Curious what medication to discuss with doctor regarding fibromyalgia

Posted by hudson757 @hudson757, Oct 13 1:28pm

I’ve had whole body pain most of my life but managed. Had back surgery in 2023 for sciatica pain. Got diagnosed with hoshimotos/hypothyroidism. Now just diagnosed in 2025 with fibromyalgia. I see a therapist and psychiatrist for cptsd and sorts. Had a nerve function test and it showed damage (failed surgery) carpal tunnel, nerve damage from head to toe. So the question is what’s a good medicine to start with for fibromyalgia? I’ve been on a couple of medications for pain. Not looking for medication with a dependence. Any suggestions I’d gladly take

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Profile picture for cyndigarrison @cyndigarrison

Most medications for fibromyalgia patients include pain meds, muscle relaxers, or meds that work on the central nervous system. Nonsteroidal pain meds, opioids, muscle relaxers, or drugs that work on the central nervous aystem that interrupt the pain loop so that the brain doesn't sense the pain that is there-such as Gabapentin, Neurontin, Cymbalta, Savella. All drugs have side effects, some more severe and effect people differently. Nonsteroidals can damage the gut, opioids have other effects, the cns drugs can cause cognitive dysfunction and in most cases a lot of weight gain. More recent drugs are a low dose nasal spray of the narcotic inhibitor Narcan. This can be used in the lower dosage in patients on opioids. The latest FDA approved drug is a bedtime low dosage of sublingual cyclobenzaprine called Tonmyia. And lifestyle modifications such as diet, exercise and good sleep hygiene are important.

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@cyndigarrison they gave me pregabalin. Just started this, so far I stay active for my job. I heard about the weight gain. Just using caution. Wish me luck

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Profile picture for 4corazon @4corazon

There is a way to make your own LDN from Naltrexone 50 mg. I remember being told how but found it too much trouble, so I buy it from a compounding pharmacy.

There is a new drug for Fibro, supposed to be available before end of year, TONMYA. Sounds wonderful so I hope my dr will prescribe it. The first fibro drug in 15 years they say. I want it for the fatigue. if it also controls the pain, then i wont need the LDN. Hoping!

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@4corazon
As someone already pointed out, Tonmya is nothing more than cyclobenzaprine (aka Flexeril) that has been reformulated to be a lower dose and taken subliminally rather than as a pill you swallow. By reformulating the drug, the drug company can charge lots more money. (I take a 5mg tablet of cyclobenzaprine before bed. I think it helps with sleep and pain.). It's a shame that no one can come up with a drug to help with Fibromyalgia without addictive properties and bad side effects. The current 3 drugs approved by the FDA are only effective for about 30% of the people who take them, and the relief they provide is often minimal.

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Profile picture for 4corazon @4corazon

TONMYA, the newest fibro drug, supposed to be available by the end of the year. Sounds wonderful.

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@4corazon
Please see the replies to the above comment regarding Tomya.

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Profile picture for daisy17 @daisy17

@4corazon
As someone already pointed out, Tonmya is nothing more than cyclobenzaprine (aka Flexeril) that has been reformulated to be a lower dose and taken subliminally rather than as a pill you swallow. By reformulating the drug, the drug company can charge lots more money. (I take a 5mg tablet of cyclobenzaprine before bed. I think it helps with sleep and pain.). It's a shame that no one can come up with a drug to help with Fibromyalgia without addictive properties and bad side effects. The current 3 drugs approved by the FDA are only effective for about 30% of the people who take them, and the relief they provide is often minimal.

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@daisy17 In my experience, because I also have ME/CFS, most of my meds are low dose. Sometimes they work differently if they are low dose rather than normal dose. For example, LDN (low-dose naltrexone) is 4.5 mg, but Naltrexone normal dose is 50 mg. This LDN helps with my pain.
It appears that, if I were able to take Tonmya, as a geriatric patient my dose would be 2.8mg. I see that the daily dose for Flexeril is 30 mg. So it appears this is a very low dose. However, I am not a candidate, from what I read, as I do have CHF, heart block, and heart rhthym disturbances. So, as excited as I was to see this med for fibro, I don't think I can get it. At least it would be covered by my insurance, whereas the LDN is not--it has to be compounded. Darn! I will ask my cardiologist though because I will see him at Mayo Clinic Phoenix in December. Perhaps this low dose would not be a problem, whereas the regular dose of cyclobenzaprine would.

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Profile picture for hudson757 @hudson757

@cyndigarrison they gave me pregabalin. Just started this, so far I stay active for my job. I heard about the weight gain. Just using caution. Wish me luck

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@hudson757 I wish you the best of luck. And it really did help my pain. It was better than I could have imagined. Hopefully it will be for you as well.

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