„Today is one of those days when every little move seems heroic to me …” – Fibromyalgia (FMS) or „invisible disease”
This is just one of the desperate comments in the article by a rheumatologist, Dr. Fulvia Rossi, in which he talks about the so-called „invisible disease” (Fibromyalgia – FMS).
Hi! My name is Lelia and I suffer from Fibromyalgia!
I invite you to go together through the information that I have discovered!
Let me tell you about my own experience!
The goal is to penetrate a little into the world of a patient who has been diagnosed with Fibromyalgia!
For the first time I found out about this condition in the summer of 2018 following a rheumatological consultation performed in Italy, the country where I have been living for some years.
I had never heard of it, nor did I realize that most of the problems I was facing were related to this syndrome. Besides Endometriosis, being the „happy owner” of it too :)!
I managed to make the Jackpot in one fell swoop … but life goes on!
It is important that me or anyone in my situation learn to live with these intruders.
But in what ways?
You will find out everything in the following lines!
So, what is fibromyalgia?
After a minimal search on the internet, I notice that those on the Sfatul Medicului website (romanian medical website) describe it as follows:
„Fibromyalgia – a chronic condition characterized by diffuse pain and tenderness in muscles and soft tissue (tendons, ligaments), localized hotspots and sleep disturbances, weakness, and a variety of other symptoms. These problems can be bothersome and can disrupt daily activity. Fortunately, this syndrome does not permanently affect the muscles, joints or internal organs. Fibromyalgia is a chronic pain syndrome, it is not a disease or a physiological medical problem. „*
Given that my confidence in the Romanian health system is almost to zero, I preferred to look for information on sites in other countries.
· I would like to specify that I do not want to offend the medical staff in Romania, especially since I have relatives, acquaintances and close friends who work in this field!
What did I find out?
It seems that fibromyalgia is a chronic or long-term disease, the second most common condition that affects the bones and muscles. However, it is often misdiagnosed and misunderstood.
It’s classic symptoms are: widespread muscle pain, joint pain and fatigue.
In fact, the term „fibromyalgia” refers to pain (algos) in the muscles (mio) and fibrous tissues (fibro), such as tendons and ligaments.
Fibromyalgia is, consequently, a rheumatic disease that affects the muscular and skeletal system.
Thus we are dealing with a skeletal muscle syndrome that causes pain and fatigue that affects the bones and muscles causing chronic pain all over the body.
It is defined as „invisible” because, unfortunately, it is very difficult to diagnose, as there are no scientific parameters or laboratory markers to help identify it.
On the contrary, the manifestation in the patient is quite aggressive due to quite strong and debilitating symptoms. These pains lead to a state of muscle stiffness and general fatigue.
It goes without saying that every aspect of a person’s life is affected in a negative and debilitating way. And even those who live with them suffer the consequences. Apparently, these are symptoms that any of us may experience at some point in our lives. For this reason it may be easy to associate them with other problems and / or pathologies.
But this is the key to starting the diagnosis of fibromyalgia: if the pain persists for at least three months and if none of the symptoms can be attributed to another pathology, then it COULD be!
Symptoms of fibromyalgia
Widespread and chronic pain in muscles and bones, general fatigue (patients sleep for long periods of time without feeling rested), stiffness in many locations of the muscular and skeletal system.
In addition to the manifestations described above, more are often added, including:
· asthenia (chronic fatigue and debilitating fatigue),
· mood and sleep disorders,
· inability to concentrate or difficulty paying attention,
· lower abdominal pain,
· irritable bowel syndrome,
· psychiatric disorders such as depression and anxiety are often linked to the struggle to accept the condition,
· stressrelated disorders, such as post-traumatic stress disorder.
Among the symptoms listed above, I face with the muscle and bone pain, pelvic pain (here is also endometriosis) and back pain, sleep disorders and chronic fatigue, anxiety and panic attacks. I confess that they are terrible, but they are part of the „program”, so let’s go further!
Unfortunately, even in 2022, doctors do not fully understand the factors that cause people to experience widespread chronic pain associated with this condition. These manifestations could be the result of a misinterpretation of the brain and nerves or an overreaction to normal pain signals. This may be due to a chemical imbalance in the brain.
Some theories suggest that pain may be lowered in the brain. What was once not painful becomes very painful over time.
Regarding the above statement, among the countless checks performed, I met doctors who explained to me that my resistance to pain has decreased so much that I feel everything much more intense. For example, if someone has a headache and puts it in intensity at 5, on a scale of 1 to 10, for me the pain is directly between 9 and 10.
So, I personally confirm the above theory!
Another theory suggests that the body’s nerves and receptors become more sensitive to stimulation.
This means that they can overreact to pain signals, causing excessive pain.
However, how can this syndrome can be diagnosed?
The symptoms of fibromyalgia are considered subjective and cannot be determined or measured by tests, however it is defined as „fibromyalgia syndrome” due to the simultaneous presence of clinical signs that may occur simultaneously, thus helping to establish the diagnosis.
However, at this time some blood tests may be helpful, for example: blood count, rheumatic factors and thyroid tests.
Potential causes of fibromyalgia
Researchers and doctors still do not know exactly what causes FMS.
However, thanks to decades of research, they are close to understanding the factors to decipher this.
These factors include:
Genetics: Fibromyalgia is often genetic. Those who have a family member with this condition are more likely to develop it. Researchers believe that some genetic mutations play an important role in this condition, but those genes have not yet been identified.
Infections: previous illnesses can trigger fibromyalgia or may worsen the symptoms of the condition.
Trauma: People who suffer from physical or emotional trauma may develop the disease. The condition was linked to post-traumatic stress disorder. This is much more common in women than in men. According to NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases), women account for 80 to 90 percent of all cases. Doctors believe this may be related to differences in how men and women feel and react to pain, as well as how society expects them to respond to these factors.
Anxiety and depression: These and other mood disorders appear to be related to FMS, although there is no evidence that they actually cause this syndrome.
Poor physical movement: the condition is much more common in people who are not physically active. Exercise is one of the best treatments for fibromyalgia. They can help reduce the volume of pain.
Guide to the diagnosis of fibromyalgia
As we have seen, fibromyalgia is a syndrome that involves the appearance of a whole series of manifestations, simultaneously or after some time one after the other.
The underlying cause of the disease has not yet been discovered, but changes in the neurotransmitter system have been implicated, leading to misinterpretations of painful factors.
It literally means pain in the muscles and fibrous connective structures.
This syndrome also attacks the immune and endocrine systems!
If recognized in time, symptoms can be significantly reduced, with a consequent increase in quality of life.
Unfortunately, FMS is frequently underdiagnosed, often taking at least 5 years for a patient to get a proper diagnosis.
To confirm the diagnosis, a doctor evaluates:
· the patient’s medical history,
· selfreported symptoms,
· perform a complete clinical examination and manually assess sensitive points.
Related severe symptoms may also occur during the illness, including: asthenia, sleep disturbances (insomnia), mood disorders.
Fibromyalgia develops progressively with a reduction in muscle function, a state of pain and discomfort, a limitation in the execution of movements. It has been found that certain physical or emotional events can affect its occurrence, such as trauma, family problems, stress and certain emotional states.
How is the patient feeling?
FMS is no longer an imaginary disease, no psychological problem; it is a name that does not describe the causes of the disease, but its manifestations: anyone with that special set of symptoms suffers from this condition.
It is often referred to as a syndrome because we do not know what the disease is, where it comes from, or what the cause is.
Can fibromyalgia be treated? If so, how?
There is no concrete remedy, just a combination of medications, exercise, stress management and healthy habits that can relieve the symptoms enough to lead a normal, active life.
What medications are used to treat fibromyalgia?
The goal of treatment is to manage pain and improve quality of life.
This is often done through a two-pronged approach: self-care and medication.
Common medications for fibromyalgia include: sedatives, antidepressants and/or vitamins.
Following a discussion with my family doctor from Italy, she informed me that there is various research underway to invent an injection that will be given once a month to patients with this diagnosis. But we will have to wait!
Are there natural and alternative treatments for fibromyalgia?
Lifestyle is everything!
Clearly, there are several alternative remedies that can reduce the pain and make the patient feel better overall.
These treatments include:
· regular exercises,
· massage therapy,
· a balanced and healthy diet.
Ways to relieve pain and fatigue caused by fibromyalgia
If you have fibromyalgia, you know that life is at least 10 times harder.
Chronic pain affects every aspect of the day.
You’re tired, you’re in pain and you can’t think well!
We know that there is no specific treatment, but with these ways to alleviate your symptoms, you may be able to improve your life.
Fibromyalgia is a painful condition that causes you to self-marginalize.
Worse, every symptom affects relationships, professional life, physical, emotional and mental health.
„Effective treatment of fibromyalgia requires a combination of medication and lifestyle,” said doctor Daniel Clauw, an expert and professor of anesthesia and medicine at the University of Michigan from Ann Arbor and director of the Chronic Pain and Fatigue Research Center.
So let’s look at the tips from experts for relieving fibromyalgia pain and fatigue:
– It is recommended for practically everyone, but it can especially help those who suffer, who often feel stiffness (especially after waking up in the morning) and restless tired legs. Regular exercise – anything you can do regularly can improve your mood, relieve pain, improve sleep, reduce fatigue, improve circulation and strengthen your heart. Recommended activities for patients include: stretching, walking, yoga, cycling, swimming, water aerobics and strength training. „Take small steps to become more active as your symptoms begin to improve,” doctor Clauw advises. But be careful! Exercise can sometimes be counterproductive, says Stephen MacPherson, a naturopath at the Fibromyalgia Center in Seattle. Many patients are so tired that exercise is impossible. Know your limits, consult your doctor before starting or changing an exercise program!
Try different alternative therapies:
– Aquatic therapy, light aerobics, acupuncture and osteopathic or chiropractic manipulation are helpful, according to experts from the National Fibromyalgia Association. Physical therapy can increase mobility, improve physical function and relieve pain. National Pain Foundation experts believe that physical therapy can help people regain muscle tone and flexibility. Massages can help some patients, but beware, they are not for everyone, because even light pressure could aggravate the pain, according to doctor MacPherson. „A medium pressure massage can make a person feel like they’ve been hit by a truck the next day.” In addition to exercise, all therapies should be implemented gradually.
Have a healthy diet!
– Eat lots of vegetables, fruits, whole grains, lean meats and dairy products that will give you energy, reduce weight and improve your overall health. Janet Horn, a Baltimore health practitioner suggests eliminating the following foods that seem to bother: food additives found in preservatives and sausages, aspartame, sugar.
Get enough sleep:
– Pain, stress and anxiety can deprive you of the ability to sleep. But rest is extremely important to manage one of the main symptoms of fibromyalgia: fatigue. Many of doctor MacPherson’s patients suffer from sleep apnea.
Check with your doctor to make sure your sleeping pills are adequate and try to change your sleep hours!
Here are some tips from the University of Maryland’s Center for Sleep Disorders:
– make sure the bedroom is comfortable, reducing noise and extreme temperatures. Use light and comfortable bedding and clothing. Perform rituals to help you relax before bed, such as a soothing bath or light snack. Go to bed and wake up at the same time every day, including weekends and holidays. Avoid caffeine, alcohol and cigarettes. Stay away from fatty and spicy foods that can upset your stomach or cause heartburn.
Beware of sex life!
– Women with fibromyalgia may experience pain during the menstrual cycle, but also during sexual intercourse. Pain or stiffness in the joints / muscles can interfere with your sex life. In addition to physical challenges, negative changes in self-perception, such as: feeling unattractive, uncomfortable, or simply not feeling sexy, can lead to loss of desire. Stress and anxiety can also be other obstacles. If you avoid sex for any of these reasons, talk to your doctor. Sexual health is just as important as your physical, mental and emotional health. A doctor will not only help you solve the problem, but will also advise you on how to increase your self-esteem and manage your pain or discomfort.
– Fibromyalgia can affect memory and cause the inability to think clearly, which can be especially frustrating if you are trying to perform simple tasks.
„Constant stress can drain the endocrine system and alter hormone levels,” which may be the cause of this syndrome, says doctor MacPherson.
Try these tips to manage your stress: adjust your daily activities!
Patients sometimes exacerbate pain and fatigue, exaggerating when they feel good. Try relaxation techniques.
Methods that help reduce stress and pain include breathing and relaxation exercises, meditation and aromatherapy.
Talk to your bosses to change your schedule, reduce your workload, or identify and communicate your needs to your bosses and colleagues. Consult a cognitive-behavioral therapist. This form of psychotherapy examines how our thinking affects how we feel and what we do. FMS patients can have a lot of emotional stress, says Dr. MacPherson, and therapy can help manage it.
Try herbs and supplements:
– Magnesium and acetyl-L-carnitine can help relieve symptoms, says Suzy Cohen, Lifescript pharmacist and author of The 24-Hour Pharmacist (William Morrow Paperbacks). „Magnesium reduces nerve and muscle pain.” It is also used to produce ATP, an energy molecule that can help with fatigue: „And the body uses acetyl-L-carnitine to produce another hormone, acetylcholine, which is used in the brain to improve mood, memory and difficulty concentrating, which often coincides with fibromyalgia.”
Always talk to your doctor about natural supplements, herbs, or other therapies you are considering!
We do not know exactly if there is a genetic abnormality that leads to the disease, however many of the factors that can contribute to its onset, including physical or mental trauma, after a car accident and / or hormonal changes.
Disease that wears out the mind and body: people with fibromyalgia do not dare to apply, they never say what they need because they do not give permission to „exist”. Such suffering leads to closure of the rest of the world as they feel flawed and a „burden” on those around them.
It takes the support of loved ones to understand that those who suffer cannot devote themselves to daily activities constantly and at the same pace as before, and that moments of confusion and bewilderment can sometimes simply disappear with a smile. A polite word or a small gesture of love can change their mood. From doctors to those close to them, they must have a supportive attitude, not to dispute the suffering of such a patient or to think that it is a strictly psychological problem, they should not be treated according to the general medicine manual! They need to be listened to because they are not numbers, but people who are suffering, who have feelings, and who are fragile.
Everyone reacts to events in an intimate way and understanding is the greatest consolation.
Some medications, such as painkillers, antidepressants, antiepileptics, and supplements can certainly help the patient manage the condition. In addition to pharmacological support, it is important to observe a number of precautions that will help relieve pain and improve lifestyle.
In fact, according to a number of studies and testimonials, it is essential that patients suffering from fibromyalgia try to reduce stress. Get as much sleep as possible! Do relaxing activities! To lead a healthy lifestyle and to exercise, obviously always respecting its limits!
If you experience these symptoms and are concerned about fibromyalgia, contact your doctor immediately!
· * Sfatul Medicului (Romanian medical site) – definition of fibromyalgia
· * FMS – Fibromyalgia
· About fibromyalgia – https://www.lafibromialgia.it/