Chronic pain is more common in American adults than cancer, diabetes, and heart disease combined. It lasts for months or even years. It may come and go or be almost continuous. It could be the result of a chronic medical condition such as lupus, Multiple Sclerosis, or arthritis, or a result of a previous trauma or injury, or from a degenerative condition in the aging process. Sometimes multiple conditions may be present simultaneously causing chronic pain.
Over fifteen years ago, one midsummer weekend, I got overheated at an all day event out in the Texas heat. A couple of days later, a weird incident happened. I woke up unable to move or talk. It was very scary!
I wasn’t in pain. In fact, my body had gone totally numb. It was like my brain was awake but my body was still asleep and wouldn’t respond to my brain’s commands.
I had been laying there for some time, curled on my left side, when my husband’s alarm went off and he started getting ready for work. He was trying to be quiet so as not to wake me. My saving grace was that I knew he would lean down and kiss me goodbye before he left for the day. When he did, although the room was still quite dim, he could see my eyes were open. Since I didn’t reply when he asked if I was okay, he turned on the bedside lamp and saw I was crying. By this time, I could tell his panic was beginning to match my own. He called in to work for both of us, telling them we wouldn’t make it.
Since I couldn’t answer him or move but I could blink, we used that as our way of communicating. I would blink once for yes and twice for no. After about forty-five minutes, when things didn’t seem to be changing on their own, he began gently working with my limbs to stretch and move them until, finally, I could move again on my own.
A trip to the doctor later that day, followed by a trip to the neurologist, found nothing that would cause this strange temporary quadriplegia. It was probably a virus, they told me.
Within a few days, I noticed morning stiffness, muscle aches (like when you get the flu), with accompanying weakness, painful tenderness to the touch (like when you press on a cramping muscle or a bad bruise), and heaviness (like I was wearing a lead suit). I found it difficult to muster sufficient strength to raise my arms long enough to even wash my hair without resting frequently.
I had already been struggling for years with frequent lower abdominal pain and extremely painful periods (from endometriosis, my gynecologist told me), uncomfortable intestinal issues with alternating bouts of diarrhea and constipation (irritable bowel syndrome, my gastroenterologist told me), jaw pain and cracking teeth (from TMJ, my dentist told me), frequently recurring headaches (tension headaches from stress, my doctor told me), painful knots in my neck and shoulder muscles (from chronic spinal misalignment after a major spill over the front of my tricycle onto my face when I was three, my chiropractor told me), repeated cycles of depression (from the childhood sexual abuse, my therapist told me), and always feeling tired from sleeping poorly. I often found it hard to go to sleep and I would repeatedly wake up during the night whenever I rolled over or heard a noise, which I assumed was just the habit of hyper-vigilance I had developed when I became a mother (my girls were 6 and 8 at the time).
Although they did rule out lupus, MS, and Lyme disease, results of multiple blood tests and repeated visits to the doctor were of no help in explaining why I was so fatigued and my muscles were stiff, achy, and weak. In fact, I just got the impression my doctor thought I was a hypochondriac.
It wasn’t until a coworker, who knew I hadn’t been feeling good for some time, noticed the similarity between what she’d been suffering in silence from for several years already and my own lack of well-being. She suggested I go see her doctor, who had diagnosed her with fibromyalgia, since he was at least familiar with this newly coined diagnosis. Apparently, the puzzling set of symptoms that had been plaguing me for several months now were also due to that little-known condition.
Fibromyalgia is one of the most common chronic pain conditions (affecting about 3-6% of adults worldwide) in women especially (80-90% of those with fibromyalgia are women) and is most often diagnosed in the 20-50 year old age group although prevalence increases with age. As the condition has become more widely studied and understood, more doctors are recognizing it as a legitimate condition that requires multiple avenues of treatment to experience any relief.
Communicating with your Doctor
It’s important to remember everyone feels and handles pain in different ways. These differences can stem from such things as your upbringing or life experiences, your personality type, your available support group (family, friends, community, etc), and even your level of spirituality.
For this reason, when you’re talking to your doctor, it’s best to try and describe the pain you’re experiencing in terms of location (both temples, right hip, lower abdomen, etc), type (dull ache, stabbing, burning, throbbing, etc) and intensity (mild, extremely uncomfortable, unbearable, etc).
There have been attempts to standardize the intensity of people’s pain with the use of one or more pain scales developed specifically for this purpose.
The Numeric Pain Rating Scale, with zero being no pain and 10 being the worst pain imaginable, is one tool to standardize the assessment of a person’s pain. Another one is the Wong-Baker Faces Pain Rating Scale. This one uses a series of face drawings that range from smiling (no pain) to a sad, crying face that represents the worst pain possible.
You need to let your doctor know what exactly your worst pain imaginable is, though, because that too can be different for each person. Some of you may quantify pain based on what you have personally felt, childbirth for instance, whereas others may have to quantify their worst pain based on something they can only imagine but may not have experienced, such as having a limb chopped off with a blunt axe.
Since each of us is different when it comes to handling pain, it’s best not to assume anything about another person’s pain or judge the way they handle it. For someone who never gets headaches, even a relatively mild headache may be debilitating.
Chronic pain sufferers, who are used to a certain level of pain on a fairly constant basis, may be able to cope at work and with daily activities even though our pain creeps up to a 6 or 7 on the pain scale (although, I’m sure it’s not as efficiently as when we’re pain free!), but others may be not be able to function at all when their pain reaches that level.
Chronic pain often impacts your emotional health negatively over time.
Fatigue inevitably results from being in constant pain. It wears on your body, leaving you tense and on edge, making it difficult to relax, let alone sleep.
Usually, the higher the pain rating, the greater the cognitive disturbances, too. It’s really hard to think clearly when you’re hurting because the pain consumes your thoughts and may lead to irritability, inability to focus, anxiety, and depression over the long term. These emotions, along with the fatigue, and any increase in stress levels, can interact in complex ways to decrease the body’s production of natural painkillers and amplify pain signals, making the pain feel worse. It can end up being a vicious cycle: when the pain is worse, the fatigue and negative emotions increase as well.
Although the pain may never go away completely, for those suffering from fibromyalgia, there is some comfort in knowing symptoms do tend to come and go. When you’re having a bad day or week or month, try to stay positive and remember that, eventually, something will help and you will have some good days ahead.
Educate yourself, and find a doctor who’s sympathetic, knowledgeable, and patient. Try not to get discouraged and don’t be afraid to try new things suggested by your doctor that have been known to help some people. You never know… they might help you too!
It is important to seek out and maintain a support group that you can trust so that when it does get bad you have those people to turn to. It can be just an understanding and compassionate spouse, family member(s), or friend(s), or it could be a support group that meets regularly at a local hospital or church, or members of the prayer team at your church, or even an online support group (although real people nearby is often the better option).
Always seek help from your doctor and/or your support group if you feel overwhelmed to the point of having suicidal thoughts.
I’m thankful Savella has been helping me for about five years now. By that I mean I’m not completely pain free — that is a rare day indeed — but pain levels are mostly around 1-2 on the numeric scale. Occasionally, I’ll have flare ups and bad days where the pain, either localized or generalized, is closer to 5-6, but comparatively speaking, it’s nothing like it used to be and for that I’m grateful.
Below are some trusted sites if you’re interested in gaining more insight into this complex syndrome.