This blog post is Part 2, and contains my notes from Dr. Liptan’s talk and handouts, as well as my own insights. Use this link to read Part 1, Dr. Liptan on Fibromyalgia Pain Management.
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.
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 Opioids?
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, opioid 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 are 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 Opioids be Used for Every Day Fibromyalgia Pain?
Fibromyalgia pain doesn’t respond well to typical pain medications — that means opioids. One of the big reasons is that we have chronic pain, not short-term pain.
Dr. Liptan explained that opioids totally block the pain signal. Remember the radio analogy from the first part of Dr. Liptan’s talk?
With opioids 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 could end up experiencing more pain when you are on opioids. This is called “opioid-induced hyperalgesia.” 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 dependence. Your body is used to the drug and is, therefore, dependent on it.
Are There Good Ways to Use Opioids When Treating Fibromyalgia?
Dr. Liptan told us that the answer is definitely: YES.
First of all, opioids should not be used as your everyday drug of choice. Opioids 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 Buprenorphine, 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 at LDNResearchTrust.org 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:
- 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!
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
I know that I need to get off of the opiates and I’m on what I’m told is below average doses now. I’m currently trying to find another doctor as my current doctor is only offering me a very costly prolotherapy option when I know there is more she can do for my back pain. In any case, my fear is switching to a doctor who does not use opiates (even tho I want off of them for more reasons than one) because I don’t want to stop taking them cold turkey and go into withdrawal AND because I’m afraid of the pain that is there without them. I can remember being curled up in a ball crying because I hurt so bad and not being able to function. The opiates made it possible to function and “be human”. I’ve already cut the dose in half but the back needs fixed before I feel that I can go lower. I just don’t know what to do. In short it’s the withdrawal and pain I’m afraid of when cutting off the opiates.
Have you thought about trying acupuncture? It is fantastic for chronic pain, particularly back pain. Plus, it’s something you can ADD to what you’re already doing. Depending on where you live, there may be a low cost clinic as well. Acupuncture actually changes the way your brain processes pain and can even make your pain pills work better, requiring you to take less of them. You could also look at seeing a chiropractor, osteopath, physical therapist, etc. Do you know what’s actually wrong with your back? (I definitely like that you’ve identified that you need to fix the underlying problem first! I agree!)
No idea what’s wrong with my back. My pain mgmt doctor is stumped. I have an upcoming appt with a orthopedic doctor (I think I got that right) who specializes in backs so hopefully we can pinpoint what’s going on. As of now it’s hurting all the time and draining all my energy. I am tired all the time because of it. My husband is of no support. I mentioned it and his answer was “so go to the doctor”. In any case, if this doctor can’t help, the pain doctor wants to do a prolotherapy where they take bone marrow and fat from my hip, mix it up into some kind of solution and inject it into the ligaments where the connect to the bone in my back. However this is a last resort as it’s not covered by insurance and is roughly $2000. I think I’ll try the acupuncture and chiropractor before the prolo though.
Oh, and I only have one step down left between me and nothing on the extended release every day opiates. And I hardly use the break through’s unless its ABSOLUTELY necessary (seen too many people addicted to such a minor common drug).
I recommend that you check out a friend’s blog. She’s come off opiates herself and is now helping others do the same.Unfortunately, that blog is no longer active. =(Thank you, I will definitely check it out!!
This is truly the most informative fibro site I have found, thanks to everyone for contributing their
knowledge and experiences, especially for those of us just starting this journey, you are a Godsend!
You’re so welcome, Marilyn! Glad to have you here. =)
If you ever want to have a person-to-person chat, just click the “Schedule Now” button on the right side of the screen. The first consultation is always free. <3
I am very new to Fibro. My pain has just recently gotten completely out of control and reading this made me feel so much more validated. My doctors are not listening to what I am saying and I am feeling helpless. Both my 25 year old sister and my mother have it and I have all the symptoms. I understand that doctors are afraid to give out pain killers but I want to try Tramadol because it has worked for my sister. Every time I talk to my doctor she makes me feel like I am just after pain medicine because I am an addict..even though I’ve never even taken it. I don’t know what to do…I work with my hands at work and I have missed work now because of this pain. In return I feel very depressed.
Hi Brenda! I’m glad the article helped. <3 I'd love to chat with you about other things that might work for you as well. Most of my clients work full time. There's lots of things you can do to help your body feel better so you can keep working. Depending on where you live, I might have some doctor suggestions for you too. There's no charge for consultations, so feel free to use this link to schedule a time for us to chat.
Great answers to questions on fibromalgia. Thanks for the informative post and thought-provoking comments. This is great to know!
Tami, thanks for sending this article to me . It is very informative . Still waiting on appt for nerve testing , ugh!
You’re so welcome, Patti! Glad it helped!
Thanks I have a client I will forward this blog to them
I have been trying to manage my fibromyalgia since 1998. I was 22 and was diagnosed after a car accident. It feels like the older I get the more frequent the break through pain. I have taken just about every antidepressant , and pain medyou could think of. I am currently taking Savella and ibuprofen. My doctor doesn’t seem to want to prescribe anything else for breakthrough pain. I have taken Ultram before, and it worked well without side effects. Once in awhile I have gotten desperate for relief and taken a oxy or perk. That works wonders for a once in awhile thing but I can attest they do make matters worse if taken on regular basis. What can I do to get my doctor to prescribe the Ultram again. Iam so sick and tired of being sick and tired. Lol
I would have an honest conversation with your doctor about the fact that Ultram worked for you and that ibuprofen is not. If your doctor is unwilling to discuss that option with you, I would consider starting to look for a new doctor. In my experience, ibuprofen often isn’t effective against fibromyalgia pain. (It sounds like your doctor really isn’t that familiar with the treatment of fibromyalgia and is simply doing the best that he or she can.)
I bed to differ on the opioid issue. I find it interesting that, knowing how different all Fibromyalgia patients are and how differently they react to meds, that you can’t see the value of offering pain meds. I have been on sustained release morphine for many years. It got me to the point where I can exercise and now I am weaning off slowly with NO withdrawal symptoms. I go to an excellent pain clinic in the Northeast/NYC Metro area.
I feel badly that doctors say that opiates do not work for Fibro. I realize the fear of prescribing them, but under the right supervision and judicious dispensing, they can be valuable. They got me from sitting and laying down, to moving. I cannot imagine why that would be a bad thing. Although there is misuse, it seems that is ALL people focus on, not the good results, like mine.
Best of luck to all!
Hi Maureen! I’m not sure what part of this article you disagree with. I definitely believe that pain medication, including opioids, can be a helpful tool for people. You are correct that everyone is different. I know several people who have only been able to get their pain under control using opioids, like you have. I believe that this option should be open for people. However, for most people with fibro, opioids are best used for breakthrough pain, not as daily management due to the side effects and possibilities for opioid induced hyperalgesia.
BTW, you might want to read the story I wrote about my friend and client Sherri Little. Sherri died from complications of chronic pain. She died because she was unable to get her pain under control. I absolutely believe that pain patients need access to pain medications. Denying them access to adequate pain management is unethical and inhumane. It’s also deadly.
Very interesting article, and most makes sense. I too have had the best of luck with the opiates (OxiCotin and Percocet) after trying the “FDA approved” fibro medications like Lyrica (all of them drove me crazy and did nothing for the pain). My fibro pain is beyond description, always there plus I also have degenerative disc disease and cervical disease not to mention painful varicose veins. I read with interest the CDC report, and frankly was appalled by their comment that the opiates offer more bad than good! I do take issue with that statement! I will not have someone tell me that. It’s up to me to decide what the pro’s and con’s are and then weigh which is better for the ultimate outcome which would be as little pain as possible for me. I accept without reservation that there are some nasty side affects from the opiate/oxycodones, but I accept them. Therefore for me, the oxycodone is the way to go FOR ME and for MY PAIN! My doctor wants me to try a pain clinic that is well known here, and I am certainly willing to try. If it works better than the opiates, great!!!!! If not, then I want to have that option of going back to what has been working. With the DEA and the other powers that be looking over the shoulder of just about all doctors who prescribe the narcotic meds, invoking the fear of God in them, then perhaps the accidental death total from an overdose may be reduced because of the fear the doctors have now of prescribing any opiate based medication, but I can see the death total rising from suicides related to chronic pain. I sure hope I’m wrong with that last statement!!!
I hope you’re wrong too… but unfortunately, I’ve seen it already starting to happen. =( Heart breaking!
I had no idea that Ultram was proven to work in clinical trials, I refuse to take anything that will make me loopy and that is the only thing that takes the edge off and doesn’t affect anything. I am going to try and find the research that shows that and show it to my doctor. Also with the fibro diagnosis every time I go to my primary care doctor he says it’s just your fibro. Last time I went I told him I have neck pain and headaches every day and he tried to put me on anti depressants. How can I make him listen to me and not shove everything under my fibro diagnosis?
Your doctor should be looking at what else may be going on with you, not just blaming it all on your fibro. I’ll be honest, the answer may be to find a new primary care who respects and listens to you better. There are good reasons to take anti-depressants for fibromyalgia. They actually do help with how we process pain, not to mention the fact that it can be depressing living with so much pain and fatigue! However, your doctor should be looking into other causes and not just dismissing your symptoms as “just fibro.” If you’d like some help getting connected with a good doctor in your area, let me know. There are coaches I’ve trained all over the world. I would be happy to introduce you to someone who can help you find what you need. <3
Tami, I just heard about you from a Author Incubator webinar. I have suffered with fibromyalgia pain for almost 20 years. I was last Rx Amitriptyline by my Rheumatologist for the pain and it just makes me sleepy. I have to purchase your book because I want my life back. I have no support–my husband of 27 years just makes jokes about my pain and how I move like a robot. I want a divorce for many reasons, but it became real when my father passed last month and I was in Texas for 2 months and I felt a little better without all of the nagging from my husband.
Hi Quin! I’m sorry you’re feeling so much pain. There is a lot that can be done for fibromyalgia besides just amitriptyline! A LOT more. Another book I’d highly recommend getting and sharing with your doctor is Dr. Ginevra Liptan’s “The FibroManual”. You can find my book review here: Book Review: The FibroManual by Dr. Ginevra Liptan.