“Am I alone in my egotism when I say that never does the pale light of dawn filter through the blinds of 52 Tavistock Square but I open my eyes and exclaim “Good God! Here I am again” not always with pleasure, often with pain, sometimes in a spasm”, Virginia Woolf
The body of someone suffering from fibromyalgia is often (but not necesarily) very sensitive to even gentle touch without experiencing pain. Muscles are tense, often in spasm, aching, and after prolonged use can become even more stressed. Exercise, the 20th and 21st century mantra of those who want to become or remain fit, often creates more pain for those of us with FMS, unless it is very gentle. Even then for some, any kind of movement can precipitate episodes of severe pain. What are people to do who cannot exercise, move, even walk slowly without wondering which body parts will break out in agony? The younger person begins to feel even older and the older person is additionally burdened with the aches and pains of aging.
There are distinct kinds of severe muscle responses to exercise, the most common being agonizing spasms, accompanied by the nervous systems’ restless legs and trapped nerves that together can play havoc for the FMS person contemplating exercise of any kind.
Spasms, often referred to as ‘Charley Horses’ (it is not known where that phrase originated from) can be excruciating and numerous. One of the women I interviewed for the book told me she often has them non-stop at night accompanied by ‘restless legs’ and both prevent her from restorative sleep, relief obtained only by heavy medications and long tub bath soaks.
What is it about exercise that often brings about more pain for the FMS sufferer? It is likely that the pain of exercise is caused by an overstimulation of the adrenal glands, or adrenal fatigue (exhaustion). The adrenals are small glands located on top of each kidney. One of the important hormones that they produce is cortisol, which helps with counteracting inflammation in the muscles.
In my book I explore in depth the idea that those of us with fibromyalgia are more prone to an overstimulation or hyperarousal of the nervous system from worrying about others before ourselves and producing a heightened sense of intuition regarding others’ needs, with constant stressful outcomes. We are (or were before fibromyalgia!) high energy people with extreme empathy and deep emotional responses. The result is that the adrenals are on high alert, that is, they are producing more and more adrenaline in the ‘fight or flight’ mode. Loss of sleep, inability to ‘shut off’, muscle pain, fatigue, weakness and depression are all off-shoots from this imbalance of cortisol in our system. Extreme sensitivity of our muscles results in both chronic and acute pain. Then, to take on the added burden of expending more energy through exercise means that our normal daily rhythm of cortisol balancing is even more compromised.
Most exercise requires the use of the legs. However, because Restless Leg Syndrome (RLS) is so common among people with FMS the added burden of increased movement of the legs can result in increased severity of symptoms of RLS. This neurological disorder is extremely debilitating without even the langauge to explain the experience. The sensations are peculiar and using such words as burning, creepy, crawly, uncomfortable do not adequately describe them. One constantly has the urge to move about and lying in bed at night is probably the worst time of all. Add to this the extra energy used during exercise and one can see that an already overextended nervous system will increase the discomfort and often painful RLS since it is highly likely that the hyper-arousal will not subside easily.
The muscles of the fibromyalgia sufferer are tight and often contracted. They may have become shortened, or perhaps conversely overextended from stretching too vigorously, resulting in decreased mobility. As a result of contractions due to pain, it is little wonder that nerves become ‘trapped’ in various locations throughout the body. While little has been written about this I believe that this occurs more frequently than has been reported. Constant excruciating pain in specific parts of the body that are very localized are often perplexing, but I suspect not uncommon. However, I have found that when dealing with a trapped nerve (mine appears to be permanent, just below one knee, in a very circumscribed area that is numb and about the size of a small pancake), the best result for pain relief is slow motions, particularly walking (my preference is in a pool). Simultaneously walking for extended periods of time or rapidly, exacerbates pain in other parts of the body.
In an effort to bring about more mobility and quiet the nervous system, deep breathing and very slow body motions are most helpful, as well as strengthening exercises. Vigorous activity and stretching is to be avoided. So what does all this mean? Should we or should we not exercise? I think the answer is that we have to become the expert of our own body and do as much as we possibly can without taking advice from anyone who does not know our body as well as we do. Exercise regimes should be gentle and not overtiring or prolonged; moderation is key. Gentle water aerobics, pool walking, Tai Chi, among other non-vigorous forms of exercise, such as short walks in fresh air can be very beneficial for not only our muscles and mobility but our sense of accomplishment. Unless yoga is a gentle practice a person is in danger of over-stretching already inflammed muscles. There are those who believe that a trainor who can guide a person through weight strengthening exercises with machines, will bring about pain reduction. This of course is very costly and cannot be undertaken alone. For everyone it is trial and error until one form or another brings about some degree of relief.
However, it can often also be a very discouraging process as sometimes it is one step forward and two backward. A regime may work well for days, weeks or months, and then suddenly an acute attack curtails our goals. But we must learn to accept that this is part of the process and do what we can one day at a time. If our goals are too unrealistic we will become easily discouraged. We cannot give up and just sit or rest. Even those among us who are in the most pain can find a day that is better than the one before and try to keep mobile with gentle activity and movement. Rest means rust, even when it feels like our bodies are the rust!
As for medication I continue to find my Neurontin of great help in times of great muscle pain!