Making Progress and Feeling Hopeful
Annie is a 68-year-old woman from British Columbia, Canada who lives with fibromyalgia (FM), a condition characterized by widespread pain and fatigue. She spent years being told by healthcare providers that all her tests were normal, and that she was fine. But Annie was not fine; she was in pain and depressed, and she did not feel like her life was worthwhile. Things got so bleak that Annie even brought up the possibility of medical assistance in dying (MAID) because she had no idea how to move forward. Fortunately, though, Annie found a way forward when she started working with the team at an integrated pain clinic. Annie’s experiences with pain were validated and believed, and through the clinic, she connected with a broad range of supports, including a peer support group with other patients. Interventions through the clinic have given her enough pain relief to start moving again and sleeping better, and these changes are further supporting Annie in making positive changes. At this point, Annie told me: “I’m doing the work, and I am making progress.” And in seeing this progress, Annie’s mood is lifting, and she is feeling hopeful, which is what living well with pain means to her.
Feeling Supported and Believed
Before Annie began to work with the pain clinic, she was feeling stuck. She shared with me: “I was really stagnating in the pain and not knowing how I was going to be able to move forward.” Her pain and fatigue were being dismissed by her doctors, and she had begun to feel hopeless about the possibility of things getting better. She told me:
When it was really bad, the pain was so much I couldn’t get comfortable to sleep and then the lack of sleep increased the pain, so I was in this vicious circle and really depressed feeling like, what’s the point if I’m not enjoying myself?
None of the pain medications she had tried had given her any relief at all, and Annie was ready to be done with all of it.
Things began to shift for Annie when she started working with the pain clinic and connected with a team of healthcare providers who believed her experiences. She shared with me:
I do really feel well-supported and validated by everybody at [the pain clinic]. I was really doubting myself until I got there because a lot of the practitioners that I saw would, not all for sure, but many, just didn’t know what to do because all the tests come back you’re fine, you’re fine, but I sure didn’t feel fine, and so yeah, I got to say it’s really nice to have that validation that they are hearing me and that I’m not making it up.
Annie told me: “I have a wonderful support team in place now: kinesiology, acupuncture, [massage therapist], and personal trainer.” She also sees an anesthesiologist at the pain clinic, who has supported her with interventions that have allowed her to move more and sleep better, and a pain psychologist, who she has found to be a “terrific advocate on [her] behalf.”
Annie has a particularly wonderful relationship with one of the kinesiologists at the pain clinic. She spoke about how this kinesiologist asks, “How are you feeling and how is your body feeling?” which makes her feel cared for as a whole person. This kinesiologist will also make space for processing challenges that Annie is facing. As an example, Annie told me:
If there was some big family issue, like it was going on with the whole family, when my dad was dying, she allowed me some time to talk before we got to the exercises. I don’t expect her to be my counsellor, but she’ll help me diffuse something that’s a really big issue.
In addition to offering movement rehabilitation and emotional support, her kinesiologist has been a huge help practically, connecting with other helpful resources.
Finding Her Support Group Family
Through group sessions at the pain clinic, Annie connected with other people who were facing similar challenges with pain and fatigue, and independent from the clinic, they formed a support group that has been meeting every second Thursday for years now. About this group, Annie told me:
I have no support from my family, they’re just like, you look fine, so you are fine, and so that was quite hurtful, but now I have my family, a support group family, that was support formed out of [the group] sessions.
Through this group, Annie has been able to access all different kinds of support. Annie shared with me: “The group is really well resourced, there’s a lawyer, a management consultant, some counsellors, a nurse.” They take turns doing research on things and sharing the information with each other, and they have also had a couple of physicians come and speak to their group.
Being a part of this group has also helped Annie connect more with feelings of gratitude for the things that she is able to do. Historically, Annie was a very active person, and sports had always been a big part of her life, especially tennis and skiing. Not being able to do these kinds of activities in the way that she used to has been a painful loss for Annie, and there were times when she would focus a lot on the things she could no longer do. Annie told me though: “I am learning what I can do and not dwelling on the loss of my ability to play tennis or go skiing. Not stagnating in the pain.” Part of what has supported Annie in focusing on what she can do is being a part of this support group and connecting with others who are more limited than her. She said to me: “Some people in our group are bedridden and housebound and I can at least do some of the things I want to, some of the time.” Being in the group has really helped her to be able to genuinely appreciate the things that she is able to do.
I Have to Do This
Through the pain clinic, her support group, and the book An Anatomy of Pain: How the Body and the Mind Experience and Endure Physical Suffering, which was written by a pain-specialized anesthesiologist, Annie has come to see herself as the person who is ultimately responsible for her life and her health. She said to me:
I think reading that book, The Anatomy of Pain, really drove it home that as an anesthesiologist, he could only do so much, and that I can rely on doctors for some help, but I have to do the work.
Annie elaborated further: “I can’t have a doctor or [my kinesiologist] with me all day every day. I have to do this, and I have to roll up my sleeves and learn as much as I can.” And Annie has been doing exactly that. She told me: “It takes a biopsychosocial approach to make any process in managing chronic pain. That means hard work and perseverance on my part, while I would like a ‘silver bullet,’ there isn’t one.” Annie has had clinicians reflect to her that the persistent effort she makes in researching new possibilities and following through on recommendations is evident in the positive change she is experiencing. She continues to become more informed and empowered as she navigates her challenges with pain, and as she does the work, she is seeing progress.
Pacing, which is broadly about balancing time spent on activity and rest for the purpose of increasing engagement in important and meaningful activities, is an essential part of living well for Annie. She told me: “I have to take pacing seriously. If I feel good, I do too much, and then I crash for a week and then it was like, oh that wasn’t any fun.” To avoid crashing, Annie has a weekly schedule where she maps out her week and tries to create balance across her days. She explained to me her thought process when she notices that days are getting too full: “Okay, this day is getting too busy, what can I move to the next day to keep that whole pacing thing and allow time to rest.”
Working with pacing has allowed Annie to get back to skiing and spending time in the mountains. At this point, she can no longer go skiing with the friends she used to ski with because of their intensity level, but she shared with me about how she has made skiing possible:
I found a friend that’s my speed. We go out for a few runs, and we have lunch, we do a couple more, and we go home. And I may only ski two or three times in a year now but just being in the mountains is my happy place, so just even getting up there, it is a lot of effort to do that again pacing myself, but it is my happy place so if I can get up there a couple of times a year, then that’s also good for my mood.
Getting Comfortable Setting Boundaries. A part of living well with pain for Annie that relates to pacing has been learning to set boundaries with other people around what she is able to do. She talked to me about her friends forgetting and pushing her too hard and having to work on communicating about her limitations. Annie acknowledged to me that the way she was raised has made it difficult for her to speak up about her needs. She shared with me: “I’m not very comfortable setting my boundaries with people but if I don’t, then I’m going to suffer.” One reason Annie finds it challenging to communicate with others about her limitations is because she often wishes she was able to do more than she can. But she will also find herself feeling badly about the way her limitations might impact on others. Despite the discomfort she feels, Annie has been slowly pushing through these feelings and the old patterns of not asserting her needs because she knows that a part of living well with pain is being able to communicate with others about what works for her and what does not.
Helpful Interventions
Although Annie has come to see the work that she is doing as the foundation of what will support her in doing better, she also told me about a few different interventions that have been helpful for her.
Psilocybin. The psychedelic drug psilocybin has been helpful for Annie. Because psilocybin is illegal, it is somewhat challenging for her to access. Cost has also been a barrier to access, and Annie can only afford to do psilocybin once per year. She told me a bit about her experience with it:
I just went underground [to access psilocybin], and it really was great for neuroplasticity because I didn’t feel any pain at all and normally everything hurts. So, I found it like a reset for me … The physical pain will come back within a day or two but the kind of I guess mental or emotional release lasts a long time, like six months. And I microdose too that helps with my mood and the irritability one feels when you’re in pain and not sleeping.
She shared with me a bit more about the impact of microdosing psilocybin:
I think also the psilocybin has made me more resilient too. It’s hard to explain because it’s quite subtle, like when I microdose I don’t feel anything necessarily, I definitely don’t feel a high, I don’t really want to anyways, but I know if I haven’t taken it, I feel much more irritable, much less able to cope.
Again, the cost of using psilocybin and the fact that it is illegal are barriers to access for Annie, but she is grateful that she has been able to afford to try different things like psilocybin and makes a point of acknowledging that not everyone living with pain can afford to try things.
Cannabis. Sleep has been an ongoing challenge for Annie, and cannabis is something that has been helpful with her sleep challenges. She said to me:
I was finding that I was getting to sleep easier, and I was trying to kind of drop off the cannabis but then that really emphasized where it does help me because when I didn’t take it, the nightmares and night sweats came back. I just wake up soaked, and the cannabis oil stops that.
Fortunately, cannabis is now legal, so Annie does not experience the same barriers to access as she does with psilocybin. The way cannabis helps to make better sleep possible supports her in doing better overall. As Annie put it, “The world looks a whole lot better when one can get some rest.”
Radiofrequency Lesioning. Radiofrequency Lesioning (RFL) is an intervention that uses heat to destroy tiny sensory nerve endings. The second time Annie had RFL done by an anesthesiologist at the pain clinic it made a meaningful difference in her pain. The physician suspected that some of the issues in her hip were coming from her back, and the intervention proved him right. Annie told me: “Before when I would go to bed, the back pain and hip pain like I just could not get into a comfortable position to get to sleep.” After this second round of RFL, Annie found herself able to sleep better and able to move more, and that is when things really started to shift for her. Sleeping better positively impacts on her mood, energy, and irritability. And with respect to moving, Annie said to me: “I have much more mobility and I’m getting stronger and getting more endurance.” With her kinesiologist and personal trainer, Annie has been working hard to make the most of her mobility gains.
Having Hope
Through the support, the empowerment, and the relief, Annie finds herself in a place where she feels like her pain is much better managed. She told me: “Now that it’s better managed, I can feel the depression lifting.” And she shared with me: “With my mood lifting, I am able to socialize a bit and have fun. That gives me hope.” Annie emphasizes that feeling hopeful again is an important part of what it means to be doing better and living well with pain for her.
As Annie watches good friends start to face different health challenges, she is also connecting with the uncertainty of life, that it is not a guarantee for anybody, and feeling motivated to make the most of things. During this research project, Annie went travelling again for the first time in many years. I asked her about what supported her in feeling ready to take that step. She shared with me about some of the health challenges her friends were facing, and she said, “I’m like, oh, I really want to do this, and if I don’t do it soon, we don’t know what’s going to happen, so seize the day.” The challenge for Annie is to seize the day in a paced way that keeps her pain well managed and supports her in staying engaged with the things she enjoys in life—and she is getting better and better at doing that.
Staying Connected with Others
One of the things that was most challenging for Annie was the way her physical limitations impacted on her social life. Annie shared with me about not being able to do the activities she enjoys: “I really grieve that I couldn’t do those things because that was my social life. I would go skiing, I would play tennis, I would go kayaking and do all those things.” Despite these barriers, Annie still put an effort into maintaining her social connections and doing so is something that Annie would recommend to others struggling with persistent pain. Not only because of the way that social connection supports wellbeing, but Annie also told me that she found many of the things and people that have helped her through her friends. Another suggestion that Annie had for others living with pain was about doing the work. When I asked her about advice for others, she said to me:
I know it’s a hard journey but to persevere … you have to try and then there’s a little gain here and a little gain there, like we all want the silver bullet but it’s like, there isn’t one and it’s baby steps.
It is clear from Annie’s story that she has followed her own advice. She is persevering, and step by step, she is moving forward into a life that holds more of what she enjoys and more hope for her future. And even with that progress and hope, Annie acknowledged to me: “It’s really hard sometimes.” It is really hard, and Annie is doing this really hard thing.