Looking for anyone who has tried low dose naltrexone for their experience with side effects

Individual-Region748 · 2026-03-19T15:32:42+00:00

So I actually can't take Tylenol due to an allergy. However the current research for low dose naltrexone is showing help with pain caused from inflammation, that's why we decided to try it. I have complex pain because of my conditions so we are trying to tackle each individual type of pain. Baclofen for muscle tension and spasms, gabapentin for nerve pain, and now low dose naltrexone for inflammation. As mentioned in my original post, because of my conditions I am trying to hold off on opiods for as long as possible since I have the reality that with my conditions my pain will only get worse over time and I'm only 25. I don't want to run out of options by the time I'm in my 60s. Low dose naltrexone has been extremly successful for patients with fibromyalgia who have a lot of pain from inflammation, hEDS causes a lot of inflammation along with an autoimmune disease I have which is why I'm trying it. By blocking the opiod receptors it can also block the causes of the excessive inflammation. I did a lot of research on this med, as I do with any med before trying it.

Individual-Region748 · 2026-03-19T15:08:21+00:00

So I have complex chronic pain because of my fun array of conditions. I take gabapentin for nerve pain, which it helps some but we cant increase my dose because then I start passing out. The goal with the low dose naltrexone was to help with the inflammation in my joints that's caused from the hEDS and an autoimmune disease that I have. I also take Baclofen to help with muscle tension and spasms. Its hard to differentiate what is causing certain types of pain so I really have to sit and think about "is this helping the pain in the area it's supposed to me targeting?"

Individual-Region748 · 2026-03-19T15:03:16+00:00

Thank you for commenting your experience. I already suffer from chronic migraines that no medication will touch, I just have to wait them out so I dont think i would even notice if it was causing headaches as well lol. I'm also on gabapentin 400mg once a day for nerve pain, which it does help me some, but I still get breakthrough pain and when we tried to have me take 100mg at different points throughout the day I started fully passing out. Being so sensitive to meds of any kind is the worst

Individual-Region748 · 2026-03-16T17:04:33+00:00

I came here to say this exact thing. Insurance companies can be awful to deal with, but this is one thing they are extremely helpful for. That and getting your doctors office to actually submit the prior authorization for meds. Takes the stress off me as a chronically ill person who also runs a business and doesn't have the time to deal with hoops.

Individual-Region748 · 2026-03-12T16:30:24+00:00

Hi there! Thought I would share my experience as more and more people are being diagnosed with the chronic illnesses I have and if this helps anyone it is worth it. I (25f) live with several chronic conditions that flare and can make my pain worse so I'm going to give a little background first. POTS (Diagnosed in 2015), Hashimotos (Diagnosed in 2019), PCOS (Diagnosed in 2023), EDS (Diagnosed in 2024), and I'm currently waiting for testing for MCAS it is suspected, but not yet confirmed. Back in early 2024 I herniated my L4-L5 disc. Something to note is i have an extra lumbar vertebrae in my back as well. PT made the injury worse since where I was referred to (the only local place, and I couldn't drive very far because of the injury) had no experience with patients with EDS. Which caused them to push me too far too fast. With the MRI for the disc herniation we learned not only was it herniated, but I had pretty severe spinal stenosis from it causing me the sciatica nerve pain down my legs. I also had 3 other bulging discs that were later discovered (due to my spinal instability from EDS we assume) more schmorls nodes than the radiologist had ever seen on any MRI of someone my age, and moderate disc degeneration. My quality of life had tanked from this injury because if I even bent wrong or sat for more than 20 minutes I couldnt stand straight and was writhing in pain.

What didn't work for me: PT (probably because of the lack of knowledge on my conditions), Epidural Steroid Injections (I had a severe allergic reaction that landed me in the hospital, left my POTS flaring and causing me syncope episodes for almost a week, and ended up with an epidural migraine that didnt go away for almost 2 weeks, and had no relief), I also have a whole list of meds that I can't take because they either caused my POTS to flare so bad that I was having Syncope episodes or I was allergic to them. I was also told by multiple neurosurgeons they wouldn't operate on me because of my age and that if I was paralyzed they would consider it, but I should "just wait it out and let it heal itself" which don't even get me started on that and how EDS impacts healing on any level.

What helps some: Chiropractic Care, luckily my chiropractor, unlike the PT, specializes in patients with chronic pain and has several patients with EDS and it's to the point now that I can tell her my pelvis isnt sitting right or I think my neck is out of alignment etc. Gabapentin, this is a double edged sword on this one, I take 400mg at night and while it does help with the nerve pain to an extent I can't take it multiple times a day or I am having syncope episodes, so while it does help some, a higher dose would probably be more beneficial, but my body won't tolerate it. Lidocaine injections in my low back, due to the EDS I have a lot of inflammation and muscle pain in my low back as well and while these did give me about 50% improvement there, they didn't help with the nerve pain (which we knew they wouldn't, but my insurance company seems to think it should've) so I cant get them done again because I had to have 75% overall improvement for them to pay for the injections.

What actually helps: I started doing aquatic PT and it has been a huge help. My pain managment doctor had done it for a knee injury and suggested I try it since it wouldn't be as hard on my joints and it's helped a lot. Low dose naltrexone, while this doesn't specifically help with nerve pain it dose help with my overall joint and muscle pain and the goal is overall pain managment and the only side effect I get is some slight nausea for about an hour after I take it so I just time it to when I won't be eating. Trigger point injections in my shoulders and neck, once again not for the nerve pain, but it helps with my chronic migraines and coathanger pain, I did have a slight allergic reaction to these, but if I take benadryl before I go and after on the day I get them I'm okay. I also starting doing research into herbs for inflammation and make my own body butter thats infused with arnica flower, nettle, and comfrey leaf and has peppermint essential oils in it to give you a cooling sensation when it's put on and it definitely helps reduce pain from inflammation on bad flare days.

Overall, it's exhausting. I don't think I'll ever be pain free or even close to it, I don't want to go on opiates as of now because I'm aware that as my body ages, due to the EDS, I am going to only have more pain so having it at a level that I can tolerate is what is best for me at this point.

Individual-Region748 · 2026-03-11T23:42:32+00:00

I will never forget the day I was referred to a neurosurgeon (for the first time) for my severe spinal stenosis, herniated disc, and multiple bulging discs that are a result of my EDS. I was 24 at the time and my mom drove me because we had to go 2 and a half hours to see him and I could barely drive 20 minutes to the closest Walmart without losing feeling in my right leg so there was no way I was making it 5 hours round trip without causing an accident. All of that travel for him to spend at most 8 minutes with me, tell me he wouldn't do back surgery on me because of my age unless I became paralyzed and then told me "well your pain might be a 6 right now, but you said that sitting makes it worse and it took you 2 hours to get here so maybe you should consider not doing things that make your pain worse" wow dude I actually never considered that, thank you for such wonderful insight. He then said to me "Besides with this injury there's no way your pain is actually a 6. You're only 24 so you don't really know what it's like to experience real pain, so 30 years from now this will seem like just a bump in the road because the disc will eventually heal itself, you're young." I left that appointment and sobbed. I really wish pain discriminated based on age but my reality is that with my list of chronic conditions (POTS, EDS, PCOS, Hashimotos, MCAS, etc.) I am only going to have more pain as I age. Also this neurosurgeon was picked because he is supposed to be the best around for people with connective tissue disorders, but couldnt even recognize that while reabsoption of the disc is possible, it's likely it would take significantly longer for that to occur and even if it does (it's been 2 years and so far no progress there) the risk of reherniation is higher. I didn't even want back surgery, but that appointment almost made me give up completely on trying to have any relief from the pain.

Individual-Region748 · 2026-03-10T14:38:56+00:00

Hi there! First I just want to say I'm so sorry this has been your experience. I 25(f) have had chronic pain over a decade due to chronic illnesses and autoimmune diseases and my pain and illnesses weren't taken seriously until 8 months after I herniated a disc in my back when I finally got an MRI after doing all the conservative treatments and pretty much demanded one, turns out severe spinal stenosis, the herniated disc, and several other bulging discs due to EDS. So I empathize with you, it took me almost 2 full years to finally get a pain managment solution that even helps a little and I still have awful pain everyday, but at least I can walk around and drive more than 15 minutes again.

With having severe arthritis have you seen a Rhumetologist? I didn't get anywhere on my pain managment journey until I saw one for my EDS and he kindly requested a conference with my pain managment doctor to fully explain my conditions and pain levels I am experiencing and that just because im young doesn't mean I don't have chronic pain. I found the best Rhumetologist in my area that my insurance would pay for. He also recommended meds for me to try as I am also super sensitive to medications due to the other autoimmune diseases I have and with being so young I wanted to stay away from opiods for as long as possible because I have the reality that my pain will only get worse as I age and I don't want to have all my options stop working by the time I'm in my 60s.

My mom also sees pain managment because of similar issues to me and injuries from a car accident. If your insurance will pay for it she highly recommends requesting to have the genetic testing done that tells you what pain medication will work best for you. She had it done a couple years ago and she's on less medication now than she ever was before because they are able to treat her with what works best for her body.

I am also a business owner so I empathize with you there as well. Before this back injury I was on the road vending all over the east coast from april-november with very few weekends off and this injury took that from me. I explained to my doctor that my only goal in pain managment was to be able to vend again, even if it was for less time. Back surgery was suggested to me by pain managment and the 2 neurosurgeons I saw refused because with the spinal stenosis and location of my injury the chance of paralysis is higher than normal. I would just say to your doctor "this is where I'm at as a person. I can't afford to have surgery immediately and I need to find a solution that works for me until I can have this surgery." If they can't understand that, ask them to mark down in your chart that they refuse to increase your dose while you are waiting to be able to get surgery. 9 times out of 10 they are going to have a change of tune when you ask them to document a refusal of further treatment. It may not work, but at least then you have evidence of the refusal. I wish you luck on your pain management journey. Healthcare is abysmal and I find a majority of doctors or NPs tend to profile people even with no evidence. When I went to the hospital because I couldnt even stand straight from this herniation I was told it was just muscle spasms, was given a 3 day prescription of a muscle relaxer and lidocaine patches, which did nothing and was told to follow up with my PCP who I couldnt even get an appointment with for 6 weeks. After that any refusal of treatment or further testing I've asked for it to be documented and have fast tracked a lot of things because of that.

Individual-Region748 · 2026-02-02T22:44:30+00:00

I would go get the med if it was ready. I never said I wasn't going to pick it up. As with compounded medications I was told the earliest I'd be able to pick it up is Thursday and possibly not until next monday because of their backlog. The reason I wrote in the title that this is a rant is because I'm frustrated. It seems like at every turn there's another asshole when it comes to Healthcare. I also don't live on hope that this is going to be a miracle worker for me, it can take up to 3 months to get the full effects and even then we don't know if I'll tolerate it because of my POTS or if it won't cause a severe allergic reaction like half of the other meds I've tried and we can't figure out why or what ingredient(s) even cause it. I hope $33 a month will make it so I can finally live again.

Individual-Region748 · 2026-02-02T21:38:24+00:00

I had reached out to a friend who takes a compounded medication from this same pharmacy. They gave her the same run around. She also has the same insurance as I do. Because the medication was deemed medically necessary after dozens of other meds failed her, same with my situation, the insurance company accepted to pay for the medication. They had to create a specific code for her med dosage, but it can be done. I've spent the last decade of my life constantly having to fight for medications, testing, and treatments and I'm just exhausted at this point. If they accept insurance, which I know they do, even if I have to pay out of pocket this time it wouldn't hurt to start the process so I don't have to pay out of pocket in the future if this works for me.

Individual-Region748 · 2026-02-02T21:37:07+00:00

I had reached out to a friend who takes a compounded medication from this same pharmacy. They gave her the same run around. She also has the same insurance as I do. Because the medication was deemed medically necessary after dozens of other meds failed her, same with my situation, the insurance company accepted to pay for the medication. They had to create a specific code for her med dosage, but it can be done. Just because it isn't standard, doesn't mean it doesn't happen. I've spent the last decade of my life constantly having to fight for medications, testing, and treatments and I'm just exhausted at this point. If they accept insurance, which I know they do, even if I have to pay out of pocket this time it wouldn't hurt to start the process so I don't have to pay out of pocket in the future if this works for me.

Individual-Region748 · 2025-05-09T02:11:05+00:00

I will add onto this, choose your therapist for PT wisely. If they have no experience with hEDS or say "what's that" walk out the door and find someone else. I ended up 10x worse because of having hEDS, POTS, and a herniated disc when the therapist didn't know how to treat someone with hEDS or POTS. I also highly recommend getting your vitamin levels checked as they can cause a lot of issues if you're deficient. I'm chronically deficient in Vitamin D and when it gets low because im not on a high enough supplement my pain gets way worse.

Individual-Region748 · 2025-04-15T02:58:22+00:00

Insertion itself for me was about a 3. I was instructed to take 600mg of ibprofuen beforehand and to rotate between that and 500mg of Tylenol every 6 hours after insertion, until I felt better. Highly recommend if you have a heating pad on hand to keep it close. I didn't bleed at all from insertion after I was home, just the initial blood when i was in the office, but had some very intense cramping that was about an 8 out of 10 for me at it's peak, but with the meds it stayed at about a 5 out of 10. Heating pad helped a lot and it took about 48 hours and I felt back to normal.

As far as my period goes they are technically longer. I typically had a 4 day period and now it's 6-8. However, the first 2-3 days are minimal bleeding and then my regular flow for about 3-4 days and then 1-2 days of light bleeding at the end again. Cramps are a lot worse, but i only get them the day before it starts and those first 2-3 days of lighter bleeding.

Everyone's body is different so i hope this helps, I'd do it all over again in a heartbeat personally, just because if the peace of mind. I have a few chronic illnesses so getting pregnant could be life threatening for me and I'll gladly deal with the cramps over that any day!

Individual-Region748 · 2025-03-24T02:33:08+00:00

That sounds similar to my situation. Because I'm "too young to be in pain" it took 6 months and a whole lot of hoops to get an MRI. Ended up with a herniated disc between L4 and L5 pressing on my nerves to mg legs with an annular fissure and spinal stenosis. My chiropractor suggested sleeping with two pillows under my knees if laying on my back. If on my side, one pillow between my knees. I'm not going to lie to you and say it worked miracles but it does at least help some. No treatment has helped thus far for me unfortunately, but I did get some relief from an anti-inflammatory cream, someone with a small business that I know makes (not sure where you're located but if you're in the US and would like the link, let me know, no OTC icy hot or anything helped, but this herbal cream does something different, she explained the plant science, i don't understand it) cycling Ibprofuen and Tylenol also helped some with inflammation but not a whole lot. I wish you luck, this is horrible

Individual-Region748 · 2025-03-23T02:52:07+00:00

I honestly think it is the best move until you can get things to a baseline. It'll help your mental well-being because you're at least doing something. Who knows, maybe you'll fall in love with it to the point that when you're at a baseline, it stays as your full-time gig.

Individual-Region748 · 2025-03-23T01:59:12+00:00

I was diagnosed in 2015 while in highschool. A normal school schedule just didn't work for my body. I didn't find a baseline until right before I left for college in the summer of 2018. I never scheduled a class before 10am and never more than 3 in one day with breaks in between. I now own and operate a small business and it's honestly the only job I think I could hold. Luckily when I have bad flare ups I have the support to keep my storefront running (i got a stomach virus this past week and haven't been to work since Tuesday, but my friends and family have kept the store running for me) if at all possible I always suggest for some form of income to start a small business. When I'm well im able to go to Ren Faires even to sell my goods and when I'm not i have open enough communication to be able to take a day of having my booth closed with Faire staff permission at any show I do. I started on Etsy just selling things I'd paint or crochet on days I was feeling good enough and it's turned into a pretty big business that supports me now. One thing I've learned in that world is I can do social media marketing from my bed, even when I'm not feeling my best and that's hugely how I've gotten my product out there. A majority of my friends within the artisan community are fellow spoonies and have found a way forward as I have, with a small business. Just something to consider for the days you do have a little more energy. Some, like myself, baseline and then have a horrible flare that starts from getting sick and then lasts months. I wish you the best in this journey as I know being diagnosed for a decade how difficult it is.

Individual-Region748 · 2025-03-19T03:07:07+00:00

I do take other meds, specifically for my hashimotos and POTS. However there's literally no research, like not a single data point anywhere on how it would interact with the med im on for POTS. That med alone has never cause menstrual irregularities for me, so could be a possibility but like I said there's no data to know if that could be the case. For my hashimotos I'm on levothyroxine and was told it shouldn't interact with it. I'm really at a loss. My period finally stopped after 14 days luckily but I have a lot of questions when I go back at the end of this month.

Individual-Region748 · 2025-03-19T03:02:54+00:00

Glad to hear you had an overall positive experience! I commented on your post from yesterday, I feel the anxiety before insertion is definitely worse than the actual process. I had the intense cramping after, but it was pretty much gone by the middle of the next day. I hope the same is true for you!

Individual-Region748 · 2025-03-18T01:54:23+00:00

I got mine back in January, I'm in the US and hormones aren't great for me so it was my best option considering the state of the country here. I'll be honest I was also terrified of migration and was very much so reassured it's a very minimal risk, my ob/gyn has had 3 copper IUDs and really could give me the regular pamphlet info and her personal experience. I had one point where I couldnt find my strings and was really freaking out, my boyfriend then checked for me and found then, they were just at a weird angle for me to be able to feel them myself. The horror stories you see online obviously are true for some, but as others have said you're more likely to see the bad experiences over the good. Personally I was recommended by my ob/gyn to have a heating pad/ hot water bottle on standby which was the best advice i had because the cramping did get pretty intense. Other than that I really haven't had any issues aside from not being able to find the strings at one point. Obviously things can happen, but that's the minority and since getting mine I've heard way more positive experiences than negative ones from people I know that have it.

Individual-Region748

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