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!
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…..
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.
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!
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.