An experienced caregiver and chronic illness patient, Shannon has a lot of firsthand experience dealing with chronic pain and fibromyalgia.
As a culture, there are few things we truly just believe in. Most of us are skeptics who need to see proof of something before we are open to its existence. So, what do we do when people have unexplained symptoms that cannot be proven—when there’s no test or exam that definitively says that someone has an illness, and yet, they have all the symptoms. Perhaps it is a ruse designed to get attention, or a psychological disorder that makes the patient believe they are sick. Maybe the patient is just looking for unnecessary prescriptions.
Or, maybe they are actually sick, and medical science just hasn’t fully understood it yet.
Why Is It So Hard to Diagnose Fibromyalgia?
Test Results Are Usually Negative
Some doctors believe fibromyalgia (FM) to be a malfunction in the brain and spinal cord. There aren’t any test results, examinations, or procedures that can differentiate a healthy individual from a fibromyalgia patient. For many FMS patients, there aren’t any changes in inflammatory markers, no abnormal immune response, and no obvious signs that something is amiss. For medical professionals that have made a career out of finding a problem and then fixing it, this is perplexing and frustrating. Though patients are understandably frustrated with this chronic illness, the lack of proof can make it difficult to accept this disorder.
Diagnosis by Process of Elimination
Because of the enigmatic nature of fibromyalgia, it is diagnosed by eliminating all other possibilities. Any FM patient can tell you how long this process takes and how many tests must be performed only for the results to be negative (i.e. normal). Conditions like lupus, multiple sclerosis, and rheumatoid arthritis, and other autoimmune disorders have to be ruled out first. Mental illness is also suspect, so it isn’t uncommon for patients to be recommended for psychiatric care. Through the frustration with this condition, most, if not all, chronic pain patients develop depression that only worsens the symptoms. It’s a vicious cycle that can make it difficult to see improvement, and the longer it is untreated, the worse it gets.
Although the exact causes of fibromyalgia are still unclear, doctors believe that there is a psychological component. Many patients with post-traumatic stress disorder have seen fibromyalgia-like symptoms or have been formally diagnosed. It’s important to note that PTSD isn’t isolated to veterans.
Symptoms of Fibromyalgia
There are some common symptoms of fibromyalgia that almost all patients experience:
- Chronic, widespread pain that lasts for at least a few months is the most well-known symptom. There can be trigger points that are extremely sensitive and make it difficult to fully function. For example, someone affectionately squeezing a patient’s shoulder could very easily cause pain to flare up and spread to the arms and chest too.
- Fatigue is also a major symptom. Although for some people, getting more sleep helps—usually with the aid of prescription sleeping and pain pills—there’s still an underlying, constant exhaustion throughout the day that can be debilitating. It isn’t uncommon for patients to get a solid eight hours of sleep and still be exhausted to the point of disorientation an hour after getting up.
- Digestive issues like irritable bowel syndrome (IBS) are another common complaint of fibromyalgia patients. Gas, bloating, and general digestive upset are the most common symptoms of IBS. Fortunately, for most people, these symptoms can be managed with lifestyle changes and stress management.
- Memory and cognitive issues are also regularly reported (and are very frustrating for the patient). Forgetfulness becomes very commonplace, making it necessary to make lists for everything and to get creative with finding ways to remember important things. However, it doesn't stop there. Many patients can have trouble carrying on a conversation or comprehending something that is said to them.
Less Common Symptoms
In addition to the characteristic symptoms of fibromyalgia, some patients may have lesser-known, secondary symptoms that can be just as frightening.
- Vision problems can be dangerous and terrifying. Some fibromyalgia patients report sensitivity to light, difficulty focusing, and dry, burning eyes. These should be checked by an eye doctor; they may be a separate issue, but they can also be connected to FM.
- Chest pain and discomfort are another symptom. I know from personal experience how frightening this can be. Anytime you experience new or unusual chest pain, it’s important to call 9-1-1. Costochondritis is just one inflammatory condition that can mimic the symptoms of a heart attack (hence the importance of getting help immediately). It can also be a chronic issue for those suffering from fibromyalgia. Taking slow, deep breaths can be very painful with chest inflammation, so patients often have to develop their own calming techniques.
- Headaches are also reported by FM patients. Sometimes brief and sometimes debilitating, headaches can severely impact the quality of life of a chronic pain sufferer.
- Difficulty eating and swallowing are also reported by those that deal with this condition. Certain foods and textures can be difficult to swallow, which can lead to panic and choking.
Popular social media sites are great places to connect with other fibromyalgia patients and learn more about how the condition has affected them.
How Do You Treat Fibromyalgia?
Treating fibromyalgia requires an individualized approach. This chronic pain condition isn’t the same for any two people, so treatment cannot be the same either. There is no cure—no magic pill or therapy. It’s important for patients to understand that this is a lifelong condition. The goal, then, isn’t to cure it but to manage it.
For many patients, medications are not the first choice in treatment, but they are frequently used to help control pain, including some antidepressants. The term "antidepressant" carries a negative connotation for some and may instantly put them off from any prescription. However, it’s important to hear medical professionals out on this. It isn't necessarily because you are depressed. Antidepressants change the chemical makeup of the brain—where doctors and scientists believe fibromyalgia originates—and can help control the pain.
Pain relievers are often used to help control pain, but it is important to follow directions and not take more than the recommended dosage due to the addictive nature of some of these prescriptions. It’s also important to keep your doctor informed on how you are doing with certain medications—even over-the-counter ones like Tylenol—and any changes in bathroom habits with any NSAIDs (non-steroidal anti-inflammatory drugs) such as ibuprofen.
A lot of patients swear by certain diets, like ones geared towards reducing inflammation or ones that completely cut out sugar. Changing diets doesn’t work for everyone (just like prescription won’t work for everyone), but it is an option for patients who want to avoid taking medication. Patients should discuss dietary changes with their doctors because cutting some foods out could inadvertently deprive patients of important nutrients.
Physical and Manual Therapies
Alternative therapy like visiting a chiropractor, acupuncturist, or getting massages is also fairly common.
Physical therapy is another popular form of treatment and a very effective way to improve mobility. Doing stretching exercises at home (and sticking with it on bad days) can help.
So can having a gym membership. When going to the gym, it’s important for patients and their support system to remember that they aren’t there to show off or train for a bodybuilding contest. It isn’t about seeing how much you can lift. It’s about improving your flexibility, mobility, and strength.
The Best Part of Treatment Is Support
At the beginning of this article, we discussed the controversy of fibromyalgia and how the lack of physical evidence can make it difficult to take seriously. Some people may find it difficult to believe their loved one when they say they have chronic pain that has an unidentifiable source. However, it is important to know that the biggest, most important part of treating fibromyalgia is being surrounded by understanding and supportive people.
It’s important for a patient’s support system to accept a few things:
- Fibromyalgia is a condition that will not be completely resolved with weight loss, exercise, or antidepressants. It may help, but it's just misleading to say there is a cure.
- Pain and fatigue are subjective and cannot really be compared between individuals.
- Most patients have already tried anything that any non-medical individual may suggest, so it’s best to tread softly when suggesting a new and seemingly impressive treatment.
- Shaming a patient won’t work. Bullying or shaming someone never results in the desired change.
- Sometimes, the very best anyone can do for a chronic pain patient is to tell them how much they are valued and loved because sometimes, they really need to hear that.
Fibromyalgia is a chronic condition that can last a lifetime, but for most patients, it doesn’t have to be a life sentence. Modern treatments and interventions can make it easier to live with, and surrounding yourself with a caring support system can help dramatically. It’s important to remember that there’s so much more than pain in this life—some of us just have to fight a little harder to see that.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Shannon Perry (author) from HENDERSONVILLE on February 12, 2018:
Thanks for your comment Sp Greaney! With FMS, much like any other chronic illness, there are good days and bad ones. It creates a roller coaster for the patient because one day you can clean the house. The next day you'll be lucky to be able to get out of bed, much less the bedroom. For me, I simply try to savor the good days and be at peace with the bad ones because the good days, and the bad days, will be over.
Best of luck to your friend!
Sp Greaney from Ireland on February 11, 2018:
I know a woman who suffer from this and just like you mentioned, she is trying different things to control it. She has her good days and bad days but she just tries to gets on with things. Very informative hub.