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A Life Decimated by Pain: LDN Gave a Fibromyalgia Sufferer Her Life Back

Mellisa Miller
September 01, 2015

About Fibromyalgia:

Fibromyalgia is a disorder characterized by widespread pain, abnormal pain processing (strong reactions to things that other people would not find painful), fatigue, sleep disturbance, and often psychological distress. Other common symptoms are: headaches, irritable bowel syndrome, morning stiffness, tingling or numbness in hands/feet, problems with thinking and memory (sometimes called "fibro fog"), and other pain syndromes. According to the Centers for Disease Control website, the prevalence of fibromyalgia is estimated to be around 2% (around 5 million adults, in 2005), and affects more women than men (ratio 7:1). Adults with fibromyalgia are 3.4 times more likely to have major depression than those without. It has also been associated with lower levels of health-related quality-of-life and more loss of work productivity.

While certain differences in people with fibromyalgia have been discovered (e.g. elevated levels of a neurotransmitter called Substance P in the cerebrospinal fluid), the cause (or causes) of fibromyalgia are still unclear. People with fibromyalgia are typically treated with pain medicines, antidepressants, muscle relaxants, and sleep medicines. There are three medications approved for fibromyalgia in the United States, but many patients are not helped by them. Even with recommended aerobic exercise and muscle strengthening, relaxation and psychological therapies, the symptoms of the disorder are still hard for many patients to tolerate.

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Mellisa, what symptoms led to your diagnosis of fibromyalgia?

I became a nurse (LPN) in 1991 and I loved every minute of it. In 2002, while working as a dialysis nurse, I began having bilateral elbow pain and stiffness. I thought it was from the work I was doing at the time: lifting and transferring our patients, lifting and carrying supplies. I thought that I had just over-extended my arms/elbows. Then, before I knew it, I had pain and stiffness in just about every joint, also fatigue that was worsening each day. These symptoms had a major effect on me, my family, and my career. My husband was an active duty army helicopter pilot at the time, we were raising two daughters and I was working as a dialysis nurse. I cut my hours back at work, but that didn't help, so I tried working at another nursing job. Things seemed to get worse with that-- more pain and more fatigue. I was diagnosed with severe fibromyalgia in 2004 by the third rheumatologist I had seen within two years.

How was your fibromyalgia treated and how well did the treatment work?

In the beginning I was started on nonsteroidal anti-inflammatories which did nothing, then was given everything from hydrocodone to Oxycontin to morphine-patches/lollipops which helped some with pain relief but mostly made me drowsy or feel "out of it". I couldn't take any of that while working because it definitely would have affected my thinking and my response time to any type of emergency or patient need. So, I'd be in constant pain all-over while at work, and only once I got home, after I made dinner and helped with the girls' homework, I would take a pain pill. It did not make sense to me that there wasn't something better I could take to give me a better way of life! I was miserable for many years, although the muscle relaxers did give me some relief and didn't make me as groggy as the opiates would. At the time, the medical community knew or accepted very little information related to fibromyalgia as truly real or concrete, so it was a battle for a few years trying to convince some of my providers that fibromyalgia was real, that I was in constant moderate to severe pain, and the only time I wasn't in pain was when I could finally sleep some.

What were some of the impacts of your condition on your life?

By November 2006 my symptoms had continued to worsen, and major depression quickly set in. After 15 years of being a nurse, my pain and depression finally got the better of me and I decided to quit my nursing job and try to focus on getting better. It has been hard getting over not being able to work as a nurse, but I have come to terms with it. Now I know that "who I am' defines me and not "what I was.'

Then, about 7 years ago I went through a particularly severe depression due to the chronic pain. I had come to a point where I was so exhausted and still in unbelievable pain and I spent more hours of the day in the bed than out of it. Suddenly, it felt like my depression went from "zero to sixty' in no time at all. I finally realized, as my husband came into our bedroom and saw me in bed cradling my favorite family photo and crying like a baby, that I may be in need of help! All I wanted to do was to stop my pain, if only for a minute or a few seconds...because it was unbearable. I ended up admitting myself to a hospital for about 4-5 days; they said my medications were not the best ones for my chronic pain. After a few days of medications and doses being adjusted and group/individual therapy, I went home feeling less 'cloudy' but still in constant pain. About 3 months later, out of nowhere it seemed, with severe all-over fibro pain, fatigue, weakness, and feeling so hopeless and worthless, I decided I was ready to "end it.' I opened a bottle of sleep medication, poured what was left in it on the vanity and started taking two at a time. I felt like I was watching someone else do this, and I wanted to yell at them to stop! But nothing came out of my mouth. I felt as if someone was pushing me to do this, saying, "You'll make life better for your family and you won't feel pain anymore!!" But, by the Grace of God, my husband knocked on the bathroom door and asked if I was okay and I said, "Yes, everything will be okay now!" He didn't buy it at all, and continued to knock until I finally opened the door. He saw the bottle and pills on the vanity and said, "Missy, what have you done?" When I told him, he just grabbed me, hugged me tight and rushed me to the emergency room. After that, I was admitted to the psychiatric unit for 5 days and after another rearrangement of my medications and some great counseling. I left there feeling much better mentally but still suffering with chronic pain.

How did you become aware of LDN?

It wasn't until about a year later, in 2009, that my primary care physician finally realized that my pain still wasn't under control, and referred me to an "interventional" pain clinic. They had open minds and were constantly researching new and older treatments for pain control. At my very first appointment, I was told almost immediately that there were not many options left for pain control that I had not already tried. The doctor excused himself for a moment during which time I felt so defeated and started to prepare myself for the typical "there's nothing we can do--you will just need to learn how to deal with constant pain" answer. But a different doctor walked in and he described that there was an old medication that is being used in a different way than in the past, and explained how this new treatment called "low-dose-Naltrexone" is showing a lot of promise in relieving chronic pain in a variety of conditions including cancer, MS, Crohn's disease, and many others. He said there was evidence it provided pain relief in fibromyalgia and that it also had very few (if any) side effects. I was at the point of wondering if I was going to spend the rest of my life in constant pain. When the doctor told me about LDN I felt hopeful again. It had been a few years since I'd heard anything positive as far as pain relief. I knew I was ready to give it a try! I said to the doctor,"Sign me up!" Before starting LDN, I did research online. I found users discussing their experiences with LDN, so I asked a few questions and got a lot of positive feedback. I then decided to give it a try.

Were your physicians' supportive of your trying LDN?

I was very blessed with having a group of doctors who were open-minded. My pain doctors were (and are) still great about writing scripts for me monitoring my LDN therapy. With any new physician or healthcare provider that I see, I do have to explain what it is and how it works.

How did you obtain your LDN?

My initial physician prescribed liquid LDN for me. In order to obtain it, I had to find a compounding pharmacy (at the time there were only 3 pharmacists in town that did compounding). I would go every 9-10 days to pick up my 10-day supply of LDN around $12/100cc bottle. After about a year or so of getting my LDN this way, I had a discussion about the compounding process with my pain specialist's physician assistant. That's when I decided to start compounding it on my own--it was more cost efficient, convenient, and just easier to do myself. So now I can get the Naltrexone from any pharmacy I choose, pay a small co-pay and compound it myself!

What dose of LDN do you take and what effects did you experience?

I started with getting a 50mg tab compounded in 100cc water, and was instructed to take 5cc (contains the equivalent of 2.5mg of Naltrexone) every 12 hours. [The twice-a-day dosing schedule is what the initial physician prescribed for me. I'm not really sure how or why they started me on this particular regimen.] I began taking it in August 2009. I only experienced one side effect: "vivid" dreams, which only lasted for the first few days. It was during those same first few days, as I recall, that we began noticing that some of my symptoms were improving. My husband and daughters said there was almost an immediate improvement in me. My husband said, "It feels like I'm starting to get my wife back!" You can't get much better than that.

In which areas have you seen the greatest improvements after starting LDN?

Since starting LDN, I feel more in control of my pain management and my health. I continue to have fibromyalgia pain constantly but the intensity has decreased. My "fibro-fog" (thinking/remembering problems associated with fibromyalgia) has improved some as well. While having fibromyalgia means having "fibro-flares" of increased pain and tenderness due to overexertion, stress, weather, acute illness and other triggers--it's much more tolerable for the most part while on LDN. I've been able to do more traveling since starting on LDN. I've been doing more of my favorite hobbies since I've been feeling better. I've also been able to (and felt like) doing more volunteer work, which I love! On the whole, I feel that my pain management from taking LDN has been extremely stable. I feel more in control of my pain and my life again.

After taking LDN for six years, how are you doing now?

Even after six years, I still feel I am continuing to do well on my LDN therapy. Surprisingly, the amount of LDN that I take has not changed over time; I still take the exact same dosage as when I started. So far, they haven't suggested any changes to my dosing or timing, and I see no reason to make a change. This is what works great for me-though I acknowledge it is not the same for everyone.

What message would you like to give others with fibromyalgia about LDN?

I would love for every fibromyalgia sufferer and chronic pain sufferer out there to know the facts about Low Dose Naltrexone and the possibilities it has for chronic pain relief. I cannot tell you how much this one medication has made a difference in my pain relief and my LIFE. I want to spread the word about LDN so that those who don't know about it will learn from my experience. Believe me, it is so worth taking a chance!

More about Mellisa:

I am a loving wife of almost 30 years, the majority being while my wonderful husband was on active duty for 22 years, and we currently reside in Lexington, Kentucky, USA. We have two beautiful grown daughters who are amazing, and we just welcomed the arrival of our first grandbaby-girl!

I try to keep busy with volunteer work and hobbies. I have volunteered for the local Veteran’s Administration, helping with activities for those living in their Long-Term Care Unit such as Bingo Night & Super-Bowl parties. I've also volunteered for the non-profit charity for our troops called “Military Missions” where I helped with collecting and sorting needed items, filling boxes and mailing care packages for deployed troops. I also currently volunteer as an Alzheimer's advocate for the Alzheimer's Association. I mainly help with emailing our government leaders about important Alzheimer's information and anything else they need me to do. This is a very important charity for me personally, as my Dad had an aggressive type of dementia that took his memory almost totally away within a year; he passed away shortly after that. Now my Mom has severe dementia and Alzheimer's; I go as often as I can to see her and spend as much time as I can with her.

As far as hobbies, I enjoy baking, especially cupcakes: the best part for me is making the frosting and decorating them! I'm also learning a lot about photography right now, which is perfect because we just had our first grandchild and I plan on taking as many photos of her as I can!

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