Burning Mouth Syndrome with narcotic use

[Altruist]

Has anyone experienced burning mouth/tongue while using narcotics for RLS? I think it may take a long while to occur after starting narcotics. I have reduced the BMS and occurrence of RLS using Solgar brand Omega 3 Fish Oil Concentrate (Amazon), which also greatly reduces joint pain, you can take 7-8 a day, most at night before bed, Nature bell brand L-Tryptophan Calm Formula (Amazon), and especially SR brand L-theanine, an amino acid that is very calming. Methadone is no longer working (after two years), plus it is causing BMS, so I'm phasing it out quickly. I augmented on Ropinirole, then switched to Methadone, and I think I've augmented it - it actually makes it worse. I've found over the years that stress can greatly worsen RLS, so I avoid it whenever possible.

[SueJohnson]

Have you had your ferritin tested? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.

[Altruist in reply to SueJohnson]

Hi Sue,

After contracting Covid a year ago, my ferritin fell to 3%. I was unable to take heme iron tabs, so correcting iron with infusions, it is now around 140, and it's checked every 2 months. They check total iron, ferritin, and something about saturation. Correcting the iron, however, didn't eliminate the RLS, only helped some. I happen to have an appt tomorrow, and I'll ask about transferrin saturation and it's level if they're checking it. I wonder what you thought of my current solutions to significantly reduce symptoms. Thanks for the heads up - what is your professional status regarding RLS?

[SueJohnson in reply to Altruist]

If they checked "something about saturation" that would have been transferrin saturation. I'm glad the transfusion helped at least some. What does your doctor say about the BMS? It is not listed as a side effect of methadone. Anxiety and stress are associated with BMS. There are a number of treatments for it - ask your doctor tomorrow. How much methadone were you taking (you can't augment on it)? The usual effective dose is 5 to 20 mg. The supplements may help but are unlikely to be enough. Have you tried gabapentin or pregabalin? I am not a professional. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.

[Altruist in reply to SueJohnson]

You're doing the same thing as me in terms of research and advice. It's true there's no research on BMS and narcotics, but I think there should be. Many drugs cause it, including the main culprit, anti-depressants, which I've always avoided like the plague. You're absolutely right that stress and anxiety are associated with RLS, I've seen that pattern for many years (about 20). But I've also seen a strong pattern with narcotics which I've taken frequently (from every family of narcotics) in the past 15 years - I'm now awaiting surgery for my 5th joint replacement. It is possible that stress needs to accompany narcotic use to initiate BMS, as well as long-term use of pain meds. When stress is reduced in my life, or better yet, eliminated, the RLS has actually disappeared briefly, even while using narcotics, but only if the strength of the drug is drastically reduced. This happens at least for me - it's possible I'm a unique case. It seems genetics are a pretty strong factor, although studies have shown genetics play a smaller role in disease than we thought compared to that of lifestyle.

[Rwall]

Narcotics don't cause the burning for me, but they make me itch like crazy! I use a very very small dose of Buprenorphine along with a small dose of Xanax and 900 mgs of Gabepentin a few hours before bed. It has taken a while for my body to adjust and for the RLS to become manageable, but that is what works for me..... unless I eat something that triggers an episode! I've also been taking a slow-fe every morning, which after about 6 months has raised my ferritin levels to 300. I can really tell a difference with the higher ferritin, and didn't expect the pill to do the trick, but lo and behold, it seems to be working. Other iron I've tried, as my doc would not agree to the infusion, made me itch Best of luck and just keep trying!!!!!

[SueJohnson in reply to Rwall]

If you are taking the 900 mg of gabapentin all at one time, you might get by with less as it is not well absorbed above 600 mg. The usual advice is 600 mg 1 to 2 hours before bedtime and 300 mg 2 hours before that.

[Rwall in reply to SueJohnson]

That's good to know!!! Thank you. I'll try the 600 and see if I can even tell a difference, for sure. I appreciate it, as I've wondered if I dare go down and risk misery, but it sounds like it's worth a try!

[SueJohnson in reply to Rwall]

Don't reduce it until you have tried the above and then reduce by only 100 mg.

[Altruist in reply to Rwall]

Narcotics also caused me crazy itching for a while. An RN friend told me this can be a symptom of fatty liver, which I know I have from ultrasounds that show it. This must be from long-term use of narcotics, not alcohol since I don't drink (although drinking can, of course, cause fatty liver). A lot of research produced a solution: Choline. After two weeks of taking Choline Inositol, 1,000 mg 3xdaily (3 grams), the itching disappeared, and so did the frequent pain/discomfort in the right quadrant. More may be required for a person weighing more than my 110 pounds, but over 12 grams/daily can cause at least stomach upset. It's important to purchase supplements from a reliable, reputable company such as Solgar. Here are some sources:

healthline.com/nutrition/in...

fattyliverdisease.com/are-c...

Good luck to you.