Fibromyalgia sufferers generally exhibit symptoms that are invisible to family, friends, and all too often, even to their doctors. Living in agony with unrelenting deep muscle aches, joints too sore to touch, stiffness to the point of feeling welded together, and total exhaustion twenty four hours a day, is pure hell. This “invisible hell” can bring on varying degrees of depression and feelings of hopelessness and helplessness. Normal physical appearance can be deceiving and believe me, I know. I have suffered from this affliction for years, including the chronic fatigue, irritable bowel syndrome, and migraine headache that so often accompanies Fibromyalgia.

Living day in and day out with constant pain and incredible fatigue has forced me to develop some effective coping mechanisms. I have learned what helps and what hurts through trial and error,  reading and research, and endless consultations with physicians. These are the tips I want to share with you.

The most important thing you can do to improve your quality of life is to sleep. This means sleep soundly and sleep uninterrupted each and every night. You must do whatever it takes to accomplish this.  Using sleep medications, moving to another room that is darker or quieter, just find out what it takes for you and do it . Fibromyalgia sufferers must recharge and recoup the tremendous amount of energy used daily just living with this disease. This takes much more sleep than a well person, and is the number one key to storing enough energy just to get through another day.                                                                                                                                                                                                                                                                                              The next point involves visiting a reputable Rheumatologist. This is the medical specialist who treats both Fibromyalgia and Chronic Fatigue Syndrome . Different doctors use various drug regimens for treatment. The key is to keep experimenting with different dosages of these medications until you find what works for you. Each person is different in their reaction and response to these drugs and dosages must be titrated, or adjusted individually. The FDA approved drugs Lyrica and Cymbalta are both very effective with few serious side effects. Bentyl is very helpful with the cramping distress of irritable bowel. There are many migraine drugs available, and Baclofen is a good muscle relaxer. I am speaking here of prescription drugs, not over the counter medications.Do not self medicate. Use what your doctor orders and give them a fair try. Work with your doctor and keep adjusting your dosage(under his strict guidance) until you find the amount that helps.                                                                                                                                                                                                                                                                                                                  Deep tissue massage has changed my life. It has made my worst days bearable, and the days following massage so much better. Again, you must experiment to find the right massage therapist. Massage of the skin, and light relaxing strokes are not what is effective. A therapist who is well trained in Fibromyalgia patients works the areas that give the most discomfort, and deeply, but not painfully, release the knots and gnarls that plague us.  When you call for a first time appointment always ask if the therapist is familiar with Fibromyalgia. If not, you are wasting your time.

Many medical professionals advocate rigorous exercise. How do you exercise when just walking to the next room exhausts you and amplifies that deep muscle ache?  It is my opinion these people don’t have a clue about our invisible disease. Forcing yourself to do rigorous exercise may actually make your symptoms worse. It certainly does me. The things I can do are common sense, basic movements, on the days I can actually tolerate it. Stretching is number one. Whole body stretching lengthens the muscles, loosens the constricted tendons and ligaments, improves blood circulation, and just plain old feels good. Walking is the other thing we can do. Walk as fast as you can, or as slow as you need to. The same approach applies to distance, too. Use your head, and walk as fast and as far and as often as you can individually tolerate. Our bodies have to move to be healthy. Unused muscles weaken and atropy rather quickly.  Design your exercise routine using good old common sense and forget what other people think or say. Don’t push yourself.
                                                                                                                                                                         The last thing I want to mention is application of cold and heat. The majority of sufferers agree that colder, damper climates make us worse. My body stiffens up and aches more noticeably in winter months, and the associated depression seems to deepen. Warm, sunny climates are a salve not only to the body, but to the spirit as well. You would think this would lead us to the conclusion that applications of heat would suit us all. That is just not the case. Many people benefit from hot, moist heat applications and baths, and many will argue these treatments make them worse.  Some people claim ice packs and cold compresses applied to aching joints and muscles bring relief. Try them out for yourself. I personally have to have  heat applied to my muscles, and an ice pack to a migraine headache.One thing most agree on is the application of heat to an abdomen plagued with irritability and distress. I personally swear by this treatment.

Living with this chronic disease that afflicts so many women, and increasing numbers of men, requires a personal dedication to fight the good fight, adjust your lifestyle and routines, and speak out to be heard. Join support groups, clinical trials , and research groups to shed light and gain insight into this debilitating condition. One day a cure will be found, but until then let’s ban together and support each other through another day of “invisible hell”.

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This entry was posted on Thursday, September 18th, 2008 at 3:27 am.