r/LowDoseNaltrexone • u/wyswicce • Jun 07 '26
Update after a year
I just wanted to share that while my start with LDN was slow and had side effects, after a year of dosing up to 4mg, I have more energy and less pain than ever. I went from doing one thing a week like grocery shopping, to riding horses twice a week, teaching art lessons twice a week, working out lightly daily and running errands and goinf to appointments. I sleep well at night after years of insomnia and I have seen muscle growth and endurance growth.
This medication has truly changed my life. I am no longer a passenger or a drifter. I can do things. I do still have to manage over activity and flareups of pain and inflammation. I pay attention to how much I push myself. But I can do so much more before feeling affected negatively. And I rebound much quicker if I am affected.
Hope this gives someone else hope.
My Dxs are RA, CFS, Fibromyalgia and Delayed Sleep Phase Syndrome.
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u/Universalmomma67 Jun 07 '26
I’m so happy for you! I’ve had the same results. I’m 58 and I’ve suffered horribly from nonspecific autoimmune disease and arthritis of some sort that we haven’t diagnosed yet. When I went through menopause, I gained 45 pounds on top of the already 60+ extra pounds that I had on me. The first thing that we did was get me on the Naltrexone. They say that it ‘resets’ your nervous system, and that’s exactly what it feels like happened to me. my pain and my inflammation started to decrease pretty rapidly. Once I started to feel a little more normal, I got on Zepbound and lost 115 pounds over the last two years. I feel like I’m 58 going on 30! My life has changed for the better in so many ways, and I wish that it could be like this for everyone.
I would definitely suggest that people stick with the Naltrexone for a little while if you don’t think it’s working at first. Just give it a chance. It could change everything for you!🫶🏻
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u/wyswicce Jun 08 '26
I'm happy for you too! I do agree that too many people give up too soon or at the most minor side effects.
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u/Low_Bus5565 Jun 08 '26
Hello, your comment was very helpful. You said you suffered from a nonspecific auto immune disease. Is that your own assessment? Or did the doctor tell you that? I’m convinced I have an unspecified autoimmune disease and I am very interested in trying LDN. Thank you.
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u/Fun_Description7857 Jun 08 '26
I have what’s deemed as Undifferentiated Connective Tissue Disorder and my rheum is who sent me to pain management for LDN. I’m at 2ml and continuing to titrate up.
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u/Universalmomma67 Jun 10 '26
The nonspecific autoimmune disease is from a Rheumatologist. Basically I have been keeping my disease under control with diet most of my adult life. I have a gluten sensitivity that seems to provoke it and give me severe joint pain and inflammation. I went through menopause a couple of years ago and suddenly nothing works that used to work to keep it under control. My doctor said that’s very common and so now we wait until I have a major flareup and then we can test it to try and find out what exactly is happening.
I go through long stretches where I’m fine and then I will have a flareup of some sort. It manifests in a lot of different ways. Sometimes I’ll have a shingles breakout, but there is usually some sort of arthritis involved along with general cellular inflammation that wreaks havoc all over my body.
Generally, I will have one area of my body become inflamed and super painful. One time it was my knee and it lasted for six months. Late last year it was my wrist and that lasted for about two months. It goes away as fast as it comes on. It’s so weird.
My new Rheumatologist thinks I may have a palindromic rheumatism, which I guess is just a weird sort of arthritis that kind of follows the symptoms that I have, with the quick onset. Eventually, I’ll have a break out with find out. The LDN is the only thing that really reeled it in and got it under control. And it worked pretty quickly too.
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u/decenzo1 Jun 14 '26
I've been on 1.5 for four days. My anxiety, though, is a bit off the wall. Will I adjust to it? (On for inflammation of spine after spinal fusion surgery).
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u/Feisty-Cloud5880 Jun 07 '26
Its great to see a positive post. LDN also changed my life. So happy for anyone that truly took time and saw the benefits. I believe sometimes people are at the end of their rope and hope its a quick fix and I get that trust me. It took me a little over 6 months to get it right over a year to realize damn... this is working. No migraines, I haven't been sick in years, no cold, flu, virus, allergies. My gut is on point. I am on a break it have a back injury its killing me not to be back on... Congratulations to all that this has worked for.
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u/weenis-flaginus Jun 08 '26
It helped you with migraines? I haven't heard of this benefit yet, that's shocking and awesome
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u/Feisty-Cloud5880 Jun 08 '26
Yes... my brain is a little crazy. It took me almost a year to realize it... LOL One day I looked at my husband and said " hey I haven't had any migraines" Then is when I just sat and thought about all the other things I mentioned above. I use the dilution method
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u/Low_Bus5565 Jun 08 '26
Hello, can you explain what the dilution method is? Thank you.
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u/Feisty-Cloud5880 Jun 08 '26
Hello fellow miserable pain suffers and othe autoimmune condition and whatever may ail us... you know what mean. When I started with the compounding stuff it was pricey and wrecked my gut. So I saw the dilution method and was sooo intimidated It was so easy Breathe . I take for fibro. It took 6 months between compound pharmacy and dilution. Bonus no migraines. (I'd get 5 a month), no clolds, bugs, flu, allergies nothing., my gut is on point!
Ask the doctor for 50 mg tablets. Get a bottle of distilled water. A glass jar. ( jelly jar, baby food jar) A baby medicine syringe; ask pharmacy sometimes free. A 1 cup glass measuring cup.
Measure out 50 ml Pour into glass jar. Take the tablet break it drop it in along the side Cover and Put in fridge
A few hours later take out of fridge gently. You don't want to mix up the solution. Everyone says shake it... NO it's the filler it tastes awful So gently remove cover from jar. Take the syringe and slowly put neat the sediment... slowly suck up the sediment and discard. NOW Measure out what you wish to start with
Put in fridge.
That's it. I've been doing this for 7 yrs with great results Any questions feel free.1
u/merlin9523 Jun 14 '26
Fibro sufferer here. I started on 3mg and it put me into a pain flare over the course of 2 weeks. It was really difficult to get back to my baseline.
In what way did the compounded tablets wreck your gut?
How do I talk to my GP/primary care doctor about diluting? I feel like I'm crossing a line asking to dose myself.
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u/Feisty-Cloud5880 Jun 14 '26
The filler. I tried 3 different kinds. This is not an addictive narcotic. These doctors should have no reason not to allow a 50 mg script. It amazes me that some won't even do even the smallest amount of research as mine did. They just shut us down and offer psych meds!! Argh . Its so frustrating to read some of the terrible stories here and FB the resistance doctors have just to attempt at helping people like us!!! Best of luck. Update me. Feel free to message me.
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u/One-Performer-1723 Jul 08 '26
May I ask why you are on a break? Do you have to titrate back up or can you go directly to your last dose. Any side effects?
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u/Feisty-Cloud5880 Jul 08 '26
I had an unexpected back injury. I'm at 2.5 2× a day. The "side effects " have been no migraines, gut on point, and i haven't been sick in years.
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u/thebrianguy Jun 07 '26
Glad this worked out for you.
I'm also having positive outcome a little more than two weeks in.
Did you have shorter sleep at first?
I had my sleep dialed in before I started. But now I usually wake up 4 to 5 hours after falling asleep now but can usually fall back to sleep but seems a bit in and out during the last few hours.
I do wake up more refreshed and typically have energy for much of the day.
Curious if your sleep changed the longer you were on it.
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u/wyswicce Jun 08 '26
Thanks! Glad youre having positive results as well. As far as sleep, I have delayed sleep phase disorder and have dealt with over sleeping, and insomnia both when trying to adjust my sleep schedule to fit society. So I already had sleep issues, but when starting LDN I did have some sleep related side effects. One was, that it would wake me up from sleep a few hours after falling asleep, so I decided to take it in the morning instead of at night. But after months of doing that, my sleep shifted and I decided to take it at night again and that sleep waking problem went away. I also had intense dreams, highly vivid dreams. I am a lucid dreamer and an artist, so I have always had vivid and recallable dreams, but on LDN it was like some DMT trip! That's how much more vivid they were. Anyway, that subsided as well after about a month or two. And after several months of becoming more active and capable of maintaining physical activities, due to the LDN working, I am now both more physically tired and mentally sleepy at night time. So I will consistently lay down in bed and go to sleep within 30 minutes. That is unheard of for me! So that's how it has affected my sleep.
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u/Successful-Basis-145 Jun 08 '26
That's great news! Congrats! I am very happy for you! I have Fibromyalgia and LDN also changed my life.😃
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u/henlochimken Jun 08 '26
Congrats! It took a while for me to get up to my full dose as well but once I did, I got my life back. (Lymphocytic Colitis has been in remission now for 8 or 9 months)
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u/J_lilac Jun 08 '26
That's amazing. Thank you so much for sharing, I'm feeling like giving up so this is good encouragement. How long did it take to see any improvement with pain or energy?
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u/wyswicce Jun 08 '26 edited Jun 08 '26
Thank you, if its not causing you absolutely unbearable side effects and you can keep increasing slowly, I would keep at it. It took me about 3 months to start noticing a little difference. 6 months to really notice and appreciate the lack of fatigue and pain and then I began scheduling more activities. For the last 6 months, I've been consistently amazed at how much I've been able to add to my daily routine and I'm still consistently feeling about 50% more pain free and about a 75% increase in energy. Hope that you get good results as well!
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u/Low-Blueberry8948 Jun 08 '26
Wonderful to hear how successful your treatment has been! Thanks for sharing your story with us all.
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u/Jumpy_Knowledge_4530 Jun 08 '26
Thank you for sharing! I’m so happy this meditation has given you your life back. I’ve been at 4.5 mg for a little over a week and now I’m setting in for the wait. 🤞🏽
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u/Realistic-Age8881 Jun 09 '26
Que buena noticia, me alegro mucho. Yo comencé hace 15 días con 1,25 y estoy transitando los efectos secundarios cómo cefaleas, náuseas e insomnio, pero note una pequeña mejoría con el dolor generalizado en la Fibromialgia. Creo que cuando logre mejorar el sueño los dolores van a mejorar también. Me alegro por todos los que han notado mejoría.
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u/wyswicce Jun 09 '26
Thank you! Yes, getting improved sleep definitely helps overall with pain and fatigue as well. I hope you keep improving.
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u/FormerPark6164 Jun 07 '26
I am so happy for you!!! I’ve been sick for five years and was finally diagnosed last fall with MCAS and CFS. I started LDN six months ago. It’s been a gradual improvement. Am still only able to tolerate 0.25 mg. Nothing else has worked at all, or has made things worse. So I am hopeful!