Is Anyone on LDN for pain?

[Amaya2014]

I have low tolerance for meds, especially opiates. One tablet of Percocet will knock me out for hours. I was taking tramadol for a couple of weeks...it was immediate helpful for pain but there was no way I could take it consistently without becoming a mummy. Also, I had a nasty crash due to taking Celexa and tramadol too close together.

That being said, LDN brought my pain level from 8-9 to 2-3 on a 10 point scale. Actually, I didn't notice the effect immediately...it took several weeks before I realized that it had been awhile since I'd had a day of pain where I just wanted to roll up in a ball and cry.

So, my only negatives is that at first I wasn't sure it was doing anything. And, I have joint pain (mostly wrists, ankles, and fingers) that LDN doesn't impact at all.

I really hope you get a combo that works for you @Misfit Toy. I've seen a number of your posts and my heart always breaks for you at the amount of pain you experience. Sending you hugs!!

 

[SB_1108]

@Amaya2014 - What dose are you on?

 

[SB_1108]

I just want to rant for a second because sometimes it helps to just get things off your chest. So here goes...

Its so depressing/frustrating to hear people say the LDN worked really well for them when I had such a negative experience. I'm SO JEALOUS of everyone that its working well for... I keep reading all of these posts online about how LDN is a miracle drug and I want desperately to be one of those people. Just to be able to drive again would be huge!

But like I said... I'll start again in another month and go way way slower.

 

[Misfit Toy]

@SB-1108-that's how I feel. Thank you for saying it. I feel that way about so many meds. Valcyte, Plaquenil, all of them. And LDN.

 

[SB_1108]

@Misfit Toy - Same here... Valcyte gave me no benefits. Methylation treatment hasn't brought any significant changes, adaptogenic herbs were a disaster. Everyone talks about how great magnesium is but if I have more than a sip of diluted Natural Calm, I'll crash and be on the verge of a hospital visit.

 

[Amaya2014]

I just want to rant for a second because sometimes it helps to just get things off your chest. So here goes...

Its so depressing/frustrating to hear people say the LDN worked really well for them when I had such a negative experience. I'm SO JEALOUS of everyone that its working well for... I keep reading all of these posts online about how LDN is a miracle drug and I want desperately to be one of those people. Just to be able to drive again would be huge!

But like I said... I'll start again in another month and go way way slower.

I feel you. I get wound up each time I spot a post that says...could this be the cure!...I'm recovered!...(It's almost as bad as a Pentecostal revival ...lol).

I've gotten to the point where I lessen my expectations and just try to learn. To me it seems most of our senior members realized all of us are experiencing this differently with a few core features that are similar. What works for one may not work for me...but it just might. Sometimes, something may not work and several months or years later a second try does the trick and vice-versa.

Lol...this is your assignment if you choose to accept...

 

[Misfit Toy]

I have low tolerance for meds, especially opiates. One tablet of Percocet will knock me out for hours. I was taking tramadol for a couple of weeks...it was immediate helpful for pain but there was no way I could take it consistently without becoming a mummy. Also, I had a nasty crash due to taking Celexa and tramadol too close together.

That being said, LDN brought my pain level from 8-9 to 2-3 on a 10 point scale. Actually, I didn't notice the effect immediately...it took several weeks before I realized that it had been awhile since I'd had a day of pain where I just wanted to roll up in a ball and cry.

So, my only negatives is that at first I wasn't sure it was doing anything. And, I have joint pain (mostly wrists, ankles, and fingers) that LDN doesn't impact at all.

I really hope you get a combo that works for you @Misfit Toy. I've seen a number of your posts and my heart always breaks for you at the amount of pain you experience. Sending you hugs!![

Thank you my friend!! Do you sleep at night on this?

At some point, I will give it a go again.

I can't take a whole pill of tramadol or Percocet. Nope. I itch.

I'm so happy you are doing good on it. I would hope it would help your joints.

 

[Amaya2014]

Sleep is still a challenge. I take elavil 25mg and Gabapentin 3capsules of 100mg at night (the full dosage is 300mg 3x a day). I also have a CPAP. I will feel tired but its still a challenge to get enough rest. 2am and 3 am are standard bedtimes for me when a spell of insomnia hits. Then other times I will be knocked out at 11pm. I thought moving the naltrexone to am would help but it doesn't look like I'll be able to tolerate it at this point.

My doc recommended starting chondroitin and glucosamine supplements for the joints. I'm also on weekly ergocalciferol so hopefully this will be an improvement. It seems my joint pain is more frequent with temperature change like being in air condition and when Im having a flare.

 

[Misfit Toy]

Sleep is still a challenge. I take elavil 25mg and Gabapentin 3capsules of 100mg at night (the full dosage is 300mg 3x a day). I also have a CPAP. I will feel tired but its still a challenge to get enough rest. 2am and 3 am are standard bedtimes for me when a spell of insomnia hits. Then other times I will be knocked out at 11pm. I thought moving the naltrexone to am would help but it doesn't look like I'll be able to tolerate it at this point.

My doc recommended starting chondroitin and glucosamine supplements for the joints. I'm also on weekly ergocalciferol so hopefully this will be an improvement. It seems my joint pain is more frequent with temperature change like being in air condition and when Im having a flare.

So Amaya, it's not really helping you then if you can't sleep? You are going off of it?

Is there ever not a caveat with any of these bullshit medicines?

No one seems to sleep on this stuff.

 

[alice111]

@alice111 -will look it up. Tried CBD oil and was high as a kite and had a major allergy to it. Thanks for the info! Will look it up.

Just looked up. It has THC in it which gets you high....yeah, I'm already brain fogged. That's the problem with that.

I don't know if this makes a difference but I use it before bed, and the the actually helps with sleep! (Combined with my sleep med) I DONT take it during the day ever, but the effects from using it at night last up to two days on the pain! Also I put the oil on my gums, don't know if that makes a difference.

 

[Amaya2014]

No it's not helping sleep but I'm not taking it for that. My body used to hurt so much it felt like someone had beaten the mess out of me when I woke up or I'd have this awful stiffness and struggle just to get out of the bed. It helps with that kind of pain and I no longer go through the day hurting all over (tender points is what they call it plus all over muscle pain).

The sleep is a CFS issue for me and I'm still working on improving the issue. For me, the improvement in pain makes LDN worthwhile.

 

[Misfit Toy]

I thought moving the naltrexone to am would help but it doesn't look like I'll be able to tolerate it at this point.

Oh, I thought you were saying you had to go off of it due to not tolerating it...sorry! I am glad you can stay on it.

 

[barbc56]

This may be a stupid question.....0.1mg is lower than .5....correct?

Took me a few times looking at the numbers but yes, .1 is lower than .50. I used to get this confused. The trick is to add a zero (s) until they are equivalent. So .10 is lower than .50 as ten is lower than 50.

Someone correct me if this doesn't apply across the board.

Tramadol works wonderfully, at least for me. Opiates like Oxycodone or morphine don't or help only on a short term basis.. If I remember correctly, Tramadol generally works better for chronic pain where the others work better fot acute pain. But this may vary among individuals.

Barb

ETA I forgot to add that even though my pain becomes at least tolerable, I still get the type exhaustion I used to get from pain. That's in addition to just the general exhaustion but TBH, it's hard to tell the difference. Don't even get me started on sleep!

There no stupid questions. Take from a person who among other things, was a teacher!

 

[Misfit Toy]

@barbc56 -One of my father's favorite lines was, "there is no such thing as a stupid question, only stupid answers!" He always made me feel good about my many questions that I would ask.

I wonder about that sometimes....every now and again, I've heard a question that's...well...not always bright.

Barb, are you on LDN?

 

[barbc56]

@Misfit Toy

I am not on LDN and since the tramadol works probably wouldn't switch. Especially, if you have to get off any other pain medications.

But never say never.

Btw, about the only question I found stupid when teaching was a student asking to use the bathroom when it was readily apparent it was for other reasons. When I did a stint at subbing, it seemed that within five minutes of the start of class about half the students would be raising their hands asking this. Usually, you can tell especially when you know the students. In over twenty years of teaching, I never had a student have a bathroom accident unless you count the brief period when I taught preschoolers. But they usually didn't get to the question part.

Barb

 

[Misfit Toy]

@barbc56 - too cute about the little ones. Yup, I didn't make it to the BR when little. I had IC then too and didn't know it!

Thank God for my extra Bert and Ernie pants. Lol!!

 

[SB_1108]

I'm still recovering from the LDN induced crash I've been experiencing for about 5 weeks. Can anyone tell me how I can get myself out of this any sooner? Its torture! I've only seen one other post where someone said it crashed them and they were out of it within a month. Any advice out there????

BTW - I stopped taking the LDN about 5 weeks ago.

 

[serusaert]

just started LDN @ 1.5 mg night time dose. i don't take opiates regularly so that's not an issue. btw, it looks like some of the bad LDN experiences were from folks who take tramadol or other opiates daily. that's a MAJOR reason to NOT take LDN. it will cause immediate opiate withdrawal symptoms and those are not fun.

what i do take regularly for pain are benzos and i am trying LDN as a way to not take them so often as they are also addictive like the opiates.

one good thing about benzos, tho, is that they are compatible with LDN (like marijuana).

but, there are reports that one can still take opiates with LDN, just not for about six hours after the dose - plus, be prepared for a hard-stop of the opiates effect when the LDN is taken.

i'm working on getting a legit RX for it (in-plan referral to naturopath, etc) as my provider cannot write the script for it as it's not in the approved in-plan formulary. for now, i am buying it from israel: https://www.buyldn.com/

i'm also taking this with ibudilast which seem to be able to work together on reducing the neuropathic pain.

 

[Firefly_]

Hey Misfit my 2 cents....I've been on LDN for over a year and a half was taking 4.5 mg at night and also taking tramadol throughout. It did cause me crazy dreams at first and my sleep was shite already so not sure if that hurt it any, but I sleep fine now. A few months ago Dr Kaufman had me start taking it in the a.m. also starting at .5 mg and titrating up to a max of 4.5 and I'll be damned if it didn't help! I take 5 mg at night and 3 mg in the morning and I'm off of my lyrica and tramadol completely. Hope you can find some relief,

 

[Misfit Toy]

Hey Misfit my 2 cents....I've been on LDN for over a year and a half was taking 4.5 mg at night and also taking tramadol throughout. It did cause me crazy dreams at first and my sleep was shite already so not sure if that hurt it any, but I sleep fine now. A few months ago Dr Kaufman had me start taking it in the a.m. also starting at .5 mg and titrating up to a max of 4.5 and I'll be damned if it didn't help! I take 5 mg at night and 3 mg in the morning and I'm off of my lyrica and tramadol completely. Hope you can find some relief,

Firefly, that's so great. I just started. Do you have adrenal exhaustion? I am wondering if it could make that worse.