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Naltrexone “changed life” of fibromyalgia patient

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My regular readers know I’m a big fan of using low dose naltrexone for fibromyalgia. I recently had the opportunity to write about LDN and how it’s becoming an emerging fibromyalgia treatment for Pain News Network. The story includes interviews with Jarred Younger, the researcher who conducted the first two LDN/fibromyalgia studies at Stanford University (more studies are on the way!), and Linda Elsegood, founder of the LDN Research Trust. I’m reprinting the story here with Pain News Network’s permission.

Low dose naltrexone is an emerging treatment for fibromyalgia. In early research studies, about 65 percent of patients experienced a significant reduction of symptoms.

The pain in Janice Hollander’s legs was so excruciating that she wanted to cut them off. Diagnosed with fibromyalgia in 2013, she’d progressed through the normal litany of prescription drugs doled out by physicians – Lyrica, Cymbalta, gabapentin, muscle relaxers and narcotics – all without finding relief.

Then she happened to catch an episode of the Dr. Oz Show where a guest discussed using low-dose naltrexone (LDN) as a treatment for chronic pain. A few days later, she convinced her doctor to write a prescription and took her first dose of LDN.Low dose naltrexone is an emerging treatment for fibromyalgia. In early research studies, about 65 percent of patients experienced a substantial decrease in symptoms.

“After about seven days, my pain lessened,” said Hollander of Michigan. “It lessened by 10 or 20 percent. That was huge! Even just that little bit of lessening was huge.”

After four weeks, the depression that had been stymying her for years lifted. At six weeks, she saw a noticeable increase in her energy levels. Her brain fog improved, and her memory returned.

Hollander has been taking LDN for about year now, and she’s probably one of its biggest fans within the fibromyalgia community. She regularly shares her success story in online support groups.

“I would say my leg pain is pretty much gone,” she said. “[LDN] has completely changed my life. I don’t know that I would be here today if it wasn’t for it. I don’t think I could go for another year in the misery I was in.”

Hollander still has fibromyalgia symptoms, but they are more manageable thanks to LDN.

A growing number of fibromyalgia sufferers like Hollander are finding relief using LDN. It’s an unusual discovery since LDN is best known in the addiction treatment community. The U.S. Food and Drug Administration approved LDN to treat addiction to certain opiate drugs in 1984.

Dr. Jarred Younger, who conducted two LDN/fibromyalgia studies at Stanford University, believes LDN has an anti-inflammatory effect on the brain.

“This is one of the few drugs that can do that in the brain because it crosses the blood-brain barrier,” Younger said.

In simple terms, the brain contains microglial cells that look for problems within the central nervous system. When they discover an abnormality, these cells release chemicals into the body that cause fatigue, pain, cognitive disturbances and other symptoms common among fibromyalgia patients. In a healthy person, these chemicals are intended to slow down the body, to force it to rest, so that it can heal from whatever has caused the abnormality. In fibromyalgia, some researchers hypothesize this normal central nervous system response gets activated and doesn’t shut off.

“It’s like the central nervous system thinks you have an infection when you don’t,” Younger explained.

Fibromyalgia sufferers often speculate about what caused their condition, and researchers have debated various triggers for years. Viruses (herpes, Epstein Barr, etc.), chronic stress, genetics, obesity, aging and pollution are suspects, but according to Younger, it could be all of these.

He believes LDN works because it calms the microglial cells and reduces brain inflammation.

Penn State University researcher Ian Zagon posits a different mechanism behind LDN. Zagon’s opioid blockade hypothesis surmises that LDN blocks the brain’s opioid receptors, essentially tricking the body into increasing production of natural pain-suppressing chemicals.

Theoretically, both hypotheses could be correct.

Younger’s two Stanford University studies showed LDN outperformed Lyrica, Cymbalta and Savella, the three drugs currently approved to treat fibromyalgia in the U.S., and it did so with minimal side effects. The most common side effects are headache, insomnia, vivid dreams and nausea – all of which usually disappear over time.

“Probably 65 percent of people get an appreciable decrease of symptoms,” Younger said.

But more research is needed to confirm these early findings.

Next year, Younger will conduct at least two LDN/fibromyalgia studies at his new facility, the Neuroinflammation, Pain and Fatigue Lab at the University of Alabama at Birmingham.

One study will try to parse out the most effective dose of LDN for fibromyalgia. Most LDN users are prescribed the drug off-label, between 1.5mg and 4.5mg daily. But some rheumatologists have shared anecdotal accounts that certain patients respond better to higher doses, ranging up to 9mg.

A second trial will pair LDN with dextromethorphan, a common cough suppressant that’s believed to work similarly to LDN.

But many fibromyalgia sufferers aren’t waiting for the research. They’ve found ways to secure a prescription and try LDN for themselves.

Linda Elsegood, founder of the U.K.-based LDN Research Trust, has helped thousands of people gain access to LDN. She credits LDN with stabilizing her multiple sclerosis. At her worst, Elsegood was wheelchair bound, had no control of her bowels or bladder and had lost much of her sight and hearing. After 18 months on LDN, she was able to walk again on her own and had a reversal of most of her symptoms.

After her remarkable recovery, she wanted to educate others on the benefits of LDN.

“I wanted people to know that there is a choice, if you’ve been told, like me, that there’s nothing else that can be done for you,” she said. “Look into LDN. Do your research. … It is amazing the number of people who’ve found LDN works for them for so many different conditions.”

In addition to fibromyalgia, early research has found LDN to be useful in reducing the symptoms of certain autoimmune and central nervous system conditions, including multiple sclerosis, Crohn’s disease, rheumatoid arthritis and others.

But few doctors know about LDN as an emerging treatment, so it can be difficult to get a prescription.

“Some doctors are too busy to read the information,” Elsegood explained. “Some will not think outside of the box. It’s not what they learned in medical school, so they’re not prepared to consider something that is alternative. Other doctors won’t prescribe it because there aren’t enough trials.”

Unfortunately, it’s unlikely that any of the major drug companies will ever study LDN because it’s an older, generic drug and little profit can be made from it. So it falls to innovative researchers, like Younger, who secure donations and grants to fund trials.

Patients often encounter doctors who refuse to prescribe LDN even though it has a proven safety record and a low risk of side effects. The LDN Research Trust includes a list of LDN-friendly doctors and pharmacies on its website. For those who can’t find an LDN-friendly doctor locally, there are physicians who offer phone and online LDN consults.

“My advice is to always research it yourself, and then address it with your doctor,” Hollander said. “And if your doctor won’t agree to letting you try it, then find a doctor who will.

“I would drive to Florida to get it if I had to. It makes that big of a difference. I just wish more doctors would prescribe it, and more people would find help with it.”

Click here for a list of helpful LDN resources.

Looking for other emerging treatments for fibromyalgia? Then you might enjoy these links:

Need energy? Why D-ribose may become your next favorite supplement

What you need to know about CBD oil and fibromyalgia

How to use medical marijuana without getting high

My own story of using low dose naltrexone for fibromyalgia

How going gluten free may help with fibromyalgia

 

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Comments

  1. Been trying LDN 4.5mg for a few days now my fibro has gotten worse to the point where I am now bed ridden again. I have a 3mo baby I now can’t breastfeed and husband had to stay home from work to care for the animals. I can’t even get out of bed sometimes to pee. I haven’t slept in 3 days. I’m stopping the LDN tonight. Dr said it will take 8-10 weeks for this to work. Atm, I can’t cate for myself, my baby, my animals, or go to work. I’d rather be in some pain and this bedridden feeling I’m having. I have a history of sensitivity to all the meds for fibro and depression and now this one is on the list. Has anyone else had this issue? I’ve had fibro for 30 years and its getting worse and I’ve lost my sense of smell, losing my sense of taste and some vision, worsening pain, weakness, insomnia, lost my sense of thirst. Autoimmune bloodtests come back clean but can’t get a neurologist to check for anything else and the past three Rheumatologists said its just fibro on the consult visit and won’t see me or anything after the consult visit. This LDN was supposed to be a last ditch effort treatment and its just as bad as the others. Anyone else have this issue and find a solution or find out why this is happening to them?

    • Hi Shannon, I’m sorry you’re going through this. A lot of doctors make the mistake of prescribing LDN at a dose that’s too much for someone who is sensitive to medications. For those people who are highly sensitive, it’s better to start at a dose of 1mg or .5mg and then work up slowly over a period of several weeks/months. More is not always better! If you still wanted to give LDN a chance, that’s what I’ve seen work in other people, myself included. I had to start at 1mg and work up, and even now, I only take 3mg b/c 4.5mg is too much for me. LDN is known for helping to modulate/balance the immune system, so that’s likely what is happening in your case.

    • What dose did you start at some people go back and downdose to find a dose that works sme people just take ..50 and it works they went higher and then came back down I hope you didnt start at 4,5 you have to work up to find the dose that works

  3. I’m currently weaning off Cymbalta (60mg 2x day). I’m down to 30mg qd and it has been a terrible journey. My suggestion to anyone considering Cymbalta DONT DO IT. It is a horrible drug.
    I’m seeing my MD tomorrow and plan to ask for LDN again. My pain is excruciating some days. Along with the rest of the Fibro problems, it’s a tough life.
    I just want to feel better and have at least 75% of my life back. I’m a very young 75y/o and plan to keep on for a very long time.
    Thanks for listening.

    • Cymbalta made me so sick it took a year to get off it docs now want to prescribe lyrica or gambepentin I said noway they said I want help but refuse help I said you take it and let me know how your withdrawal goes now on morphine till I can find someone to do a nerve block then want to go off low dose morphine as it is causing priblems and try “5, again my doc also tried ketamine which was great but made me too sleepy

  4. Hi how does this do for sleep?I cannot sleep because of Fibro,I have chronic pain also.Thesleep and fatigue are the worse.

    • LDN can cause insomnia when you first start it. That usually goes away w/in the first few days of using it. If it doesn’t, then people can switch to AM dosing instead of taking it at bedtime like is generally recommended. Once someone has been on LDN for a while, some people find that it improves their sleep. Others don’t see a difference.

  5. HELP!!!….
    I have been taking LDN for about a year now for Fibromyalgia. I take 1.5 mg. (can’t take anything larger than that because I can’t sleep otherwise along with it giving me anxiety) I am very sensitive meds including LDN apparently. I can’t take any of the meds used for Fibromyalgia, like Lyrica, Cymbalta, etc.
    My issue is I feel like sometimes the LDN is making my pain worse? It is strange if I try and exercise anything over doing a 30 minute walk I end up in terrible pain – and- or -if I try to walk two or more consecutive days the same thing, terrible pain! I have to do it every other day and no more than 30 min. and no other activity. Even with the exercise I still have daily pain ranging from mild to moderate to severe, fluctuating with these degrees throughout the day & night. It seems nothing I do helps. It is somewhat difficult for me to describe but it sometimes seems like the LDN helps some but then it also seems maybe it is making my pain worse at times.
    HAS ANYONE HAD THE FOLLOWING EXPERIENCE???
    Recenty I tried not taking the LDN,WHOA did I feel horrible!!!! I didn’t take it for two nights and I was in such horrible pain!!!! I felt like I had the flu only worse, body & bone pain something horrible, fatigue and diarrhea. I just wanted to die! Has anyone had this experience coming off of LDN? I thought there weren’t supposed to be any ill effects from LDN? I don’t know what to think. Is my fibromyalgia that severe? or is this from coming off LDN? (I’ve tried not taking the LDN one time before & the same thing happened) I took Aleve all day long which helped some during this but it was still awful. I went back to my usual dose of LDN and the horrible pain subsided…I just find it hard to believe and too coincidental that the fibro is that severe and but why would the pain would be that terrible just from not taking the LDN for 2 nights, it seems to me it is from not taking the LDN…Has anyone had a similar experience??? or any thoughts on this? I am really fearful of staying on the LDN for a longer period of time, what would it be like if I needed surgery and had to come off of the LDN. They say you need to come off of it about a week before surgery, in order to take the necessary pain meds….Fearful of the long term affects of LDN even though they say it is next to harmless…Need to know others input and possible similar experiences. Wondering if I am also extremely sensitive to this med (LDN) as well. (Like I said the LDN often seems like it is making my pain worse, I just don’t know how to expain it, it’s like it helps some of the day & then it does a reverse & I have intense pain, it just feels different from the pain I had before taking it) I hear so many with positive effects, why not me?
    I also take magnesium malate, vitamin B-100, Advil Pm (can’t sleep without it & sometimes this doesn’t even help), Curamin Extra Strength (recommended by Dr. Teitlbaum, a Terry Naturally product. I have recently started Ribose D (taking about a week now) not feeling anything from this either. It seems nothing helps me!!! I don’t want to live the rest of my life with this horrible pain & fatigue. I just don’t know what to do. My doctors won’t give pain meds due to the pain pill crisis, I can’t tolerate the other drugs used for fibro. I just feel like I am on my own, to suffer in this hell of pain. But in the same token I feel there has to be something out there that will help me, but what is it, cuz I am running out of options to take or do. I am spending a small fortune in supplements that seem to do nothing. I have also tried CBD oil, with no relief. Anyone out there tried the Quell device, it costs $250.00, & about $30.00 a month there after, I want to try it but feel I will be throwing my money away again!

    • I have spoken to my Doctor and she is willing to prescribe. The only problem II am having is the only dosage strength is 50mg. That’s is to stronge. What strength and dosage form are you able to find it in? Are you outside the United Ststes? Please let me know. Thank you, Beth (eeckstadt@yahoo.com)

      • You have to order LDN from a compounding pharmacy. It doesn’t come in doses lower than 50mg unless it’s compounded. The LDN Research Trust has a list of LDN doctors and pharmacists on their website. ldnresearchtrust.org

  6. Low dose Naltrexone also changed my life, unfortunately not in the same way. My doctor had me go off all of my other pain meds and after two weeks of pretty severe pain he prescribed me Naltrexone (5mg). Ten minutes after taking this medication I was feeling shaky and weird. Less than two minutes later I was in the back of an ambulance having seizures so bad I thought my muscles and bones were going to pop out of my body. I don’t remember anything from the first 6 days as the seizures were so bad that the doctors put me into a medically induced coma with life support. When I woke I learned that because of the seizures I had pulled and torn a lot of muscles in my back and both legs. To this day the doctors are so confused about what happened and I have been through so many tests to find out what compound I am reacting to. I have been told that I would probably have mini seizures for the rest of my life. So far I have these seizures almost every day and it seems that as soon as the most painful muscle pulls/tears start feeling better I have a bad seizure and the pain is worse than before.

    • Brenda, I can’t help but wonder if your problem is not from being taken off your other meds. Did they take you off cold turkey? That’s so dangerous. Were any of them anti depressants? Doctor’s have no idea what cold turkey from these drugs can do to you.

  7. I’ve been on LDN for over 2 years now and it been the best! I’m so much better then I was before and I’ve tried all the drugs out there and some more….

    Big pharma doesn’t advertise it because they can’t make any money selling it. Trust me if you haven’t tried it then you owe it to yourself to talk to your doctor

    • I’m so glad LDN is helping you! It really is a great drug for so many people.

  8. Hi…is it just me, I can’t seem to print the article, so that I can take it to my doctor? Any help or advice please. I am enjoying the newsletter…..it has been very helpful.

    • Sorry you’re having an issue w/ the printing plugin. I will make a copy of the article and email it to you.

  9. Can you take Naltrexone with Lyrica? I have been taking Lyrica since it was introduced,I ‘m certain I am addicted to it.I have tried to come off twice with bad results both times ,shivering with goosebumps but your burning up,so weak it put me in bed for 5-7 days I couldn’t fight any longer so I gave up and started it again,within hours I would start to feel ” normal “. I tried to go off because of prohibiting cost .I’m on Medicare and get in “dough-nut hole in June.I was diagnosed with Fibromyalgia in ’96,it has been a long, hard road,at one time I lost the will to live and I had a wonderful pc dr.I’m 68 now so there are other issues of being elderly.I cherish each good day and try to work through the bad and hold on to tight Thanks for this website and all of your insight

    • Yes, you can take LDN w/ Lyrica. Some people find that once they’re on LDN, they are able to get off of their other drugs or reduce the dosage. I have heard of people going through withdrawals from Lyrica and Cymbalta. It sounds like you will need to work w/ a good physician to help you wean off over time. I know some people are taking several months to wean off to minimize side effects as much as possible.

      • I belong to a Facebook Group “Cymbalta Hurts Worse”. They direct you on the safe route to taper off of your medications. Doctors have no idea of the dangers and have had many people who follow their lead end up in the hospital. You have to taper slowly. If you are on Facebook, please join this group.

  10. There is hope for those suffering with CFS/ ME/ Lupus – in fact all Auto-Immune diseases.
    I have been a suffer and as a Professional Nurse have worked with a doctor in this field for the past 20 years in KZN & JHB. Have seen many life changing successes. Check out the following web site including a book written for suffers and the public battling to cope day to day stresses which are depleting their immune system.
    http://www.chronicfatiguesyndrome.co.za/

  11. I am currently on Cymbalta. Can I take Naltrexone while I am still taking the Cymbalta? I ask because I started to wean my self off the Cymbalta, with my doctors knowledge and permission. She did stress that I “wean” myself off slowly so the side effects would not be so bad. After about month I was not taking my bedtime dose on Wednesday and Sunday, but was still taking the morning dose. My doctor and I decided to split my dose as I was having trouble getting to sleep, and she said that Cymbalta effected some people that way. I was also trying to wean off the Amitriptylin at the same time. After one month I was getting pretty depressed and anxious again. I have gone back on the full doses of both medications and have taken up nicotine again – I use the vapor, but I have not gone back to smoking. I still find myself quite anxious, and I hate to leave my home, even though I enjoy being out and about once I do go. After reading about how some have been helped so much on the naltrexone, I think I would like to try it, but if I can’t take my regular meds at least at first, I’m not sure I could do it, after seeing the results I got when I only stopped a few doses. My pain has been debilitating this Winter, and this is the first time since I started on the Cymbalta, that I have been this bad.

    • Hi Judy, yes, there are people who continue to take Cymbalta and other antidepressants while on LDN. Narcotics are the only drug category that’s not recommended. I’ve written quite a bit about Cymbalta’s withdrawal symptoms on my blog. I am not a medical professional, but I know that a lot of people are weaning off of it by opening the capsules and counting the beads. (Yes, it’s tedious, but it allows for even dosing each day.) Some people just aren’t able to skip doses. If you’re on facebook, you might want to join the Cymbalta Hurts Worse group – there are members there who are very knowledgeable about quitting Cymbalta. A lot of people on there are taking months to wean off to minimize side effects. Hope this helps!

    • Please, I beg you to not follow your doctors instructions for tapering off of Cymbalta. If you are on Facebook, please join the group “Cymbalta Hurts Worse”. These doctors have no idea how to taper you safely.

  12. That’s very misleading… You don’t really want to encourage people to go to their GP’s asking for Naltrexone, it’s Low Dose Naltrexone. What you’ve written is confusing.

    • It’s not misleading at all. I used the term “LDN” or “low dose naltrexone” throughout the article. I only used naltrexone when addressing the reader in my comment. Not sure what’s confusing.

      • How are people paying for this drug? I just got off the phone with the only compound pharmacist in town and he says it goes for 500$ a month and insurance doesn’t cover it!

        • I’m not sure why your pharmacist would be charging that. First, naltrexone is a generic drug from the 1980s – the 50mg tablets are super cheap! My prescription for compounded LDN costs around $25 a month. I think that’s pretty typical from what I’ve read from others. I get mine from Skip’s Pharmacy in Florida. They ship all over the country. Hope this helps.

          • I use Skip’s for my LDN. It’s even cheaper for me … around $60 for 3 months.

        • My doctor calls it into a local pharmacy that will make a low dose pill for me (3mg). My insurance company doesn’t cover it but it only cost me $22 a month.

  13. I take 50mg. a day of naltrexone for alcohol cravings. I was started on it at the same time as I was titration g up to 3200mg. Of gabapentin a day for my fibro pain. I have attributed my pain relief and increased energy and mobility to the gabapentin but now I’m wondering. Any info on how higher doses of naltrexone affect fibro?

    • I’m sorry, but I haven’t read any data re: fibro patients using 50mg of naltrexone, but what you’re saying does make sense.

  14. ““My advice is to always research it yourself, and then address it with your doctor,” Hollander said. “And if your doctor won’t agree to letting you try it, then find a doctor who will.”

    IF you ask your doctor, they write “drug seeking behavior”

    IF you change doctors to get it, you are labelled as “doctor shopping”

    You might want to stop telling “patients” to “ask their doctor” or “change doctors” because it just hurts the patients…

    • LDN is not a opioid. There is no reason for a doctor to label a patient as “drug seeking” or as a “doctor shopper” if they ask about trying naltrexone. It’s no different than asking if you could try Lyrica or Cymbalta or any other “normal” fibro drug.

      • This isn’t a “normal” fibro drug. It’s an opioid antagonist that is used to treat opioid and alcohol dependence. Long term use can change your sensitivity to opioids, and it’s not a pain medication.

    • why is dr shopping wrong? this is such bogus advice!
      If a dr wont listen or her you then damn straight find one that will. Your kind of thinking is very dangerous and will keep someone or yourself sick

      • It’s not wrong if you just tell the doctor that you’re looking for a PCP that “fits” for you, a doctor who really understands all we go through and someone you can build a rapport with, and trust. We don’t have to just settle for whoever they give us to. One doctor, who I’m told is a “chronic pain doc” told me the first time she sat down, “I can’t find anything wrong with you” WOW, nice to meet you?? Then she said, “Fibromyalgia isn’t real, everyone has it, I have it too!” Are you shi–ing me!!!! I was livid. She wouldn’t even refill my Tramadol I’ve been on for about 9 years, not even to ween off of it!! So I said I’d go to the ER and then she got scared or something and said, “don’t go to the ER, they won’t give you pain meds” (SO many words for her!!!! Uggggg!!) Right? 🙂

    • This is absolutely incorrect. You should be able to openly talk to your doctor about all options. If your doctor isn’t open to discussing them, it’s probably time to look for a new one. My doctor has explained all my options and is open to hearing what his patients have to say. Good luck to you.

    • Happy to help! Let me know if you have any questions or need info to print off to take to your doctor. I can point you in the right direction!

      • Hi Donna. Thank you so much for all your helpful information. I have been interested in the LDN but i have been on oxycodone for a # of years following cancer. I’m under the supervision of my oncologist. The oxycodone really helps me now with more than one pain source. Oh, and it’s the only med that helps my RLS. I’m wondering if LDN Is compatible? Thank you. Judy Misbach
        I’m wondering if I did this correctly.

        • Hi Judy, LDN is not a narcotic. It actually blocks narcotics from working. Some believe it stimulates the body’s own pain relieving mechanisms.

        • You can not take any opiate at all when on naltrexone! You’re body needs to be free from opiates for 10-14 days before starting naltrexone. Starting while you have them in your system will make you very sick. You’ll experience instant severe withdrawal symptoms immediately.

          • Not sure if that’s true. I’m currently on Suboxone, which is a combination of an opioid and naloxone. It works great for my Fibromyalgia, but finding a doctor to prescribe it is difficult, because It is used to wean people off of opioids.

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I’m Donna, a longtime newspaper reporter, health writer and chronic illness thriver! Fed Up with Fatigue provides weekly news, research, treatments and more to help you live better with fibromyalgia and/or Lyme.

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