eight weeks on LDN update

[Astonvilla68]

So eight weeks ago, I posted that I started taking low-dose naltrexone. Fatigue greatly reduced brain fog greatly reduced it’s too early to reduce pain however I have a small reduction in pain every day is a good day with regards to I’m sleeping better. I have learned that if you have fibromyalgia you will be prescribed one of the drugs that is quite expensive LDN is very cheap therefore not always prescribed but I’ve had zero side-effects and it’s made a huge difference to my life unlike all the rubbish I’ve had before duloxetine gabapentin et cetera. I understand there is a Facebook page called LDN research where you can look and find lots of information if you have fibromyalgia I would definitely consider , trying it but please do seek the usual medical advice before doing so

[ratoncita]

I’ve been taking LDN for maybe a year now. Started at .5 mg then gradually increased to 3 mg which is where I think I’ll stay as it seems to be helping quite a lot. I still have weather or stress related flares but they don’t seem to be as bad.

[Dipydoo]

hi Astonvilla 68 i take duloxatine and have for a couple of years i take it at night as find it helps better with any side effects it i have tried many but found that the best good luck 😄

[Latics1989-90]

HiI take Duloxetine with many other pain meds. It doesn't seem to make a huge difference tbh but I don't have any side effects which is a good thing. Gabapentin and pregabalin didn't touch my pain so I was taken off those. I do have many conditions which seem to fight with each other!! Hope your pain isn't too bad today. Xx❤️❤️

[Elaine200756]

Wow! That's amazing. It's hopeful for others to hear that you are experiencing better days. Thank you for sharing Astonvilla 🤗xx

[desquinn Partner Volunteer FMAUK Trustee]

Really glad it is working for you.

Just to add some context. Not everyone that tries LDN will find any benefit from it. Also some will find it does not continue to work and some (although a small number) will stop due to side effects. Pilot studies have shown some positive indicators in fibro patients (Younger at Stanford etc) but the most recent and largest study was negative result.

As to the "expensive drugs" being prescribed in favour of the cheap things like LDN, this is patently false. It is based on evidence. If you are making this argument you would be better served saying the drugs that can potentially show profit can afford the required trials but even this is simplistic.

Also, there are many people that owe their quality of life to Pregabalin, Duloxetine, Morphine, tramadol etc. They are not without problems and I would reply pretty much the same for any instance that diminishes one drug rather than another.

Wish it was that simple but it plainly not. Again, glad your benefiting from it. The LDN research trust is a good resource.

[Jaynefox]

as any one try morphine as I did after one could not use due to many side effects got osteoarthritis and bulging discs.so I’m not on any thing.

[Sarahvit in reply to Jaynefox]

Hi Jaynefox, I was also on morphine at one point because of multiple back issues years ago. I had gone to a chiropractor for a year then had an MRI done which showed my back just had a bulging disc but it wasn’t pressing on a nerve. So the doctor at the pain clinic took me off the morphine and basically said that my primary care doctor can manage the fibromyalgia pain. This was around 15yrs ago. I didn’t have any side effects from the morphine but I generally have a high tolerance to a lot of medications but there are some that throw me for a loop. The last thing being CBD gummies 🫨

[Jaynefox in reply to Sarahvit]

I take cbd oil 1000 help a bit at first not much help now,and I get the pain in both hips,which said coming from the bulging disc.I’ve had to give up most things which as made me very depressed.had injections only lasted to weeks then all the pain come back.dr said he going to one last injection then that be it.so not much help.

[Sarahvit in reply to Jaynefox]

I know that feeling been going from doctor to doctor to doctor and back to doctor to doctor and doctor. I too have been struggling with depression. I am going to recommend the circles app. It is like meeting people dealing depression, anxiety, divorce and break up, chronic illnesses, disability, narcissistic abuse etc . I don’t remember how I ran across it but meeting with people in the different rooms have been very helpful especially going between counselors. The depression was so bad I was praying “Lord take me home”. Because of my beliefs I couldn’t end my life but but I have been in those very dark places and the crisis hotline couldn’t help me because they are focused on helping people who are having suicidal ideation. So that is why I am recommending the circles app.

[Sarahvit]

Hi Astonvilla, thank you for sharing the Facebook page. I will definitely look into it. I did talk to my primary care doctor about LDN but when she checked with the MD (she is the PA) he said no there wasn’t enough evidence to support LDN in treating fibromyalgia. So I just let it go. That was months or maybe a year ago so I will look up the Facebook page. Thank you for sharing. 🤗💕💜

[Astonvilla68 in reply to Sarahvit]

one of the reasons it’s not being prescribed because there’s not enough money in it for the people and Doctors I would forget the term there’s not enough evidence you look on that page on Facebook there’s plenty of evidence on there.

[Sarahvit in reply to Astonvilla68]

The term I think you are referring to is “kickback”. I did try to find the Facebook page but I’m not tech savvy (when I put in google search 🔍 I don’t get half the info that others find) I only found 3 groups on Facebook for treating fibromyalgia with LDN. They didn’t have the information, testimonials or evidence of treating fibro with LDN.

[Pipido36]

Hi, I have been on duloxetine for a number of years now. I started on different medication which I couldn't tolerate the side effects, but since I started taking duloxetine, I started managing well. I take 30mg once a day. It definitely made a difference with regards to pain.