turquoise background, with white text: "I did it my way: Guiding your own medical wellness journey: off label LDN for fibromyalgia). The right side of is a picture of a bottle of prescription medication

I met Katie a year or two ago. As she and I discussed our health experiences, I found myself especially fascinated with how she discovered LDN and how helpful she’d found it. As she shared her experience of negotiating her treatment with her doctor, I thought it would be a great piece of experience to share with my readers. What follows is Katie’s experiences and advice in advocating for off-label usage of medication to treat her condition.

When you are in chronic pain, you become desperate to make it stop. This makes us vulnerable to try almost anything.

This was me the last two years of my 32-year teaching career.

When I was diagnosed with Fibromyalgia the winter of my last year, I felt relieved because if you have a diagnosis, then you will have a predictable treatment, right?

Sadly, not so much.

Having a Receptive Doctor Makes All the Difference

Receptive, as defined in the Oxford Dictionary, means “willing to consider or accept new suggestions and ideas.” I am fortunate that just as I was developing more and more symptoms of Fibromyalgia, I started up with a new family-practice doctor who has been extraordinarily supportive and receptive.

I had moved to a small town just as I began experiencing life-interfering symptoms of deep fatigue, difficulty thinking and talking, overwhelming anxiety, and roving pain that had no logical cause.

This small town is surrounded by forests and small lakes and has one big river that runs through it. It’s the he kind of town with one small grocery store, one bank, one small medical center serviced by three doctors, and two blocks of downtown shops. For my husband and I, this was our heaven.

However, access to a variety of medical specialists and care is not an option here. If I chose, I can drive the 60 minutes to the big city south of us to have access to four or so quality hospitals and a plethora of specialists. Yet driving long distances, especially when I was at my worst, was more than I could handle on a regular basis.

The convenience of having my primary care physician just 5 minutes away really fits my needs. But if he wasn’t receptive to learning about new things (especially coming from his patient), my journey these past three years would have been quite different.

“To know thyself is the beginning of wisdom.”

—Socrates

Know Thyself: A Vital Step in Directing Your Wellness Journey

Fibromyalgia is not a well-understood chronic illness. Your average doctor will generally know the basics, including the three FDA-approved medications for treatment, but most likely, that is the extent of their knowledge.

The first step in guiding your own medical treatments is knowing what you’re dealing with. As for me, my love of teaching and learning meant that I am no stranger to researching. I make sure to research via multiple respected sources before determining my opinions.

Fortunately, I had some quality guidance early on. I was admitted into a multidisciplinary chronic pain management program through a rehabilitation hospital. They introduced me to the world-renowned Dr. Daniel Clauw, who researches Fibromyalgia at the University of Michigan.

His talk on Fibromyalgia circa 2017, “Is It All in Their Head?,” has been the basis of all I do within my search for healing. I shared this video with my GP, who was willing to actually take the time to view it.

His description of the Fibromyalgia nervous system being like an amp being turned on high rang true for me and how I might have developed Fibromyalgia.

I have now come to understand that I have lived in fight/flight/freeze for all of my life due to being raised by a single-parent mother who had untreated schizophrenia and bipolar disorder. While I learned how to survive and those skills brought me many “atta-girls” for being an overachiever, it still was conditioning my brain to be ultra-vigilant.

Further Reading

Aversion to Medication

Along with my research, I’ve learned to listen to my body and follow my own intuition much better than before. I now understand that I’m hypersensitive to all medications. I had clues to this before my diagnosis in that I was a super light weight with caffeine and alcohol.

Also, through this process of understanding myself and what is going on in my body, I have found out that I have a lot of fear about prescription psychiatric drugs. My mom, after being taken to a state psychiatric hospital, was so drugged up she acted like a zombie. As a teen, visiting her was beyond scary.

So when my GP, after my diagnosis, suggested, like he did all his patients with Fibromyalgia that I begin on Cymbalta, I viscerally felt opposed.

I could feel his consternation when he said, “I’m a doctor. What I do is offer medicine. This is one of the few drugs that is FDA-approved for Fibromyalgia.”

The implication was that if I didn’t take it, he had no idea what he could do for me. And so, after a month of resisting, I agreed to start at a low dose of 20 mg.

Something’s Not Right

As I participated in the 10-week pain-management program (3 x a week for 3–4 hours each day), I was also taking Cymbalta. I could tell that it was helping my overall pain symptoms, but as for the utter fatigue and brain fog, that didn’t seem to lessen much.

Also, the Cymbalta caused me to have very little sex drive and the inability to have an orgasm. This was something I didn’t want to live with.

Stories that I had read and heard from friends talked about how the level of dosage would need to rise over time and of the withdrawal so difficult that some just resign to taking it for the rest of their lives caused me to want to get off of it as soon as possible.

My pain specialist, a physician from the program, agreed that I could go off from the prescription. Being I was on the lowest dosage, I stopped it just at the end of the 10 weeks.

To say that the next three months were awful really is an understatement. I wondered if the withdrawal symptoms would ever stop.

Further Reading

Traditional pain management has focused on treating the injury or trauma site, but low-dose naltrexone works on the overactive nervous system.

“’Low-dose naltrexone begins to address the cause of pain and not just mask it, which allows us to better target diseases causing chronic pain, as well as potentially consider pain control outside of opioid use,’ Hatfield said.”

Michigan News, “New Hope for Treating Chronic Pain Without Opioids

Off-Label Low-Dose Naltrexone for Fibromyalgia

Early on in my research, I stumbled on a blogger, Donna at fedupwithfatigue.com, who gave level-headed, researched-based information.

The format of her website is now different, but back when I found her, she had a section called “Newly Diagnosed.” I went through each and every post.

From there, I began to discover other self-help protocols.

One medication that stuck out to me was something called Low-Dose Naltrexone. She had a few different posts about it. Her experience with the Cymbalta, Lyrica, and Gabapentin bolstered my resolve to find something else.

And so I began to look up everything I could find about Low-Dose Naltrexone (LDN).

Just before the COVID-19 lockdown went into place, I attended a live Zoom event for Fibromyalgia. One of the speakers was Dr. Daniel Clauw, and the other was Dr. Ginevra Liptan.

Both talked about the benefits of LDN for Fibromyalgia.

Dr. Liptan uses it with her patients as often as she can, and although it doesn’t work for everyone, research has shown it to have more efficacy with treating Fibromyalgia than the three FDA-approved medications.

Convincing My GP to Provide a LDN Prescription

I had no idea how my doctor would take my request to try this off-label medication. However, he’d been understanding, caring, and seemed to respect my efforts, so I sent him a message via our health portal.

It really was a simple message: “Would you be willing to try low-dose naltrexone for me? https://fedupwithfatigue.com/low-dose-naltrexone-for-fibromyalgia/

His response was, “As you know, it is ‘off label’ and studies are limited. I am willing to prescribe a month with rf’s and see how it goes.”

I, then, had to find out the compounding pharmacy because he had no idea how much to prescribe.

I had researched and suggested 1.5 mg with 4.5 mg as my end goal. In his research, he found the Stanford study that used 4.5 mg; however, I knew that was going to be too high.

He asked, “The tablets are 50 mg. Any idea how you get to such a small dose?”

Luckily, in the city was a good compounding pharmacy with a pharmacist who was familiar with LDN. Within two days I had my first prescription.

Further Reading:

Trust and Respect Need to Be Built

I believe that building trust and respect are the two main things that have led to my GP feeling open to my requests.

He knows that anything I ask for has been very researched ahead of time.

He knows that I will follow through and keep him informed, honestly.

He also knows that I will respect when he is feeling uncomfortable with something.

For about six months prior to going on LDN, I tried CBD and THC.

Even though recreational cannabis is legal in my state, I went through the process to get a Medical Marijuana Card.

Then I made sure to let my GP know exactly what I was trying. (See post listed above for specifics).

turqoise background, cutout image of a doctor in the upper right corner, with "painfullyliving.com" and its icon at the bottom of the image.  Central image is a picture of a clipboard with the words "Diagnosis: Fibromyalgia" visible

However, I also take Vyvanse for ADD (which greatly helps with my energy and focus ability).

My doctor felt uncomfortable with me using THC (even the very little 1:1 CBD/THC oil I was using to help with sleep).

I have to have my blood tested every six months for chronic pain to see what substances are in my system.

He didn’t want the tests to show I had THC in my blood because it could cause issues with him giving me the Vyvanse prescription.

Even though the THC did help me get better sleep, I wanted to honor what he was comfortable with. And so I stopped using the oil.

Communication Is Key

Thank goodness for the health portal we have for communication.

I keep my GP up to date for any changes that I have in my self-care protocols.

I’m cognizant not to contact him too often because I don’t want to unfairly take up his time, yet I feel that giving him updates has helped him feel not only in the loop with my wellness journey and treatments but also has assured him that I’m trying to do my best to heal.

After my first month of LDN, I sent him a thorough update (see my post above for details).

I explained my rocky start and how I had to drop down to much lower than 1.5 mg to 0.25 mg.

I ended it with:

“I’m feeling very positive about the possibilities that LDN is bringing. I’m not there yet, I can tell, but I am already reaping some benefits (pain relief after 30 minutes of taking it is one).

“I sure appreciate your willingness to let me try this. From what I’ve read, for some people, it can take a while to get to the ‘sweet spot’ for dosing and to get over the side effects. But, I’m willing to stay the course.”

As well as my update, I sent him more information that I had gotten from the ldnresearchtrust.org website.

Making a Difference

What’s been so rewarding to me in my interaction with my doctor, besides my own good results with LDN, is that he is now prescribing it to others that are candidates and open to the idea.

A couple of months ago, I sent him a new study done by the University of Michigan on using LDN in place of opioids.

He thanked me for the info and said he passed it on to a colleague who was having problems with the number of patients he had using opioids.

I feel that my work and experience is helping inform my doctor and beginning to help others in my small part of the world.

Katie Clark(white woman with white hair tucked under her hat) smiling to the camera on a nature trail with a backpack over her shoulders

Katie Clark has fibromyalgia and does her best to live fully. She shares her stories and lessons learned on her blog, https://painfullyliving.com/.

She has recently retired from teaching after 32 years of ELA: Reading and Writing Workshop 6th grade and French (FLES style semi-immersion K-6).

She loves to learn, and has used that love to help translate her experiences into lessons to help our community to live fully.

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