More Than Pain & Fatigue: Rare Fibromyalgia Symptoms
More Than Pain & Fatigue: Rare Fibromyalgia Symptoms
Fibromyalgia symptoms are commonly characterized by widespread pain, fatigue and brain fog. Given fibromyalgia is a condition which involves nociplastic pain or a sensitised central nervous system that impacts pain-related processing as well as imbalance in the immune system, it’s possible to experience various rare or unusual symptoms beyond pain and fatigue.
Before you dive into the list, many of these symptoms can occur as a result of other conditions and while we have mentioned some of these, the list is by no means exhaustive. If you experience any of these symptoms or if you notice your symptoms changing over time then it's always good to get things checked out by a healthcare professional to ensure any underlying conditions can be ruled out!
Do any of the following symptoms ring true for you?
- Temperature sensitivity: If you feel like a human barometer and are sensitive to changes in temperature, and extremes of heat or cold, you’re not alone. Altered thermoregulatory activity1 goes beyond just feeling extra chilly or overheating – some people report difficulty maintaining body temperature, excessive sweating, extreme pain and stiffness in cold temperatures, and inability to sleep when it's hot. Hypersensitivity to heat and cold can also be related to sensitization of the pain system due to the impact of stress on the nervous system.
- Light sensitivity: Also known as photosensitivity you may notice that sometimes you can get pain from bright lights. Patients with fibromyalgia have been shown to express discomfort at light levels substantially lower compared to healthy controls2.
- Painful (++!) periods: Around the time of your period, you may experience a combination of symptoms known as dysmenorrhea - painful abdominal cramps and some associated symptoms such as headache, lethargy, sleep disturbances, tender breasts, various body pains, disturbed appetite, nausea, vomiting, constipation or diarrhea, and increased urination, anxiety, depression, and irritability. While many women experience dysmenorrhea, for people with fibro, the experience can be much worse3.
- Restless legs: Some people experience restless, jerking, cramping, tingling sensations in their legs. These muscular spasms can also be felt in other parts of the body. The main impact of restless legs is the impact on sleep - which, as we know, is already typically not great! For some people, they may be diagnosed with the neurological condition Restless Legs Syndrome (RLS) based on these symptoms.
- Chest pain: Pain and tightness in the chest? This could be costochondritis, which is inflammation of the cartilage that connects a rib to the sternum. Costochondritis can mimic the pain of a heart attack or other heart conditions because one of the many tender points is located near to the chest – same pain location but a totally different cause4. For the same reason, people with fibromyalgia may report chest pain that resembles heart pain (angina) but is not related to heart disease.
- Vision problems: Changes in how the small nerve fibres of the eye work have been observed in patients with fibromyalgia, causing blurred vision5.
- Sensitive skin: Heightened sensitivity to light touch or pressure, known as allodynia, is a common symptom reported by many individuals with fibromyalgia. Imagine walking through a field of long grass and it feels as if you are scraping your way through barbed wire. Or walking in a rainstorm and the droplets are like pin pricks. Even with the most gentle touch or pressure on certain areas of their body can be unbearable.
- Pelvic and urinary problems: Issues when going to the loo? Perhaps you feel pain and pressure or even the dreaded accidents (mild incontinence). While it is often reported as a rare fibromyalgia symptom, studies have shown it can be quite common however it is less reported more due to women’s reluctance to disclose their “wee” problems6.
- Dizziness and balance problems: Balance issues including feeling lightheaded can be problematic and a possible fall risk. According to one study, for people who experience this symptom, it was reported in the top ten most debilitating of symptoms7.
- Discoloured hands or feet: Some people report that when there is restricted blood flow to extremities (hands or feet), their skin can turn various shades of blue, red and white. It can occur in response to both cold exposure and emotional stress. This can be diagnosed as Raynaud's phenomenon. Between a quarter and half of people living with fibromyalgia might report having this experience8.
- Dryness of mouth, eyes, and skin: Some individuals with fibromyalgia experience excessively dry eyes and mouth. Dry eyes can occur in around 20% to 35% of people living with fibromyalgia9. Sometimes people might receive a diagnosis of Sjögren's syndrome, a disorder of the immune system which presents with these symptoms.
- Numbness and tingling: Also known as paresthesia, numbness and tingling are symptoms reported by people living with fibromyalgia. The sensations are commonly felt in the extremities (hands and feet) and limbs. Some people say it can feel like your phone vibrating in your pocket and others report it as pins and needles or even spasming of muscles. Paresthesia is commonly associated with conditions such as peripheral neuropathy or disorders affecting the nervous system and so symptoms should be reported to your healthcare team to ensure any other conditions are ruled out.
- Hearing loss. According to a recent Tawainese study, people with fibromyalgia are almost one and a half more likely to have hearing loss and this is believed to be attributed to central nervous system abnormality in sensory processing10.
Knowledge is power
Evidence-based treatments for reducing rare fibromyalgia symptoms
First, rule out other conditions. The many and varied symptoms of fibromyalgia can affect every structure in the musculoskeletal system. This includes the tendons, ligaments, muscles and joints, and can simulate many other conditions, which makes getting a diagnosis complicated11. So, before we launch into some ideas for reducing the impact of these rare fibromyalgia symptoms it is important to remember that some of these symptoms may in fact be the product of another similar condition. Fibromyalgia has many co-occurring conditions that often have similar symptoms.
The most common co-occuring conditions for fibromyalgia are:
- Multiple Sclerosis (MS)
- Irritable Bowel Syndrome (IBS)
- Arthritis conditions such as rheumatoid arthritis (RA) and osteoarthritis
- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
- Lyme disease
- Sleep apnea
No matter the type of symptoms you experience, it is always recommended to detail them to your healthcare team so you can confirm and rule out other conditions.
Understand your fibromyalgia. Simply learning more about fibromyalgia and its underlying causes can be helpful, especially knowing that there is no underlying tissue/mechanical damage. Sometimes, there can be a sense of relief to know you are not alone – other people experience these symptoms too. That's definitely the sentiment shared in our online community!
Address central sensitisation. Clinical studies have shown that some of the painful symptoms mentioned here (such as allodynia, tingling, restlessness, temperature hypersensitivity) are all likely a result of errors in the pain processing in the central nervous system12. Treatments that address central sensitisation are likely to help in reducing the impact of these symptoms. Holistic treatments that address lifestyle factors and improve your biological, psychological, and social well-being are likely to have long term benefit.
Stay away from the cause. Much like our advice around knowing your flare up triggers, these rare fibromyalgia symptoms might require you to (as best you can) avoid situations that might trigger symptoms. Perhaps that means no recreating the sound of music scenes frolicking through the long grass and no singing in the rain, but at least you might minimise the impact of these symptoms. There will be some of these rare symptoms that are really tricky to manage or avoid. For example, you can wear protective clothing and stay hydrated but we cannot control the weather gods can we?
Celebrate your “you”-niqueness. And don't forget, you are unique - I mean a walking and talking weather barometer - how cool?! Be kind to yourself and try to avoid comparison because there is no such thing as ‘normal’! (Full credit to our wonderful support coach Martine for her terminology of being “you”nique!)
For more information…
Take note of your symptoms (how and when they occur) and talk openly to health professionals to ensure what is a result of your fibro and what might be signs of some other medical issue that needs attention. You may even like to share this post with your support network so they can also understand the many and varied ways fibro shows up for people.
If you want a little more support, the MoreGoodDays program will help you understand your fibromyalgia symptoms, what makes them better or worse over time, and science-backed tools to get them under control so you can get back to living your life. For more information and ideas for managing these and other symptoms of fibromyalgia, check your suitability.