LDN no longer helping after dental procedure extreme flare

Posted by jeannesf1 @jeannesf1, Sep 19 10:48am

I’m on LDN 6 mg. Had dental procedure for crown/temporary tooth and small filling (side by side) on August 26, 2026. Had headache/migraine day before. Started with jaw and head pain which I thought was reasonable due to procedure although it seemed more intense than other work I’ve had done for same thing. By next day the pain in my entire jaw and head were excruciating. I started Tylenol, ibuprofen, Bachlofen each and everyday to get a little relief Then ear area too. Then the other side of jaw (so intense) that hadn’t even been worked on, then neck and then shoulder , 2 weeks later (I needed more than 1 week for appointment for permanent, went back to dentist, because I was sure taking all those pain relievers for 10 days straight was not reasonable. dental assistant grounded down temporary and took off some excess material she had left behind. Pain continued head, face, ears, jaw, neck. Went back a week later to get permanent she took off temporary and used the air thing to dry the tooth underneath the pain was so excruciating that I pushed her hand away and started crying in pain. Sounds like an overreaction? I couldn’t believe it myself. It was just air. I’ve not had problems with pain at dental or fear of dentist. She called in dentist and he gave numbing injection and she was able to finish. Then pain spread to lower back, hips and thighs (this horrible pain had gone away after I started LDN! Now it was back. I continued taking Tylenol, ibuprofen, Bachlofen, biofreeze, ice, heating pad. Yes biofreeze on my face everyday . I was in contact with my neurologist, he suggested the Maxalt however the Tylenol, ibuprofen, Bachlofen helped better. I would get some relief but would wear off and would wait to take again because I was taking so much medicine that I was still in pain a lot of the time. Neurologist wanted to give me Tardol shot (?) for migraine. Then he offered a prednisone pack. It’s 6 days. I’m on my 2nd day and only have light pain. This is temporary. When I first had fibromyalgia hit the pain and stiffness was so bad I could hardly walk, shower (water like needles), open doors. I crawled up stairs to bedroom. I can walk however this time the pain had brought me to my knees, crying like a baby in pain. LDN seemed to have helped as much as 85%. Now I’m devastated. This prednisone is only temporary. I have appointment for chronic pain clinic to be evaluated to see if they’ll take me on. Got off Cymbalta 1 1/2 years ago and it was awful withdrawal and ongoing long term side effects. I’m so desperate I’m thinking of going back on one of the other fibromyalgia drugs. Got off Cymbalta by choice after taking it for for 13-15 years to try LDN. Noticed right away that now I could get up by 8 or 9am instead of 1-5pm. I don’t really want to go back on those meds although it would be something other than Cymbalta. I’m wondering if LDN can continue to help after this flare? Has anyone taking LDN had really bad flare up while on it? Anyone ever had this prednisone pack for pain and how long did it help for? Even though I’m on Webutrin for long time, Depression got so so much worse. I’m only writing this because I’ve finally got relief from pain but I was not functioning. Sorry it’s so long.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

I wonder if you got an infection that spread. Sounds pretty painful. You have my sympathy.

REPLY

I am so sorry for all that you are going through....My instinct is to agree with annpeters comment and say it is or has been an infection. Also -I would say don't go off LDN...it has so few side effects esp. after longer term use. I recently had surgery and had to stop LDN for 4 weeks due to opioid negation by LDN. So in order to restart my LDN I had to stop the pain meds ( opiates) . I have never had such pain from fibro before -as you described...and LDN can take up to 4 months to kick in...but mine is starting to help again after 6 weeks. Doctors don't bother looking into fibromyalgia and its effects on surgery and what to do about it -horrible....
Perhaps you can get some answers from some doctors listed on LDN Research Trust Prescriber List...it seems they are prescribing through telehealth means...maybe they can answer some questions.....lots of doctors don't know about or how to prescribe LDN just like most doctors and even rheumatologists don't know enough about or want to treat fibromyalgia...( my doctor who was treating the fibro and put me on LDN just died in June)
I know your pain and I am looking to find a rheumatologist to treat my fibro - the one close to me is awful. I may end up traveling 2 hours each way to see a highly rated one....and fill in part of the time with telehealth appointments. We are very underserved and fibro is so layered and complicated.

REPLY

Last winter I had jaw, face, ear, neck, all of my teeth to hurt at once.
My jaw teeth hurt the worst.
Went to dentist. They took Xrays and said nothing was wrong.
Had this twice and both lasted several weeks.
Later on, also had unusual problem because they had trouble getting the numbing medicine to work for a procedure.
They gave my gums more shots & finally got it numb.
I have had a stiff neck for over a year. Painful! Lately it is quite a bit better.
So sorry for all your pain.
I am not taking any medicine except a blood thinner for blood clots.
Because none of it helped and I didn't want to ruin my kidneys, liver & etc.
Hugs
Betty

REPLY

Thank you so much for your suggestion. I was in so much pain I was even thinking the LDN was the cause of this horrible flare. I was so scared I would stay in this level of pain. Thank God 2 days ago the pain subsided after 31 days of non stop pain and taking all those pain meds every day that only gave minimal relief. I’ve continued LDN throughout, and was actually thinking of stopping it and going back on Cymbalta or another same type med although I had promised myself I would not after the withdrawal and still lingering side effects of stopping it. It’s as if I’m either tortured by the illness or tortured by the Cymbalta. I asked my insurance (Kaiser) for an outside referral for a specialist for the fibromyalgia as I had such a difficult time getting off the Cymbalta because my GP doesn’t know anything about correctly tapering off of it and I only found out she did it too quickly after I researched since I had such a hard time with the taper. . I’m just requesting someone that at least has prescribed these meds to other patients. Of course I was denied. I’m appealing. The only relief I finally did get was from prednisone given to me by the neurologist who gave it for migraine. As if he was afraid to say he was prescribing it for fibromyalgia pain. It may sound dramatic but I’m traumatized from this last horrific flare. I hate attention, and I refrained from contacting the GP for fear of not being heard and/or just being dismissed. However she did refer me to a chronic pain clinic and I had first “class” via virtual appointment. It provided some helpful mental coping strategies but I don’t know what’s next as they as evaluating me based on questionnaire to see how much they are going to do. Please can you tell me, are you only taking LDN and not any of the other “Cymbalta, Amitriptyline, Lyrica), along with the LDN? I really appreciate it. Thank you.

REPLY
Profile picture for tin555 @tin555

Last winter I had jaw, face, ear, neck, all of my teeth to hurt at once.
My jaw teeth hurt the worst.
Went to dentist. They took Xrays and said nothing was wrong.
Had this twice and both lasted several weeks.
Later on, also had unusual problem because they had trouble getting the numbing medicine to work for a procedure.
They gave my gums more shots & finally got it numb.
I have had a stiff neck for over a year. Painful! Lately it is quite a bit better.
So sorry for all your pain.
I am not taking any medicine except a blood thinner for blood clots.
Because none of it helped and I didn't want to ruin my kidneys, liver & etc.
Hugs
Betty

Jump to this post

@tin555 Thank you so much for your response. Your experience is identical to mine. Except pain also started going to my hip and side of legs which were areas I hadn’t had pain in for awhile since using LDN. It seemed so extreme of a reaction due to just a dental procedure. Hearing of your experience helps me feel vindicated. I really appreciate it.

REPLY
Please sign in or register to post a reply.