This post is Part 1, and includes my notes from her talk and handouts, plus insights of my own. Use this link to read Part 2, Answers to Seven Tough Questions on Fibromyalgia Pain.
About Dr. Ginevra Liptan
Ginevra Liptan, MD is a graduate of Tufts University School of Medicine and is board certified in internal medicine. She is an associate professor at Oregon Health and Science University, her articles about fibromyalgia have been published in peer-reviewed medical journals, and she is the recipient of a Gerlinger Foundation Research Award.
Dr. Liptan has also written Figuring Out Fibromyalgia: Current Science and the Most Effective Treatments. I think her book is a must-read for everyone who has fibromyalgia or knows someone with fibromyalgia. You can read my review of her book here.
Dr. Liptan was diagnosed with fibromyalgia while she was still in medical school. She has extensive clinical, personal, and research experience with this illness. She has a compassionate and knowledgeable approach utilizing cutting-edge treatments, effective alternative therapies, and prescription medications.
There is nothing like seeing a doctor who actually gets it when you talk about your illness; this brings fibromyalgia patients from all over the country to see her at her clinic, The Frida Center for Fibromyalgia.
Dr. Liptan on Fibromyalgia Pain Management
Dr. Liptan began by giving us an overview of how the pain cycle works, why fibromyalgia is so hard to treat, and ideas for treating each part of the pain cycle.
After a short break, Dr. Liptan answered questions from the group that were submitted ahead of time and asked in person. I’ve put the questions portion in a second blog post that you can find here.
How the Pain Cycle Works
There are three key areas within the pain cycle: your brain, your spinal cord, and everything else — we’ll group that “everything else” together and call it soft-tissue pain.
When something hurts, like your hand, it sends a signal to your spinal cord, which processes that signal as pain. Then, your spinal cord sends the signal on up to your brain, which processes the signal again.
Sometimes, your spinal cord might “turn up” the pain signal because it thinks the signal isn’t getting through to your brain. Or, your brain might say, “Hey, can you turn that up? I can’t hear you!” Your brain might also focus in on a particular signal to make it stand out.
Regardless, the result is that the pain signal ends up getting louder. This, of course, means that you hurt more than you should.
One thing that has been proven in study after study is that those of us with fibromyalgia just do not process pain correctly.
That means that the next time someone tells you it’s all in your head, you tell them, “That’s right! It is! My brain doesn’t process pain correctly!”
Why Fibromyalgia Pain is Difficult to Treat
One big reason that fibromyalgia is hard to treat is that doctors aren’t even sure exactly where the pain is coming from. One day you hurt everywhere; the next day you may not hurt at all. That makes it really tricky to pin down!
A second reason is that your central nervous system becomes hypersensitive with fibromyalgia. This is the part where your brain and spinal column are turning up the volume on those pain signals — as if they weren’t loud enough already, right?
Dr. Liptan said, “There is still a lot we don’t understand about what generates the muscle pain in fibromyalgia. There is some evidence that the pain is from the fascia, the connective tissue around the muscle. So in order to effectively treat fibromyalgia pain, we have to address both the painful muscle tissue and the hypersensitive nervous system.”
Treatments for Soft-Tissue Pain in Fibromyalgia
Fibromyalgia treatments that address the soft-tissue pain at the source would include things such as:
- Myofascial Release (MFR): This is a manual therapy similar to massage that addresses the fascia. Think of your fascia like a layer of plastic wrap covering your body, each bundle of muscles, and muscle fibers. This wrapping can get “bunched up” and that can cause pain. MFR is the process of straightening out your wrapping, where it’s bunched up and stuck. Recent studies have found MFR to be helpful in reducing fibromyalgia pain, if done correctly by a knowledgeable practitioner.
- Trigger point injections: Injections typically last 1-2 weeks. You can read more about trigger points and other ways to treat them in this blog article.
- Stretching and gentle exercise, such as Tai Chi and Yin Yoga: If you’re in the Portland, Oregon, area, check out Dr. Liptan’s clinic, The Frida Center for Fibromyalgia. They also offer a retreat that anyone is welcome to attend, whether you are a patient of Dr. Liptan’s or not. (I’m even one of the instructors!)
- Topical NSAIDs applied directly to the muscle: Voltaren gel is one of these. Here in the US, it’s available by prescription only. Other topical pain relievers may be custom compounded by prescription.
- Reduce any other pain generators as much as possible: For example, if you have a bad knee, get it checked out through physical therapy, or perhaps even have knee surgery to eliminate that source of pain.
- Acupuncture: Dr. Liptan placed acupuncture in this category because it works wonders at reducing pain in the soft tissue. I also put acupuncture in the Brain category for reasons you’ll see below. I have acupuncture once a week to help with my fibromyalgia, IBS, migraines, neck pain, etc.
Turn Down The Volume!
Dr. Liptan had us think of pain signals as a loud radio. We need ways to turn down the volume of the pain signals — in our spinal cord and in our brain.
Treatments to Calm the Hypersensitive Spinal Cord in Fibromyalgia
Using Dr. Liptan’s radio analogy, these fibromyalgia treatments calming the spinal cord would be like turning down the volume on the radio.
Decrease the release of pain neurotransmitters, like substance P (yes, P for Pain!), by blocking the calcium or sodium channels with medications like Lyrica (pregabalin) and Neurontin (gabapentin).
Block NMDA receptors on spinal cord cells with:
- Medications: Namenda (memantidine), Amantadine, low dose methadone, Tricyclic antidepressants (amitriptyline, nortriptyline)
- Supplements: taurine, L-theanine, magnesium
Reduce release of inflammatory substances in the cells of the spinal cord:
- Low dose naltrexone (LDN): I use this and LOVE it. It does good things like boost your immune system and endorphins (your natural painkillers). The only down-side is that you can’t take any opiates within 8 hours of taking LDN, which includes tramadol, in this case. However, you take LDN at night, so this isn’t an issue for many people; you can still take your tramadol during the day. For more information on LDN, check out the LDN Research Trust site. I also ran across this article on Medscape a week or so after Dr. Liptan spoke. It is a report from the American Academy of Pain Medicine’s 28th Annual Meeting on a study that confirms that LDN “significantly reduces daily pain in patients with fibromyalgia.”
- THC derivatives, such as Marinol and nabilone: Yes, that’s THC, as in marijuana. These two drugs have the benefits that marijuana has, while being legal. =) They aren’t covered by insurance, however, and can be quite expensive. (Dr. Liptan estimated “expensive” to be $10 per pill.)
- Supplements that help protect nerve cells from damage: Such as turmeric, omega-3 fatty acids, pterostilbene, and alpha lipoic acid (ALAs).
Treatments to Help Your Brain Process Pain Correctly
Using Dr. Liptan’s radio analogy, these fibromyalgia treatments helping the brain would be like putting in ear plugs to reduce noise.
Increasing brain levels of serotonin and norepinephrine:
- Medications: Savella, Cymbalta, Effexor, tramadol
- Supplements: Dr. Liptan didn’t talk about this, but my husband I have both gone through neurotransmitter testing through NeuroScience. Even though I was taking both Cymbalta and tramadol, two drugs that are supposed to help your serotonin and norepinephrine, my levels of these two neurotransmitters came back dirt low! After a year of supplementing with 5-HTP and DL-Phenalynine, precursors for serotonin and norepinephrine, I retested my neurotransmitters. My levels were still low, but much, much better. I highly recommend anyone who has fibromyalgia, depression, or anxiety get their neurotransmitters tested. Knowing exactly where you stand, and being treated accurately — just like if you were deficient in Vitamin D or Iron — can be a life-changing experience!
Increasing dopamine levels in the brain: Mild stimulants, such as phentermine, or medications used to treat Restless Leg Syndrome such as Requip or Mirapax.
- This is another neurotransmitter that is tested as part of the NeuroScience panel my husband and I took. While my dopamine was fine, his was extremely low. He takes a supplement called Balance D. Although he doesn’t deal with chronic pain, he did struggle with chocolate cravings – like wanting to eat a big bag of M&M’s every night! As soon as he started taking the Balance D, he stopped craving the chocolate!
Acupuncture: Studies have shown that acupuncture is a very effective treatment for fibromyalgia pain. As I said before, I get acupuncture every week to keep me functional. A 2009 study in Michigan that I recently ran across showed that acupuncture actually helps your brain’s ability to process pain. It also helps your brain’s ability to utilize pain medication, making your medication more effective and allowing you to take less of it.
Dr. Liptan also talked about how we can train our brains to tune out pain signals, or at least turn them down. This would include things like:
- Breathing exercises
- Relaxation techniques
Answers to Seven Tough Questions on Fibromyalgia Pain
Dr. Liptan also answered these seven questions about treating fibromyalgia pain for our group:
- Why won’t my doctor prescribe opiates?
- Should opiates be used for everyday fibromyalgia pain?
- Are there good ways to use opiates when treating fibromyalgia?
- What can I take every day to manage my fibromyalgia pain?
- What medications might make my fibromyalgia pain worse?
- How do I know when I’ve done the right amount of exercise?
- How do I know if my fibromyalgia pain too much?
You can read the answers to these questions in Part 2, a blog post titled, Answers to Seven Tough Questions on Fibromyalgia Pain.
One of the things that Dr. Liptan didn’t say, but that became very clear to me, was that the more ways we treat our fibromyalgia — using something for our soft-tissue pain, to calm down our spinal column, and to help our brains process pain signals correctly — the better our pain will be managed.
I encourage you to do two things:
- Let me help you take an honest look at how your pain is being managed right now — especially if you live too far away to see Dr. Liptan! An outside viewpoint is important because it’s easy to forget what “normal” is like. There’s no charge for this chat and I guarantee you’ll get valuable information that you can use right away. (Get more info on a Fibromyalgia Consultation.)
- Take what you learned in #1 and talk to your doctor about it. You deserve to have a fibromyalgia treatment plan that works for you!
I would love for you to be able to avoid all of the trial and error (and pain!) I’ve gone through over the last five years.