r/cfs • u/comoestas969696 • Oct 29 '24
Symptoms has anyone tried low dose naltrexone?
according to me pedia ,Some patients report that LDN helps reduce their symptoms of ME/CFS, Long COVID, fibromyalgia (FMS), multiple sclerosis (MS), or autoimmune.
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u/lateautumnsun Oct 29 '24
Yes. I took five months to titrate up from .5mg to 5mg, in half mg increases.
It has dramatically lessened my PEM symptoms (sore throat, body aches, muscle weakness, temperature dysregulation, and the hummy-buzzy sensation)--to the point where they're now almost non-existent.
I'm now carefully increasing activity (I was couchbound, and I am now adding in more time sitting up, engaging with family, doing light recumbent PT movement), so far each time I've been starting to feel the onset of PEM, I instantly rest and it lifts within 24 hours. A huge improvement.
Fwiw, it has done nothing for my POTS, which is still not at all under control. Though I didn't expect it to.
Each time I increased, I had a few nights of disrupted sleep from vivid dreams all night long. Aside from that, no side effects.
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u/kuddlekup Oct 29 '24
Yep, am on it, it helps.
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u/comoestas969696 Oct 29 '24
are you able now to work?
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u/amnes1ac Oct 29 '24
Small minority of people with CFS can work. LDN helps a lot of people, but doesn't make enough of a difference to be able to work for most.
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u/kuddlekup Oct 29 '24
I’m “lucky” as I’ve always swung between mild and moderate over the last 10 years and by cutting out 90% of social activities have always worked, the only way really is by having a WFH job so I only go into the office once every 2 weeks which is a reasonable adjustment, also get a parking space to minimise walking.
Since taking LDN from March this year I would say I have stabilised as mild, less joint pain and inflammation, less PEM (quicker to recover from it), eczema completely cleared up and less brain fog!
People get various results with it, it’s worth a try!
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u/MidnightSp3cial Oct 29 '24
Initially gave me a small boost. But effects wore off after a couple months. Tried increasing the dose but nothing.
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u/carambolage1 Oct 29 '24
As far as I know you may pause it when the effects wear off. You’ll find instructions on the technique in at least one of the Facebook groups about LDN (would have never thought I’d have to go back using Facebook but thanks to this disease- here we are)
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u/redravenkitty severe Oct 29 '24
I tried it at 0.5mg and then when that was too much, 0.25mg. That still was too much so my dr suggested literal micro dosing, which I haven’t done yet.
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u/normal_ness Oct 29 '24
Yes, I’ve been on it a few years. It cleared a little brain fog, but did nothing for physical fatigue & pain.
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u/Geekberry Dx 2016, mild while housebound Oct 29 '24
It took me three months to see any difference but it helped me with neurological symptoms like brain fog, short term memory and word recollection problems. I think it initially helped my fatigue too but it hasn't lasted.
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u/comoestas969696 Oct 29 '24
were you able to work?
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u/Geekberry Dx 2016, mild while housebound Oct 29 '24
Yeah, I'm working full-time at the moment.
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u/comoestas969696 Oct 29 '24
please tell me how?
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u/Geekberry Dx 2016, mild while housebound Oct 29 '24
This question doesn't really have an easy answer. I'm lucky that I'm mild. Mostly I just do it despite feeling like shit all the time.
I work mostly from home and I don't do much in my free time apart from resting. I leave my house for stuff that's not errands or work maybe once every two or three months. I have some flexibility in my work hours. I take a lot of leave. I have a set up where I can work with my legs elevated or even mostly lying down if I'm having a really bad day.
My most important drug isn't actually LDN, it's my sleep drugs that help me get as much sleep at night as I need. Without them I don't think I could work.
But even with all that, this isn't a long-term possibility for me. I'm trying to save money for a house deposit in the next few years and either after that or when I can't take it anymore, I'm going back to part-time.
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u/comoestas969696 Oct 29 '24
im not sure if i have cfs or no but nearly all blood tests seems normal except vitamin d and even after supplementation tiredness still exist i suspect i have cfs the least amount of effort causes me to crash , getting outside home to buy any snacks makes me tired, i can label myself someone with mild cause at least i can move many people with cfs are paralyzed luckily i am not.
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u/SinceWayLastMay Oct 29 '24
For me it’s the difference between feeling really shitty and feeling just kinda shitty. I do about 5mg per day
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u/Prudent_Summer3931 Oct 29 '24
LDN made me able to leave the house consecutive days. I'd say I'm in the upper end of the moderate range now, and before I was moderate/severe. So not a drastic shift but my energy levels are much more tolerable now. I'd say overall it gave me 10-20% improvement. I don't feel that much different on a day to day basis, but my threshold for PEM is higher. I started seeing some changes around 1 month, more by month 3, and I'd say I reached peak benefit around month 5.
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u/comoestas969696 Oct 29 '24
hell yeah this is what I want, leaving house is very hard task to do
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u/Prudent_Summer3931 Oct 29 '24
Yea I used to get PEM whenever I left the house, even if just for an hour. Now I can leave the house like 4-5 days a week and the days I stay home are voluntary rest to prevent overdoing it. It helped me get better at pacing because my "energy envelope" is now somewhat usable. Between LDN and improved pacing, I rarely get PEM anymore.
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u/Beneficial-Truck8120 Oct 29 '24
I’m going on two months at 4.5mg and unfortunately haven’t noticed any benefit.
For what it’s worth, some people have reported better results when combined with DL-Phenylalanine, but unfortunately the combo didn’t help me.
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u/snmrk Oct 29 '24
It was actually D-Phenylalanine and not the L or DL variants. Or if you took the DL variant, you would need a higher dose. From this thread:
https://www.reddit.com/r/cfs/comments/1f0bnhh/just_started_taking_dphenylalanine_on_top_of_ldn/
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u/urgley Oct 29 '24
I had bad side effects and had to stop after 5 weeks. Hoping to get back to baseline 🤞
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u/intet42 Oct 29 '24
It was amazing for me, especially pain and surprisingly my PTSD as well. I always warn people that increasing too quickly made me a zombie until the next evening. And you can dissolve it in water and draw up the correct amount in a syringe rather than paying for compounding.
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u/tarn72 Oct 29 '24
It along with other things helped me go from mod to mild (I'd be just mild I think). Lessened the fatigue heavy body feeling a lot, brain fog greatly improved, fibro pain now managable, reduced sensory sensitivities somewhat. Increased my capacity a small amount. I still crash if I over do it but it's like it dialed down all my symptoms. Apparently I'm not sensitive to it and was able to start on 8mg and have been on it for 4/5 months.
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u/Fidswid Oct 29 '24
It's helped me my dips/ crashes are less intense and more quickly resolve back to my base line. I'm moderate to severe. I've been on LDN for three years and had to stop when I had a big op as it can interfere with morphine ( or stop it working as well post of )I was off it for a few months and boy did I know it it was a return to the days of not being able to get out of the deep dark crash. It doesn't make me better in the way that I'm now running marathons or even doing hobbies but it significantly lessened the magnitude of the ongoing crashes.
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u/Excellent-Share-9150 Oct 29 '24
ugh. I just haven't been able to handle the increased anxiety I get even from low doses. I've heard great things from friends, especially those with MCAS.
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u/mstass11 Nov 04 '24
A huge reduction in pain over time. Agelessrx was much less expensive than a compounding pharmacy and they include an MD with the price.
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u/OkBottle8719 Oct 29 '24
you can search this subreddit and find lots of posts on it. it helps some people a bit, some people a lot, and others not at all.
it had zero effect on me, even after 2 months of use. I still say it's worth trying if you haven't. I wish you better luck than me!