Fibromyalgia blog started in 2015. I share my experiences of life with fibromyalgia. The highs and lows sprinkled with positivity and happiness even on the bad days!
What is Fibromyalgia?
Well contrary to popular belief it is not a new medical condition, many people received their diagnosis over thirty years ago, something is not new simply because a person has never heard of it before.
Fibromyalgia is a chronic illness usually associated with pain and chronic fatigue yet for the people living with this illness there are so many other symptoms. If we got one hundred people together with fibromyalgia and discussed symptoms and severity we would all be different. It is an illness that has core features but very unique to each person. Some people can continue with their current life, job, and social relationships whilst others can be bedridden as the chronic pain becomes such an integral part of their life, they become a totally different person and mourn the person they once were. Very different presentations yet all equal in fighting the same illness. (I can not stand hierarchies in illness)
Even within one person, each day may be different. Sometimes we have good days. This is not your version of a good day, but for us, the symptoms seem balanced enough for us to continue with life. Rather like a day when you are just getting over the flu and start to feel a little more alive. This is how we feel on a good day with Fibromyalgia.
Sometimes we wake and even having a wash can instantly drain us of all energy, some days we can start the day good only to feel suddenly unwell and have to go to bed. There are days when we can not even manage to get out of bed!
Imagine having an illness that makes you look like a fraud as your symptoms and energy levels fluctuate. We have no control over this change, we just have to try our best to find a balance.
Imagine for a minute how you would feel having the severe flu for years?
So what causes fibromyalgia? The answer to this is not simple to define and there are so many conflicting suggestions being put forward. It is safer to say the exact cause of fibromyalgia is unknown, but it's thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord, and nerves) processes pain messages carried around the body.
Most researchers agree that Fibromyalgia is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. A person with fibromyalgia experiences pain amplification due to abnormal sensory processing in the central nervous system.
It's also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents.
It is also believed to be triggered by a physical or emotional trauma but often the cause may be unexplained. It seems to occur after a very stressful situation for many people and often leaves us wondering did it lay dormant and the stress brought it to the core or did the stress cause a decline in health. Very much a "what came first, the chicken or the egg?" For some people, the onset is slow and gradual. Other people find the illness was triggered by trauma to the body, an injury, giving birth, having an operation, the breakdown of a relationship, the death of a loved one, PTSD, viral infections, attacks the immune system.
In addition to what I mentioned above regarding the brain processing pain differently, people with fibromyalgia have been found to have lower than normal levels of certain hormones (serotonin, dopamine, and noradrenaline). This may play a key role in the cause of fibromyalgia.
How this abrupt shift happens is not clear but may involve immune cells in the brain and spinal cord called glia cells that may become suddenly and permanently activated. These cells then may produce inflammatory products that symptoms such as pain, fatigue, sensory, cognitive and mood problems we commonly associate with having colds. Researchers have been able to trigger fibromyalgia-like conditions in a laboratory by subjecting laboratory animals to prolonged and/or unexpected periods of stress. (I do not agree with animal testing I am only reiterating what I have read)
Studies suggest it is due to the digestive system overloading on stress factors, they claim our body is under constant assault from invisible threats that constantly undermine our well-being.
It has been suggested in recent studies that mitochondrial dysfunction may play a role in fibromyalgia and chronic fatigue syndrome (CFS).
More females seem to be diagnosed with fibromyalgia yet why females are at greater risk of coming down with fibromyalgia is not clear but their complex hormonal and immune systems may play a role. Some studies suggest that testosterone plays a protective role in men. Although tell that to the thousands of men diagnosed daily that they are protected and you may hear them laugh sarcastically.
Regardless of its cause, theories and suggestions on how we get Fibromyalgia by the medical profession, we will agree on one thing; Fibromyalgia is life-altering.
The main symptom of fibromyalgia is a widespread pain in your body, (yet many of us feel that chronic fatigue is the worst debilitating symptom.) How this pain feels to you will vary. It may feel like a deep ache in your muscles or you may feel a burning, throbbing, intense and persistent pain all over your body. The pain may come and go and move about to different areas of your body. Fibromyalgia can also make you more sensitive to pain so you might find that even the slightest touch is painful. (allodynia) The symptoms may include tingling of the skin (paresthesias), prolonged muscle spasms, weakness in the limbs, nerve pain, muscle twitching,
Chronic Fatigue is nothing at all like simply feeling tired, you wake exhausted and never seem to obtain refreshing sleep. Simple tasks of living such as a bath or shower can use up the day's energy and you have to then rest again. Imagine the worst flu, the debilitating feeling of lifelessness and no energy.
Sleeping badly, unrefreshed sleep, inability to relax and fall asleep then find you wake at 3 am and can not return to sleep.
Many people experience cognitive dysfunction (known as "fibrofog"), which may be characterized by impaired concentration, problems with short and long-term memory, short-term memory consolidation, impaired speed of performance, inability to multi-task, cognitive overload, and diminished attention span dizziness and clumsiness.
There is then a list of "other symptoms" some of these that might be considered: muscle pain, irritable bowel syndrome, fatigue/tiredness, thinking or remembering problem, muscle weakness, headache, pain/cramps in the abdomen, numbness/tingling, dizziness, insomnia, depression, constipation, pain in the upper abdomen, nausea, nervousness, chest pain, blurred vision, fever, diarrhea, dry mouth, itching, wheezing, Raynaud’s phenomenon, hives/welts, ringing in ears, vomiting, heartburn, oral ulcers, loss of/change in taste, seizures, dry eyes, shortness of breath, loss of appetite, rash, sun sensitivity, hearing difficulties, easy bruising, hair loss, frequent urination, painful urination, and bladder spasms. Feeling too hot or too cold because you're not able to regulate your body temperature properly, Restless legs syndrome (an overwhelming urge to move your legs) Headaches, cluster headaches, migraine. Problems with your jaw, such as pain or difficulty moving your jaw joint, teeth grinding.
As an ex-nurse, a complementary therapist and a lady with Fibromyalgia I know there are huge symptom lists bouncing about the internet that I view as dangerous and give a wrong view of Fibromyalgia. It is like someone sat down one day and listed every act of living and tried to attach a fibromyalgia label to it. I do feel it makes a mockery of what this horrible and cruel illness is about and also causes scaremongering.
We are all women and so will share many symptoms that are not nice but that does not imply they are fibro related. We also share many other illnesses as well as fibro but the symptoms of that illness do not need to be listed as a fibromyalgia.
Also, people misdiagnosed themselves and put everything down to fibro when it could be a new illness that needs a medical opinion or they are brewing an infection or something. Please don't believe everything that someone somewhere has said is fibromyalgia related as some things just instil fear, sadness, and panic.
There are so many symptoms that are never listed in medical texts maybe one day someone will write a comprehensive list of symptoms and how we feel and suffer. It’s a long and challenging journey with many obstacles, dark paths and far from easy but things can get better with pacing, good quality rest, sleep, and management.
Fibromyalgia may be life-changing and yes I am now a totally different person as a result of the years living with chronic illness, but I do smile daily and find so much happiness and real contentment with the simple things in life.
All we ask is do not judge us, we never asked to wake up one day and never get better, we do not feel lucky to have to stay in bed or even give up work. Try to understand this illness with us as we are doing the best we can.