Naltrexone for Fibromyalgia User Reviews

• Monika
• 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."

• Katie
• Taken for 2 to 5 years
• January 29, 2024

"This is a wonder drug. I was titrated in with drops. At two drops, one-tenth of a ml, I felt a wave of good feeling. It passed, but I knew then it was going to work. I take one gm now every day in the morning. Fibro pain lifts for the whole day, comes back around 8 pm or so. No idea why anyone would take it at night, you would sleep through its effects. The worst part is finding a doctor who will prescribe it. I have also noticed a definite improvement in gut issues, an unexpected bonus."

• Holden...
• Taken for 1 to 6 months
• June 20, 2023

"I started at 1.5 mg per day which gave me migraines every day within a few hours of taking it, plus nervous tension increasing every day until after 10 days I had to quit as my body was like a clenched fist. A week later I tried again on 0.5 mg which was just about tolerable. Still side effects of nervous tension, anxiety, and crazy lucid dreams every night. I felt no benefit so after 6 months quit. For the next ten days, I felt wiped out with fatigue, then after a month suddenly felt very spaced out and haunted by feelings of doom and dread, agitated, afraid to be alone with my anxious thoughts, and scared of the slightest thing, unable to relax or focus on any given task. Three years later I am still suffering these constant debilitating symptoms which only started the day I took naltrexone, and now consulting a psychiatrist to hopefully reverse whatever this drug did to my brain. I wish I’d never touched this drug which can make you feel so terrible, and in my case, I suspect permanently."

• Anony...
• Taken for 1 to 6 months
• March 7, 2023

"I was prescribed LDN at a low lose of 1 mg. It was one of the worst things I ever did to my body! I suffered extreme depression and suicidal thoughts on it. I couldn’t feel happy and didn’t know why. It never seemed to help my pain, but I became dizzy, extremely fatigued, and unable to live my life. I started having heart episodes while on it. Getting off it was one of the best things I ever did for my health."

• honey...
• 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"

• Jamie...
• 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."

• Winnie
• May 16, 2022

"I have been prescribed Naltrexone 4mg (have worked my way up to 4mg slowly twice now) for fibromyalgia. I have epilepsy (controlled w/ 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 second time round it's been more of the same although now that I am at the 4mg 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 experience with this medication."

• Kate
• 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 til your so weary you do t know what from bc it used to work. Slick drug, be careful as it brings on chronic fatigue."

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

"I start this medication as 12 years with chronic fatigue and managed it until recently where I had to leave my job. I started on 0.5mg and worked up by 0.5 every 10 days. I saw an immediate improvement however I’m now on 3mg 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 3mg? Thanks!"

• katie
• 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 & 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."

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

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

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

"I experienced some odd side effects: drowsy all day on 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, 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."

• 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."

• Withd...
• 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, but 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 withdraw 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 withdraw symptoms?"

• Idaho...
• February 21, 2021

"LDN (low-dose naltrexone) has changed my life in almost every way! Cured fibromyalgia, rheumatoid arthritis, and Cushing's disease! No more chronic pain, fatigue, or weakness. There’s no detectable testing as far as blood work and was severely disabled for over a decade on multiple RA meds. LDN does not just treat, it cures!"

• Jillzie
• Taken for less than 1 month
• December 28, 2020

"I cannot believe how this med naltrexone has helped my fibro. I've tried many meds and always have side effects. The only side effect I have with this is a bit sleepiness but I take it at night. I'm still on a starting dose of 1.5 but AMAZING!!!!"

• Rapelje
• Taken for 6 months to 1 year
• December 15, 2020

"In response to BP, I’ve learned that Naltrexone is most effective at lower dosages for Fibromyalgia, but the smaller dosages have to be compounded individually. Most towns/cities have compounding pharmacies or hospital pharmacies capable of compounding for you. My ‘script runs about $45 for 90 pills. I started at 0.75 mg for a week, 1.5 mg for a week, then 3.0 mg, and finally, 4.5 mg. By increasing it gradually over a month’s time, I avoided much of the “new med” issues. The doc said we could go up to 9 mg, if necessary. I can’t take opioids nor narcotics, so Naltrexone has been a Godsend for me. I have Lupus, Fibromyalgia, and severe arthritis in my neck. Naltrexone is the only drug that has worked - and has worked without the nasty side effects of other drugs. Hope this info helps!"

• Bina
• Taken for 1 to 2 years
• November 29, 2020

"I have suffered from fibromyalgia and chronic fatigue syndrome for over 15 years. I tried so many different medications in that time, none helped. Then I was prescribed low dose Naltrexone by a specialist. It helped immensely, I felt better within two weeks. I was able to get up on the exam table without a thought. Before any exertion at all was difficult, painful, and would leave me sore and exhausted for up to a week. I feel almost normal now. My dose is on the high end for low dose at 5mg, and I have to get it at a compounding pharmacy (just Google and call). My doctor said it works for about 50% of patients. I suggest reading up on the mechanism of action before asking for a prescription. In short it stimulates natural endorphins and has a mild anti-autoimmune effect. It only stays in your system for four hours. Always check for drug interactions. Good luck!"

• Nutmeg
• Taken for 1 to 6 months
• November 25, 2020

"I tried naltrexone at a low dose of 4.5 mg dose years ago for fibromyalgia, and it had no effect on my pain levels. But at a higher dose (I started with 24.5 mg and now take 50 mg) it is extraordinarily effective. I'm thrilled with this result, but I worry about the long-term effects, so I do not plan to take it indefinitely. The side effects - energy, a spacey feeling - I find pleasant. But this also makes me worry that perhaps this is just another painkiller, and that I'll build up a tolerance and be worse off when I try to wean myself off it. It's promoted as safer and non-addictive, but not enough is known about it yet for those claims to be trusted. It perplexes me that naltrexone is an opioid antagonist, but it feels slightly like an opioid to me. So I'm trilled to have relief from the pain, but I proceed with caution."

• BPano
• November 18, 2020

"I've had Fibromyalgia for about 7 years. I've tried everything and had all but given up. I happened to see info online about LDN (low dose naltrexone). I asked my doctor about it and she wrote a script but said it probably wouldn't do anything. But I insisted...desperate to try anything. However, it was for 1/2 of a 50mg tablet once per day. I felt like I had done a gram of cocaine. 2-3 hrs of sleep per night, major anxiety, heart racing etc. Couldn't focus, hands shook etc. I stuck with it for one week when I realized, my pain had dropped SIGNIFICANTLY for the FIRST time in about seven years. Thrilled at he results I had to figure out how to continue the medication but get rid of the side affects and get some sleep. I called the doc to ask what I could do as the online info said it said LDN should be 1.5 mg. She said it only came in 50 mg and I'd have to get the suggested low dose from a "compounding" pharmacy. I have no idea how to do that. Can anyone help?"

• Di724
• Taken for less than 1 month
• November 12, 2020

"I just started low dose naltrexone 1.5 for Fibromyalgia (FM) I immediately saw a difference. No more body pain. At first I thought could I just be having a good week without much pain . But after two weeks I can't believe I good I feel. For 6 yrs I was in pain everyday. I took motrin everyday, until I had an AFib episode. Now I can't take any NSAID's. I'm so happy my doctor prescribed me this. I feel like I'm 40 again. I'm now 54 and I suffered for 6 yrs not know what was wrong with me."

• 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 1mg. This drug feels cult-ish. 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."

• Sarah
• 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 .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 evenings for me I refuse to repeat. I have never been an advocate for MJ, until now."

• MJano
• May 21, 2020

"LDN saved my life. I spent years thinking I just had bad depression & PTSD thanks to all the trauma. At 25 though, I got hit with a wave of intense brain fog. I couldn't read a paragraph & retain the information, leaving the oven on, front door unlocked, driving my marriage into the ground because I wouldn't remember conversations, getting lost in the grocery store, had to withdraw from my college classes. It was this bad for nearly a year. Getting the Fibro diagnosis only tanked my morale. I felt like an 85-year-old with dementia & have a disease most people think is BS. Yay! I've been on LDN for 3 months now & found those 50 IQ points I had lost in the fog. I'm no longer an elderly young person! I'm reading books, back in school & getting 100% on assignments. I'M BACK & the only change I made is LDN & while I never cared about the fibro pain ('pain is weakness leaving the body, oorah!' - my favorite drill sergeant) the flare-ups are less intense, shorter, & easier to manage."

• TAS
• March 28, 2020

"I have been taking Naltrexone LDN for fibro for about 2 years now. The difference is amazing, like a miracle. At 42, I felt like I was 90. My body was just inflamed and in constant pain. When I moved, everything felt tight, sore, and painful. My inflammation was very high and my doctor put me on 9mg of LDN to start. I was at that dose for about 9 months, and my inflammation was still very high, and I was also still struggling to lose weight. My doctor upped the LDN to the full dose of naltrexone at 50mg to help with weight loss, and it did. Between the 9mg and 50mg, I lost 30lbs. However, the 50mg dose was a little too high for me as it made me so sleepy. So, I dropped it down to roughly 32mg, but I take it in split doses of 16mg, 12 hours apart. That has proved to be my perfect dose. I no longer have any body aches or pains. I wake up feeling 20 again, and the naltrexone gives me energy throughout the day. I also have hypothyroidism, and the lack of energy had been a huge problem for me as well."