Ive asked 2 doctors about LDN, both said no because it’s not approved by Health Canada for fibromyalgia. (The meds that are approved made me worse.) Once I get a doctor here in Edmonton, I plan to ask again and to keep asking. - ThreadSky

compulsiveobserver.bsky.social • 23 days ago

Ive asked 2 doctors about LDN, both said no because it’s not approved by Health Canada for fibromyalgia. (The meds that are approved made me worse.) Once I get a doctor here in Edmonton, I plan to ask again and to keep asking.

Reposted from Chronic Pain Partners - EDS Awareness

Low-Dose Naltrexone: Possible Pain Relief in a Small Package

https://buff.ly/3NWwE3U

#EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #Fibromyalgia #Fibro #CPP #Pain #Spoonies #NEISvoid #MedSky #Medicine #Doctors #Nurses #Zebras

Comments

cppedsa.bsky.social•21 days ago

Same experience. Hopefully my new doctor may be more open to it. I've wanted to try it for over ten years!

compulsiveobserver.bsky.social•21 days ago

Me too , I first read about it in Ginerva Liptan’s fibromyalgia book.

meganmoore.bsky.social•23 days ago

I managed to get it from my doctor at the McGill Pain Management Clinic! I had to ask around a bit before but one doctor there does prescribe it.

squarejane.bsky.social•23 days ago

Hey! I am on LDN in the form of Contrave. It is prescribed for weight loss (which i could use) but I am taking it for pain and fatigue. It is helping substantially. Contrave is a combination of LDN and Welbutrin. 1 Contrave pill is almost exactly the right dose for chronic pain. Ask me anything

susankiddie.bsky.social•23 days ago

This is interesting. I recently started trying medication for my chronic pain out of desperation but Lyrica made my pain worse. I thought it was just me. I'd love to try LDN. Wonder if my doc would go for it.

compulsiveobserver.bsky.social•23 days ago

Lyrica kept my pain levels same as before, made my fatigue, vertigo, nausea, and termites worse. It also made me super hungry all the time.

compulsiveobserver.bsky.social•23 days ago

Termites. Amazing, that should read tremors.

susankiddie.bsky.social•23 days ago

Lol didn't even notice.

susankiddie.bsky.social•23 days ago

Ugh.

I avoid prescription meds as much as possible because I don't do well with them. But desperate times...

drkamikaze.bsky.social•23 days ago

I have a PCP who provides it now, but when I first tried LDN I paid for a private appointment with a nurse practitioner known for treating with LDN. Might want to consider that option. Drs are so weird about it, they act like you are asking for opioids when it's literally the opposite and no harms.

drkamikaze.bsky.social•23 days ago

It doesn't help everyone, but I went from being almost bedbound to recovering quite a bit, for a few years anyway. I know it still helps because I'm worse without it, but unfortunately the recovery failed at a certain point.

compulsiveobserver.bsky.social•23 days ago

Sorry to hear your recovery stalled, no idea why doctors do not want to prescribe this. Looks like I’ll have to be very proactive.

drkamikaze.bsky.social•22 days ago

yeah, I just saw a survey a practitioner did for treatments that helped the most for ME and LDN was far and away the best one. It's a really incredible drug, and likely has at least some prophylactic functions for viruses, though I don't test the theory and mask everywhere.

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