“Research concerning new treatments for fibromyalgia and chronic pain are ongoing. The problem is that many of the individuals living with these conditions don’t even know that the research is taking place. Caleb Cummings, contacted the NFA and asked if we would share his experience of participating in a clinical trial at Stanford University, where they were looking at a possible new way to help relieve the pain of people with FM. Of course, we said, YES!”
Lynne Matallana, NFA, President
Living with Fibromyalgia as a Man
By Caleb Cummings
It was around the age of 23 that I began to experience pain related to fibromyalgia.
I was training to run a half-marathon in Chicago, and I was hitting the local gym to practice running as often as I could. I was never very athletic, preferring to be a nerd over a jock for most of my life. But I decided to make it my goal to complete the half-marathon and began my intense training. It wasn’t long before I started to feel knee pain, which, I mostly ignored like many 20-somethings do. It couldn’t be anything significant because I thought I was invincible. But when I went to see my doctor, I was told that I was suffering from a common knee injury and I would need x-rays and physical therapy.
Despite the physical therapy, the condition lingered and never resolved. Nothing showed up in the MRI either, but my doctor diagnosed me with knee plica syndrome and explained that this was what was causing my pain. Knee plica problems usually get better without surgery and the basic treatment is ice and rest. However, the pain persisted, and I eventually decided to pursue surgery, which ended up being a total waste of time, money, and energy. After surgery, I continued with even more physical therapy.
Over the years since my attempt to train for a half-marathon, in an effort to get healthy, be active, and look fit, I exposed my body to a variety of sport and physical regiments. Since my knees continued to complain, I decided to try swimming. Not only does swimming provide a cardio work out, it’s also great on your joints! But after taking a beginner swimming class for several weeks, my shoulders began to complain, most notably my left. Similar to my marathon training, I worked through a lot of the pain, hoping it would resolve on its own. It didn’t.
The “pain mystery” repeated itself again, but this time, with my shoulders. X-rays showed that nothing was wrong, but despite doing physical therapy, the pain lingered. The pattern and the process repeated itself. An MRI on my shoulder, a puzzled doctor, and then arthroscopic surgery, followed by more physical therapy, and then back to square one. While rehabbing my shoulder post-surgery, a sharp pain in my wrist gave way to a dull, numbing sensation that eventually spread into the thumb and forefinger and back of my hand. Out of apparent jealousy, the left one followed suit in a matter of months.
In the decade that followed my knee pain and surgery, I found myself adding joint after joint to a growing list of unresolved, chronic pain symptoms. As a man, there is enormous pressure to hide and ignore your pain unless it is life-threatening. I often would work through the pain and only admit to a few close family members or friends that I was even experiencing it. It wasn’t until 3 years ago that I approached my doctor with a plea for help. I was taking dance classes at the invitation of one of my co-teachers, to get some regular exercise, when I began feeling pain in my ankles that eventually spread into the feet and toes. The pain was much like the neuropathy in my hands, which I had by then become accustomed to. Now add to the list, elbow pain from biking, neck pain from sleeping in certain positions, and lower back pain that probably developed from bending down frequently to be able to talk to my elementary school students in the classroom.
As a man, there is enormous pressure to hide and ignore your pain unless it is life-threatening
The truth is that fibromyalgia is an elusive diagnosis that generally refers to non-specific, chronic pain, often accompanied by other symptoms, including fatigue, sleep problems, and even cognitive issues. In early 2016, my doctors at Kaiser Permanente prescribed medications that helped to alleviate the symptoms, and I enlisted in a pain management program. I was never comfortable with the idea that I would have to take the meds for the rest of my life, but it was my only option, apart from living as healthy a lifestyle as possible, including regular exercise, yoga, a vegetarian diet, and fewer alcoholic beverages. I even became a vegan for a period of time, but eventually settled on a more vegetarian or pescatarian diet.
Stanford Research Study on Fibromyalgia Treatment
Life went on, the pain continued, and then about a year ago I saw an ad on Facebook about a new research study on fibromyalgia at Stanford University. I decided to apply and completed multiple and lengthy surveys to see if I met the criteria for the study. Eventually the university reached out to me to see if I would like to participate. Being a busy teacher at the time, I only half-committed to the study, backing out at least twice due to scheduling conflicts and lack of transportation to Palo Alto. After kicking the can down the road for over 6 months, I finally committed to the study staff to attend the initial screening at the University. I met the evaluator at the Department of Psychiatry and Behavioral Health, who kindly gave me more information, the purpose of the study, medical history surveys, consent forms to sign, and had me take all sorts of tests.
The study researchers informed me that the purpose of the study was to test the efficacy of a new treatment for people diagnosed with fibromyalgia, called “Transcranial Magnetic Stimulation” (rTMS). The treatment involves electromagnet stimulation to the scalp. They explained that a magnet turns on and off rapidly, synchronizing electrical currents with the magnet. Evidence suggests that brief treatments of TMS can help patients with pain. The informational materials they provided noted that TMS is already FDA-approved for the treatment of depression but has not yet been approved for the treatment of pain. The research also sought to create an effective form of treatment by combining hypnotherapy with TMS, called “rTMS-augmented hypnotic analgesia.”
After the screening, I was told that I was a great candidate for the study and appointments were made for three sessions. The first of these would be an MRI scan of my brain that would complete the initial screening process. The following two visits would combine both rTMS and hypnotherapy. I was also informed that I would have a 50% chance of being selected for the active rTMS and 50% chance of receiving the sham (pretend) rTMS.
I was excited to try a new treatment, even if it was experimental. I so wanted to find something new that would address the myriad of symptoms that had dogged me for years. But I had to also understand that the treatment might not work, or I might receive the sham treatment. I decided I wouldn’t be any worse for trying, and I felt that if I could help contribute to the science of treating FM, it was something important I could do. I also decided that I would share my experience with the FM community by journaling about my experience of participating in the clinical trial. For so long I have tried to hide my pain from everyone for fear it would stain my public persona, but now I felt it was time to speak up and hopefully help others. I hoped that with this new treatment not only could I help advance the science of treating fibromyalgia, but I could also gain a sense of openness and catharsis for myself. Even more so, I wanted my experience to shed light on an often times misunderstood condition that affects millions of people in the U.S. and worldwide.
I woke up around 5:30 AM to get a car to Stanford in Palo Alto, California. Before beginning treatment, I was told by the study researchers that they would need to conduct an MRI of my brain as a baseline before beginning the TMS treatment. I’ve had MRI’s before, but never of my brain. There’s always the fear, however small, that mapping your brain might somehow produce evidence of something seriously wrong, which I was told would be reported if they came across anything in their findings. After completing the session and reviewing my own brain images with unscientific eyes, I didn’t see anything that looked abnormal.
The MRI was conducted at Jordan Hall, and prior to going into the room with the MRI machine, I completed a standard pre-MRI protocol review, which made sure that I had no metal in my body and that I was safe to enter the machine. I also gave a urine sample and confirmed that I had no caffeine that day. Having had two MRI’s in the past, I knew the drill. I changed into hospital scrubs and was informed about the series of scans that I was about to have. I was instructed to stare at a plus sign on the screen directly above my field of vision. The machine made loud clicking noises, beeps, and pops, and the bed on which I laid moved centimeters backwards and forwards every so often.
Each scan took approximately 3-10 minutes, and each session lasted about 45 minutes. I was given special instructions over the speaker by the investigators in between each scan. I took advantage of each lull to reposition the tight pillows on either side of my head that locked my head into a supine position. During one of the scans, I was told to let my mind go blank and to focus on the plus sign projected on the screen above me. I put my meditation skills to good use and focused on taking deep breaths and keeping my gaze on the image. Over the years, I came to adopt meditation as a coping strategy, one that medical professionals had preached about in my pain management classes and consultations. During another very loud scan, I closed my eyes and relaxed into the rhythmic reverberations and beats of the MRI machine.
Afterwards, I was given some tea and some printed images of my brain to help satisfy my curiosity.
It’s strange looking at an image of your brain for the first time; the computer inside my head
I began my first main treatment session at Stanford University in the same place that I had my initial MRI done, Jordan Hall. One of the initial researchers I had already met was there, as well as a woman with whom I was unfamiliar. Throughout the study, a team of research assistants were handling my case. This meant that new faces would appear at different sessions and I couldn’t keep track of everyone’s name. The session included TMS treatments, hypnosis, and MRI scans of my brain, however I didn’t know if the treatment was an active or sham treatment.
The session began with the new researcher explaining a simple video game that I would be playing while getting MRI scans. Appearing on the screen was a word printed in either red, green, blue, and yellow. I was given a hand device and instructed to push the corresponding buttons that signaled the aforementioned colors when they appeared on the screen. The task was to ignore the meaning of the word displayed and only signal what the printed color of the word was. For example, the world “yellow” sometimes appeared in a green color and I would have to push the button for green instead of the button for yellow. The researchers had me engage in the task a couple of times during the MRI scans; two within a 4-hour period.
Next I was given a hypnotherapy session in which I was told to imagine that my left hand would float up on its own and then to compare the amount of control I had over my right hand, as well as any sensations that I felt when I finished. The hypnosis session would be repeated twice more in-between TMS and MRI scans. The researcher had me wear a band around my waist that monitored my heart during the process. The purpose was not clear to me, although I remember my evaluator in my initial screening saying that I was a good candidate for the study because I was somewhere in the middle between “unhypnotizable” and “hypnotizable.”
After hypnosis, I began my first treatment of TMS, (still not sure if it was real or sham.) Researchers stuck some chords to my temples and used other strange instruments on my scalp that I could not see well but could only feel. Most notable was when they placed an instrument alongside my head and flipped a switch that emitted what felt like low-level, electrical impulses. The sensation was uncomfortable at first, but after a few seconds I seemed to adjust to the strange feeling throughout my head and jaw. The researcher explained that he was looking for twitching in my hand since the machine was sending the signal into my left lobe. At this time, I remembered learning in grade school about how the left brain controls the right side of the body and right controls the left side of the body.
Different than my initial MRI scan, this time I was assessed for longer periods of time in the machine and wore ear plugs which had headphones inside them. The purpose of this was to hypnotize me with instructions for the color game, while the machine scanned my brain. Wearing nothing but scrubs, they placed a heart monitor on my thumb, a waistband that measured my breathing, and ear plugs that relayed instructions through hypnosis throughout the process of taking brain scans. I later commented to one of the researchers that it was sometimes difficult to follow the hypnosis recording over the loud noises that the MRI machine was emitting. Also, having some neck pain from time to time, it was not always comfortable to stay completely still in a supine position for the necessary long periods of time that it took for the scans to be completed.
After approximately four hours, I had completed the same progression twice: hypnosis, TMS, followed by a lengthy MRI. Visibly tired from lengthy scans, the researchers assured me that the next and last MRI sessions would be much shorter.
On my fourth and last visit to Stanford, the process from the earlier session was more or less the same, except there was different stimuli than the video game I played with the button box on my first main study visit. Researchers explained that I would be making a pain assessment through the use of an “MRI-safe thermode stimulator.” Instead of the video game that I played during the scans on my previous visit, the thermode was a device placed on the inner forearm of one of my arms that emitted different levels of heat. At the outset of the session, two researchers tested my pain level threshold and found a level that was tolerable for me to stand during this part of the study.
They informed me that, although uncomfortable, the hot sensation I would feel on my arm could not cause permanent damage and was necessary in order to gauge the effectiveness of the augmented hypnotherapy during MRI scans of my brain. It was an uncomfortable sensation, but it escalated infrequently. They gauged my level of pain on a scale of 0 to 10 and also asked me my level of discomfort on the same scale. As it was explained to me, the heat sensation would be similar to when you let your hands feel the temperature of water heating up and when you realize it is just about too hot for your skin. Once they had found the appropriate pain threshold for me, they used that data to make an algorithm for the thermode pain assessment that I would take part in during the next two MRI scans.
After changing into my scrubs for the last time and leaving one last urine sample, I was administered the same session of hypnosis from before. Personally, I don’t know how much I am persuaded by hypnosis. I tried to let my mind and body be influenced by the researcher’s suggestions, but I never felt as though I was out of control with my actions. I secretly hoped that, somehow, I didn’t lack the necessary imagination to be a good candidate for hypnosis with regards to pain treatment, but I decided to go with the process the best I could and do what felt natural to me.
The researchers, who always tried their best to make me feel comfortable, guide me back into the MRI machine where I lay as still as possible during the calibrations, the beeping, the taps and zooms that jumbled about me for the following 40 minutes. The new device on my inner forearm was set and ready to begin emitting different levels of heat, warming up and then building to the highest level, or threshold of pain, I could stand for just a few moments.
During the thermode stimulation, the MRI machine was scanning with loud buzzing noises. In my right hand I had the button box, which was used before in the video game. I used the pointer finger button and middle finger button to either subtract or add to a level five threshold pain on a scale of 0 to 10, which was projected on the screen above me during the assessment. Over the audio came hypnotic instructions from Dr. Spiegel, the author of the study and a skilled hypnotist. The instructions told me that during the pain assessments, I should imagine the crescendo of pain as only warmth in order to filter out any discomfort. Only once or twice did I wince at the pain that briefly reached a level that was very uncomfortable. I then experienced a second round of heat sensations, but this time with just instructions and no hypnosis. All the while, the MRI machine beeped and clicked away.
After the lengthy session, which was actually a bit more comfortable than my first study session with the video game, I was directed back to the room where the TMS was administered. Once again, there was a new researcher accompanying the team. She was very nice and periodically asked me questions about what I did for a living or what I liked to do. She was waiting for Dr. Spiegel to come and supervise her administration of TMS. By the time the doctor arrived she had me sitting in a chair hooked up to several different wires on my temples and different instruments that were either touching or hanging by the side of my head.
The doctor entered, introduced himself, and sat across from me. The research assistant began my second TMS treatment. When he gave the okay, the researcher flipped a switch and with an uncomfortable jolt, the first round of TMS began. It lasted for approximately a minute and the researcher gave me a countdown, so I would know when it would end. The first minute was a strange, uncomfortable sensation that felt as though a persistent headache was present in my left lobe. After a few seconds the jolt sensation began to lessen, even as my jaw was clenched due to the electrical current. Once the round of TMS had ended, there was a 15-minute break before doing the last TMS. During this time the doctor and researcher calmed me by making small talk.
The doctor asked me standard questions about my fibromyalgia and its history. I told him about my medical history, all the joint problems I’ve had, and shared that I was hoping to write an article about my experience of taking part in the clinical trial. I took advantage of the moment to mention this fact and to see if I could use him as a source of information about the study. He was enthusiastic about the idea and told me, “your pain is real. Many people believe that if you have a physical pain, it must be brought on by physical factors, or that if you have a mental problem, it only comes from emotional issues. But what we now know about the brain is that they influence each other in different ways.”
Your pain is real
I asked him and the researcher if there were many other men in the study as I had read that most patients with fibromyalgia, or at least those that report it, are women. They both acknowledge that fact as being true. They said there had been a handful of other men in the study, but not that many. Out of curiosity, I also asked if there had been any other treatments developed for fibromyalgia that the doctor knew of. He conceded that there had not aware of other forms of treatment developed to date for fibromyalgia, although, he told me about a pain relief hypnosis that he had developed and can now be used with Alexa technology. I made a mental note to try it sometime. I later learned it is a free Alexa audio called, “hypnosis pain relief,” to help people manage chronic pain symptoms.
After the TMS, I was given another round of hypnotherapy, which had become very repetitive by that point, and I went back into the MRI machine and performed the same series of tasks with the new device attached to my arm while under hypnotherapy. Luckily, I had become a bit used to lying in the machine and while it was uncomfortable as before, I knew it was the last time I would have to be in the machine. After the scan, we went into the hypnosis room where an assistant administered the final session to me. By this time, I was cold and tired, but also relieved that the sessions had ended. As before, I reported my pain level in that moment and what my average pain level had been for the day. The researchers congratulated me for sticking through the sessions and for my contribution to the study.
The researchers congratulated me for sticking through the sessions and for my contribution to the study
I left feeling a sense of accomplishment for having finished the study. I was also glad that I was able to contribute in some way to furthering a treatment for a disease that has, for many years, eluded medical professionals. I can’t pretend to understand all the research behind this study, but I understand researchers are hard at work to develop new treatment methods. And although women are the majority of those that report chronic pain related to fibromyalgia, I realized that there must be more men out there, like me, that are afraid of seeking professional help and disclosing their symptoms due to cultural expectations of men. The truth is that fibromyalgia affects both men and women. Hopefully, with more research and time, a viable treatment will become available to both men and women that experience chronic pain and the cultural stigma of men reporting their needs will be a thing of the past.
I can’t pretend to understand all the research behind this study, but I understand researchers are hard at work to develop new treatment methods