Pain. Relentless pain.
Pain when you sit. Discomfort when you stand. Agony when you lie down.
Never ending discomfort.
That is the life of those who live with Fibromyalgia (FMS).
According to the NIH (National Institutes of Health), “Fibromyalgia is a common disorder that involves widespread pain, tenderness, fatigue, and other symptoms. It’s not a form of arthritis, but like arthritis, it can interfere with a person’s ability to perform everyday activities. An estimated 5 million American adults have Fibromyalgia. Between 80 and 90 percent of people with Fibromyalgia are women, but men and children can also have this condition.” (https://nccih.nih.gov/health/pain/fibromyalgia.htm)
FMS is not a disease. It is a syndrome. Diseases have a known cause as well an understanding of the mechanisms for producing those symptoms. A syndrome has a specific set of symptoms and signs that come together. Other examples of syndromes are Rheumatoid Arthritis and Lupus.
So how is FMS diagnosed? According to the NIAMS, “Currently there aren’t any laboratory tests to diagnose Fibromyalgia. You may see many doctors before receiving the diagnosis. This can happen because the main symptoms of Fibromyalgia, pain, and fatigue, are similar to many other conditions.
The National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS) states, “Sometimes you may have two or more chronic pain conditions at the same time, such as Chronic Fatigue Syndrome; Endometriosis; Inflammatory Bowel disease; Interstitial Cystitis; Temporomandibular Joint Dysfunction (TMJ); and/ or Vulvodynia.” And if you have certain other diseases, you may be more likely to have Fibromyalgia. These diseases include Rheumatoid arthritis; Systemic Lupus Erythematosus (commonly called Lupus); and Ankylosing Spondylitis (spinal arthritis). Plus, if you have a family member with Fibromyalgia (FMS), you are at a have a higher risk. (https://www.niams.nih.gov/health-topics/fibromyalgia#tab-risk)
So how is FMS diagnosed? According to the NIAMS, “Currently there aren’t any laboratory tests to diagnose Fibromyalgia. You may see many doctors before receiving the diagnosis. This can happen because the main symptoms of Fibromyalgia, pain, and fatigue, are similar to many other conditions. Doctors often have to rule out other causes of these symptoms before making a diagnosis of Fibromyalgia.” (https://www.niams.nih.gov/health-topics/fibromyalgia#tab-diagnosis)
We do know some facts as to what Fibromyalgia is and is not.
- It is a complex syndrome where the pain is amplified, has musculoskeletal discomfort and systemic symptoms. The way the body processes pain is altered.
- It is now firmly established to be a dysfunction of the central nervous system.
- It is not a musculoskeletal disorder. Although muscles hurt.
- It is not progressive. If you become significantly worse over time there may be a co-existing condition that hasn’t been addressed or some aggravating factor.
- It is not the same as myofascial pain; trigger points happen with myofascial pain, not Fibromyalgia. Tender points are seen in Fibromyalgia.
- It is not a homogenous condition, meaning the syndrome is not the same for each individual.
- It is not an autoimmune condition but you are more vulnerable to develop coexisting autoimmune conditions.
- It is not a mental illness.
- It is not an infection.
The guidelines that are often used to diagnose, according to NIAMS, are the following: a personal history of widespread pain for at least 3 months or more; having symptoms such as memory or thought problems: fatigue; and waking up un-refreshed after sleeping.
But there are many more. Too many symptoms for me to write down. This is a list of a few symptoms and what area of the body they appear. Remember, the pain can happen anywhere from the top of your head to the tips of your toes. Often that chronic pain causes tender spots, which make it difficult to sit, sleep or be still.
Allergies– some may find that all of sudden they have food allergies; allergies appear when histamine is released into the body.
Bladder– urgency; painful urination; urethral syndrome-look for cause for it could be other issue happening.
Bone– neck pain; mid back pain; lower back pain; SI joint dysfunction; tailbone pain; knee pain; joint pain; and feet pain.
Coordination/Balance– it can affect your perception of space making you prone to bumping into things; clumsiness; dizziness; imbalance; staggering walk; and sensitivity to vibrations around you.
Depression (anxiety)– a study from the NIH, confirmed that patients with “Fibromyalgia have an increased risk of suicidal behavior”. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5591103/)
Dry Mucous membranes– in eyes; mouth; nose; lining of the vagina (also called sicca syndrome); and in GI tract.
Ears– sinus stuffiness that travels at the night-whatever side you roll to gets stuffy; a continuous runny nose; chronic dry cough; ear pain; ringing in ears, or tinnitus; and sensitivity to sounds.
Eyes– blurred or double vision; struggling to see with night vision when driving; words that appear to “jump” off the page when reading; and sensitivity to lights.
Feet– first step of the morning feels as if “walking” on nails or broken glass; and burning feet.
Fluid retention/edema- can produce symptoms of headaches, blurring of vision, abdominal pain, and diarrhea.
Gut– bloating is common; reflux; nausea; appendix like pain; and irritable bowel.
Hair– loss of hair.
Head/Neck– headaches; tension headaches; migraines; stiff neck; and discomfort carrying bag or coat on a shoulder.
Heart– fluctuating blood pressure due to carotid sinuses; heart attack “like pains”; rapid heartbeat; and fluttering of the heart.
Jaw– TMJ-popping of the jaw; clenching of jaw or grinding of teeth-this occurs when the brain doesn’t know what to do in response to mixed or erratic signals it receives from the body and is a way of handling those signals of pain.
Lungs– shortness of breath; “stitch inside”; and restriction of chest expansion.
Muscle Pain– generalized all over aches and pains; tender scalp; sore neck; muscle weakness; muscles that “jump” when trying to sleep; upper and lower leg cramps; nocturnal calf cramps; muscle cramps and twitches; pain radiating down leg from hip; tight hamstrings; weak ankles; and sharp, lightening pain up front of lower legs.
Nose– sensitivity to smells/odors.
Pelvic floor– painful intercourse; pelvic, vaginal and rectal pain.
Skin- blotchy, itchy, dry, mottled, and may even be more prone to “overreacting” to mosquitoes and black fly bites; sensation of prickly pain on face or “electric” face; strange sensation, or feeling as if water is running down your leg; sensation of ants crawling under skin; and hypersensitivity, and or, numbness of outer thigh.
Sleep– trouble falling asleep; staying asleep; and not feeling rested in the morning.
Speech– those with a personal history of Asthma, sinus difficulties, post-nasal drip, and allergies can create trigger points around the trachea and larynx which can result in changes in the sound of your voice and even voice loss.
Swallowing– trouble chewing and swallowing; excessive drooling with sleep; and/or choking on saliva.
Tooth pain– can be a trigger of related muscle.
So many. Basically anywhere you have a muscle, you are vulnerable to have pain or altered function of that muscle.
So much pain. But there is hope. Fibromyalgia is finally recognized as a physical condition, not mental, in the medical community. It is not “in our head” as it used to be considered. And if your doctor doesn’t see it that way then look into other options and physicians. You are your best advocate.
Never give up.
(Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition) Paperback – June 30, 2001, by Devin J, Starlanyl and Mary Ellen Copeland)