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When Your Doctor Says Fibromyalgia is a “No Pain” Disease

Published February 12, 2018    

A question posted to a Facebook group asked, “How many of you guys go to a pain doctor because you have legit pain, and still find no relief?” Sandra Kelly, who has Lupus and Fibromyalgia, responded, yes.

“I'm sitting here doing a pain pill count and I'm stunned. My pain doctor said since I was diagnosed with fibromyalgia she had to completely cut out my pain meds,” Kelly recalls. “I can't believe that it is considered a no pain disease. Last time I checked fibromyalgia was a condition of widespread chronic pain so how can this be a no pain disease?”

Others who agreed or shared the experiences of Kelly in the same degenerative disc disease group chimed in:

“It makes me so mad that they do not realize how much pain we suffer from,” said Brianna Crowly, who also lives with fibromyalgia.

 “You need a new doctor, just the connective tissue disease is enough to warrant pain meds,”  said David Sopter, who was diagnosed with herniated discs in his back and neck.

 “If I were you I'd have a heart to heart with your primary physician —not your pain doctor,” said Leah Foller, a degenerative disc patient

The medical community at large agrees. Two discussions from the American College of Rheumatology (ACR)/Association of Rheumatology Health Professionals (ARHP) Annual Meeting, in Washington, D.C., offered talks centered on fibromyalgia, its treatment options, the value of patients staying active, and general patient care. In a rheumatologist's discussion, Dr. Daniel J. Clauw, who is also a professor of anesthesiology and medicine as well as the director of the Chronic Pain and Fatigue Research Center at the University of Michigan, spoke about the nature of pain, how physicians can support patients. He cited three pain categories:

  1. Peripheral pain: A result of damage to your peripheral nerves, which often causes weakness, numbness, and pain in your hands and feet. It can also affect other areas of your body. Your peripheral nervous system sends information from your brain and spinal cord (central nervous system) to the rest of your body.
  2. Peripheral neuropathy: Weakness, numbness, and pain from nerve damage, usually in the hands and feet. A common cause of peripheral neuropathy is diabetes, but it can also result from injuries, infections, and exposure to toxins.
  3. Centralized pain: A term used to describe pain initiated or caused by a primary lesion or dysfunction in the central nervous system and can be included under the broad term of “neuropathic pain.”

“Fibromyalgia is the poster child for this third category of pain,” Clauw says, according to a news release.

Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson's disease.

Unfortunately, controversy surrounds the medical community concerning how to specifically label and categorize centralized pain. But Clauw says that clinicians should be focused on evaluating patients individually instead of categorizing their disease state.

“You find evidence of peripheral pain, you treat that,” Clauw reminds. “If you find evidence of neuropathic pain, you treat that. Then find the evidence of centralized pain and treat that.”

The Thinking

“Instead of thinking of it as one disease, think about the factors that impact individual patients—sleep disorder, fatigue, various kinds of pain, depression, trouble concentrating,” he adds. “It is also important to remember that fibromyalgia may be the tip of the iceberg. These symptoms may indicate something else.”

Fibromyalgia patient trying to find sleep while outside.CaptionKelly's husband, who is also a fibromyalgia patient, can't sleep because of his chronic pain.
Rebecca Camper, who replied to Kelly's post. agrees.

“Hi, Sandra. I was diagnosed with fibromyalgia and cut off pain meds too. They say fibro is caused by false brain signals and our pain is false,” Camper writes. “They put me on Lyrica and I had a bad experience so I'm left to figure this out alone.”

Camper takes a low dose of opiates in addition to cannabis and easy-chronic pain yoga. “It's like I want more pain meds while at the same time, I want to heal naturally.”

These days it's pretty much a catch 22. Doctors either over-prescribe  painkillers or in this case, copulated with the new regulations, some may be apprehensive too. For Kelly, she's taking things into her own hands, just like Camper and so many of you.

“I go tomorrow to a new rheumatologist in Charleston tomorrow,” Kelly expresses. “I just got another positive ANA (Antinuclear antibodies positive, which means autoantibodies are present. By itself, a positive ANA test does not indicate the presence of an autoimmune disease or the need for therapy), and RVP (Respiratory Viral Panel and a positive result is consistent with an infection from a virus) detected. This will be the 5th Positive on those(sic).”

When it comes to fibromyalgia, it's normal to also have two or more co-existing chronic pain conditions, which proves Clauw's theory about how there are other factors that impact your pain and quality of life.

The Action

In the second discussion, a doctor from the Cleveland Clinic, Carmen E. Gota, MD, indicated the necessity of exercise and personalized patient care for fibromyalgia. She also stressed the importance of non-pharmacologic interventions.

Those non-pharmacologic interventions include:

  1. Cognitive behavioral: A short-term, goal-oriented psychotherapy treatment that takes a hands-on, practical approach to problem-solving. Its goal is to change patterns of thinking or behavior that are behind people's difficulties, and so change the way they feel.
  2. Multicomponent therapies: A psychotherapeutic intervention based on teaching patients to recognize, challenge, and consciously correct their maladaptive thoughts and behaviors.
  3. Meditation: A therapy that allows you to gain control over ailments that have long had control over you and the quality of your life. What meditation does that pain medications can’t do is address in a real and practical way the psychological and social aspects of pain.
  4. Acupuncture: A technique in which practitioners stimulate specific points on the body—most often by inserting thin needles through the skin.
  5. Hydrotherapy: A low-impact activity that not only trains but strengthens your weakened muscles and assists your spine for increased support allowing you to be more limber than when on land.
  6. Physical therapy: A treatment of disease, injury, or deformity by physical methods such as massage, heat treatment, and exercise rather than by drugs or surgery.

Gota says, “In terms of the guidelines, the only one we had a strong recommendation for is exercise [because it] has been shown to have a consistent impact on a number of domains.”

Luckily for Kelly, during her second opinion, her new rheumatologist agrees with Gota.

“Well, I just got back from the rheumatologist appt. She is running more blood work. So we're waiting to get the results,” Kelly explains. “She says that she needs more proof of what I have before she treats me. I like that she's not jumping the gun.”

Kelly's doctor did reiterate the importance of staying active anyway possible, even if it hurts at first. Like anything else, we have to diligently strive to keep it moving. Whether that's a tailored program with a physical therapist, a nice walk through the neighborhood or an at-home yoga session.

Fibromyalgia patient performing yoga.Caption: Kelly breaks out the yoga mat and is surprised at how great she feels.

Fibromyalgia is indeed a “yes” pain disease but your specific treatment options will differ from patient to patient, which is where the deadlock comes in.

Gota highlighted the significance of having a personally tailored approach for your fibromyalgia, in addition to the necessity for each doctor to identify unmodifiable and modifiable factors.

“It is important to know your patient because that will determine how you are going to treat your patient,” she concludes. “Establish a network of collaborators who will help treat your patient, including primary care providers, physical therapists, psychologists or psychiatrists, and sleep medicine experts.”

And with proper planning and execution, this is possible. If your current doctor tells you something you know isn't true, find another one. It's always worth it to get a second opinion. Just look at Kelly's almost happy ending.

Couple with Fibromyalgia outdoors, enjoying life.Caption: The hopeful couple poses, celebrating Kelly's victory. There's always another way or a second opinion waiting for you.

“I went to the doctor yesterday. She seemed like she knows what she is doing. I was impressed that I actually had a doctor and not a nurse practitioner,” Kelly recounts.

The doctor started her on vitamin B12 shots because her vitamin D and B12 are extremely low. At this point, she's prescribed her original dose, but no extra meds until she can diagnose Kelly.

“Sounds reasonable to me,” Kelly finishes. “What do you guys all think?”

Last change: January 24, 2019