It dumbfounds me how uninformed some health-care providers are about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS). Recently on Twitter, a friend of mine mentioned having a lot of post-physical therapy pain and said her therapist told her she needed pain in order to make progress.
For a lot of ailments and injuries, that's true. For us, however, the last thing we should do is push ourselves to the point of pain. Same goes for exhaustion. The reason for that difference is central sensitization, which is generally thought to be an important part of FMS and ME/CFS.
Sensitization is a gradual change in how your immune system reacts to a particular substance. The result of sensitization is an allergy. In central sensitization, the entire central nervous system becomes sensitized to certain stimuli. Those stimuli become our symptom triggers, and for FMS and many people with ME/CFS, one of the biggest triggers is pain. The physiological stress of exertion is another biggie. Still, a lot of physical therapists cling to the belief that they need to push us to the point of pain and exhaustion.
In a 2008 study of manual therapy (chiropractic, physical or massage therapy), researchers came to some important conclusions:
- In people with central sensitization, relatively minor injuries can sustain the process -- they actually keep us in hyper-sensitivity mode.
- Manual therapists ignoring sensitization and the process of maintaining it can cause more harm than good by triggering or sustaining central sensitization.
Here's an article with more information on this study as well as questions to ask prospective manual therapists:
If you have a therapist who doesn't understand these principles, print it out and take it to them. The study is cited at the bottom so they can read the entire thing. I know it can be uncomfortable when you have to educate the so-called expert -- I had to teach my massage therapist about central sensitization and mechanical allodynia -- but if we want these folks to help us get better instead of worse, sometimes we have to do it.
Have you had a bad experience with a manual therapist? What was the result? Have you had good experiences educating a therapist about your condition? Leave your comment below!
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Thank you for teaching me.
When I was a practicing chiropractor, it never ceased to amaze me how many fibromyaliga patients would tell me about their therapists “no pain, no gain” approach. Once more practitioners and therapists are properly educated about fibromyalgia, we will be able to erase the ignorance surrounding it! That will be a beautiful day.
Hi Adrienne, I have been reading your blog with interest and wanted to let you know that we have been getting excellent results using whole body massage technology with fibromyalgia sufferers. Our device, TheraVibe, delivers a gentle, no-touch, deep tissue massage throughout the body while standing on the device, fully clothed. TheraVibe should not be confused with some other vibration plates like PowerPlate or Fitvibe. TheraVibe simply moves gently up and down and does not cause the user any discomfort. You can read more about this technology at
My Physical Therapist is my goddess. She uses Myofascial and Craniosacral techniques to free and realign my body. She reviewed my American Arthritis
Foundation pool exercise program to be sure I was exercising using gentle stretch and range of motion. I use her gym for resistance when I feel well and rubber bands or just gentle stretches when I feel I can. Acupuncture and massage work well too. It means so much to have such sensitive and caring help.
Some of the therapists I’ve met are so hard core they threw the paper in the trash, stating, “We’ve seen this. Our research, which you should also have read, states our approach is the best.” Me: “It’s not working; you’re making the pain worse. We need to back off, ramp up more gradually.” Them: “You’re obese, proof that you are lazy. If you pushed yourself more, you wouldn’t be obese & you wouldn’t have fibromyalgia. Besides, you have to know there is a lot of research to support that fibromyalgia isn’t real.” Me: “Go to the CDC site & type in fibromyalgia & CFS, you’ll see disease criteria for both. It’s real. Check the research published on Medscape.com.” Them: “We don’t have time to look at all that research.” Me: “Then why do you expect ME to have time? I’m caregiving my mother, doing a job that used to be shared among 6 people, alone; I work full time & I’ve had FM for 20 yr., CFS for 10, what makes you think I have that much free time, or that I’m lazy? YOU likely don’t do that much & you’re not constantly in pain & achingly tired – & you do one person’s job.” Them: “If youi’re really doing all that, then you should be able to handle this. If you can’t handle this, then you’re lying about how much you do now.” Me: “You really don’t get the idea of overloading someone causing problems, do you?” Them: “We’re going to call your doctor & tell him you’re noncompliant, he’ll set you straight.” Me: “Go ahead, here’s his phone number.” I left. Later that day, I get a call from my MD, who tells me to stop PT & OT, just work on what they wanted me to do on a schedule I can manage, because he knows my situation. I later find out he put in a complaint about how I was treated. I got a reluctant email apology about the “misunderstanding.” Some “misunderstanding!”
Some people aren’t teachable, trust me.