An Illness With Many Effects

Too many people have fibromyalgia, perhaps up to 4% of Americans, but nobody knows why.  Much controversy has followed work by Zahnle et al. who argued studies linking fibromyalgia with viruses like XMRV actually found nothing but artifacts, denying their results altogether. This has increased the public sense of murkiness about the disease.  Now recent work from the University of Utah shows just how difficult fibromyalgia can be to live with, particularly when people with it are overweight (which, like the overall US population, immobilized fibromyalgia patients tend to be.)   Problems with weight, sleep, and pain, all reinforce each other, making it even harder for people with fibromyalgia  to function.

Fortunately progress can be made – especially when people have a chance to move a little and lose weight.

Here are some of the findings of the Utah study which appeared in, aptly, the Journal of Pain:

215 mostly female participants

Half obese, about 30% more overweight

Illness average of 12.7 years, average age 45

Findings:

The more overweight, the more their pain

The more overweight, the worse their sleep

The worse their sleep, the worse the pain

As people with the illness tell you, the more things that gets piled on, the worse you feel.

Helping Yourself

Some argue inflammation is the common thread interlinking the different symptoms.  The more one weighs, the higher the inflammatory load, as measured with different kinds of cytokines. The more one weighs, the worse one’s sleep, as Alex Vgontzas has shown at Penn State.  Obesity increases overall inflammatory load even when sleep disorders are not present, yet people with fibromyalgia have a lot more sleep apnea and leg kicks than the rest of the population.

So what can people do to help themselves?

1. Make sure you don’t have a primary sleep disorder. As a sleep doc, I often find people with fibromyalgia demonstrating much higher numbers of apneas, leg kicks, and “unexplained” arousals than I would otherwise have expected from their clinical symptoms. Fibromyalgia is a systemic disease where the immune system and the brain seem to be using different languages when they talk to each other.  It affects many parts of rest-regeneration required to keep people healthy, and sleep particularly takes a beating.
2. Try to fix body clocks. Many people with fibromyalgia have very erratic sleep/wake cycles, which makes it harder for normal physiologic processes to work .  You can think of it this way – if you throw off an engine’s timer, it may not function at all.  Time rules life.  If one’s patterns can become more regular, it can help diminish symptoms over time.
3. Stretch. Simple yoga and Tai Chi may not quickly produce greater weight control, but need not cause the physical exhaustion and worsened symptoms more prolonged exercise often creates.
4. Exercise when you can, wherever you can, for short bouts – even half a minute counts.  Usually people with fibromyalgia will tell you there’s some part of the day or week when they can physically do more.  As weight increases so do inflammatory cytokines. You want to decrease overall inflammation as much as possible, so little bits of exercise, done as regularly as possible, can make things better.  Standing takes 25% more energy than sitting.  Sunlight may modify immunity in useful ways, so moving outside is often a plus.
5. Learn to actively rest. There will be many times in fibromyalgia when energy disappears, and the battery feels absolutely dead.  Active rest techniques, particularly social and spiritual ones, can aid revival at such times.
6. Do what you can. Fibromyalgia is inherently unpredictable.  Flexibility is necessary, as the body will respond in many strange ways.
7. Get a lot of social support. This often means contacting  other fibromyalgia sufferers, as much of the public has a tough time identifying with the symptoms of the illness.

Bottom Line

It’s hard treating an illness where the cause is unknown, the course unpredictable, and the treatments partial and grudging in their effectiveness.

That means people have to do a lot for themselves.  Remember – the body regenerates itself constantly and quickly as a way of staying alive.  Though fibromyalgia changes that regenerative function, one can still adaptively pursue activities that improve health.  It’s necessary to use your body the way it’s built at all times – even more when you’re ill.
Rest, sleep, Sarasota Sleep Doctor, well-being, regeneration, longevity, body clocks, insomnia, sleep disorders, the rest doctor, matthew edlund, the power of rest, the body clock, psychology today, huffington post, redbook, longboat key news