting better at managing the flare ups.  (More about mirror image work coming up soon in future posts. -HTCWP)

The next most helpful thing by far has been controlled breathing. I breathe in normally and then breathe out twice as long as in.  I do this for 15 minutes each day.

HTCWP: You have a website, http://www.crps-rsd-a-better-life.blogspot.com, about your chronic illness experiences (with some great pictures of "triangle butterflies" and other unusual beings, too!).  How did you get interested in that?

J: I wanted to make a journal of what's working for me so I don't lose the plot and my daughter suggested a blog. This has kept me focused.  I made a list of what helps relieve my pain and symptoms, and I update the list as I discover more.  When I'm having a lot of discomfort, I can't always think so I refer to the list for something that might help.  Because I'm responsible for my own recovery I look for research and developments, and put links to what I find interesting and relevant.  At present I'm interested in "eating smart."  I'm looking at choosing foods higher in antioxidants and in particular vitamin C.

HTCWP: What is Australia like?  How close are you to the sea?  Any healing properties you feel at the ocean?

J: Thank you for asking.  I live in a special place in Australia, near Byron Bay, the most Easterly point.  The Aboriginal people call it Walgun, which means The Shoulder.  It gives views, sheltered and sandy beaches, seafood, wildlife, rainforest fruits, and always clean spring water.

Just inland lies one of the largest calderas in the world.  It's one of the world's great natural wonders.  There's a virtual semi circle of vertical cliffs around the western side of Mt Warning, which now stands at just over 1100 meters tall. Being so high and so far east on the Australian coast, it's the first peak on the mainland in Australia to be touched by the rising sun at the Autumn and Spring Equinox.

For me the pristine beaches are a panacea.  No matter how sensitive my skin or how much pain, water always helps.  Whale watching is a definite bonus, and we usually go up to the lighthouse and whale watch after the Thursday growers' market.  It's easy to eat well here.

HTCWP: Any other thoughts you'd like to share?
J: Just this - I've found it's too easy to become overwhelmed or consumed by pain.  This causes suffering.  The way out of this for me is to actively seek happiness.  I'm confident there's a brighter future for people in pain and I implore researchers to keep thinking outside the square.

Thanks so much, Jeisea, for sharing with us so much about your condition, the challenges and triumphs, and letting us have a peek at a way of handling a difficult pain condition with courage and wisdom.  For others who are on this path, it is difficult, and Jeisea can serve as a role model for progressing along a difficult, but life-saving path. -HTCWP