Hugs. I'm so sorry for all that you have gone through...to have had this monster for so long already at such a young age is really terrible. I know you probably have people ask these things all the time...but have you looked into tDCS treatments or the new Quell device. I did tDCS treatments and while it didn't directly help lower the day to day pain it did reduce the number of flare ups and reduced recovery time from flare ups. Also helped me get more sleep on a regular basis without needing meds...which makes it a ton easier to cope with and manage the pain when you can get a solid 6-8 hours of sleep a night instead of 3 non consecutive hours a night like I was getting before. The Quell device is pretty new...I just started using it back in December and it is helping with the pain all over. It's wearable and lightweight...I have it on several hours a day. If I skip a couple of days my pain levels are noticeably higher and since I've been dealing with some issues after falling off a ladder in October it is noticeable that this device is actually helping. I responded well to TENS unit treatment and stim...but the downside to those is they don't help much with more generalized RSD pain once my RSD spread. The Quell unit seems to be very similar to TENS or stim but works all over without needing to move the device. Plus...no wires. Sorry to go on if this is stuff you have already looked into but they are not necessarily common go to treatments so figured worth mentioning if you have tried pretty much everything else.

Blazed,

Please bear with me and my LDN questions. What was your bad reaction? And in what form where you taking it? Because you took LDN so long ago it may be that there is updated info of which you may not be aware.

I belong to an LDN FB group which has a vast number of members and massive amounts of in depth information. It is known that fillers can cause negative reactions, not the LDN. Improper dosing can run the gamut of doing nothing to causing violent nausea. Some LDN has been found to be compounded with next to no potency and with certain fillers that cause allergic reactions.

Retrying LDN in the pure powder form using an acidophilus powder as a filler has been successful for posters who had reactions to other fillers. Also mixing it yourself can be beneficial, because you can slowly increase the dose until you find the optimum one for you. Many members have more informed doctors, who give them prescriptions for the 50mg pills and instruct them to do this. It is also the most affordable way to take LDN.

Also at the beginning of taking LDN at higher doses people "herx," it actually indicates the LDN is working. I did not have this reaction-probably, because I started "low and went slow."

I realize when I said that it was the first thing they tried it sounded like it was when i was 11, but it was the first thing they tried after they finally accepted and diagnosed it in my stomach, so that was about 4 months ago.
I had gotten very bad hives, along with nasty looking blisters that would pop and be gross, and then my mouth and throat would swell up, which is my most common reaction to most medicines, I am allergic to A LOT of things lol. So they just refuse to give it to me now as my reaction is life threading. I also am unable to swallow any medicine because it will go to to my stomach. Which would cause me to vomit it up with in minutes. Which is why my feeding tube goes past my stomach to the small intestine. If I was capable of trying it again I would but I dont think its possible. Also you mentioned that some forms of it can be mixed with something else, I believe is what you said, and I was given just pure ldn with nothing else . thank you sooooooo much for suggesting it though. I'm glad there are people trying to help, I just wish I had more options XD lol. Why does my body hate me So much.