Fibromyalgia Awareness Day, sponsored by the National Fibromyalgia and Chronic Pain Association, was observed on May 12. If you don’t know much about this common and often devastating condition, the association describes fibromyalgia as a condition characterized by pain throughout the body. It affects some 10 million Americans, most of them women.
Pain Resource wanted to illustrate what it’s like to live with fibromyalgia by showcasing someone who knows someone maybe a lot like you, if you’re a fibro patient.
Meet Tina Romanus, a resident of Los Angeles who has been dealing with this condition for over 30 years.
Pain Resource: How were you diagnosed?
Tina Romanus: I think it was about 1979 when I began seeing a chiropractor regularly for work-related aches and pains. Fortunately, there was a chiropractic college nearby, and for a small fee the interns would treat patients in the clinic to practice their skills.
I would get electro-stimulation, adjustments, soft tissue massage, hot and cold packs, education about exercise, nutrition and supplements, ultrasound whatever was needed each week to manage my pain. For years it helped significantly because I could go a couple times a week if needed, at $10 per visit.
PR: What led to your diagnosis?
TR: After several years of treatment with no significant improvement, one of the clinicians asked me if there was anything in my family history that they had missed that would help them figure out the chronic nature of my pain.
I revealed that my mother had suffered chronic pain all her life and was finally diagnosed with fibromyalgia at age 72. I knew I had inherited allergies and migraines from my mother. I was terrified of a diagnosis of fibromyalgia since it was so debilitating for her. I chose to ignore it and do everything to prevent it, which was impossible.
PR: Tell us more about your diagnosis and your symptoms.
TR: My diagnosis was made from the history of widespread pain lasting more than three months and the presence of tender points. For a fibromyalgia diagnosis, a person must have 11 or more tender points; I had 18. They also sent me to my primary physician to get tests to rule out anything else, such as arthritis, lupus, problems with my thyroid, etc.
My physician was also aware of my history with chronic pain, migraines, allergies, stomach discomfort, fatigue, and so on. I can’t remember all the tests that were done. When nothing showed up, I revealed to my primary care physician the diagnosis suggested by my chiropractors: fibro. He said, That’s it, I agree with your chiropractor. It’s the only thing that makes sense.
I was very fortunate that nobody ever accused me of being a hypochondriac like they did my mother. Of course, my doctor had no idea how to treat it, other than recommending pain medication, which I refused. I had to find help on my own.
PR: Fibro often includes overlapping conditions, such as arthritis, lupus, and irritable bowel syndrome. Have you experienced any?
TR: When I began having interstitial cystitis (IC) symptoms about 10 years ago which is the worst of the overlapping conditions took about six months to get diagnosed. They kept taking urine cultures and finding no bacteria, and yet I felt as though I had a urinary tract infection. It was horrible; they just sent me home in pain with no solution. I persisted to get a diagnosis. Finally, I discovered two urogynecologists who specialized in treating IC. I began treatment and found relief.
PR: How do you take care of your pain, and how has that changed for you over time as you’ve learned better ways to cope and ease your symptoms?
TR: I learned by trial and error. Exercise, other than swimming or walking, only exacerbated the pain to the point that I couldn’t function. Yoga didn’t work for me. I stopped going to my gym because I would just injure myself each time. Just recently, I visited one of the top pain specialists in the country and he prescribed a TENS [transcutaneous electrical nerve stimulation] unit for use between chiropractor visits, and he recommended alpha lipoic acid (300 mg twice daily); benfotiamine (150 to 300 mg twice daily); and a topical cream called Traumeel. He suggested lactobacillus acidophilus (dual-coated) to help with the IC. I haven’t begun those supplements yet, so I can’t testify to their efficacy, but I’m always willing to try something new, and I never give up hope that someday there will be a cure.
PR: Do you talk to other fibro patients?
TR: I’ve only met one person who has fibro, and she manages quite well on Lyrica, but I won’t take any drugs other than [naproxen]. I’m so sensitive to side effects of medication. [Naproxen] works better for me than any other over-the-counter pain medication.
PR: What affect has your having fibromyalgia had on the people around you?
TR: For many years, it had no impact. I kept quiet about it. I didn’t want to be one of those people who complains all the time. I was good at hiding symptoms and pushing through my pain. But in the past couple of years, I’m much worse and unable to mask it.
Finally, I told my family and friends what was going on with me so they would understand my limitations and not feel as though I was withdrawing from them or being lazy or a diva. My friend Lorraine said, Now I understand why you would often drift away in the middle of a conversation and I wouldn’t know why. I think I was disassociating to a degree. That is the “fibro fog,” but it’s also a way to escape the discomfort. I sought help from a therapist to deal with the emotional impact of the disease. She suggested that I tell people what I was going through. I think it was shocking for them to learn that I had been hiding it for so long.
The fibro fog has been especially difficult. It’s always difficult for me to learn something new; it takes me longer. It was difficult to explain that it had nothing to do with intelligence. There were just times I couldn’t take things in, and it would make me anxious and that made it more difficult to pay attention. But if I persisted I would finally get it. I once told an employer in a job interview that I would be horrible for the first few weeks and he would think I was really stupid, but if he was patient, I would soon become the best employee he had. He hired me.
I would get migraines, so I brought an ice pack to work. When I got a headache I would lie on the office floor on the ice pack and people would walk over me. It was very funny, actually. I was very lucky to find jobs where people were sympathetic to my limitations and odd behavior.
PR: What would you like to see as a result of Fibromyalgia Awareness Day or of outreach efforts generally?
TR: I would like to see more health care reform. Single-payer health care for all, which includes physical therapy designed specifically for people with this condition. Those who can’t afford the myriad treatments needed to find relief stand little chance of getting out of pain. Most pain clinics have you do exercises, which only exacerbate the pain of fibro. From my own trial and error I could probably teach therapists what works and what doesn’t. I wish someone would be interested and listen. I wish there were more support groups for people suffering from chronic pain.
To people with fibro, you must be proactive. You must educate yourself and try to discover what works for you. Try everything you can afford. Treatment varies; it is not codified. What works for one person may not work for someone else.
Don’t despair. Don’t give up. You can live with this; it won’t kill you. Cherish the good days, and don’t feel guilty when you have days when the pain overtakes you or fatigue wipes you out. If you need to go to bed and do nothing, don’t feel guilty. Guilt does not enhance your existence. Do not let your symptoms stop you from having a splendid life.