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Sarah's LDN Self-Advocacy Pays Off In A Health Turnaround

Sarah Perry
August 15, 2019

About Fibromyalgia:

Fibromyalgia is a painful and complex condition. Symptoms often include: chronic pain throughout the body, sensitivity to physical pressure, fatigue, depression and/or anxiety, memory problems, migraines, and IBS. Around 5% of the population suffers from fibromyalgia, with twice as many women affected than men. Quality of life for those with fibromyalgia can be poor- the more disability from the disorder, the worse the quality of life. Patients report dissatisfaction with with existing medications used to treat fibromyalgia due to inefficacy and side effects. There is currently no known cure. Read more here.

About IBS:

Irritable bowel syndrome (IBS) is a chronic condition that affects the large intestine, and often includes cramping, abdominal pain, bloating, gas, and diarrhea or constipation, or both. The cause is unknown. Symptoms of IBS can be triggered by: various foods, stress, and hormones. It is associated with poor quality of life and can lead to depression or anxiety. Research indicates that people with IBS miss three times as many days from work as do those without bowel symptoms. There is current no known cure.

Sarah’s Fibromyalgia

Sarah, how did you know you had fibromyalgia?

I was in so much pain. I couldn’t exercise, even gently. Any kind of exercise hurt so much. Physical therapy wasn’t helping...it made everything worse. The pain was debilitating. That said, I endured the physical discomfort for the past 10+ years without seeking medical help...I just kind of “soldiered through.” However, after we moved to Alaska— a much colder and much darker climate— my condition really flared up and caused significant problems, forcing me to seek medical care. My primary care physician diagnosed the fibromyalgia.

Did you also experience fibromyalgia-related fatigue?

People wondered why I couldn’t run more than one errand in a day. Doing only one errand used to exhaust me. I would need a break of a couple of days before I could run any other kind of errand or go out again. That’s how severe the fatigue was.

What was your quality of life like at that time?

The pain takes so much energy from you, especially when it’s constant. But despite being so tired, I would still have trouble falling asleep at night, because I hurt so much. I couldn’t get comfortable enough to drift off. It was a really sad, dark time in my life.

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What treatments did you try?

My primary care doctor prescribed the well-known treatments for fibromyalgia. I couldn’t make it past a month on Elavil® because the side effects were miserable. We tried 2 or 3 other things that worked initially and then stopped working. My doctor was determined to get me to try Cymbalta® for at least 2 full months, but it was very hard because the side effects were awful. Also, those medications hardly helped the pain at all. I was taking non-prescription pain medications 2-3 times a day on top of the fibromyalgia medications. I knew that wasn’t healthy, but my pain was that bad, and there was no other way for me to get by.

the pain management specialist pointed out that the quality of the LDN research was good
How did you find out about low dose naltrexone?

I eventually received a referral to a pain management specialist who suggested LDN. He encouraged me to look it up and see what I thought. I didn’t find a huge quantity of research about it but the pain management specialist pointed out that the quality of the LDN research was good, such as the Stanford LDN fibromyalgia study. He also said he had seen positive results using LDN with other patients, and it was his best treatment recommendation.

What did you do next?

I called my primary care doctor to ask her about it, and she said she had never heard of it. She put me on hold to look it up and ask her colleagues. When she came back on the line, she said, “I would never prescribe this for you.” I was surprised, but when she referred to LDN as an opioid, I knew she wasn’t correct. Also, since nothing she had prescribed previously had worked well, I decided to rely on the recommendation of my pain management specialist and my own research.

On Day 3 of 2.25mg of LDN, the main pain in the lower half of my body was gone. The next week, I started 4.5mg of LDN. A day or two later, the rest of my pain (the top half of my body) was gone
What happened after you started LDN?

I divide my worst pain into the top half and lower halves of my body. On Day 3 of 2.25mg of LDN, the main pain in the lower half of my body was gone. The next week, I started 4.5mg of LDN. A day or two later, the rest of my pain (the top half of my body) was gone. It was just gone.

What do you see are the biggest changes in your life since starting LDN?

Oh my goodness! Because of LDN, I am now taking my kids to the park a couple of times a week. I have enough stamina and energy to run errands with them...I don’t have to wait for my husband to do them. I have so much more energy to play with my children and just enjoy being a stay-at-home mom again. I have the energy and strength to exercise again.

I have the time, strength, and energy to focus on the people and things that I love because I’m not constantly trying to fight the pain. LDN lifted that from me.
What are the things you can enjoy again now?

I’m walking on my treadmill every day and I’m doing Tai Chi, without it being excruciating and miserable. I can sleep better. I can take charge and do more. It’s been so good for me to be able to get out of the house and do more things independently. I have the time, strength, and energy to focus on the people and things that I love because I’m not constantly trying to fight the pain. LDN lifted that from me. I’ve gotten my life back and I’m so thankful. I feel strength and health returning.

How has LDN affected your fibromyalgia “flares” or exacerbations?

I still have to be careful how much I do, because the fibromyalgia is still there and I can still have flare-ups. But if I do have a flare-up now, it doesn’t last nearly as long and is not nearly as strong and debilitating.

LDN has made it possible for me to live my life the way I want to now...to be the kind of person I want to be, to be a great mom.
Did LDN improve your emotional/mental health as well?

Yes. Constant pain takes so much energy and confidence from you. Having my pain relieved by LDN has improved my mental health, for sure. I’m so much happier being able to use my body and strengthen it without paying the price later. LDN has made it possible for me to live my life the way I want to now...to be the kind of person I want to be, to be a great mom. It’s such a relief to have more energy, and not be spending most of my free time in bed resting, trying to alleviate pain. It was depressing being in pain all the time. I had one doctor suggest that the pain was “all in my head” because I was depressed. I said, “I think it’s the other way around. I think without this pain constantly being here, I’d feel so much happier.” Now I know for sure that I was right.

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Do you take LDN at night or in the morning?

I already had some sleep difficulties from fibromyalgia, so I was concerned about possible side effects on sleep. While I was doing my initial research on LDN, I read on ldnscience.org that one can take LDN in the morning if one experiences sleep disturbances. So I decided to take it in the morning from the outset to avoid any additional sleep issues.

How long has the relief from LDN lasted?

Other medications I tried, like Celebrex®, worked for about a month before they quit. I figured that if LDN’s benefits would last beyond a month, I would be pretty excited about it. It’s been about 7 months so far, and it’s still working really well. It’s just been incredible for me. I think LDN will be a good fit for me going forward.

What would you like to tell the doctor who refused to prescribe LDN for you?

I need to call my primary care physician again and tell her how amazing LDN has been for me so that she can think about this for other patients because...wow!

I really hope other patients with fibromyalgia will push past the “battle fatigue” and try one more thing in your long list...to give LDN a chance.
What would you advise other fibromyalgia patients who are hesitant to try LDN?

By the time LDN was suggested to me, I was so exhausted from trying and failing many other medications that I didn’t know if I could do it one more time. I think we can get “medication exhausted” and not want to try new things. But I’m so glad I tried LDN, because it ended up being so worth it. I really hope other patients with fibromyalgia will push past the “battle fatigue” and try one more thing in your long list...to give LDN a chance. To me, it seems so much better than the other more well-known fibromyalgia medications.

What would you advise fibromyalgia patients whose physicians balk at prescribing LDN?

It’s a hard battle to fight on top of the one you’re already fighting. If your doctor is not listening and being receptive to finding what’s best for you, I would first try working with them...maybe by saying, “I just want to try LDN. We’ve tried so many things that haven’t worked. Let’s just see if this works for me. If it doesn’t, then we can go back to your other suggestions.” If they’re still not willing to work with you, try to switch to a different doctor if that’s possible. Definitely try to see a pain specialist if you can, because I think they are more familiar with LDN. I’m so grateful to my pain specialist for knowing about LDN and suggesting it.

Sarah’s Irritable Bowel Syndrome

Sarah, you mentioned that LDN also helped with your Irritable Bowel Syndrome. Could you tell us about your experience with that?

I have had IBS for about 12 years. It was originally misdiagnosed as celiac disease, but later it was determined to be IBS-D (IBS with diarrhea). I would have terrible abdominal pain, cramping, and diarrhea...it was just miserable. Gluten and lactose were big triggers, so I’ve avoided those for about a decade. It’s really a hard diet to follow, but it’s the only way I could get those symptoms under control.

The improvement in my IBS after starting LDN has just been incredible!
How did you figure out LDN had improved your IBS?

I read on www.ldnscience.org that some other patients with IBS saw improvement after starting LDN. So after I had LDN in my system for a couple of weeks, I experimented...I bought a donut at the grocery store. I hadn’t had a donut in about 10 years, I think! I was so scared while eating it because I was thinking I was going to be so miserable tomorrow (after this gets through my system)...but I was totally fine the next day. The improvement in my IBS after starting LDN has just been incredible! While I need to continue to make good food choices because certain foods can affect my fibromyalgia symptoms, it’s been very mood-lifting and morale-boosting to be able to eat fun foods again and dine out without worrying, planning ahead, or stressing as much. My IBS is not completely cured, but LDN has taken my symptoms down so much. I just love that I have my life back. I have a more normal life now!

More About Sarah:

I grew up in South Carolina but have been taken all over the country by my husband’s work in the Air Force, and we currently resided in Alaska. I'm a 31 year old stay-at-home mom and writer who battled fibromyalgia and IBS-D for over ten years. I experienced so much relief after starting LDN that my quality of life has really improved. I hope, if you are sitting on the fence about it, you will take the plunge and try it. If you have a question about my experience, you can email me at [email protected]