writing on pain

October 26, 2012

I recently took part in a writing study on chronic pain.  My understanding of this study was that we were supposed to write about our chronic pain experience from a compassionate perspective.  It seemed that the hope was that by taking the time to reflect kindly on our symptoms, it might reduce our pain and change our thoughts about our pain.

Unfortunately for me, I realized writing directly about my pain can actually make me feel worse.  I prefer to write more indirectly – what things help me, goals I have, and more random thoughts, than writing directly about all the losses associated with my pain.  It is important that when I dive deeply into more of the emotional pain, that I find ways to bring myself out of the emotions.  Perhaps this is why I appreciate reality humor.  It is a way of looking directly at something, yet finding the humor in it, even if the humor seems rather dark.

Writing a blog about pain, has a way of connecting me with others in similar situations. It is more than just writing about my pain.  I love hearing the stories, the thoughts, and emotions of other people.  It brings my own truth to light, in a way I might not normally see it.  I come away from writing on a blog feeling lighter, freer and with more hope.  Perhaps the key is taking the words and using it as a bridge with others.  When I write to myself, it is still valuable, but can leave me feeling more alone.  When I share my words in the cyber world, I find other fellow bloggers who join with me in our cyber community of pain with hope.  Thank you all for making my days a little brighter.


New food plan experiment

October 26, 2012

Next week, I am planning on trying a vegetarian and gluten free plan to see if it affects my symptoms in any way.  I have heard various people share of miraculous recoveries because of a particular diet plan, yet have been skeptical.  Even though I don’t expect drastic results, I believe I will feel better if I make some improvements in my food choices.   Anything that has the potential of helping me, especially with little cost, is worth trying.  I have most of my food ready to go!

I have been continuing with the 15M plan most days.  I have been able to do some form of exercise each day for at least 15 minutes.  Most days I do more than this.  On the days that I have really struggled, I utilize Netflix to watch something of interest.  I do best being consistent when I schedule something with a friend, other days I have to result to more procrastination tactics on my part.

I am also trying to make my top 5-8 items I need to accomplish each day.  I find it is really important for me to feel a sense of progress, especially when life feels more routine.  The check-off sheets remind me that I am doing well, making progress, even if I can’t do everything.

Exercise for people with fibromyalgia

September 17, 2012

It seems that many experts on fibromyalgia do not recommend intense cardio exercise.  Perhaps the assumption that more jarring on the muscles will increase the pain.  This may be the case for some people, but has not been my personal experience.

In general my favorite ways of exercising have been running, weight lifting and aerobic classes.  When I began experiencing chronic pain I tried yoga, more walking and swimming.  Before chronic pain, my philosophy was to make the most of my time and the more intense the cardio the better.  When doing weight lifting, I would lean towards less reps and more weight, versus a lighter workout.  I was surprised that yoga was not as relaxing as I had envisioned, much more physically demanding when my body wasn’t prepared for it.

Regardless of what exercise I do, if I push myself beyond my fitness level in any capacity I will generally experience pain later on.  I have experienced this with running, walking long distances or with lots of hills, light or heavy weights, yoga, or even gardening.   When I didn’t have fibromyalgia I would also ache the next day, but it feels more intense when I have fibromyalgia.  My body can take longer to adapt to new exercises.

The advantages of doing a higher aerobic exercise is that the endorphins also help in reducing my pain.  I have noticed that many times after a run my pain is drastically reduced for the 3-5 hours.  I also have increased energy to do other activities and my mood is elevated.  I have started to add some sprints into my run to produce more endorphins and raise my fitness level.  Sometimes the increase in exercise may bring a crash if I overdo it.

Personally I prefer a variation of exercises to keep myself fit.  I am trying to increase my higher aerobic exercise to keep the endorphins kicked in.  Currently I am aiming for 5 days a week of running or racquetball (15 minutes at a higher intensity), as well as other strength training like weights and yoga.  I find that warm up and cool down are important as well as icing and heat to calm the muscles.  Lots of walking and stretching seems to help prevent more pain later.

Last week I checked out a book, Bring It, by Tony Horton on the P90X exercises.  I have the videos on hold at the library, but it could be another 6-9 months before my turn comes up.  I have heard many people rave about this program, and figured it could be helpful since the beginning routines are geared at 20 minutes of exercise at home.  They have cardio, resistance and yoga routines.  They have some great exercise routines for all levels of fitness.  Though according to the quiz in the book, I am more intermediate, I thought it would be better to start at the beginner routine until I can develop the consistency.  This is a great book for anyone as it gives great illustrations on different exercises and routines to follow.  I put the page numbers for the exercises on a sheet of paper (don’t know them all by name yet) so I can quickly go through the routines.  Having a book allows me to go at my own pace (longer or shorter) and tends to be more relaxing than a video. If an exercise is too painful I can modify or skip it entirely.  I will eventually purchase the book for my own library.

Well I think I am awake enough now to attempt some exercise.  I will start with a run/walk then maybe do some resistance training.  Eventually I will need to find some time for the laundry piles and mopping the floors.  When I figure out how to keep the house clean and exercise I will let you know.  There is always tomorrow :).

Step 1 writing on chronic pain

September 12, 2012

Today I decided to start writing a narrative of my pain story that I hope to share on the blog.  I have been putting this off because it is time-consuming and can be painful to look back at the difficult periods in my life.  I am including information about periods of my life when I had physical and emotional pain and my thoughts around it.

I am surprised at how helpful this has been.  I am able to see some links that I didn’t really think about before.  Initially I was thinking I didn’t have much pain as a child, since I rarely missed school.  As I started to write more, I can remember several situations where there was both pain and shame around the pain.

The thought of writing and sharing a personal story can be terrifying.  I can feel the vulnerability of sharing such personal information.  Even though I have been less specific in situations where it involves other people, I am sharing honestly my own thoughts and feelings.  I do believe that the healing comes from looking at the truth of a situation, and being able to think and talk about it without shame.  I hope that each of us can learn to honor and even love the parts of our stories that make us uniquely us.

Time Management

September 10, 2012

School is back in session for my two middle school daughters.  We have had a great summer, and I miss them already.  I love the carefree summer days, and the extended family time.  September brings us back to schedules, homework, more soccer and routines.  It is a time I start evaluating my priorities and thinking about what to do with my extra time.

I have been doing well with my new exercise routine.  I am trying to do something at least five days a week.  I coach soccer in the evening, though this entails less physical activity most of the time.  I am trying to walk/run 3 days a week, and play racquetball once or twice a week.  I hope to make yoga class once or twice a week and do some weight training.  If I am able to keep up with this routine I know I will feel better.  I will have more energy, feel more positive, have less pain generally, be more fit, and look better.

The ice and heat routine has been helpful.  I am typing today with a heat pad on my back. I find that the ice and heat are reducing my pain level, and I have been able to continue to run a few times a week without too much knee pain.  In order to cover most of my body it takes about 3 hours a day.  If I am lying around, I will add in more time.

As much as I am enjoying my healthy life and the benefits it brings, I am wondering about how I can keep up with my other responsibilities as well.  It can be hard to keep up with family members and do the daily chores at home.  I also have a couple of opportunities that have come up that I am considering.  One would involve a significant amount of time but could make a huge impact for many.  The other could possibly improve my health.  Much of life seems to be about making decisions on the best course of action that balances taking care of myself and being with others.   I was looking forward to this period of health focus, but perhaps there is something else in store for me.

Wishing you all a good week…..


Adaptations to pain management

September 7, 2012

Making adaptations to pain medicine can be difficult.  I have been in a long process of attempting to go off my medication.  I have gone from 20 milligrams a day to about 1/4 a milligram a day.  I have switched from the slow release oxycontin to the 4 hour tablets so I can cut up the pills for smaller doses.  Amazingly my body has adapted fairly well.  My pain level has increased, but generally it is tolerable.  I have traded the extra pain for more energy and ability to focus.

Last week I tried to go down to 2 doses instead of 3.  This is the second time I have tried to eliminate a dose.  The weird thing is I can continue to make my pills smaller, but once I eliminate a dose (about 1/8 of a 10 mg pill) my pain level increases drastically.  My whole body ached where it was difficult to do much of anything.  I decided to go back to 3 times a day, and take about 1/16- 1/12 of a pill each time.  So far my body adapted.

I am also attempting to add in more intense exercise to increase my endorphins.  I notice when I do this I have less pain for awhile.  The down side is my body aches more and my knees hurt later in the day.  I am also noticing more pain in my hands and feet.  I am trying to find a balance in keeping the intensity up without adding injury to it all.  Running is the best exercise (especially sprinting) for kicking in endorphins.  Instead of my preferred way of running – basically a light jog until I am tired, than walk for another 10 minutes, I am doing a light jog to warm up, walking up the tougher hills when my knees hurt, and doing about 5-10 walk/jog/sprint sequences.

In many pain management/injury books I have heard about icing and heat to aid in healing.  Though I have done this occasionally, I have decided to be more active in this method.  I am trying to ice and apply heat to my knees, neck, shoulders and back three times a day.  This seems to help temporarily, but is very time-consuming.  I wish there was some kind of all over body wrap that was cheap.  For now I just move my ice and heat pads around.  I notice my back shoulders/neck feels less tight from the myofascial pain but the sensations can cause a more tingling pain.

In many ways I feel better than I have in years.  I love being able to focus more and to have more relief from the fog.  The exercise helps my emotional and mental state, bringing greater positive energy and reducing my stress level.  Each day it brings more hope.  It just feels good to be doing something that is effective.


Chronic pain symptoms increase

August 30, 2012

I have had an interesting week making adaptations to my medication.  I added back my third mini dose for my vacation, as my pain was increasing and I didn’t want to deal with it while visiting family.  I have reduced it back to two again a few days ago.  The strange thing is in general I have not noticed a great deal of change in my pain level until now.  The slightly painful tingling sensation in my hands/arms and feet/knees has returned.  When I try to run or kick a soccer ball my legs feel heavy and everything takes more effort.  I try to distract myself with music and/or other thoughts to keep myself active.

I have also had a drastic change in my energy level.  I have periods through the day where I feel a bit “high” and hyper.  Having so much struggle with fatigue this is a welcoming symptom.  Other times in the day I crash where my pain level increases and it is difficult to concentrate.  Generally this is before my typical dose, but not always.

Since I am using such a little dose, I am surprised by the impact upon my daily life.  It makes me aware of the power of the drug I have been taking, as well as the body’s attempt to regulate when I make changes.   I can see the importance for me to make changes slowly, making the process more bearable.  I have a greater understanding of the dependence I had on the drug, and how after time the effect diminished.  Changing medications has always been difficult for me, but at times this is when I would experience the greatest symptoms and the greatest relief.  Since my dose currently is so low, I imagine that the symptoms I am currently having will be similar to what will be the end result when I am drug free, though probably slightly more intense especially when the “high” period ends.

I am still hopeful and feel like this is a huge step in improving my health.  It feels good to be doing something that is improving my daily life, costs less, and is effective.  I have so much to gain, and little to lose.  Though I will always advocate the ability to have pain medication options, I hope we can also have better pain management care.  I am grateful that I had amazingly supportive doctors, yet there was so much tha they didn’t understand and the options were limited and/or highly expensive.  Much of my personal journey has been through my own research, talking to others, finding support, and exploring my own options for improvement.  Taking it one day at a time!

The Long Run Book Review by Matt Long and Charles Butler

August 28, 2012

I love reading books about physical recovery.  It inspires me to keep healthy and fit in spite of challenges and continue to move forward even when I have set backs.  I also learn new medical information, resources and coping methods.  The Long Run is a great read about an elite athlete and firefighter who was involved in a bike accident (he was hit by a bus).  Even though he wasn’t expected to live, he miraculously began the road to recovery.  Matt shares both his struggles and milestones in an honest and compelling way.  I was captured by his story, moved by his pain and encouraged by the people who supported him.  I was also amazed by the body’s ability to not only heal itself, but how Matt Long was able to still push his body to the limit.  Though the struggles didn’t end, he found a way that helped him continue to live in spite of his new circumstances.

Though I personally haven’t seen the healing that I would hope for, I believe that growth is essential to my well-being.  I must strive to move as much as I can each day to help my body heal.  Even if my day or my week makes it difficult to exercise or accomplish what I wish, I must avoid dwelling in self-pity for too long.  In general I love being active when my body is feeling well.  I enjoy a walk, a run, a hike, playing soccer with the kids, lifting weights, doing yoga and racquetball.  What can be harder for me is finding the time and energy to exercise when so many things in life seem to jump in the way or I have too much pain.  The most consistent way that I am able to exercise is when I involve my friends and family in my activities.  This keeps me from being isolated and becoming depressed.  When involved in personal exercise like running, it is generally best done in the morning.  Rarely do I come away feeling worse than I did before exercising.  At times the pain can increase or my symptoms will intensify, but overall I will feel better in the long run.  It is always helpful to remember that others have been here too, and I can press on.  Thanks Matt for sharing your story.

Withdrawal – 2 a day – drug free within reach

August 20, 2012

Still on the withdrawal plan.  The good news is I am down to about a 1/8 of a pill 2 times a day.  It is harder on my body to take out a dose (from 4 a day to 3, etc) than reducing the amount I take.  I started increasing the times between doses when I would either forget to take it, or my pain level hadn’t increased.  Yesterday I reduced it down again to 2x a day when I was so busy coaching during a soccer tournament I forgot to take my afternoon dose.

This morning I woke up feeling really sick to my stomach and had a headache.  Not sure if this was from coordinating positions for soccer players for nine games this weekend or from the reduction on medication in my system.  Most likely it is a combination of the two.  It may take a few days for my body to adjust.  Fortunately after my morning dose the symptoms gradually disappeared.

I am excited to be on less medications and back to 2x a day for medication intake.  I hate having to take medication with me in the day, especially when out on the field or with other people.  I feel inspired that soon I may be completely drug free.  I am amazed at how much better I can focus and the increase in my energy level.  Unfortunately some of my symptoms were intensified with the medication.  My pain level is higher, but not to a unbarable level.

So thank you for listening to my progress.


Making memories with Chronic Pain

August 2, 2012

What a great weekend of coaching.  My experience coaching in a soccer tournament was positive.  I was able to make it through six soccer games without too much pain or fatigue.  I took a break from my medication reduction in order to limit other symptoms (especially the tired eyes).  I had lots of fun, was able to help out, and connect with the players and other coaches.

Attitude and planning helped make this weekend a success.  I spent several days preparing by mapping out where I was supposed to be at what time, food stops, creating position line-ups, and gathering rosters and forms.  With several coaches on our teams, my role was more limited so I could focus on the positions and team management.  During warm-ups I would observe the players, and let the other coaches lead the activities.  Whenever possible I would sit or lean against something to preserve my energy.  Attitude and grace was important when mistakes were made (by myself and others).  It also helped to have great support of the parents.  This was the first tournament where I didn’t have any major demands, complaints or issues from anyone.   Gotta love that.

One of the blessings of my fibromyalgia is that I can push myself to the limit when needed.  I am grateful that I am able to participate in activities that have meaning to me, even if my role needs to be altered some.  I enjoy having my whole family involved in the soccer experience and making wonderful memories together.  Sometimes what seems like the end, is actually the beginning of something new.

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