How did you find Manage My Pain and has it helped?
I was again fortunate in that our health insurance provider (Green Shield Canada) had an arrangement with Manage My Pain and they provided a subscription to this remarkable app that works so well on my smartphone, and on my desktop. I really like the way itcombines both numerical and anecdotal information I input to the app.The numbers assigned to pain levels, along with specific locations where pain develops, a way to describe the type of pain, what medications were taken and if effective, and alternative activities (or reduced activity) to also manage the pain. I’ve been adding to the choices in the app, because at this age I am experiencing those random pains associated with ageing as well as my PHN.
The descriptors for different pains that they have provided are very effective, and they even allow me to add my own. I have found over time that I will enter the data at various times of the day, depending upon my busy schedule (NOT! Chronic pain is exhausting and keeps me busy) or my inclination to record at that moment or at the end of the day.
The other valuable feature is the reporting function. This app records all the information and I can call up a variety of report forms to help me in reviewing my history of pains over a specific time period. In the app you can input all the different medications you are taking, the dosage and the results you are seeing. If the medication is not listed you can request itbe added. This app covers a lot of ground in studying your world of pain.
One of the best features though has got to be their “daily reflection”. This gives me an opportunity to rate my day from 1-10. It also then offers a list of activities I did, and there are lots; again you can add your own. Just check them off in the list, and smile.
You can add your own notes for individual pain records for that anecdotal information which I use a great deal as this has become my journal. I record my thoughts and experiences in, not all, but most pain records. In the reflection module I always add notes. I record what I did and how I felt with different events, activities and weather.
What have you tried to manage your pain?
By this time I had been trying several different ways to journal my daily pains. Over the years I have sporadically done a diary or journal; it’s never lasted very long. The Calgary Pain Centre is very big on journaling pain so I began the exercise once again. They had a few sample methods. I tried a couple for a while; none really fit for me. So I developed a spreadsheet that I used to track the daily intake of food and beverages, medications, activity, moods, and even the weather. I assigned numbers to rate everything, and then rated the day overall. I did see some trends developing; that was exciting. But then I was just getting tired of all that. I had done it for over a year! Which is very long for me.
However one of the triggers that have had the greatest consistency and highest impacts for me, is changes in the weather. It’s a very tough trigger to try to control or avoid without moving. So the combination of exhaustion, medication’s side effects, and the weather I have found my daily schedule includes two to three 45 minute naps daily, come rain or shine. At one point I was taking 4 naps. Speaking of nap time….
One of the most successful techniques that I have found for managing my pains is meditation. There are scads of apps out there for guided meditation and I’ve settled on two that I use when settling down for a nap.
I’ve also looked into a variety of homeopathic remedies and alternative treatments. I was getting acupuncture therapy for about a year. It did help initially but proved less effective after a while. Another alternative treatment I have tried is cannabidiol (CBD) or medical cannabis. Beware though, just like any pharmaceutical or homeopathic treatment, results will vary. Not all cannabis is created equal and I did a great deal of online research on this. In Canada, we’ve had medical cannabis for years and I’ve been on it for almost 6 years. It’s just another item in my toolkit to supplement my regular prescription and distractions on the nasty days. The people currently selling cannabis products in Canada really don’t have much background in the product and its medical use. Be cautious if you are considering this. Start low; go slow.
Any inspirational tips to help others who might be looking for help as well?
There is hope; there is help out there. Be wary of surefire promises of cures. While I was still working a stressful job I used to get monthly massages which
were wonderful. Such has not been the case since shingles. I’ve tried different therapists, but to no avail. I see that profession much like trying to find an auto mechanic. They all have similar training, the same equipment, but some are simply far better at it than others. As for medications, the same holds true. What works wonders for one individual may do nothing for your pain. I’ve seen this in Facebook groups; I’ve tried a few different med’s myself.
I felt the medication that was working the best for me for the past year was not quite doing the job as well. So I went to our family doctor; he weaned me offthat and tried another; it too required a ramping up stage; it work less effectively. So I had to ramp down that and ramp up to a slightly higher dosage. It worked, but the weaning and the ramping made for a miserable Summer for me.
One critical component of my life with chronic pain is my spouse, wife, significant other, partner, soul-mate. As an individual with chronic pain this is at least for me critical to have such a loving supportive person in my life. People living with chronic pain can be a**-holes; we are not always fun. Living alone with this would be miserable. Some support groups either local or online can be life-savers.
My wife has also been a remarkable support encouraging me to do regular exercises. Of course I had stopped exercises altogether when my shingles first erupted. It did take me a long time to get back into it. That too can be frustrating; as much as we know exercise helps and does make us feel better, at the times it is so tough to get yourself motivated. It also take a great deal of patience and self-motivation, and/or that of a spouse). In my healthy days I used to swim 2-3 times a week; every so often I would drop out of that, and it was always tough to get back at it. I used to do 40 pool lengths and after a break, it was tough to even complete 10 lengths; but as they say, “start low, go slow; build upon it each week”. Now we do 10-15 minutes of stretches 3 times a week, get out for a walk every day, usually 30-45 minutes. I no longer do vigorous exercises, but enough to get the blood flowing and some fresh air.
There are a lot of tools I have in my toolbox; having that variety is valuable too. Try different logical things. Be wary of expensive cures; sadly some bad actors out there know that people with chronic pain become desperate and they prey
upon us. I’ve experienced this a few times. Do your research. Claims of medical wonders must pass peer reviews to have any credibility in my world. I am fortunate in understanding how research is built; some organizations use percentages or other variables in a deceitful way; it’s easy to play the numbers in any type of research. Some obscure therapies have been tempting, but I’ve steered clear of most of them.
One more program I entered was one focusing on your happiness factor. This online free course offered by Yale, Dr Laurie Santos, was actually aimed at
stressed-out university students. The take away here; social media rarely brings you happiness or calms a person. Personal contact with family and friends is vital. There are exercises (again journaling!) to help you move into a happier life.
Finally, what I really like about this MMP app and the “daily reflection” is that it encourages me to reflect back on things aside from my pains of the day. Much like many with chronic pain, I have good days and bad days; well actually everyone does, right, eh!? 60/40 prevails! And is an OK score for me right now.
This makes me focus on better things, and acknowledge that my day was not simply filled with pain. And that is a very good thing!
~sincerely yours, gwd.
"every day is filled with new things just waiting to be discovered"