May 28, 2021

Meet Wayne: Taking initiative to manage his chronic pain

By Manage My Pain User, Wayne
Positively managing chronic pain
Mariana still has taken positive steps to care for herself so she can overcome her chronic pain
Wayne uses the Manage My Pain app as one of the many interventions he uses to self-manage his chronic pain. After suffering from chronic pain shortly after retirement, Wayne has taken the initiative to self-teach and learn many different ways to continue living his life despite chronic pain. His resilience, as well as the support of his partner, has provided him with the perspective to focus on the better things in life, instead of a life full of pain.

We interviewed Mariana below.

Tell us about yourself
Born and raised in southern Manitoba, I graduated from college with a diploma in Advertising Arts, major in photography. I began my career as a photographer in 1973 at a small local television station in Saskatchewan. Over the years I held several positions in television, and in 1997 moved into a sales position in newspaper here in Lethbridge, and later in the hotel industry in Lethbridge. I finished my career back in television doing local advertising sales for 7 years. I retired from a career in the media in December of 2014 at the age of 61residing in southwest Alberta, Canada.

I have always led an active lifestyle, swimming, jogging, cycling, enjoying the outdoors, camping, fishing, hiking in the mountains. Once I reached the age of 50 my wife and I began taking an annual 2 week winter vacation to the warmer climate of Mexico and Cuba. This was something we were really looking forward to expanding in our retirement.

When did you first start experiencing pain?
Two weeks into my retirement I felt an intense pain in my groin. Suspecting it might be some prostate problem I went to our family doctor but he found nothing wrong. On January 31st. I went for a fitness swim class at a local pool; the next morning I awoke and found a very small rash that started on my right buttock. I thought nothing of it, applied some lotion, and carried on with my life.

However, the following Tuesday I was at my regular painting class, and severe pain developed. I left the class early and went home but eventually, I visited the emergency department at our regional Hospital as the pain was so bad. The diagnosis was Herpes Zoster or commonly known as Shingles. I was given an antiviral prescription and two more (opioids) for pain relief.

How did your pain evolve?

For the following 8 weeks, I spent most of the time in bed. It was a debilitating level of pain that felt like a severe toothache and often ramped up to feel like that old “brain-freeze” we experienced as children drinking a frozen slush drink or gulping on some ice-cream.

I popped those opioids as prescribed but they left me in a stupor and I felt like a zombie. I had a 12 hour driving trip to our son’s wedding in July, and I knew Icould not function or safely drive in this condition.Our family doctor said it usually lasts about 3-6 weeks but there was no sign of relief, so we discussed further treatments. All that seemed open were different painkiller prescriptions.

What challenges have you experienced getting the care you needed?
Challenges abound, because there are thousands of people suffering with some form of chronic pain in Canada. It appears little research has been done specifically on my condition, namely Postherpetic Neuralgia (PHN), the condition that shingles develop when it lasts over 12 weeks. Having studied marketing research, I was quite in-tune with digging into the web to find out as much as I could.

1 in 3 people will experience “Shingles” in their lifetime, a very painful but short-lived condition for most people. Sadly many people will experience recurring bouts, while roughly 10-15% of us will develop this ongoing neuralgia.

After about 12 weeks, my doctor submitted my name to the Calgary Chronic Pain Centre, operated by our provincial AHS, Alberta Health Services; the response was quite prompt. The good news; I am on their wait list. The bad news; the wait list range is anywhere from 9 months up to 4 years, depending upon the severity of your particular case. More good news though; PHN ranks very high in severity, and I was admitted after merely nine months!
In the meantime, I continued with research and found a local AHS program, a seminar and subsequent workshop series on “Living with Chronic Conditions”. This became a valued resource; once completed AHS did a remarkable job of followup.

I attended another seminar with AHS, this time in Calgary. Here I also discovered they offer a remarkable resource available on YouTube dealing with ChronicPain. It contains over 30 short 10-12 minute video lectures on a vast array of topics that impact people in various ways; everything from stress, foods, exercises, physiotherapy, socializing, meditation, psychology, breath, and journaling and lots more.
Once I did get into the Chronic Pain Centre program I was interviewed by a physician, a pharmacist, a physical-therapist, and psychologist (several times).
The main take-away with this one-year term program is to discover ways to manage your pain. And in that respect it helped a great deal. But by then, I had been living with this pain for over 2 years.
You cannot change the pain, but you can take steps to make changes to cope better with your pain.
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"