A Relentless Pain
By Audris Rozelle
Imagine waking up and feeling pain all over your body. Your neck and shoulders are stiff and sore. You notice that it takes more effort to peel the blankets away from your body. The feather-light sheet feels like you’re lifting a bowling ball in your swollen, achy fingers. Finally, you are able to plant your feet on the floor; which feels like the floor is pushing your feet up to towards your hips. You tip-toe to the bathroom and try to alleviate the pain with ibuprofen or naproxen, yet the pain is strong against those drugs. Every move and every sound penetrates your body. You return to bed, hoping for relief but it never shows up. You wish to be held and comforted, but your body is too tender for even the slightest touch. Hard thing to imagine, isn’t it? Well, that is the reality or approximately five million people in the United States who are living with the chronic, relentless pain from fibromyalgia. Of that number, about 80 to 90 percent of them are women. I am one of those women.
Like many others, my journey with fibromyalgia has been difficult because I suffer with another chronic condition in my right hip. In 2003, my primary care physician, Dr. Steele, diagnosed me with a debilitating hip condition called avascular necrosis (a condition in which blood stops circulating from the pelvic bone to the femur, resulting in a dead femur). Because I have a twin brother with systemic lupus, my doctor suggested that I visit a rheumatologist for closer examination for two reasons: lupus is associated with avascular necrosis and lupus may have a genetic link. Lupus is rarely found in men, but there has not been any consistent research to conclude that lupus is a genetic disease. Although there may be family members that suffer from lupus, there is a broad gap in generations and it usually affects a distant relative. But just as research is still going on to find the hereditary links of lupus, my rheumatologist, Dr. Thomas, continued to research my situation. She decided it best to examine me twice a year, “just in case something would appear,” she said. Thankfully, all of my blood tests showed no trace of any rheumatic diseases.
In May 2005, I had total hip arthoplasty because the femur in my right hip collapsed. In September 2005, I was involved in accident while operating a public transit bus. I recovered from that accident and returned to full duty in February 2006. During a regular visit on February 2006, I discussed problems associated with body aches to Dr. Thomas. I was afraid that I had developed lupus. I remember feeling a bit of anxiety, concerned about having to tell my children that I had a terminal illness. Using her index and middle fingers, she applied pressure on my neck, elbows, knees, and shins. I began to hurt more with each touch. She stepped away from the examination table and then diagnosed me with fibromyalgia.
I had a hard time accepting or believing what my doctor said. Fibromyalgia sounded like a dirty word, as if it was contagious and that I should be placed in quarantine. She had told me that I would have to learn how to take it easy in order to reduce the number of flare-ups that I would experience. These flare-ups that she mentioned occur when the body has been overworked or experienced too much stress. During a flare-up, the body is immobile with extreme levels of pain, accompanied by sensitivity to light and sound. She prescribed Ultram and sent me home. When I got home, I tossed the prescription request on top of the dresser and went on living my normal way: work, exercise, running errands, housework, and day trips.
It was not until I could not get out of my bed one morning did this condition become my reality. I called my doctor to let her know that I was in excruciating pain and that I could not walk. “Are you ready to believe me now?” she asked. I believed her, but I don’t think I ever became ready. Nor was I ready for the events that followed shortly after. While driving the bus three months later, a police vehicle jumped a traffic light at an upcoming intersection. To avoid collision, I slammed on the brakes. Although I was able to stop the bus before hitting the police car, the impact caused muscles and tendons to be compressed between the prosthetic hip and the pelvic bone. I was later diagnosed with chronic trochanteric bursitis. End result of these occurrences: I have two chronic, painful conditions.
The word fibromyalgia is derived from three Latin terms: fibro¬- (tissue), my/o- (muscle), and -algia (pain). So in essence, fibromyalgia is a painful condition that affects the muscles and the tissues, or tendons in the body. Patients would complain of severe pain and muscle fatigue to their physicians. Generally, the doctor orders lab tests to rule out conditions that tend to cause fatigue and pain in the body. However, fibromyalgia is not detected through blood or urological examinations. When the tests show no traces of any blood-related diseases, the patient is referred to a rheumatologist for closer examination.
There are eleven points on the body that are tender and sensitive to touch for fibromyalgia patients. These tender points are found at the neck, shoulders, chest, lower back, hips, shins, elbows, and knees. Primary care physicians have the ability to recognize the symptoms and diagnose fibromyalgia, but rheumatologists are specifically trained to diagnose, treat, and manage the disease. The rheumatologist palpates these tender areas with a particular amount of pressure to determine if the patient has fibromyalgia. Patients that do not have fibromyalgia will not respond with pain when pressure is applied to these areas. Though these tender points are close to the joints, fibromyalgia does not affect the joints nor does it cause any joint damage as other rheumatic conditions such as rheumatoid arthritis or systemic lupus erythematous (commonly known as lupus).
Most people suffering from fibromyalgia experience deep, burning muscular pain, tenderness, difficulty in concentrating; irritable bowel syndrome and heart palpitations usually stems from the anxious and depressive moods that fibromyalgia causes. Fibromyalgia patients develop depression and anxiety because of the lack of pain relief and ruminating “why did this happen to me?” It is very hard dealing with the fact that there is an incurable condition with a lot of pain. Doctors have once prescribed antidepressants to treat the pain and help the patient relax.
Antonio Dickey is a former graduate student at Eastern University. At the age of five, Antonio developed a degenerative form of blindness that progressed over the years. With the help and support of his mother, Viola, he was able to complete his education. She helped him to look at the blessings in his disability. She taught him that the “just shall live by faith and not by sight.” Her message played an intricate role in his academic and professional achievements. She was very involved in Antonio’s care and supported him through his education and career goals.
In 2010, Viola has been diagnosed with fibromyalgia and her ability to help has been limited. Some years ago, a car accident left her with a pinched nerve in her neck. For the past ten years, she has experienced debilitating pain and fatigue. Her doctor diagnosed and prescribed her medication for rheumatoid arthritis. However, she found no relief. It saddened and befuddled her about the changes that her body was going through, in addition to her doctor’s unwillingness to spend time with his patient and communicate what was happening.
Viola frequented the doctor and continuously explained that she was not getting any better. Antonio explained that her doctor had the tendency to not listen to his mother’s complaints. He assumed that her body aches was a side effect from the arthritic drugs that he prescribed. Her doctor gave her little time for questions and kept discussions at a minimum. It was frustrating to her because she knew that something was wrong with her body; she just did not know what it was. It was not until she pressured her doctor to examine her closer that he realized that he had misdiagnosed her. In September 2010, he found that the pain and fatigue resulted from fibromyalgia, but he continued to be vague in his response to her questions. Tired and aggravated by the doctor’s treatment, Antonio attended a doctor’s appointment with his mother. For the first time, the doctor listened to his mother and answered her questions with details.
It is very easy to misdiagnose fibromyalgia. The symptoms of fibromyalgia are similar to those found in many rheumatologic disorders such as rheumatoid arthritis and lupus; but it is often mistaken for a chemical imbalance known as hyperthyroidism. This endocrine disorder happens when the thyroid produces too much hormones into the bloodstream. It causes a chemical imbalance in body function and is responsible for body pain, tiredness, lack of sleep, weight loss, and memory problems. Many thyroid disorders are difficult to detect because the hormone levels consistently fluctuate. At the time of the appointment, the patient may have too many hormones in the bloodstream; but once the patient reaches the lab for blood tests, the hormone levels may go back to normal. Using statistical data and review of the common symptoms, the doctor will diagnose the patient with hyperthyroidism. A striking difference between fibromyalgia and hyperthyroidism is that patients do not experience weight changes when they have fibromyalgia; except when the patient is too depressed to eat.
Fibromyalgia pain is prevalent in the neck and shoulder areas, mimicking a pinched nerve or muscle tension in the neck. The overall body aches are said to result from the body overcompensating for the stiffness in the neck and shoulders. In situations like this, a doctor rules in favor of a pinched nerve and sends the patient to physical therapy. Without a doctor’s examination, fibromyalgia is easily overlooked.
For Viola, it was common for the doctor to assume that she had rheumatoid arthritis (RA). Like RA patients, people with fibromyalgia have difficulty moving without pain, decreased strength, and are often tired. The conditions have separate identities, but a patient can be diagnosed with both. Yet, there are two major differences between RA and fibromyalgia. RA is an autoimmune disease that deteriorates joints and organs as the disease progresses. Fibromyalgia is debilitating, but it is not destructive nor is it an autoimmune disorder. In addition, RA is determined and detectable through a series of blood tests. Since fibromyalgia is not a blood disorder, there aren’t any blood tests to identify the condition.
There are many causes for the onset of fibromyalgia. For most people, it develops after the body had experienced some sort of physical trauma, such as a car accident or an injury upon impact. In our bodies, there are several nerves that are connected to the brain. At the end of each nerve, there is a gap, or synapse, between the other nerves. These nerves act as communicators to certain types of stimuli from touch, like heat, cold, or pain. The brain responds to stimulus and sends messages to the nerves to help the body recover from what triggered the nerve. In normal circumstances, the nerves no longer respond to the trigger and the pain stops. For an undetermined reason, this does not happen for patients living with fibromyalgia. Researchers are still trying to understand why the sensations of pain do not stop.
Most scientists believe that low serotonin levels in the body may be the reason why pain continues. Serotonin is a neurotransmitter chemical that is released by the brain and is transmitted between the synapses of the nerve endings. Serotonin helps the body to sleep, to balance moods, and to maintain cognitive ability. When the body has a decreased level of serotonin, the person tends to lose sleep, feel muscle pain, be depressed and have poor concentration; very similar to the symptoms of fibromyalgia patients. Therefore, doctors have concluded that depressed moods that fibromyalgia patients experience are related to low serotonin levels.
Victoria is a 41 year-old married woman who has been living with fibromyalgia for over three years. Before her diagnosis, she experienced a lot of pain and her doctors did not know the source of her pain. She developed depression and anxiety and sought medical advice. When she learned that she had fibromyalgia, she encountered a sense of fear as she didn’t know what effect fibromyalgia would have on her life. She decided to do research to get clarification and understanding of her condition. Her doctor had prescribed Zoloft to treat the depression and anxiety; Lyrica to help her cope with the pain and help her rest. She is now taking Cymbalta which helps her pain, depression and anxiety. She noticed a change in the pain levels and swelling since taking Cymbalta.
Cymbalta (duloxetine) is one of the few antidepressants used to treat fibromyalgia. Doctors have also been known to prescribe Lyrica (pregablin) and Savella (milnaciprin). These drugs have shown to decrease the amount of pain and improve quality of rest. There is no cure for fibromyalgia, so the symptoms never fully go away. The medications only control the intensity of pain. As there are benefits to taking these drugs, there are also the side effects that come with the relief. Patients who take Cymbalta or Savella are likely to experience constipation, dizziness, dry mouth, decreased appetite, and nausea. Lyrica has been known to cause speech problems, difficulty remembering, and weight gain. Doctors review the patient’s medical history to determine which drug will have the best effect.
Because I am allergic to the drugs that have been approved for fibromyalgia treatment, I take Neurontin (gabapentin) and Flexeril. I do not experience the nausea that Cymbalta users share, but I do feel dizzy, have difficulty remembering, and have developed a slight speech impediment. I remember when it was easy for me to remember telephone numbers or to say even the most difficult words. Since taking the Neurontin, I noticed that I my words have a tendency to become jumbled or slurred. My damaged hip resulted in an imbalance in my gait. When I take my medicine, my ability to gain balance is challenged. To counteract the side effects, I give my body a break and stop taking the medicine (which is against medical advice). I indulge in word puzzles to enhance memory and take the time to read aloud to exercise speech.
The underside to my method is that I experience more flare-ups and have to further limit the amount of work, stress, and activity. Victoria noticed this similarity when she misses a dose of her medication. She stated that once the medication gets back into her system, she is able to combat the pain. Since I go longer periods of time (sometimes up to ten months) without medicine, it usually takes my body longer to recover from a flare-up. As the medicine provides some relief, the best prescription for a flare-up is rest. Viola has also found that rest is the best medicine for her. She sometimes needs at least two days of rest to allow her body to recuperate from doing activities that she once did without struggle.
Fibromyalgia forces a person to alter his or her lifestyle. The person still has the ability to move and function, but with more difficulty because of pain. He or she can still exercise and enjoy activities, but it must be done in moderation and less frequency. It is also imperative to reduce or eliminate any emotional stress. The more a person does, the more pain he or she will feel. Before her diagnosis, Antonio’s mother said that “walking was not a chore; it was a joy.” Victoria enjoyed singing on the choir and I used to frequent parks and museums. Now, our activities are becoming a part of our past as our present involves nurturing pain.
Viola has since retired from working because the job was causing too much stress on her body. She had to cut back on the things that she enjoyed, such as going to concerts, to avoid going through extreme discomfort that a flare-up brings. She opted for a handicap sign for her car so that she doesn’t have to walk long distances from her car to the store. Her pace is slower and shorter. Her relationships with her friends took a hit as well. The did not understand why she was in so much pain and could not attend church, concerts, and plays as often as she used to do. Medication has helped her and she is able to manage doing light housework, but it is still arduous for her to stand at the stove or work on her computer without feeling pain.
Victoria has a full schedule being a mother, wife, student, and an administrative assistant at an university. She tends to feel some guilt because she cannot do the things that she used to do with her children. I can relate to Victoria’s feelings. I used to enjoy going to the movies, the zoo, and the Franklin Institute with my sons. We would leave the house with no concern about time or pain. Now, I have to be strategic with my planning and try to limit my time to doing small events that allow me to relax. I can start out feeling okay, but midway through the day, I will start to feel increased pain and it would be time for me to go home and rest. My sons understand my inability to do what we used to do as they are more concerned with my well-being than hanging in the park.
Fibromyalgia affects people in similar ways, but coping methods vary for each person. American Academy of Family Physicians found that exercise has a significant effect on reducing the amount of pain that a fibromyalgia patient experiences. However, exercise does not sound like an easy task for anyone that suffers from this condition. Most times, the patient is either too tired to find the energy to exercise or in too much pain to exercise. As exercise has been a wonderful benefit to help the body release endorphins to help minimize the effects of pain, too much exercise exacerbates fibromyalgia pain. Therefore patients need to find a median that is comfortable and yet therapeutic. Then, you have patients who are in my situation.
Before my diagnosis and injury, I spent countless hours in the gym. There are times when I will push my body to match what I did before fibromyalgia. The difference is that prior to my diagnosis, I did not require a recovery time of rest. Now, I have to find time to rest in between exercise sessions or run the risk of a fibromyalgia flare-up. Last year, I was enrolled in a tai chi class through the university. This form of martial arts improved fibromyalgia pain; however, certain positions and movements affected my hip. I have not given up on exercise and hope to find a plan that helps both problems.
As research continues, the treatment options increase. Some patients have found that acupuncture have relieved a great deal of pain, while others are relieved from massage therapy. Because stress increases discomfort, patients partake in activities that produce the opposite of stress, like meditation. Homeopathic remedies have not had consistent response because of the length of time it takes for the body to absorb homeopathic medicines. I have considered trying a natural herb extract called Devil’s Claw, but the name kind of hinders me.
Implementing changes in diet can also help with reducing pain. Victoria was advised that it would be beneficial for her to eliminate processed foods from her diet. Her fixed income makes it difficult for her to afford food that would be better for her. Many processed foods contain preservatives that act as inflammatory agents in the body. In researching gout, another painful condition, doctors recognized that fried food, pork, and beef have also been to increase inflammation.
Fish that is high in omega-3 fatty oils have been shown a considerable difference in joint and muscular pain. I decided to experiment with the research findings to see if I would feel a difference. I noticed that I had better mobility by eating more salmon and bluefish and felt bad when I ate a steak or pork. My doctor suggested that I add fish oil to my diet, but I feel much better when I just eat fish. For people who have limited incomes such as Victoria, adding more fish to her diet may not be affordable or the best method. Organic and healthier foods cost more money. Also, when pain levels are at a high, it is easier to eat something processed because it is quicker to prepare.
Listen to a conversation among fibromyalgia patients and you will hear one common question: How do you cope? Fibromyalgia is agonizing, therefore as Victoria noted, it is important to have support and understanding from your family and friends. I had to learn how to stop trying to be super-independent and ask others for help. I didn’t want to admit that I have a disability. Victoria is learning how to be specific with discussing her needs to her husband and Antonio’s mother is learning how to rest and take care of herself. Our needs to cope are different, but our method of coping is the same: prayer.
I’ve spoken with a number of people that have fibromyalgia and we all agree that prayer is the best coping method. Even though our prayers may contain concern about why our bodies have been afflicted with such pain, we find a way to remove our focus from our problem and meditate solely on God. We seek to find peace in God’s word to help us understand that God still has a purpose for our lives. Prayers give us hope, if not for healing, but for acceptance of our situation. Exercise may help and medication may give some relief, but praying gives peace for the inner man.
Who knows what will result from our prayers? Fibromyalgia patients remember a day when we could do it all with ease. We wish that we could wake up and no longer feel pain. Viola imagines a life of no pain; spending a day the beach and running without any body aches. She would take an art class and possibly start taking piano lessons again. She said, “I would love to be able to experience life and not be so confined to the life that I have right now. Life would be great!”
Victoria views her life without fibromyalgia as being able to enjoy the intimate embrace from her husband and to be able to make love to him “without wincing.” She would dance like Beyoncé and praise God for her healing. For me, a life without fibromyalgia is a day in which I would no longer have to explain why I can’t do certain things or have to plan my day according to pain levels. We do not know if we will ever see those days, but we do have an optimistic outlook on life. The pain is relentless, but fibromyalgia is not a death sentence. God is still very much in control and Jesus is still a healer.