Last month, Dr. Ginevra Liptan spoke on fibromyalgia pain management at the Portland Fibromyalgia – ME/CFS Group, the support group I co-lead.

This blog post is Part 2, and contains my notes from her talk and handouts, as well as my own insights. You can read Part 1 here.

You can also sign up to join our group’s private website to gain access to a video of her presentation.

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 fibromites from all over the country to see her!

Answers to Seven Tough Questions on Fibromyalgia Pain

Dr. Liptan started her talk by giving us an overview on how the pain cycle works, why fibromyalgia is so hard to treat, and some ideas for treatments for each part of the pain cycle. That portion of her talk can be found in Dr. Liptan on Fibromyalgia Pain Management.

After a short break, she answered questions from the group that were submitted ahead of time and asked in person. I recommend reading Dr. Liptan on Fibromyalgia Pain Management first, since some of the things that she addressed in the first portion of her talk will help the answers to these questions make more sense.

Why Won’t My Doctor Prescribe Opiates?

The first question Dr. Liptan addressed was the use of opioid pain relievers in fibromyalgia treatment. She passed out a fascinating article from the New England Journal of Medicine titled, A Flood of Opioids, a Rising Tide of Deaths.

This article shows that, as doctors have tried to manage pain more effectively, opiate prescriptions have become more common — and so have accidental deaths from these prescriptions.

In fact, deaths from unintentional drug overdoses became the second leading cause of accidental death in 2007. There were 11,499 deaths from overdoses of opioids that year — more than heroin or cocaine combined.

Here’s two quotes from the article that really stood out to me:

“Visits to emergency departments for opioid abuse more than doubled between 2004 and 2008, and admissions to substance-abuse treatment programs increased by 400% between 1998 and 2008, with prescription painkillers being the second most prevalent type of abused drug after marijuana.”

“Between 1997 and 2002, sales of oxycodone and methadone nearly quadrupled. …studies have shown a strong correlation between states with the highest drug-poisoning mortality and those with the highest opioid consumption…”

What does this mean for you and me? It means that the doctors who were freely passing out opioid painkillers to those of us with fibromyalgia pain are now scared.

Research has shown an uncomfortable connection between all of their prescriptions for painkillers and deaths by overdose from those same painkillers! I honestly can’t blame them. You should read the article and get the whole scoop. It’s pretty eye-opening.

Should Opiates be Used for Every Day Fibromyalgia Pain?

Fibromyalgia pain doesn’t respond well to typical pain medications — that means opiates. One of the big reasons is that we have chronic pain, not short-term pain.

Dr. Liptan explained that opiates totally block the pain signal. Remember the radio analogy from the first part of Dr. Liptan’s talk?

With opiates completely blocking off the pain signal, your spinal column ends up saying, “Hey! My signal isn’t getting through!” and turns its signal up louder.

In addition, your brain says to your spine, “Hey! I think something is going on down there; you better turn that up!” Your brain also tries to listen more intently to the pain signal, focusing in on it so that it seems louder to your brain.

In the end, you have both your spinal column and your brain turning the pain signal up louder and louder — which means you hurt more and more. It creates a sort of feedback loop, like that nasty sound you get when you put a microphone in front of a speaker!

Long-term, you end up experiencing more pain when you are on opiates. This is called “opiate induced hyperalgia.” That’s the fancy medical term for really-bad-pain-caused-by-pain-medications. (As if fibromyalgia wasn’t painful enough to begin with, right?)

This reaction by your body is not an addiction, Dr. Liptan stressed to our group. An addiction is something that causes you to have bad behavior or do bad things. This reaction, however, is a dependance. Your body is used to the drug and is therefore dependent on it.

Other scary things can happen too. Tamara Staples, one of my clients and co-leader in our fibromyalgia support group, shared this on her blog: What I Didn’t Know About Pain Pills Could Hurt Me. I highly recommend reading her take on things as well. She recently quit her opiates cold-turkey due to a developing case of gastroparesis and possible adrenal insufficiency secondary to opiate pain medication.

Moral of the story? Taking opiates for chronic pain, like treating fibromyalgia, can really, really backfire on you!

Are There Good Ways to Use Opiates When Treating Fibromyalgia?

Dr. Liptan told us that the answer is definitely: YES.

First of all, opiates should not be used as your everyday drug of choice. Opiates are best used for breakthrough pain, for your fibro flares. Why? It’s simple, if you use them every day, then they won’t work for you when you have a flare — your body will already be used to them.

Second, you want to keep the dose as low as possible in order to reduce the feedback loop described above.

Third, Dr. Liptan suggested keeping your breakthrough medication for your 10 worst days of the month. That way it will remain the most effective for you.

As a side note: if you’re having more than 10 days that you’d consider to be your worst, you may need to revamp your daily routine so that it’s more effective.

What Can I Take Every Day to Help My Fibromyalgia Pain?

That would be your tramadol, gabapentin, or the newer Buprenorphrine, along with the treatment strategies Dr. Liptan described in the first part of her talk.

One thing Dr. Liptan pointed out is that the only medication in clinical trials proved to be helpful for fibromyalgia pain is tramadol (Ultram). This makes it a great choice for your everyday pain.

I will add that just a week or two after Dr. Liptan’s talk, this article was released by the American Academy of Pain Medicine showing that low dose naltrexone (LDN) “significantly reduces daily pain in patients with fibromyalgia.” Although it isn’t a painkiller, per se, this news is very encouraging.

I take LDN myself and have found it to be extremely helpful. You can read more on LDN on their website and in Dr. Liptan on Fibromyalgia Pain Management.

What Medications Might Make Fibromyalgia Pain Worse?

Dr. Liptan gave us two groups of medications that could potentially cause you to hurt more:

• Statins, medications that lower cholesterol, have been known to cause more pain in fibromyalgia. Depending on what your needs are, you could try a different statin, or a more natural approach. Coenzyme Q10 is an option that Dr. Liptan mentioned. I also suggest changing your diet or trying Shaklee’s Cholesterol Reduction Complex. If you’re interested in trying the CoQHeart or Cholesterol Reduction Complex from Shaklee, you can get to know my friend Missy in her guest post, How to Choose a Good Quality Vitamin Supplement; she has family members with fibro, so she totally gets it!
• ACE Inhibitors, medications that primarily treat high blood pressure (such as lisinopril and enalapril), increase substance P (yes, P for Pain!). Dr. Liptan suggested switching to an ARB inhibitor. Again, I would add that changing your diet can be a huge help in reducing high blood pressure!

How Do I Know When I’ve Done the Right Amount of Exercise?

The first thing Dr. Liptan told us was to throw the word “exercise” out of our vocabularies! As fibromites, we should be thinking instead in terms of therapeutic movement.

Now that we’re thinking about movement in the right terms, she gave the following bits of advice:

• Take it slow — in baby, baby steps! Dr. Liptan mentioned that she will often have patients who will talk about doing an hour in the pool their first day, “because it feels so good!” This is NOT a good example of a baby step! =)
• Stop before it feels bad!
• Wait a few days in between — with fibromyalgia, we probably need to go every three days, not every day or even every other day.
• Do an incredibly good warm up. Dr. Liptan describes what this would look like in her book.
• Be kind, slow, and gentle with yourself.

Dr. Liptan also confirmed what one group member suspected: with fibromyalgia we are more likely to pull or tear muscles. This is all the more reason for us to be slow, careful, and have “an incredibly good warm up,” as she puts it.

Several years ago I went to a physical therapist who used to work at a fibromyalgia clinic. She gave me some great tips that I’ll add here as well. These tips are for how to increase the amount of exercise, uh… I mean, therapeutic movement, you are doing each time:

• Figure out how much activity you can easily do each time without getting tired or hurting yourself. This is something that you can usually guess pretty accurately. It’s okay if it’s only 1 or 2 minutes.
• Do that amount, resting for one or two days in between, as Dr. Liptan suggested.
• After three or four times at that amount of time, raise it by 15 or 30 seconds, maybe a minute at the maximum. Most exercise guides would tell you to go up by several minutes every time you exercise. We can’t do that. Just increase by this small amount every few times, letting your body adjust.
• Do this new amount, resting for one or two days in between.
• After three or four times at the new amount, raise it again by 30-45 seconds, maybe a minute at the maximum.
• Keep repeating this cycle, adding only a minute or less each time. Eventually, you might walk a 5k like I did!

When Is My Fibromyalgia Pain Too Much?

Dr. Liptan told our group member who asked this question, “Thank you for asking the hardest question of the day!”

She then went on to give us a great tip:

If you feel like you’ve maxed out all of the tools in your toolbox — if you’ve done everything you know how to do and it hasn’t helped — it’s time to talk to your doctor.

I would add one more thing to this from my own experience:

It’s time to talk to someone when how you feel starts to get in the way of you being YOU.

Sometimes even a low amount of pain can be there in the background nagging at you, causing you fatigue, wearing you down, draining you.

You might be popping OTC pain pills, taking extra naps, but really, the problem is that you aren’t able to live your life like YOU any more.

Taking some low dose naltrexone or tramadol every day might actually give you your life back!

Action Steps

Whether you’re new to fibromyalgia, or are a fibro-veteran, it’s never too late to take a new look at your treatment plan. The smallest changes can bring about amazing, life changing results, just like they have in my life.

I’ll leave you with the same two action steps that I gave you in Part 1 of this series, because they are so important:

1. Schedule a time to chat with me. 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.)
2. 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!

Take it from someone who has been to Social Security disability and back again:

You don’t have to wait until you lose your life before you to try to get it back!

Because she can relate from personal experience, Tami not only helps her clients along in the process of feeling better by eating better and losing weight, she also helps them feel completely at ease and gives them peace of mind when it comes to the scary and hopeless feelings that accompany chronic fatigue and fibromyalgia. — Jennifer Tolley

Tagged as: Books, Medication, Portland Area Fibromyalgia ME/CFS Group