The first clue that my back pain was going to be something to deal with long-term, aside from my doctor realizing my legs were different lengths, was at the physical therapy office. At age 16, standing 5’9″ and weighing 103 pounds, the therapist traced both sides of my spine with marker, and then he started to call the other therapists in to take a look. They each exclaimed and then as a group discussed the extreme curve in the middle of my back. I didn’t feel self-conscious about standing there in my swim suit in front of the group because we lived at a lake and I spent most of my time, weather allowing, in swimwear. I was a little put off, though, by the “oohs” and “wows” from the professionals who certainly had seen scoliosis many times previously. Apparently, my curve was through just a few vertebrae but extreme in its degree. At 16, I’d reached my adult height, so the convexity could not be corrected. The best I could do was exercise my core muscles in an effort to support the weakened muscles surrounding my spine. As I sit writing this, I can feel the exact spot of the curve; it still hurts.
My dad took me on as his project, acting as my personal trainer every day after he got home from work. This definitely improved my core musculature, but I didn’t understand at that age that the exercise regimen would be necessary on an ongoing basis in order to maintain the pain relief. After a few months, I thought I was good to go. School was back in session, my senior year, and life got busy as it invariably does. I’ve revisited those same exercises periodically over the years when the pain increased and interfered with daily life.
At about the same age, I was diagnosed with tinnitus, chronic ringing in my ears. Think of the sensation you experience when you walk out of an arena following a concert or a sporting event, the ringing you hear in your ears. That’s tinnitus but it never stops. I’ve tried over-the-counter remedies but to no avail. It sometimes increases in volume or may be louder on one side or the other, but it’s always there.
It’s hard to imagine now, but in 1984 seat belts were still very much optional. Driving home from a friend’s house at 1:30 a.m., I remember waiting for the red light to turn green. At 20 years of age, I liked to be first out at a green light, as compared to the drivers in the lanes next to me. I have no idea why, but it was a particular habit I had. The problem with that strategy is it assumes the cross traffic drivers will stop at their red lights. This summer evening, a man from out of town didn’t realize there were two lights in quick succession and didn’t notice the first. My little blue compact car was struck broadside and pushed across the three-lane intersection and into a bank, a financial institution, not a bump on the side of the road. I have no memory of the accident itself. I was knocked unconscious and, when I came to, an EMT was telling me not to move. I was taken by ambulance to the nearest hospital. I hadn’t been wearing my seat belt and I suffered injuries accordingly. There was a puncture wound in my head and extensive bruising down my entire right side, but nothing life threatening. My parents came to collect me.
The next morning, when I walked out of my bedroom, I nearly fell over; I was dizzy and unsteady. My dad took me to fill out an accident report and he wanted to visit the site of the accident. I stayed in the car in the bank parking lot, but dad came back and urged me to come see the results of the impact. There was, of course, broken glass and pieces of car everywhere and a mark, but no dent, on the concrete wall. I don’t know if it was walking around or seeing the pieces of my vehicle I’d left behind, maybe both, but I became really nauseated.
My little blue compact car, a Datsun B210, was totaled. The long-term result for me was permanent damage to my neck. I saw a chiropractor occasionally and began getting regular massages once I was employed as a teacher in Southern California.
A few years into my teaching career, I switched from kindergarten to third grade. This necessitated moving classrooms. The week before school started, I borrowed a wagon from a colleague to move into my new room. As I loaded a case of paper, probably six or eight reams, down into the wagon, my low back gave way and I collapsed over the top of the box. Unable to stand or even move, I called for help until someone passed. As I was completely unable to move independently, an ambulance was called. The school where I taught was out in the middle of the desert, half an hour from the closest town. I stayed sprawled across the wagon until medical help arrived. At the hospital, the doctor explained that I had torn through the layers of soft tissue in my low back and would be unable to do much for at least a week.
I’d recently driven back from my hometown after a summertime visit. A friend had accompanied me, and we both smoked. When a middle-aged second-grade teacher volunteered to drive my car back into town, where most of the staff lived, I pictured her getting into my Honda Civic hatchback, yet another blue compact car, with the ashtray overflowing with cigarette butts and the Bon Jovi cassette I had been listening to coming on at near full volume. I was embarrassed but I needed my car back, and she was kind enough to not mention anything. It was a stick shift, so I wasn’t able to drive for a while. A hospital van came and fetched me for physical therapy. The first day of school was my first day back to work, and it was my first day with a new grade level. That year I ended up with 33 students, only 10 of whom were girls. Because I had just finished my Master’s in Counseling, the second grade teachers had placed the students in my class who needed extra help and attention. It wasn’t just a rough start to the year; things went from bad to worse from September through June.
Now, I had damage or difficulty with my mid back from scoliosis, neck pain from the car accident, and a severe low back injury. I was 24 years old.
The next five years were uneventful, as far as illness or injury. My husband and I were married when I was 27, and we moved back to my hometown in 1993. When I was 29, driving my little blue Honda back to work after getting some lunch, there were two vehicles that were kind of racing, trying to get ahead of each other, and I was unprepared when one of the driver’s cut off the Suburban in front of me, causing that driver to slam on his brakes. I rear-ended the SUV and was then immediately rear-ended by the Cadillac behind me. Luckily, I was in the habit of wearing my seat belt by then. You can imagine the condition of my Honda after being accordioned between the two full-size vehicles. I suffered new injury to my neck for which I received physical therapy for a time.
Shortly after that accident, I injured my low back when lifting a child at the crisis nursery where I was program director. Physical therapy was not particularly helpful, and my primary doctor told me not to do anything that caused pain. The problem with that was most movement caused pain so I didn’t do much for months. Eventually, a combination of massage, chiropractic care, ultrasound, occupational therapy and acupuncture over the course of several more months allowed me to regain functional mobility.
I had a c-section in 1997 because my first son was breach and then delivered a nine-pound boy VBAC (vaginal birth after c-section) in 1999, which wouldn’t have been allowed had they known he was nine pounds at three weeks early. The next few years were spent carrying babies, toddlers, diaper bags, and car seats.
In 2001, my legs started to ache badly. I had a couple of varicose veins and was referred to a vascular surgeon to explore the option of surgical treatment. The doctor told me I’d need to have an ultrasound of my legs first to make sure my deep veins weren’t varicose, but he said he had a pretty good instinct and didn’t think I would have a bad case. I would be eligible for surgery to fix my surface varicosities if the deep veins were okay. If they’re not okay, there’s no point in doing surgery. The ultrasound took forever. The technician scanned both legs. On September 11, 2001, Dr. Luna called to tell me I had an impressive case of deep vein disease, most likely as a result of pregnancies, and there was nothing he could do for me. He told me not to run because it’s hard on the veins and recommended elevating my legs daily as well as using compression stockings. The events of September 11, 2001, kept my issue with bulging veins in perspective; but they continue to ache nonetheless.
In 2003, I fell down a complete set of outdoor stairs, thinking they were wet when they were actually covered with black ice. One leg and one shoulder were badly injured, but I didn’t follow up with any treatment or physical therapy after learning there were no broken bones.
The shoulder developed a major bone spur and extensive scar tissue, requiring surgery in 2006. The orthopedic doctor I saw specialized in shoulders and said the bone spur was the biggest he’d seen. He explained he almost didn’t see it at first on the x-rays because it was so big it appeared to be part of the shoulder structure. Turns out that’s why I couldn’t improve my range of motion regardless of how faithfully I performed my physical therapy exercises. There was scar tissue wrapped around the biceps tendon and the rotator cuff was shredded but didn’t have a complete tear. Physical therapy followed for several months.
Following my second major depressive episode in 2008-2009, I became very ill with virus after virus until pneumonia and viral overload caused my body to start shutting down. A lung biopsy was required to check out ground-glass nodules seen in the base of both lungs. Surgery was followed by a chest tube for several days. Recovering from that was arduous. I started by just walking two houses down the street and back, building up to walking the entire length of our block and eventually around the neighborhood. When I was out walking one day, I talked with a friend who lived down the road. She pointed out to me that my clavicle and ribs on the right side, where the surgery had been done, were protruding significantly. I sought physical therapy and the evaluation showed that my three scars from the biopsy were adhered to my ribs, particularly the one under my breast. There was also a scar on my side and one on my back, but those adhesions weren’t as bad. The physical therapist started doing scar mobilization, literally pulling the scar tissue off the rib where it had connected as it healed. I had to perform the scar mobilizations at home. This process was so painful it made me sick to my stomach, and I called it the scar mobilization diet.
It was around that same time, maybe a bit earlier, that I started to experience pain when I was touched unexpectedly. My sons or husband would bump into me and I would react with, “Ow!” They would say, “I barely touched you!” and I would reply, “Well, it really hurt.” If I knew something was going to happen, like receiving a shot or something, I could handle the pain easily. However, if contact was unexpected, it hurt out of proportion. I also had muscle spasms and aches throughout my body. It seemed like there was always something hurting.
When I was diagnosed with fibromyalgia, so many things made sense. I hadn’t been a believer in fibromyalgia prior to my own diagnosis. I thought it was the syndrome of the moment. Receiving information about the condition opened my eyes. My husband and I couldn’t believe how descriptive the symptoms were of what I’d been dealing with for a few years, by the time I was diagnosed. These include widespread pain, fatigue, anxiety, depression, forgetfulness or lack of concentration (fibro fog), tingling, pins and needles, and difficulty sleeping. I’ve been diagnosed by two general physicians and by a rheumatologist.
The appointment with the rheumatologist was particularly instructive. He looked back at x-rays and CAT scans I’d had over the previous years, noting severe osteoarthritis throughout my neck and back in addition to the fibromyalgia. Doctors who know what they’re doing can perform an evaluation that checks different spots throughout the body that react with pain to touch if a patient has the condition. While it was a relief to have a name and understanding of what was happening, it was also discouraging to learn from the rheumatologist that there is really nothing that can be done for either the osteoarthritis resulting from accidents over the years or the fibromyalgia that developed in response to the numerous traumas. One of the descriptions of fibromyalgia that I use to explain it to others is that it’s like the volume on the pain system is turned up. So, much like the kind second-grade teacher who heard my music blaring at high volume when she started my car to bring it to me, the volume is high when I’m unexpectedly touched or bumped. The various aches, pains and zings that occur throughout my body without preceding injury are the result of a defective pain system. I know there are fibromyalgia skeptics but I live it.
How do I live with it? I’ve had periods of time when I take ibuprofen regularly but I’ve gotten myself away from that, using it only for severe pain or headache. I do take a muscle relaxant on a regular basis. I’ve graduated from lower level relaxants to higher level ones at increased dosages over the years. Fortunately, we have a hot tub and that helps a lot, although I have to make myself use it even when I don’t feel like it. When I’m depressed and don’t feel like doing anything, my husband encourages me to continue using the hot tub. I do use ice as well sometimes and find good relief from acute, sharp pains with that. I get massage regularly, ideally once a month. I have a chiropractor who does a torque release technique that has been one of the most helpful modalities for me. Muscle spasms pull my frame out of alignment. I’ll go into the chiropractor with uneven ears, shoulders, and/or hips. He relieves the tension in the affected areas with a tool, and when I get off the table, I’m even. When my ribcage is aching, I ask my husband to check my shoulders. There are times when one will be lower by several inches in comparison to the other, and that’s a sign I need to get in for an adjustment. I use a heating pad frequently and CBD mentholated cream. It’s very helpful when I get myself into a daily stretching routine but I admit I’m not consistent with that.
The body uses seratonin to deal with pain, illness, and injury. A chemical imbalance of seratonin results in depression for me. Over the decades, depression and pain have been inextricably linked. I think I would have had to deal with depression even if I hadn’t had major pain, but at some point they became closely related. It occurred to me several years ago that the tinnitus may be one of the factors that affect my anxiety. I’m sensitive to sound overload, for sure, and too much auditory stimuli makes me feel physically sick to my stomach. Which comes first, the chicken or the egg?
Having a supportive husband is wonderful. Most work days, after eight hours on my feet, all I want to do is to lie down with the heating pad on my neck and back and my feet elevated. My husband is very patient with my physical limitations.
Working is difficult and painful but I found employment at a retail store that provides full, good benefits for part-time work. I work three days a week. I started as a grocery cashier but it quickly became evident that I couldn’t handle the repetitive scanning, bagging and lifting heavy items while standing in one spot for hours. I transferred to the home and garden department where I’m able to move around much more, which is helpful, and I’ve found a bit of a niche working as a cashier in that department. I don’t have to do any heavy lifting and there are parts of the day when I’m able to sit down, which is a godsend.
I joined an online fibromyalgia support group for a while, but it was depressing for me, so I stopped. I share my pain issues with coworkers and supervisors as necessary. There are days when it hurts to breathe and hurts to walk. One day, one hour at a time, I move through the pain.
One thought on “Living with Chronic Pain”
Sara, thank you so much for sharing your journey. You have been through so much. Your words make me realize just how much we may not know about another and what road that person has traveled. My thoughts are with you. Thank you for telling your story and for being a good friend.