The 2018 Fibromyalgia Year in Review: The Good News and the Bad News – From this Year’s Headlines

The 2018 Fibromyalgia Year in Review: The Good News and the Bad News – From this Year’s Headlines

By Ginevra Liptan, MD.

CBD (cannabidiol) is everywhere 

You can get CBD at the health food store or in your coffee drink now, and everyone is curious about it. Recent New York Times had this to say about CBD “It’s hot, everywhere and yet almost nobody understands it.”

Ginevra Liptan, MD

What is behind the CBD explosion? Access has greatly increased to changing legal status over the past few years and CBD has found huge visibility thanks to social media. And finally, there is a real need for alternative pain management options as diminished access to opioid medications forcing patients to seek solutions “outside the box”.

The bad news:

  • The CBD industry is unregulated and can be hard for consumers to know the quality and purity of CBD products, meaning it really is not very “medical” yet.
  • Vastly inadequate current state of research means we only have limited information on effectiveness, dosages, side effects and potential medication interactions.

The good news:

  • CBD has great potential as a treatment for many different conditions including anxiety, PTSD and chronic pain
  • Patients can easily access this relatively low risk treatment for pain.

Opioids are OUT

As our society reckons with opioid abuse, across the country opioids are being pulled away from patients—in many cases without other effective options to replace them— resulting in increased suicide rates and worsened agony for those in chronic pain.

There is now a great deal of fear and panic among chronic pain patients that opioid pain medications are going to be yanked away without any replacement. Chronic pain patients and advocates in Oregon are fighting against a proposal by Oregon Medicaid to mandate a taper of opiates for all chronic pain patients. When I testified against this before the Oregon Health Authority my primary argument was that fibromyalgia and chronic pain patients need MORE tools in their pain management toolbox, not less. Of course, it makes sense to ensure that opioids are a last choice option to be utilized only if other treatments are not effective, and to ensure that opioids are prescribed safely and with focus on preventing misuse and abuse.

The bad news:

  • The hysteria around the opioid abuse crisis has lead to a chronic pain crisis as opioids are being pulled away from patients without effective replacements.

The good news:

  • As opioids fall out of favor, significantly more research dollars are being directed towards studying new approaches to treating pain.

For example just this year resiniferatoxin, a plant-derived chemical that can destroy nerve endings that signal pain, while leaving other sensory nerves intact, has emerged as a promising painkiller. 

A new drug that lowers brain glutamate activity is showing promise for fibromyalgia pain. This medication lowered glutamate levels in certain areas of the brain important in pain, and also lowered pain levels, with no major reported side effects

A novel non-drug therapy using electrical stimulation of the occipital nerves lowered fibromyalgia pain. Small electrodes were implanted under the skin in the back of the neck under local anesthesia. One study showed that this type of electrical stimulation increased the brain’s ability to filter out pain signals resulting in decreased pain.

Here is my “prescription” for a better 2019:

We need more funding for research on non-opioid pain management, including CBD. My hope is that Lady Gaga, who has spoken publicly about her personal struggles with fibromyalgia herself, will donate to fund this type of research. We need to move to a rational approach to prescribing opioids, focusing on prescribing them safely but not pulling them out of the pain-management toolbox until other better options are widely available. Ultimately, to solve the opioid abuse epidemic we need to focus on the root causes of poverty and lack of adequate medical care for mental health and addiction, NOT reflexively take opioids away from patients using them responsibly to manage chronic pain. As I pointed out in a blog post, the historical parallels to prohibition are obvious. Making alcohol illegal did not stop alcohol use or abuse, just as refusing to prescribe pain medications for those in chronic pain will not stop the abuse of opioids.

Ginevra Liptan, MD is a graduate of Tufts University School of Medicine, board-certified in internal medicine who developed fibromyalgia during medical school. She is the author of The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor and The Fibro Food Formula: A Real-Life Approach to Fibromyalgia Relief. Learn more at http://www.drliptan.com and http://www.youtube.com/drliptan

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Authored by: Ginevra Liptan, MD

Ginevra Liptan, MD, developed fibromyalgia while in medical school. She is a graduate of Tufts University School of Medicine and board-certified in internal medicine. Dr. Liptan is the founder and medical director of The Frida Center for Fibromyalgia and the author of The Fibro Manual: A Complete Fibromyalgia Treatment Guide for You...And Your Doctor and The Fibro Food Formula: A Real-Life Approach to Fibromyalgia Relief.

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Rakel

CBD and cannabis do not have any effect on amybpain pathway on the body. So,says my Pain Consultant who is head of pain for five London Teaching Hospitals and who travels to world to conferences. Keeping up,with new developments, what cannabis dies is make you feel better so the pain is less important, CBD didn’t work for me either but I know folks with RA for whom it does,

Rakel

Hi Eleanor, I’m delighted cutting your opioids has helped you. Here in the UK,we have the doses we need and other meds are given concurrently where helpful for the individual eg, Tapentodol, a neuropathic paint killer, Oscar azepine amd epiliepsy med, and paracetamol, a prostaglandin inhibitor. Our lives are not centred aeroin dour meds’ as they are supplied regularly and reviewed regularly. In addition m
We have lifestyle management and exercise programmes and the latter are key and so much pain comes firm MSK imbalances, and exercise relaxes antinflammatories and natural endorphins. Only opioids work for central pain so may of us are always going to need them ie where the CNS is sensitised and sending out pain signals it shouldn’t. The science of tolerance is that there is no known science of tolerance because every patient has a different response dependant on their individual physiology, and actually tolerance has NEVER been proven. A plant from Australia called Cehamia kills nerve pain and can be found in the Exzema and Rosacea creams of PHat5.5 on Amazon. Apply twice a day but it’s not cheap. It s the best painkiller I use,

Eleanor

I understand the panic among FM patients regarding the war on opioids but heather is missing a crucial element. Opioids do not help. They are a short term solution that ultimately exacerbates the problem. Tolerance is quick and the brain responds by increasing pain signals. I’ve never met a chronic pain sufferer who’s entire existence isn’t centered around the management and administration of pain meds. The next fix so to speak. I was one of them, in terrible pain, abruptly and mercilessly cut off of a 5 year fentanyl pain management dose for insurance reasons.
I still live with the pain but it is nowhere near the levels it was when it was close to the time to change my pain patch.
Im no longer counting hours, checking and rechecking my stock, rationing breakthrough meds. I made changes in every aspect of my life and now I’m in control, not the drugs, not the pain.
I agree with the dr that we need real research, real long term solutions. It is a real disorder and with so many individuals suffering, it should be a priority to find out why.

Heather

We need opioids for those who they help, and whose doctors felt this option was appropriate before. The only thing that has changed is that doctors are letting the DEA make medical decisions for them.

I thought you would continue to stand with us. As others said, the problem is street drugs. Don’t buy into the easy narrative because it is convenient.

Don’t fool yourself. Patient’s lives are at stake.

Also, you know that the new meds will be expensive under patent laws and that fibro patients are often unable to work. You know this situation isn’t an easy one.

Cheryl

My sister lives in CA, so I jumped on the CBD train a year ago. I got the 300mg, but it didn’t work for my severe headaches. Migraines, severe TMJ & bad sinus pain. I was hoping it would work, so I wouldn’t have to deal with the Dr’s as much etc… but I’ve taken 20 drops of the 300mg some days. The problem is it’s not regulated, at least not for pain, that I know of. I could try a stronger dose, but I did take 20 drops with no pain refief at all. Good Luck to anyone who can get relief from this though.

Sarah

Great article, and so very true. Thank you.

1st of all thank u so much. My family has chronic Lyme disease. My 21 yr old son & lifetime husband passed away. We 3 left are so sick all the time. I advocate daily online to try & get help for pain ppl, try to spread the word to hopefully get ppl to join our group, writing senators, congress, etc PLZ tell me if u know of anything more I can do from my home. Thank you again & God bless, brenda pitts bennett. 810 Parkview Durant Oklahoma 74702

Etienne

I have to agree with both Lisa and Rakel. Like Lisa, tried it all, even very recently Scrambler Therapy, a fairly new, expensive chronic pain treatment, did not work for my 30 y.o. FM. Like Rakel, I have swallowed lots of cbd oil, dreadful stuff even flavored with chocolate mint, to no avail, though it actually does make me a woozy. No pain effect, though. I’ve also had massages with it and used balms with it, no luck. If there’s a whiff of success online or on Pub Med, I try it. No luck and max dose tramadol does almost nothing. I tell people it helps you feel as if you were only stabbed with a five inch knife, not a six inch one.

GLTA but time is running out for old fibies with bad intractable pain. At least I’ll be out of pain some day.

]It is unfortunate that Dr Liptan adheres to the belief that opioid addiction causes today’s Overdose Crisis. Statistics reveal the opposite. What’s increasing in popularity is the stimulant Methamphetamine. When taken repeatedly, methamphetamine depletes the brain of it’s natural supply of dopamine and morphine, the two endogenous substances that cycle in the body’s biological clock. Habitual meth users become severely tired yet unable to sleep. Increasing their meth dose does not bring alertness, for the dopamine rush they experienced on their first dose of meth, no longer happens in a brain that’s deprived of dopamine.

People become desperate for relief from this zombie-like state, and mix various substances together trying to force sleep to happen.

Humane detox from meth addiction has not yet been worked out. Going off meth induces psychotic symptoms and a sense of paranoia. If any of the cannabinoids can make meth detox less brutal, that would be a welcome development. Research on that deserves to be done. Right now, there is no Buprenorphine-like or Methadone-like substance a doctor can give a meth addict during detox…the patient simply must be restrained or kept in a rubber room and allowed to suffer for days, while the methamphetamine burns itself out of the patient’s system and he or she finally sleeps.

Desperate meth users have been known to use Tasers to knock themselves out. Others buy Fentanyl from their meth supplier and overdose on it.

Misunderstanding the problem leads to bad solutions being tried. That’s true of both meth addicts and drug policy makers.

Steven

CBD oil did nothing to reduce pain for me! It did get me a positive test result for cannibis at my pain doctor! NOT FUNNY AND COULD BE FATAL IF HE FIRES ME. That is my one and only warning. gives out. I strongly suggest against trying it. My fellow pain sufferers still here know exactly what I mean!!!

Lisa Hess

I like the idea of these new developments. I have been suffering with Fibromyalgia for 12 years, but I also have so many other chronic spine diseases that cause pain as well as several autoimmune chronic illnesses that cause severe chronic pain. I’ve been taking Cymbalta for Fibromyalgia for the past 11 years and it is what keeps the FB pain at bay on good weather days, however, because I have so many other chronic pain causing illnesses as do many other people who also have Fibromyalgia, how would these new pain sensor studies help to control other nerve causing pain or, in my case, bone, spine and muscle diseases? And, if a person such as I who is never a candidate for the Spinal Cord Stimulator as we found after I had the implant because the nerves that the stimulator works with are crisscrossed and send the wrong signals to my brain, I fear this new tactic would cause the same problem for myself and others who have had the same issues with Stimulator failures because it deals with the nerve endings. There are people like me with so many chronic pain causing illnesses and we have exhausted every possible remedy (Medical Marijuana with and without only CBD, or other CBD products), surgery, noninvasive and invasive spine procedures, therapy (both physical and mental) to no avail and the unfortunate position we are now placed in because Opioids are our only answer to pain. All the billions of dollars the government is putting into these programs for addiction and research will never be able to come up with an answer for people like me and that is the one biggest picture no one is looking at.

Becky

Well written. Great references. Parallel to alcohol yes. CBD does not work for suicidal pain unfortunately nor does electrodes. Please join the National Dont Punish Pain FB groups for each state with the next rally on Jan 29th 1-2 PM at each state Capitol.

Ellen Lenox Smith

Beautifully presented, well-written article – thanks for reviewing the reality of where society stands and the goals for the future. We especially need to stop punishing pain patients with lack of proper medications.

Rakel

The University of Glasgow Medical School has conducted peer reviewed published research on the effectiveness of CBD for Chronic Pain and they include Fibromyalgia in this definition, has shown CBD alone does not work, I have chronic central pain and I’ve tried it it was a waste of £300, a massive amount of money, I have anecdotal evidence from friends with Rheumatoid Arthrits that CBD ie Medical Cannabis, is effective for that and that THC the euphoria causing part of the cannabis plant, works for chronic pain. Cannabis is not the Free Lunch for pain many people claim. In addition THC has a half life of 2 hours ie the effects last two hours so sleep is disturbed to take repeat doses, the munchies causes weight gain and fat presses on pain receptors exacerbating pain, and THC has a withdrawal syndrome lasting about 3 weeks.