Teaching Patients and Doctors about Fibromyalgia

Teaching Patients and Doctors about Fibromyalgia

Ginevra Liptan, MD

Ginevra Liptan, MD

If you have fibromyalgia, Dr. Ginevra Liptan feels your pain, literally.

Dr. Liptan started experiencing muscle pain and profound fatigue while she was in medical school. And she couldn’t get any answers from doctors who treated her.

That’s a big reason why she has devoted her career to studying and treating fibromyalgia. She founded the first private practice in the U.S. dedicated exclusively to fibromyalgia in Lake Oswego, Oregon—the Frida Center for Fibromyalgia.

Fibromyalgia affects between 6-to-8 million Americans every year, and most are believed to be women. Dr. Liptan believes that while diagnosis of fibromyalgia is better than it used to be, it is still widely under diagnosed in men and adolescents because doctors don’t think about it part of the evaluation for those populations

In a recent interview with the National Pain Report, the Oregon doctor stressed that there is not a “one size fits all” way to treat fibromyalgia.

“More than any illness, fibromyalgia treatment must be individualized,” she said.

There are certain areas that every fibromyalgia patient benefits from treating, especially improving sleep quality, but there are many different routes to achieve that.

So, a fibromyalgia patient will ask, what works?

“My treatment approach is to systematically address the negative efforts on the body of a chronic hyperactive stress response,” she said.

She looks to treat any sleep disorders interfering with sleep quality and will add medications to restore deep sleep.

“For muscle pain and tightness, I recommend myofascial release, a specialized manual therapy,” Dr. Liptan explained. “This is the most effective pain reducer in fibromyalgia that I have found and was one of the keys to my recovering enough to get back to medical school.”

Dr. Liptan said that improving sleep quality and addressing muscle pain help reduce fatigue and pain. After that she goes after the remaining symptoms of pain, fatigue or fibrofog with target medications and therapies.

There is much for the medical profession to learn about fibromyalgia, which is why it is one of the audiences Dr. Liptan hopes to reach in her new book which will be out in 2016.

Dr. Liptan said she had some advice for patients struggling to get a diagnosis when they meet with their physician.

“Be persistent and bring as much clear information about your symptoms to the doctor as you can,” she said. “If your primary care physicians can’t give you a diagnosis, request a referral to a specialist, usually a rheumatologist or a pain doctor.”

Even when a specialist makes the diagnosis, your primary care doctor will most likely perform the ongoing care. That’s when time becomes an issue.

“The average PCP sees 20 patients a day for 15 minutes each,” she said. “Ask if there are longer visits available.”

The patients play a big role in their own treatment, she says, which is why it is important to bring your doctor information about how you’ve been doing.

“Rate your daily pain, fatigue and fibrofog on a scale of 1-10 and record it on a calendar, journal or even on your phone,” she suggests. “Doctors love data.”

Also, let the doctor know which treatments are helping you, or not.

“Tracking your symptoms will help you, and your doctor, more quickly determine what works for you.”

What does she tell her fellow physicians about fibromyalgia?

It’s pretty straight forward:

  1. Fibromyalgia is real. More than 6000 studies say so!
  2. Fibromyalgia can happen to anyone (Yes, even doctors)
  3. There is no cure but it is definitely treatable, although you have to go further than 3 FDA approved meds to get maximum improvement.

Dr. Liptan’s new book, her second is entitled: The FibroManual: A Complete Treatment Guide to Fibromyalgia for You…and Your Doctor. It will be released by Random House in May 2016. It’s available for pre-order on Amazon.com now.

Her first book released in 2011, Figuring Out Fibromyalgia, is available here.

Dr. Liptan has agreed to occasionally answer National Pain Report reader questions about fibromyalgia. If you have any question, email them to us Editor@nationalpainreport.com

For a complete transcript of our interview with Dr. Liptan, click here.

Authored by: Ed Coghlan

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Hi gals, there are two main reasons we prescribe antidepressants so often for fibromyalgia. One reason is that the brain chemicals that affect our mood can also modulate pain levels. So even if you aren’t depressed a very low dose of an antidepressant can lower pain levels. The other reason is that certain antidepressants have been shown to correct some of the sleep disturbances associated with fibromyalgia. One of my rules of thumb in treating fibro is to always start with sleep – if you aren’t getting refreshing sleep there’s no hope of reducing fibro symptoms. That has been well documented. There are many other off-label treatments that can help fibromyalgia symptoms: low dose naltrexone, muscle relaxers, magnesium maleate, tramadol, microcurrent/laser therapies, acupuncture, and a long list of others. I hope this is helpful!

I totally understand and agree with Misti! No helpful treatment. I too have taken lyrica, Savella, myloxicam, gabapentin and can’t remember couple others. Only to have side effects of numbness, high blood pressure, severe headaches, vertigo, nausea, abdominal pain. The Fibro was not helped and then it took weeks to get over the problems the meds caused. I recently changed to a new doctor. As soon as my insurance accept a PA for a new prescription of Fitzima, I will give it a try. I too would like to know why antidepressants are recommended? We are not depressed. We are in severe pain!

I was diagnosed in the mid 90’s. I first was told by a medical doc that they thought I had MS. I then went to a neurologist and had MRI, nerve test and it was ruled out I had MS. I then was referred to a Rheumatologist who diagnosed me. I still see him to this day. Back then there was hardly any info to find on it and medical docs thought it something you made up in your head. One still in my hometown that thinks its all in your head. I had so much pain, could not sleep, involuntary jerking of the muscles and alot more ailments. He worked with me and we tried different meds to help the pain. I take everyday 50 mlg of zoloft, at night, 50 mlg of trazadone. if i have a bad spell with it, normally in cold weather or when drastic weather changes happen, i will take a muscle relaxer to help with the pain. I also go to a physical therapist every 5 to 6 weeks for what i call a “tune up”. She does manual manipulation of the spine since i have neck, shoulder and back pain. She has helped me so much with the pain. In the summer, warm weather I can almost forget i have it. When the pain really acts up, i take torodal injections. I took ad tried the oral torodal which did not work for me, however the injections really do help me. So my doc writes me out a a prescription for the injectable meds and if i need it with a flare up, my son gives me the shots. I’m 63. I hope this info helps someone.

I have tried multiple meds for fibro. The side effects were numerous and horrible. And they did not work. Gabapentin, Lyrica, melixocam, methocabomol, to name a few. Every doctor I go to wants to put me on an antidepressant. HELL NO!!!. I will never take an antidepressant. And I intend to stay drug free. I would rather deal with the fibro symptoms than take pharmaceuticals.

I just want to make it clear I did go to ER when I tried the final Fibro med savalla headache for 8 days straight and blood pressure was close to stroke level.
Lyrica made my face,hands and feet swell,neurontin makes me nuts to the point of manic..

I’m commenting here because I want to hear any responses to Misti’s question regarding the 3 medications tried. (And I have marked below that I want to be notified of comments on this post. Commenting seems to be the only way I can get the notifications, that or I’m having a fibrofog moment and its as simple as only checking the box.)

I have tried the 3 drugs for Fibro and can not take any of them. what options are there for someone who can not take the main stream fibro meds are we suppose to suffer in pain without treatment ?
I saw a specialist Fibro doctor only specialist in my area and she just recommends losing weight , exercise , and a healthy diet , then pain is suppose to magically go away,fatigue will go away.
So in other words there is NO treatment if you have fibro.
I just had a level 3 cervical (neck) fusion surgery that exacerbated Fibro symptoms,