How to Live with Fibromyalgia

Fibromyalgia is an auto-immune disease, often categorized with rheumatoid arthritis, psoriatic arthritis, lupus, and so on. "Auto immune" commonly means the medical world does not know the cause, cure, or treatment.

Fibromyalgia is a disease of the neuro-muscular-skeletal system. It may have originated in an earlier physical injury. It may be related to anxiety and depression. Or, it may be evidence of a virus or inherited gene. All this is ill-defined and unclear, except for the fact that those who suffer from fibromyalgia are also likely to suffer from lupus, rheumatoid arthritis, and spinal degeneration. A common factor appears to be a change in the way the brain perceives pain which, in turn, may be connected with low serotonin levels. Whew!

If you ask the fibromyalgia patients, all they know is they suffer serious chronic pain over most of their bodies throughout the day and night. Their pain radically affects their ability to work, play, and pursue any quality of life. In addition to the pain, they report symptoms that may include:

  • Difficulty getting and staying asleep
  • Waking with skeletal stiffness
  • Sensitivity to light, noise, and temperature
  • Frequent headaches and painful menstruation
  • Tingling or numbness in feet, hands, and extremities
  • Increasing difficulty with memory

Patients risk inattentive diagnosis or insensitive family support because these symptoms are, in general, commonplace and subjective. However, rheumatologists and neurologists are starting to accept the condition as valid and a serious threat to patients. They are searching for medications and medical cocktails to address the symptoms because of their debilitating effects.

One step towards concrete diagnosis is to test the presence of pain in the following key spots:

  • At the base of both sides of the back of the neck
  • Along the sides of both sides of the front of neck
  • At the soft pads on both kneecaps
  • At the inside each of the elbows
  • At the lower back just above each hip
  • At the lower area of the hips where they join the back of each thigh
  • Just below each shoulder on the back
  • And, on both sides of the chest

If pain is present to the doctor's touch on 11 of these areas, then the pain is considered wide-spread. But, to reduce the subjectivity of the pain, practitioners are trying a different scoring system. They ask the patient to score these pains on a scale from 0 to 3 (3 = most pervasive pain.) Then, the doctor factors in key symptoms, such as fatigue, memory loss, and waking un-refreshed. They add points for irritable bowel symptom, depression, and nausea. The doctor integrates the scores to direct a diagnosis of fibromyalgia. In short, doctors are not looking for a cure as much as they are looking for a diagnostic tool and treatment of symptoms.

Treatment of fibromyalgia combines pain and sleep medications, remedies for migraines and irritable bowel, and recommendations for diet, exercise, and group support.

  • Medications like Lyrica appear to sooth nerve traffic; non-steroidal anti-inflammatory drugs (NSAIDs) will reduce inflammation in joints.
  • Diets rich in fruits, vegetables, and anti-oxidants are linked to the concern that fibromyalgia appears frequently in obese patients.
  • Exercise, including yoga and stretching, water aerobics and biking, is recommended - with supervision and advice.
  • Group support is an interesting remedy in that it is recommended by all doctors handling such cases. It appears to be somewhat of an intellectual surrender to the emotional element in these cases of chronic pain and suffering. Live group therapy classes are available at churches and at some "Ys," but there are hundreds of group therapy centers online.

If "living" or "coping" with fibromyalgia is the only current recourse, look into the following:

  • Be a patient advocate. It is one thing to cultivate a close working relationship with your specialist, but press hard for solutions to your daily pain. Assuming you do not want to drug yourself up, let the doctor know that you are willing to do what it takes. If one course of medical action does not improve the quality of your life, insist on another.
  • Consider the night. Consider what you can do to improve your sleep. Create a habit of going to bed at the same time each night - without exception. Follow a ritual in which you bathe, read, listen to a little soothing music - whatever. Sleep in a cool comfortable room. Avoid alcohol and caffeine in any form after dinner. Talk to your doctor about referring you to sleep study specialist.
  • Get up and move: With your doctor's advice, pursue a plan of regular exercise. Alternate strength training with aerobics exercise like water aerobics to improve your range of motion or walking to pump your heart up. Start slowly and build on it. Do not overdo it, and chart your progress. Keep a journal and share it with your doctor.
  • Eat better: If irritable bowel is a shared symptom, address its needs. Irritable bowel syndrome, for example, tolerates a regular level of fiber from fruits and vegetables. It reacts badly to heavier roughage, spicy foods, and fat and dairy heavy foods. Reduce fats, fries, and fritos. Avoid processed meats, chemically enhanced foods, and aspartame.
  • Supplement your diet: With your doctor's advice - and only with his/her advice - supplement your diet with elements, such as magnesium, zinc, Vitamin B, melatonin, and so on. Also, make sure the supplements are not counter-indicated by your prescriptions.
  • Find a group: If fibromyalgia is a chronic challenge, it seems that you cannot manage it alone. Every medical response to this condition includes group support. Having made adjustments to pro-actively manage your problem, you will find it is not solved. Family, co-workers, and employers will lose patience with your loss of time or focus. The temptation to withdraw and to munch on your frustrations can be all-consuming. So, you need to reach out early on. Support groups will listen sensitively. The stories they share may put your problems in perspective. The members will teach you more about the condition and offer ideas on coping. They can connect you with symptom solutions or more attentive practitioners. Members will suggest ways to manage stress, including meditation, prayer, massage, and breathing exercises.
  • Learn to let it go! There are connective tissues in the human anatomy that connect nerves to muscle fibers. Because there is some positive response to anti-inflammatory drugs, rheumatologists have led the diagnosis efforts. The condition shows no give-away signs in blood screenings, and it has symptoms common to other diseases. So, doctors are left to observe a matrix of problems before they can diagnose fibromyalgia. It would appear that the cause is either genetic or environmental, e.g., another virus or stress. But, it is clear that this is a problem of the central nervous system where something has changed the system's perception of pain. Whether it is low serotonin or a problem with the thalamus gland, it appears that fibromyalgia reports small degrees of inflammation as significant pain.

If you adopt this relatively simple description, you can understand that this is not life-threatening but can definitely have a huge impact on your life. Having said that, perhaps you can focus on the management of it to make dealing with it easier.

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Comments 7 comments

nifwlseirff profile image

nifwlseirff 4 years ago from Villingen Schwenningen, Germany

Finding a doctor that is enthusiastic and treats finding the best, simple and healthiest treatment as a welcome challenge can be extremely tiring. But it is so important to be an advocate for your own health, and not give up! This disease is manageable, some days better than others.

The recent neurological findings have not reached far into the community of neurologists - I found that in two counties, the better specialists are still rheumatologists.

There is nothing worse than a multidisciplinary team not communicating and handing out contradictory advice! Find a team that communicates openly, and is interested in building the best health for your, rather than treating you like a pill receptacle.


ar.colton profile image

ar.colton 4 years ago from Vancouver, B.C.

Kathryn, recent research shows very clearly that FMS is NOT an auto-immune disease but a neurological one. It's very important to be clear on this difference. This disease needs to be handled by neurologists and patients are often best served by seeing them.


UrsulaRose 4 years ago

I happened to be hub-hopping and came across your Hub Article. I enjoyed reading it and will share it amongst the various FM groups that I am associated with.

Fibromyalgia is totally manageable when the person diagnosed with it is finally in the right 'head space' to be able to manage it (and not necessarily by popping chemical-based medications).


Hello, hello, profile image

Hello, hello, 5 years ago from London, UK

Thank you this very explicit article. These details will help a lot of people.


Kathryn Vercillo profile image

Kathryn Vercillo 5 years ago from San Francisco Author

Thanks @penlady! Appreciate the feedback.


penlady profile image

penlady 5 years ago from Sacramento, CA

These aches and pains sound so familiar. Great hub.


slmorgan profile image

slmorgan 5 years ago from San Francisco

It is nice to know that there are some forms of effective pain management for this chronic condition.

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