Today is a good day to tell you about Fibromyalgia syndrome (FMS) which I suffer from. What is it??.
Fibromyalgia is a chronic illness that causes immense physical pain and debilitating fatigue. Classified as a syndrome, fibromyalgia is not a disease. Instead it is a condition that causes many different symptoms which affect all systems in the body. The name fibromyalgia comes from “fibro” meaning fibrous tissue (such as tendons and ligaments), “my” meaning muscles, and “algia” meaning pain.
I cope pretty well with the pain and condition once I accepted what I had. I had always had pain and never really knew why. I just coped. It took years to get the diagnosis and once I understand the condition and accepted it, I was half way there. I am very lucky that I do not have the chronic depression that many with fibro have. I have good days or periods when my pain is what I now class as normal, and I have days like today when it is much more severe and I melt into the cushions of the sofa and do very little.
The pain varies from a dull ache, to pain like cramp and spasms, or the worse is the lactic acid burn that you get from over exhaustion doing exercise. This can last for hours and hours, days or weeks, then I might have a good day and then it comes back again. I class my pain on the 1-10/10 scale. My normal is 3/10. I have found that ‘resetting’ my pain tolerance to this minimum has really helped me. Today, I am about a 7.5/10 and I am having a quiet day doing very little.
I know there can be things that trigger my bad days. The weather plays a major part. Winter is hell but I have had several good weeks while we had hot summer days. But today the barometric pressure has risen drastically and so has my pain. Sudden increases or drops in the air pressure really affect me. So do the phases of the moon. In the few days leading up to and after full moon I ache. Full moon certainly does effect me but I categorically deny that I am the one you hear howling at the moon. It’s not me, honest!!!
I eat fresh foods where possible and keep away from processed and packaged foods. White bread also gives me grief, which is cruel as I so love ciabatta bread.
There is no pain medication for fibro that stops the pain and there is not cure. Nothing that takes the pain away anyway. I get by mostly with only taking Paractamol and Diclofenac (voltaren) night and mornings, but when I am like I am today, I resort to codeine, which doesn’t really help the pain, but makes me not care quite so much.
But, mostly I do fine. I can still manage the house – altho I am not as fastidious as I used to be, and my garden is becoming easier to work in with the raised gardens and I go swimming as often as I can. Gentle aqua exercise is the best form of exercise for us fibros. I have learnt to live day to day and do what I can, when I can, and no longer sweat the little things. Sadly what I can’t do today, always waits until tomorrow. The house work fairy got fed up and left years ago.
I am always tired so have to pace myself when working. If not, I suffer the next day. I have trouble getting off to sleep and can no longer leap out of bed and shower and dress in a flash. Leaping is long gone. I have to go slowly getting up and at’em in the morning. I need at least 8-10 hrs sleep a night. Lack of sleep really plays havoc with my body.
Some time ago I downloaded the following information from somewhere, but I did not log where I got it from.
Fibromyalgia (Fie-bro-my-al-gia) Syndrome (FMS) is a chronic invisible illnesses. It is not a musculoskeletal dysfunction. It’s a disorder of the Central nervous system informational substances such as neurotransmitters, hormones, peptides, and other biochemical messengers which regulate and run the systems of the body and mind. It causes hypersensitivity to all sorts of stimuli, so it can amplify pain. There are no trigger points only tender points, which do not refer pain.
Fibromyalgia (FMS) often occurs with chronic myofascial (my-oh-fass-shall) pain (CMP), which is a neuromuscular chronic pain condition that can cause muscle weakness and dysfunction, and incapacitating, intolerable pain. Achy, body-wide pain is a symptom of FMS, but not all widespread pain is FMS related. Chronic Fatigue syndrome (CFS) is also a symptom of FMS but not all with CFS have FMS.
People with FMS wake up feeling that they haven’t slept at all. You are denied refreshing sleep, and sleep is when the body does much of its repair and biochemical regulation. The person with FMS can’t recover from exercise, stress and work like healthy people. They are constantly in a state of
sleep deprivation unless they find a combination of medications, lifestyle
modifications and diet that work for them. Morning stiffness can be severe. Symptoms fluctuate from hour to hour and day to day and may worsen with changes in barometric pressure, humidity, cold or heat. If you overextend your limits, you may have extra pain for days or weeks. Stress can cause a complete meltdown.
Symptoms can be severe, yet blood tests, X-ray and other common diagnostic
tests cannot diagnose FMS. FMS and CMP are two of the most common sources of chronic pain, and the most undiagnosed or misdiagnosed of illnesses.
Most FMS patients have memory and cognitive impairments (we call it brain fog). Doctors often refer FMS patients to psychologists or psychiatrists because of this, yet studies show that psychologically, these patients have no more abnormal psychology than arthritis patients. People with FMS and CMP are often misunderstood and doubted, and this, in addition to the chronic pain and other symptoms, could cause anyone to feel depressed and confused. An American College of Rheumatology study in 1992 found that the impact of FMS on your life is as bad, or worse, than Reumatoid Arthritis. They listed one major factor in this as “clinician bias”. FMS & CMP patients don’t look sick and their symptoms vary, so they are often misunderstood and disbelieved by clinicians, family and friends.
FMS and CMP are not progressive, but symptoms may worsen if the perpetuating factors are not identified and dealt with promptly and adequately.
If you have FMS and CMP, you have a history of widespread pain and wake up every morning feeling like you’ve been run over by a truck. You may have headaches and loss of balance. Looking both ways when going into traffic can cause dizziness. You may have short-term memory loss and other cognitive dysfunctions, and you may not always have control over your muscles. Irritable bowel syndrome, dizziness and loss of balance, buckling ankles and knees, pelvic pain, painful intercourse in women, impotence in men, and many more symptoms. The tightened and rigid myofascia surrounding the muscles can entrap nerves, blood vessels, and ducts.
There is no cure for FMS right now. There are medications and therapies that help only some symptoms of FMS and CMP. The key to reducing symptom load is always to identify every perpetuating factor (such as lack of restorative sleep, poor diet and posture, chronic pain, etc.) and deal with each of them as thoroughly as possible. It takes a commitment on the part of the patient to practice a healthy lifestyle, including good nutrition, a program of gentle stretching and moderate exercise, and avoidance of smoking and other bad habits.
There must be recognition by both the patient and her/his companions in life that there are limitations for people with FMS, CFS and/or CMP. It isn’t easy to find the right balance to optimize the quality of life. Be patient, compassionate, and listen.
Ask if there is something you can do to help.
P.S. – I do not need your sympathy… I just want you to understand that I (and others like me) can not always be the person you want and expect me/us to be. I do my best and that is good enough for me. It should be for you too.