28 Years with Fibromyalgia: The First Five Years (Part 2)

detail_fibromyalgiaMany people who develop fibromyalgia can point to a specific event that started it all. In Part 1 of my fibro story I shared my experience immediately following the car accident that was my trigger. If you haven’t read it yet, I hope you’ll take a few minutes to do so.

In this second installment, I relate my experience during the first five years as I learned to live with chronic pain and all that comes with it. I’ve tried to remember the details as best I can, but I’m sure I’ve forgotten a lot. I hope readers will have questions and comments that will help me fill in any gaps. Mostly, I hope my story lets other fibro patients know that they’re not alone in dealing with the challenges of a chronic condition. There is hope. I’m living proof.

I was really lucky.

Carol Schneider and Dr. Ed Wilson had started a multi-disciplinary alternative healing center in Boulder called the Colorado Center for Biobehavioral Health (no longer in existance). Not only did they have a M.D. and a psychotherapist, they employed all sorts of alternative treatments: chiropractic, massage, neural-muscular therapy (NMT), homeopathy, Aston Patterning, Reiki, Feldenkrais, Pilates (before anyone knew what Pilates was), sound therapy, cranial-sacral work, biofeedback, meditation, yoga, tai chi, support groups, and so much more. I was under the care of their team for the first five years after my car accident.

Insurance was different back then. Doctors decided what treatment a patient needed, not necessarily the insurance company. I still had to fight for every benefit I got. It took over six months for them to make the first payment, arguing that none of my symptoms were related to the car accident. Over the course of five years, I was evaluated by numerous doctors on behalf of the insurance company. I eventually sued the guy who hit me.

Every day included appointments with someone: therapists, attorneys, insurance, doctors. It got so overwhelming that at one point I cancelled and rescheduled everything for the week just to get some rest and a few days to myself.

Of course I was prescribed pharmaceuticals, mostly painkillers, non-steroidal anti-inflammatories (NSAIDs) and antidepressants. I met with a psychiatrist to determine exactly what psychotropic drugs I needed to combat my “pain-related depression.” First I was prescribed desipramine. Later, I was switched to imipramine, another in the same class. Neither was very effective but came with unwanted side-effects. They didn’t last long.

Alternative therapies worked.

I learned early on that traditional medicine had little to offer in regards to fibromyalgia. Physical therapy combined with drugs was the typical treatment plan. For me, alternative medicine was the way to go.

The first sessions of massage therapy on my neck were excruciating. I remember my therapist telling me that the level of pain I was experiencing wasn’t normal and if I’d just give her three weeks, it would get better. I endured. After several sessions, it did get better.

My treatment included an assortment of nutritional supplements: bioflavonoids, calcium/magnesium, evening primrose oil, bromelein, and others. One of the first supplements Dr. Ed got me started on was an amino acid called  L-Tryptophan for sleep. It worked great with no drug hangover the next morning. A precursor to the brain chemical serotonin, it’s a supplement I take even today.

I saw the best results from the acupuncture, massage and chiropractic sessions, and I still find these modalities to be the most effective 28 years later.  Trouble with my left shoulder and neck continues to plague me, but regular chiropractic adjustments and massage can keep it in check.

Exercise was important, although keeping a Type A personality from overdoing it was a challenge. As I got stronger and developed more control over my pain, I started participating in yoga and tai chi classes. The stretching and gentle movement helped keep my muscles from tightening, although I realized quickly that there is a fine line between gentle stretching and over-stretching which could send me into pain.

I tried to get out for a walk every day, although I realized very quickly that damp cold was not my friend. Once I get chilled, it’s very hard for me to warm up again. My muscles tense and I shiver, increasing my pain. Layering was key to being able to adjust to temperature changes.

Being in water was the best! Hot showers and baths with epsom salt warmed me up and soothed my system. Just floating took so much pressure off my body and the warmth of the therapy pool soothed my tender muscles. Getting into a warm pool of water was, and still is, one of the most therapeutic activities for my fibromyalgia.

Because of the injury to my neck, I got outfitted with a snorkel and mask for swimming so I wouldn’t have to turn my head to breathe. I was happy when I got far enough along in my recovery to participate in gentle water aerobics classes with women more than twice my age.

Parenting in pain

My son was just 10 years old when I had the car accident. Dealing with the constant pain and fatigue was hard on him too. Plans were often changed or cancelled because “Mom’s sick.”  He spent a lot more time with his dad and grandparents, especially during the first several months when I could barely care for myself.

Being a parent is hard. Being a parent in constant pain is harder. I hated seeing the worried and confused look on his face. I was no longer the strong, capable, active, independent woman he had come to know as his mother. I became a mother in pain, where every touch, every movement, every activity was a challenge. On days when I felt good, I tried to do more to compensate for the bad days, often paying a painful price the next day.

Including my son in my treatment plan helped us both a lot. We walked and swam together. He tried a few yoga poses. I’ll never forget the time when he asked if I wanted to put my head in his lap so he could play with my hair, something I did to soothe him when he was little and not feeling well.

Time with my dad

Just a few months before my car accident, my father was diagnosed with kidney cancer. It was incredibly difficult to watch what he and my mom went through as the doctors tried one thing after another without success. One of the side benefits of my time off was that I got to spend a lot of time with my parents at University Hospital while my dad was in treatment. I will always cherish the long conversations we had during that time. He passed away in January 1988.

Ken, marijuana and the Beatles

My hairdresser hooked me up on a blind date with one of her customers, Ken, who I ended up dating off and on for a few years.

Ken taught me a lot about music and marijuana. He always had a selection of strains on hand. “This one is good for sleep,” he told me. “This one is good during the day. And THIS ONE is really good for music!” I didn’t know then why one baggie of green leaves was any different from another baggie of green leaves, but there definitely was a difference.

He was an expert on the Beatles and had a recording studio set up in his garage, so we spent hours and hours consuming copious amounts of weed while listening to and making music. I felt great, but I didn’t quite make the cannabis connection then. I’d never heard of using marijuana medicinally.

Back to school

Thanks to Ken’s encouragement, I decided to explore completing my psychology degree since I was a senior and only needed a few more classes to finish.

After hours and hours of vocational testing and interviews, they agreed with the recommendation that I go back to school and finish my degree so that I could get a job where I would have more control over my schedule and environment. (Control over my life was a lofty goal that I have yet to achieve, by the way.)

In December 1989, the day before my birthday, I graduated from the University of Colorado in Boulder with a Bachelor’s Degree in Psychology. That day saw a high of -10. It was so cold the ice crystals in the air produced a beautiful rainbow. My sister-in-law told me it was a message from my dad that he was proud of me. I cherish that thought.

Temporomandibular Joint Disorder (TMJ)

I had a lot of trouble with pain in my jaw, so I eventually was referred to Dr. Kammer, a dentist and TMJ specialist. He tried bite splints and other options, but nothing worked to relieve the headaches and jaw pain. The eventual treatment plan was aggressive. After having 7 teeth pulled (4 bicuspids, 3 wisdom teeth), I wore braces top and bottom for months. Finally, four years after the accident, I had surgery to realign my lower jaw and was wired shut for six weeks. I got out of the hospital on my birthday in 1991.

I had to fight with the insurance company for every penny. Five years after the accident, just a couple months before my benefits ran out, after paying for braces and surgery, they still tried to claim that my TMJ had nothing to do with the initial accident.

Moving On

After five years of insurance paying the bills, I was cut off and left on my own to continue treatment as best I could. I now had a pre-existing condition, so health insurance required a 6-month exemption for anything related to fibromyalgia. Attributing nearly everything to fibromyalgia, they refused to cover any new or on-going treatment I needed, forcing me to pay for everything out of my own pocket. Money from the lawsuit helped carry me over, but with the high cost of medical care, it didn’t last long.

Fortunately, working with the team at The Center prepared me to take control of my healing. We developed a routine for home care that wouldn’t require a lot of appointments. It was time to utilize all that I had learned from them about diet and nutrition, herbal supplements, exercise and stretching, biofeedback, meditation and relaxation.

Read more about my fibro journey in the next installment: 28 Years with Fibromyalgia: The Maintenance Years (Part 3).

To understand more about how my fibro story began, please read 28 Years with Fibromyalgia: My Trigger (Part 1)

And for more information about how I use cannabis for my fibromyalgia, please read my post: How I use cannabis to treat my fibromyalgia.

— Rx MaryJane (Teri Robnett)

You can help support chronic pain patients by donating to Cannabis Patients Alliance. Your support enables us to continue advocating for safe, legal, affordable access to medicinal cannabis for patients who choose it.

Categories: Doctors, Education, Family & Relationships, Healthy Lifestyle, Medical & Research, Patients, Pharma, Women

Tags: , , , , , , , , , , , ,

3 replies

  1. I applaud your courage and kindness to share this very personel story.It is important to let people know how and why you are so passionate and a very effective voice for the benifits this plant provides. Empowering and Encouraging .
    This site has a voice for those of us in the industry that is both trusted and has real answers to reference
    What ever happened to the group in Boulder?
    Nancy from Titrate


  2. Thank you very much for sharing! I too have fibro and tmj triggered by car accidents. It’s been 14 years for me and I’m still learning. Thanks again for sharing!


Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: