Naltrexone for Fibromyalgia User Reviews (Page 3)

• Anonymous
• November 5, 2019

"Low-dose naltrexone (LDN). I kinda happened upon the research of LDN by truly mere boredom and random web searching. I feel as though my doctor is not familiar with this choice of treatment for fibro, and so I was surprised when she actually prescribed it. I did seek the advice of the compilation of research out there for LDN to see if there are better titration schedules. I started 1.5 mg for 7 days and honestly only took the first 3 doses over 6 days, so every other day. Then I took doses 4, 5, 6, and 7 on consecutive nights. Tonight is my first time using the 3 mg dose. I feel it's too soon to truly assess the effectiveness of the drug, but I am already noticing a harder time falling asleep on 3 mg. It kinda gave me energy, so I might try a morning dose. Question though, has anyone gotten this as an approved method of treatment under their primary health insurance for fibro? I had to pay out of pocket for mine. I'm on MAWD, so I have primary insurance through my employer and Medicaid as a backup, but neither is covering it."

• Wit...
• Taken for 2 to 5 years
• April 24, 2021

"I’ve been taking LDN for my autoimmune condition, Graves’ disease, for over 5 years now at 4.5 mg, just recently down to 3 mg. I’ve never gone completely into remission this time around, though I’ve gotten close, my numbers have been all over the place. I feel like it may have improved my sleep a bit, but since it’s hard to see whether or not it’s actually helping my autoimmune disease, I’ve tried to stop taking it various times over the last few years and wake up at night a few hours in with body aches, restlessness, and stiffness every time I don’t take it or forget to take it. I’ve searched and can’t find anyone else who has experienced this. It doesn’t seem like a good thing that I’m experiencing these withdrawal symptoms when I don’t take LDN. If I take it when I wake up in the middle of the night, the symptoms stop. I don’t experience any negative effects while taking LDN. Are these LDN withdrawal symptoms?"

• kat...
• Taken for 1 to 6 months
• September 10, 2021

"I have tried the lowest possible doses of naltrexone. I have tried taking this drug many different ways. It gave me horrible diarrhea and cramping (lost 5 lbs in almost 2 weeks) and severe paranoid anxiety, like I have never experienced before. It did all of this yet never touched my pain. It was still there. This drug was worthless."

• SC...
• Taken for less than 1 month
• August 12, 2021

"I experienced some odd side effects: drowsy all day on a low dose, hard time working as all I wanted to do was sleep. No pain relief for fibromyalgia, instead, I woke up each morning with stiffness and pain in lower limbs to knees and neck and upper arms pain to elbow. In addition, I felt down most of the time, just depressed and blue. I also had diarrhea throughout the day. Bizarre side effects included the limb stiffness and unusually frequent sexual thoughts, not normal for me. My appetite was lower, and I slept longer at night. It was very difficult to work though with drowsiness all day, which made pushing through heavy fatigue difficult. I drove my car to do errands nearby and had trouble navigating and drove over curbs a couple of times. That scared me. So finally, with these side effects in a two-week period, I stopped taking the med. My side effects are unusual from what I have read."

• Sha...
• Taken for 1 to 6 months
• December 27, 2021

"I started this medication 12 years ago with chronic fatigue and managed it until recently, when I had to leave my job. I started on 0.5 mg and worked up by 0.5 every 10 days. I saw an immediate improvement, however, I’m now on 3 mg, and I feel like the energy is decreasing again. Has anyone had this? Does it mean I need to decrease the dose or increase higher than 3 mg? Thanks!"

• Jam...
• Taken for 1 to 6 months
• May 31, 2022

"I have slowly eased up to 4.5 mg of naltrexone to treat fibromyalgia associated with Chronic Inflammatory Response Syndrome (CIRS) disease from chronic mold exposure. As my dosage increased, I developed more diarrhea and neck and back pain. During this time, I also stopped gluten and was diarrhea-free during the first week of stopping the gluten, but I would have terrible diarrhea beginning again several days later. CIRS is a chronic inflammatory disease, so this may be contributing to the problem, but the naltrexone side effects of rapid heartbeat, diarrhea, severe anxiety, fatigue, depression, and agitation are all very real and scary for me. Because this is not an addictive drug, I will stop immediately. I’m surprised my doctor didn’t suggest going off of this drug (vs. all my other drugs) when I began to feel this sick with the very common and noted side effects of naltrexone."

• Kat...
• Taken for 1 to 2 years
• February 12, 2022

"Unusual tiredness that did not come on until the past 6 months that I could barely get out of bed. Motivation: gone. This will slowly sap you dry till you're so weary you don't know what from because it used to work. Slick drug, be careful as it brings on chronic fatigue."

• Mon...
• Taken for less than 1 month
• June 7, 2024

"Very good effect on pain and fatigue. From the very first day of starting on it! I am using Mysimba. This is the name of the medicine here in Norway. 8 mg/90 mg naltrexone hydrochloride/bupropion hydrochloride."

• Low...
• Taken for 1 to 6 months
• May 4, 2025

"I’m taking this for pain and inflammation. I developed fibromyalgia-type pain along with many other systemic issues from the COVID vaccine. I started at 0.5 mg and increased the dose up 0.5 mg every 2 weeks. The dose that works for everyone is different. 2 mg has been the sweet spot for me. I had bad flare-ups and headaches at 3 mg and had to go back down to 2 mg for relief."

• Win...
• May 16, 2022

"I have been prescribed Naltrexone 4 mg (have worked my way up to 4 mg slowly twice now) for fibromyalgia. I have epilepsy (controlled with Tegretol for over 35 years), POTS, hearing loss, and tinnitus. My experience with Naltrexone hasn't been positive. The first round, I experienced leg cramps and crackling pain (nerve pain I think), and the second time round, it's been more of the same, although now that I am at the 4 mg dose again, I am having pain (mostly nerve type pain) episodes all over my body (mostly legs, hips, arms, across the shoulders). This makes sleeping difficult, although I don't believe I am suffering from insomnia yet. I also do not notice any increase in energy, and I believe I have more stiffness in the morning time. Anyhow, I am going to stop taking it. I was wondering if anyone else has epilepsy and if such a low dose could react with anti-seizure meds!? Thank you for reading and/or responding. It's been enlightening reading people's experiences with this medication."

• Sar...
• June 18, 2020

"I'm a scientist, a sociologist, and a psychologist. I went to school initially for PharmD. I am in my 40s. I've been a lifelong athlete, and I was never one to drink, smoke, or use drugs. I have Hashimoto's, which has destroyed most of my thyroid. I get hemiplegic atypical migraines, which are increasing to the point there's no real treatment options left. I've also been recently diagnosed with Ehlers-Danlos and fibro. Tonight was my first night taking titrated LDN. Never again! It's 3 AM. I've never done drugs, but I imagine this is what someone feels like who does copious amounts of cocaine. I only took 0.5 mg. That's it. My muscles seized earlier. I've been sweating profusely. It's COVID-19 time, and if not for that, I would have immediately gone to the ER as my SVT is not abating. This has been one nightmare evening for me I refuse to repeat. I have never been an advocate for MJ until now."

• ajt...
• October 29, 2020

"It was fine for a few days taking naltrexone, but then, ten hours after I'd take it, I had crippling nausea, anxiety, was sweaty, and shaking. I thought I might have eaten something bad, so I rode it out. It happened the next night, at the exact same time as before. I began to suspect it. The same thing happened again at the same time. I told my doctor, and we stopped it. It was just 1 mg. This drug feels cultish. It's really hard to find someone to prescribe it. My rheumatologist wanted me to take it, but she said she couldn't write it. Why? And look into the trials done with LDN. One of the books about it tries to convince patients that testimonials are just as good as double-blind testing. That's not how science works. It supposedly treats a laundry list of things from cancer to MS. That's a red flag. Please research this. You'll find people without medical licenses prescribing it and people getting their ability to prescribe it taken away. It's a very suspicious situation."

• ljc...
• Taken for 1 to 2 years
• August 16, 2016

"Highly successful, got me off 90% of pain meds, couldn't live without it."

• goo...
• Taken for 2 to 5 years
• February 22, 2018

"Put my autoimmune condition into remission. Went from C-reactive protein over 200 to 17... life is finally good."

• Lor...
• Taken for 5 to 10 years
• May 15, 2018

"This has absolutely been a life changer! I could not live without it."

• hon...
• Taken for 6 months to 1 year
• November 7, 2022

"I use naltrexone for ME. Life-changing. No fatigue. No difficulty with information processing. No brain fog. Increased energy."

• lau...
• Taken for 1 to 6 months
• February 10, 2016

"I have been on naltrexone for 5 months, and it's not done a good job of helping with my pain."

• gre...
• Taken for less than 1 month
• September 25, 2015

"Chills, diarrhea, vomiting."

• Kim...
• April 30, 2021

"I am so happy my doctor prescribed this. I just needed to find the dosage that worked for me, and ever since, things improved tenfold."

• Anonymous
• November 28, 2009

"This did nothing to help my fibromyalgia."

• Mf3...
• Taken for 6 months to 1 year
• August 17, 2021

"Greatly reduced nerve pain. 4.5G notice positive effects after about 4 months."

• Crc...
• Taken for less than 1 month
• June 8, 2019

"I’ve stopped tramadol after 10 years for my fibromyalgia to start naltrexone this past Monday 6/3/19 and OMG."