Medication reduction, pain slightly higher

November 15, 2012

My journey continues in trying to reduce my medication.  My new health habits are giving me more energy and seem to have a positive effect on my pain level.  A few months ago I took a break from reducing my medicine because I wasn’t able to function with the increase in pain, and it made it difficult for me to sleep.  Earlier this week, after spending a few weeks on a healthier diet (and losing 8 pounds), I felt my pain reduce, and was able to cut out my mid day medication (I was taking a low dose of opioids 3X a day).

Today I am starting to increase the time between each dose.  So far I have added a couple more hours in between.  I can feel my hands shake some, and a slight increase in pain especially in my knees.  I am hoping that in 3 or 4 days, I will be down to once a day.

I am surprised by how effective this has been for me.  Unfortunately few doctors I saw gave any information on options for pain control that relates to the food we eat.  Part of this is that it isn’t always covered under insurance to see someone who deals with nutrition.  I have been referred to physical therapists, accupuncturist, chiropractor, sports doctors, pain management doctors, psychologist, neurologists, oncologist, rheumatologist, cardiologist and had numerous diagnostic tests and tried 11 or so medications.  My hope has returned for a cure or at least a low amount of pain without medication.  I am feeling better everyday!


Letter to my Higher Power – Step 2 chronic pain

November 14, 2012

I have been taught to believe in God, Jesus and the Holy Spirit. I want to trust in Him as my Higher Power and guide through this life. I want to believe He loves me and that through Christ’s death, that my sins have been forgiven. At times however I have doubts and struggle to understand my own beliefs.  I have had many wonderful spiritual experiences that have impacted my life.  I have also had some traumatic experiences and distorted words that came out of a religious context.  I find that my resistance drops when I focus on the Spirit and the relational aspect that I continue to feel each day.

I believe there is a spirit in all things, that something spiritual is at work in this world and in my own life.  I believe this spirit is relational in nature, that it has the power to change things around me, that it isn’t something I have ultimate control over.   I believe in the purity of this Spirit, that this Spirit has the capacity to bring light, truth and wholeness.  I believe the Spirit is above all loving, that it is filled with compassion and grace for all mankind.

Turning my will over to a spiritual power is something not easy to do.  I like to hold on to what I believe feels concrete, not something that is less physically seen.  At the same time, releasing to a Spirit gives me peace, brings me wisdom, and helps me make better decisions.  When I walk with the spirit in mind, I am more of who I want to be, also filled with more love, compassion and grace.

Surrender is about willingness.  Willingness to let go of what I know and desire and be open to something different.  It is being willing to say both yes and no, and seek love and truth.  It is choosing to look at myself, striving for growth, while accepting what is.

When I try to control my health problems it doesn’t work.  I can’t completely change my course with my mind alone.  I can’t always tell when I am holding on to something, but trust the Spirit will guide me as I keep searching.  I do not need to be perfect or to have all the answers.  I am not the cause of my health problems and I am not being punished.

I do not completely understand the Spirit.  I can’t explain the different religions that have a unique spiritual slant. I see a Spirit at work in a variety of people and places that feels similar to the Spirit I follow.  I have many questions that I long to have answered, yet realize many of them won’t be.  I trust that my Spirit will be with me, and be a guiding force in my life.


Can a speckle of medication really make that much difference?

November 9, 2012

Because I have been doing so well with my nutrition plan, I decided to once again try to cut out my mid-day medication.  Over the summer I have reduced my medication to the point where I am taking really tiny cut up pieces that I take 3 times a day.  The last few days I reduced my middle of the day to almost a dust of medication.  This afternoon I thought I would cut out this dose since it is so small.  In the afternoon it wasn’t too bad, but as the evening progressed I could feel my eyes burning and my body pain increase significantly.  These are similar symptoms I had when reducing my medication over the summer.  I can’t believe the reaction I am having over such a small amount of medication.  It reminds me of how powerful narcotics really are.

I am hoping that tomorrow, my body will continue to adjust during the daytime and my pain will be reduced.  For now I will take a hot shower, and take my evening dose an hour earlier.  I love the idea of going back to two doses each day, as I don’t have to worry about taking medication with me when I am out.  I have two weekends of soccer tournaments, so it would be great to have the lesser pain and the lesser medication.  I would be happy to go off meat and gluten products in order to be medication free.  I trust I can learn to supplement other great food products for my favorites like pizza, barbecued hamburgers, and breads.  Something else to explore…..

 


Pain is decreasing….

November 7, 2012

I have been experimenting with my food a bit, trying to eat more healthy and focus on a vegetarian and gluten-free diet.  I am filling up a water jug each morning of 64 ounces of water, and most days I drink all of this.  I decided to try this for a couple of reasons.  One was that I am planning on becoming a health coach in December to help others in their health and wanted to try out the food, and second I wanted to see if my food might make a difference in my health.  Hearing I would lose some weight didn’t hurt either.

I was skeptical.  Actually I am still skeptical.  Years and years of trying different things to reduce my pain level, and give me more energy.  Many things help – such as exercise, ice and heat, yoga and reducing stress.  I even was able to reduce my medication this summer to about 10% of the dose I was given.  Unfortunately, I haven’t been able to cut it off completely, and any reduction caused too much pain.

So far the past week and a half I am feeling more energized.  My body is still tired, yet I am so much more alert.  I feel like I have an extra hour or two each day.  I am still stuffed up, which is probably due to dairy which I haven’t cut out.  My pain has also been reduced some, so I am reducing my medication a little more for the first time in months.  I can feel more discomfort in my knees when I walk, and sensitivity in my hands (the tingling sensations are greater).  The pain in my body and back are less, and I am still able to sleep at night.  I have also lost about 6 pounds, so my clothes aren’t so tight – always a good thing.

I am learning a lot.  I feel like I am understanding more what my body needs.  I don’t expect a miracle, yet it is great to see some hope and improvement.


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.


Plan 15M – A life of adaptation

October 1, 2012

Last week I was really sick with some stomach bug.  I am hoping it is just the flu and not some new chronic condition.  Fibromyalgia has a way of stealing my innocence.  I am aware that many chronic conditions seem to take place after regular illnesses and stress.  This was the case for me with fibromyalgia.  I initially had a cold virus and was dealing with some stressful situations in my life.  The antibiotics might have also contributed to my body shutting down.  Unfortunately now when I have an illness that lingers, I go back down memory lane (somewhat like pstd) and feel fear.  Though I have recovered somewhat (meaning I can leave the couch), I still am struggling to eat.

Often when I start some exercise routine, I seem to get sick.  Though if I probe closer, I generally fight infections regularly anyway, and have many allergies that can bring me down.  A regular cold may hit me a bit harder than before fibromyalgia.  I could pretty much function ok, but scaled down some.  Because my life is already scaled down, and my body running with less energy, a cold can knock me out.  I decided my body needed some rest, and limited my exercise last week.

Fortunately life always has many plan Bs to choose from.  This week I will go with plan 15M.  My goal is 15 minutes a day of some exercise even though I still feel sick.  My neighbor needs her dog walked as she is recovering from surgery.  This is a great place to start.  I will also continue the P90X plan.  As I anticipate more illnesses in the future, whatever time I miss for illness, I will extend to my plan.  The P90X plan is geared for making changes every 3 weeks.  So if I miss a week for illness, I will spend 4 weeks in that particular area.  I might add a few sprints into my dog walking, but will take it easier on the running for now.

The good news about having stomach aches is I am forced to eat better.  It seems I do better with healthier food – who knew?  I even cooked up some tofu that didn’t taste too bad.  Next time I will google how to cook tofu before cooking it.  I don’t know why there isn’t instructions on the package like every other food you buy.

There is a good possibility the stomach pains are partly because of my medication reduction.  Though I haven’t reduced my medication in weeks, it feels similar to what I experienced when going off other narcotics.  For now I will continue to maintain my current level of medication.

Well off to call my neighbor about the dog walk.  Wish you all a great week…..


Do I buy new shoes or hide in a shoe box?

September 24, 2012

How best do I cure myself when I start acting like a crab?  I am feeling irritable because too many things are not going according to my plan and time-table.  I could write a whine a log, but generally that will just make me a whining crab and not really help me feel better.  The simple version is I am feeling overwhelmed because my husband is out of work, I can’t work, conflicts with people, I have some cold/illness that is clinging on, the joys of fibromyalgia and my knees still hurt.  So maybe it isn’t all that simple, yet I really don’t like feeling angry and frustrated.

I must admit, just coming up with my title post, put a smile on my face.  For some reason, that stems back to early childhood, shoes have a way of altering my mood.  With over 50 shoes in my closet or in the garage, I have plenty to choose from without even leaving my home.  The shoes I wear the most are more on the practical and sporty end, since the majority of the time I leave the house it is to do something active.  I wear my Adidas tennis shoes for running, walking and racquetball several times a week.  My soccer cleats, not the ones my younger daughter has conveniently made her own, but the other pair, are used for soccer practices/games 3-5 times a week.   Though I prefer the soft leather Pumas, over the other 3 I own, I would rather have my daughter be successful on the field with a great pair of shoes I happened to find on clearance for about 25% of the cost.   My black Teva sandas are my favorite shoe in the summer.  Keeps my feet cool, but allows me to run and hike if need be.  I have discovered I can even kick a soccer ball in them, they truly are the best.  My favorite winter boots are my Uggs. I think I spelled that right.  I used to make fun of people willing to buy such expensive shoes until I tried on a pair at Nordstrom Rack.  I immediately fell in love, and figured I deserved to not have my feet hurt.  After trying to rationalize to my daughters the cost of the shoes, I called my husband and asked if I could have them for my birthday.  The wonderful husband he is, said “yes”.  The other 40+ shoes I own are used so much less frequently.  My black leather boots are the next highest and then some clunker platform type of heals.  Being 5’4 (on a good day), I like the extra height but can’t walk in narrow heals.  Platform shoes don’t look as elegant, but makes me feel taller and some days more powerful.

Today I have several options to change the course of my day.  Hiding in a shoe box would give me some momentary relief.  I could escape from people for a little while, so that in my tiredness I don’t say something I will regret.  I hate feeling out of control with my emotions around other people.  Unfortunately this happened a few times this past weekend.  I can feel safe in my box, free from making decisions, bring my i-pod for some music, and hang out with my shoes :).  A little break could be a good thing, but eventually I will want OUT.  Though boxes are fun to draw when I am bored, I don’t particularly like the limitations and would need to create a skylights so I could fly away.  Buying a new pair of shoes would be a great way to go.  I could spend the day shopping for a new pair of boots or sandals.  I could find something with some zeal and show off to my family while ignoring their looks of “not again”.  Though the truth be told, I don’t feel like shopping, well maybe on Craigslist.  Perhaps after the post….

The surprising thing is I now feel energized and clear-headed.  Amazing what a shoe talk can do.  I may not be able to run today, but I can go for a walk and listen to some music.  I can do some Internet browsing to dream a bit, maybe plan ahead for my birthday shoes, October isn’t far away.  I also am capable of making apologies to the people I lost my temper with.  I can have conversations with people and learn to communicate better when I am tired.  Part of life is learning and growing.

On the shoe note – my plan is to see how many different shoes I can wear today.  I can do my hiding on the couch for some rest time and Internet shopping.  Maybe I will buy a new pair of shoes today – but if I don’t – I will be sure to really experience the feel of the shoes I already own.  Perhaps start with some slippers —–AAHHH.


Another day…..let the scales tip

September 23, 2012

In my dream land I would find the balance – perhaps that would be all too boring.  I am happy to report I did great on my exercise this week – yoga class, P90X yoga, cardio and 3 resistance training at the beginner level, 3 days of running/walking and 2 days playing racquetball.  Ok – perhaps I am over the top, and paying for it.  For this I take the weekend off – well sorta – 4 games this weekend where I am the assistant coach.

I look at the piles on the coffee table.  At least 20 books waiting for me to read/review.  About 6 of them I haven’t returned to the library because I want to blog about them.  Thankfully with renewals I can have about for about 12 weeks, unless others are requesting the book.  The laundry is in the dryer, so some housework is being done.  My husband even made the bed, something in which is on my “what’s the point” list.  I hate tucking my blankets in anyway.

I hate the idea of scaling back on the exercise.  I feel really good as far as energy level and outlook on life.  There are some moments I feel really up, bubbling with energy, talking a bit excessively, and radiating joy where I go.  Love that!  Fortunately I can keep up – though my skills in racquetball need some work.  On the down side, my poor knees are going in revolt.  What is preventing me from forging ahead isn’t fibro but my pathetic knees.  I tried to limit the hill running, though I think when the endorphins kick in I can’t feel the pain, so what I do is push myself a little too much. Ooh yeah, love the sprints too.  Doing the squats that seem to strengthen my knees, may not help either.

My dream of being medication free is still on the back burner for now.  I am hoping to reduce again, if I can keep myself active enough without putting myself in bed for a week with illness and/or injury.  I am content with the level for now, but in the general health outlook, the exercise and food seem like the best place to focus for now.

I am learning to use my laptop as intended – on the lap. This is helpful when I continue my ice and heat treatment.  The ice really helps with the healing especially in my knees.  I am trying to ice and heat 3x a day, though 2 seems to be more accurate.  A great way to gain down time.  My cat Jet, loves it.

One other benefit to exercising with fibro, is it forces me to eat better.  It appears that my stomach can tolerate less unhealthy food when I am more active.  I crave food like salads, which to me is a rare thing indeed.  Still love ice cream, but tends to make me sick the next day.

So the week ahead awaits me.  Another opportunity for balance in the life of the fibro patient.  I may need to attempt some modifications to my exercise routine this week, such as more walking and less running.  If I am not able to have enough cardio, I may want to try some swimming one of the days.  I will need to push myself a bit to do the needed but less thrilling chores.  Though at times I feel a need to rest, other times I just hate cleaning the kitchen every day.

Thanks for reading – time to change the ice.  Like everything else, moderation isn’t always my forte.


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.


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