I’ve been taking low dose naltrexone (ldn) for just over a month at this point and I wanted to share an update on how it’s been going thus far. I started taking ldn because I tried everything else in an attempt to feel better. At my last PCP appointment, I told him I’d be trying ldn and at the end of the appointment he remarked, if the ldn doesn’t work, we’ve tried everything he can think of.
The LDN Therapy
My therapy was to titrate up from 1.5mg to 3mg to 4.5mg. I have now been on the 4.5mg for a couple weeks. The uses for ldn are expansive but the short list that applied to me was sleep disorders, anxiety, depression, migraines, Myalgic Encephalomyelitis, and Hypothyroidism. My main concern, the one negatively impacting my every day, Myalgic Encephalomyelitis is what brought me to ldn.
Background
Myalgic Encephalomyelitis (ME) is better known as chronic fatigue syndrome (CFS) and most recently has been given the name systemic exertional intolerance disorder (SEID). I first heard of ldn as a potential therapy on the Stuff That Works forums. I joined looking for answers. And that’s where I’d found ideas of things to try. LDN has been the number 1 therapy as reported by members with cfs.
LDN Effects
It is also reported that it can take a few months to see maximum effect. I can say with near certainty that I have experienced positive effects. I’ve slept through the night a few times and it’s been years since I’ve been able to do that. I also feel more alert, less brain fog, and even a slight reduction in fatigue some days. My pain has been well controlled for a handful of days. All things I hadn’t experienced in a long time.
On the flip side, I’m also experiencing night sweats and vivid dreams. That’s affecting my sleep in a different way than I am normally affected. I am hanging on to hope that it will pass once I’m used to this dose.
Everything Else I’ve Tried
I have hope, something I haven’t had in a while. I’ve been disappointed so many times before. I start to feel the slightest bit better whenever I start a new therapy. It fades quickly though. Thoughts wondering whether or not it’s all in my head or just not a good fit creep in. I’m trying to keep my expectations under control because of those experiences. For those curious, I’m currently also on Lyrica, Cymbalta, Buproprion, Levothyroxine and an oral contraceptive. Things are certainly better than it was before I started taking an active effort to feel better.
Every so often I check in to the Stuff That Works CFS forum to see if anything new has joined the list. That inspired me to log everything I’ve tried thus far here to share with you.
- yoga
- losing weight
- veganism
- no soda
- lexapro – no effect, discontinued
- celebrex – no effect, discontinued
- meloxicam – no effect, discontinued
- cymbalta
- lyrica
- adderall – have been off of due to shortages
- levothyroxine
- buproprion
- and now, low dose naltrexone
The Hard Stuff
I’ve been in deep waters of depression for so long. I wasn’t aware how bad my outlook on life had gotten. I feel a heavy sense of guilt for not doing better at life. Not contributing, not being productive, being a burden.
I don’t know why I hurt every day. After breaking my brain trying to read everything from personal blogs to medical journals, I have some idea. There are theories as to potential causes of CFS.
I am painfully fatigued. I literally cannot force my body nor brain to do… anything. I can’t even properly sleep. I’ve tried energy drinks and caffeine pills and melatonin, aromatherapy, guided meditation, and OTC sleep aids.
This has been going on for so long that the isolation is painful. I feel the loneliness. It’s unpleasant to say the least.
I had a moment of clarity last year that pushed me to seek help. I now regularly see a team including a Psychiatrist, a Therapist, a DO for ADHD, a DO ldn specialist, and my primary care is also a Doctor of Osteopathic Medicine.
Conclusion
I’m sticking with everything that I’m currently on for now. Feeling slightly better is still better. And that’s an improvement from where I started. I think a lot of what will make continued progress is therapy. Cognitive Behavioral Therapy has been helping. There’s just a lot of rewiring my brain needs right now. I’m aware of that though. So, like I said, starting ldn and everything else I’ve tried for CFS so far has given me some hope and has given me some improvement.