Has anyone ever been on Duloxetine (Cymbalta) for nerve pain?

Posted by dougs72 @dougs72, Jun 22, 2024

Has anyone ever been on Duloxetine (Cymbalta) for nerve pain? I've had 2 doctors push this on me. I know that the side effects can be terrible and getting off of it difficult as it requires titration. One time I remember taking one pill, and not liking the way it made me feel, so not taking any more, and still feeling the "weirdness" from it 2-3 days later. and that was only 30 mg Please pass along any experience or advice from this medication?

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Profile picture for emo @emo

I know that some have benefited from Cymbalta and other similar medications, but everything you and others have mentioned are reasons I personally chose with my care team not to try it. I’m very sensitive to medication, and even things that are “generally well-tolerated” either aren’t, or I need to start at a much smaller dose.

But for what it’s worth, my neurology NP specifically didn’t recommend it for me when it came up because I tend to experience strong side effects. She also said her patients have had significant difficulty weaning off it if they need or want to stop it. I’m always very cautious around any kind of drug like that, but everyone has a different comfort level.

PT geared toward pain neuroscience and neuroplasticity has been a much better fit for me, and in a way it’s the most effective thing I really have access to because my central sensitization affects how I process medication. From living with chronic pain for almost a decade (!) now, it’s my opinion there still aren’t great options for chronic pain, especially for those of us hesitant or sensitive to medications. Then again, some people report life changing experiences with things like Cymbalta, Lyrica, etc.

I also take LDN (low dose naltrexone). It helps with fatigue, but I can’t really say for certain it’s helped my neuropathy.

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@emo
You sound so knowledgeable in the chronic pain realm. I have looked into LDN. Where are you located that you seem to have such a knowledgeable care team? I am in Nashville with Vanderbilt but have had trouble finding the right team thus far.

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Profile picture for lovliladi @lovliladi

Yes. I have Pudendal neuropathy and was first given gabapentin- got naucous. Changed to Duloxetine- after 10 days I was sooooo sick- dizzy, headache, stomach upset . For about 2 months I had no appitite, had to stop taking it. I have many medicine allergies- but non with this reaction. I am going to have to go to pregabalin next.

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@lovliladi
Have you tried pregabalin? What has been the best experience of the 3
For you?

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Profile picture for adriannabass79 @adriannabass79

I was taking Cymbalta, did not work. So I was given gabapentin and tramadol, those did not work. Was given muscle relaxers, and low dose Zongran. Was not working. Now I am currently taking a stronger dose Zongran of 50mg and steroids. It's not working. I already had a left Lumbar Sympathetic Nerve Block. Did not work, made my CRPS worse. Have to get a different Nerve Block. I am so lost and in pain .

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@adriannabass79 I am so sorry and can relate. Had a sympathetic nerve block last week for pelvic pain/neuropathy (initially started with a sacral stress fracture from running and turned into now 6+ months of chronic pain) and the nerve block doesn’t seem to have helped me either. I hope that you (and I) can find some relief and some answers. I am on gabapentin twice a day which helps a little and take Tylenol around the clock to take the edge off, but some days the pain is nearly unbearable. 🙁

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Profile picture for thornbunny @thornbunny

I realize I am very late to the party. Have you heard of CRPS? If your burning is located in one+ limbs and you have had an injury or surgery in the same area before the burning began, check out CRPS, Complex Regional Pain Syndrome. At the very least, you check it off; at the very most, you may have joined us “Zebras.”

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@thornbunny
Hello. It’s recently been postulated that I may have CRPS after a sacral stress fracture last summer and development of searing/burning pain initially in the same glute but now both sides. Where is your CRPS? I’m on gabapentin which perhaps helps a little but it’s hard to find relief. Sitting is impossible for me. I had a sympathetic nerve block last week which I was hopeful for but if anything, j am experiencing more pain 1 week later. Interestingly, my pain is chronic but I tend to have flare ups about everyb4-6 weeks lasting a week or 2 where the pain is moderate to severe and difficult to manage. I would love to talk to others with CRPS and hear the honest truth… what has helped, what to expect, and how to live through it. I was previously a healthy marathon runner and I have 3 young kids so this has been a horrid, life altering year looking for answers and relief. 🙏🏼 thank you

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Profile picture for dprodriguez @dprodriguez

@emo
You sound so knowledgeable in the chronic pain realm. I have looked into LDN. Where are you located that you seem to have such a knowledgeable care team? I am in Nashville with Vanderbilt but have had trouble finding the right team thus far.

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@dprodriguez Thank you, that’s very kind of you to say. I’m in the Chicago area. I met my primary PT through Shirley Ryan AbilityLab (but I did not do their chronic pain program).

It’s been years I’ve had chronic pain, so I think gathering the knowledge was a mixture of persistence, research, and honestly—luck. I had to do a Lot of independent research.

I’m close to major medical centers sort of like you, and it’s still so hard to find people, especially now that the people who treat these conditions all seem to be going concierge.

This article is super-old, but this is what changed my approach: https://peterabaci.com/2012/12/07/a-radical-shift-to-better-pain-relief/. And then I read his book.

After a series of bad PTs, unhelpful consults, and misdiagnoses and missed diagnoses (including two stints at two different Mayo campuses), I eventually got to a PT who specialized in chronic pain and found a PCP also knowledgeable about pain neuroscience. She was an integrative physician and a DO, so I think having that approach helped because it gave her a bigger toolbox. We maxed out the medical treatments we could (meaning like, medications), of which there aren’t many great options, and the rest of the interventions fell into the bucket of PT, pain neuroscience, or mind-body practices aimed at retraining how the body processes pain, not “fixing” it or muting it.

Honestly, I got the best mileage out of working with PTs. Are you able to find a PT who specializes in chronic pain specifically? Like someone who treats things like fibromyalgia, EDS, or POTS. They’d usually have the knowledge base.

My primary conditions are POTS and EDS (and I realize this is the neuropathy forum). I can think of at least one PT here who offers online self-guided programs to help with chronic pain, but she primarily works with people with EDS. It would be applicable to most people with any chronic pain though. Happy to share more about that if you’re interested: https://www.chimera-health.com/

I did her Ground Control and Regulate programs.

Curable is an app-based program I’ve heard really good things about. And I used the Recognise apps for something called graded motor imagery. To my surprise, it helped my neuropathy. I know this reply is super long, so if you have questions on any of it, feel free to let me know.

Not sure if I answered your question lol. My PCP prescribed LDN. When she left her position =*(, I looked into online programs that prescribe it, but didn’t end up needing to use any because thankfully I found a new PCP willing to prescribe it.

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Cymbalta severely fvcked me up, and I had only beenon it a short while at 20 mg. Just changing from bedtime to morning dose caused an extremely hypomanic response where I was driven to do a massive amount of cleaning and organizing, despite my chronic pain that was made worse day by day with the activity. The first night skipping it at bedtime, I had auditory hallucinations, what they call "brain zaps," and some dyskinesia. My week of activity before I was in literally too much pain to move, and I was in bed for 6 weeks, begging doctors for help, being told I'm crying in my sleep. Then I remembered I had some Baclofen a friend sent me years ago, and I inadvertently took too much and wound up losing awareness of a full day and eventually being taken to the hospital, where I was misdiagnosed with "psychosis," and they literally treated me like garbage. I had been put on Cymbalta a few years prior for a short while, and it caused me to faint and sustain a concussion, so I was reluctant to try it again, but mistakenly trusted the prescribing pharmacist at the clinic. Since that medication, any time I try anything for depression, I get worse side effects, twitching... the hospital had given me some sort of IV antipsychotic, which made things a LOT worse. I had sleep hallucinations for about a month - thankfully, not every night, but it was terrifying, and I feared I was losing my mind.

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Dougs72 - I was taking 60mg twice a day (so daily total of 120mg). It certainly helped with the pain however, the brain fog really wasn’t good. I spoke with my GP and immediately cut the Duloxatine (Cymbalta) down to 60 mg but, upped the Butec Buprenorphine Patch to release 15micrograms per hour - (up from 10micrograms). It has worked very well for me so far and, no side effects or withdrawal symptoms.

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Profile picture for geekgurl2000 @geekgurl2000

Cymbalta severely fvcked me up, and I had only beenon it a short while at 20 mg. Just changing from bedtime to morning dose caused an extremely hypomanic response where I was driven to do a massive amount of cleaning and organizing, despite my chronic pain that was made worse day by day with the activity. The first night skipping it at bedtime, I had auditory hallucinations, what they call "brain zaps," and some dyskinesia. My week of activity before I was in literally too much pain to move, and I was in bed for 6 weeks, begging doctors for help, being told I'm crying in my sleep. Then I remembered I had some Baclofen a friend sent me years ago, and I inadvertently took too much and wound up losing awareness of a full day and eventually being taken to the hospital, where I was misdiagnosed with "psychosis," and they literally treated me like garbage. I had been put on Cymbalta a few years prior for a short while, and it caused me to faint and sustain a concussion, so I was reluctant to try it again, but mistakenly trusted the prescribing pharmacist at the clinic. Since that medication, any time I try anything for depression, I get worse side effects, twitching... the hospital had given me some sort of IV antipsychotic, which made things a LOT worse. I had sleep hallucinations for about a month - thankfully, not every night, but it was terrifying, and I feared I was losing my mind.

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@geekgurl2000 Duloxetine 30 mg 1 X day at night (Cymbalta) after 3 days nose started bleeding and felt like I did when I went into convolutions. Arms tingled and was dizzy when walking. Stopped taking. this was for Fibromyalgia

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Profile picture for geekgurl2000 @geekgurl2000

Cymbalta severely fvcked me up, and I had only beenon it a short while at 20 mg. Just changing from bedtime to morning dose caused an extremely hypomanic response where I was driven to do a massive amount of cleaning and organizing, despite my chronic pain that was made worse day by day with the activity. The first night skipping it at bedtime, I had auditory hallucinations, what they call "brain zaps," and some dyskinesia. My week of activity before I was in literally too much pain to move, and I was in bed for 6 weeks, begging doctors for help, being told I'm crying in my sleep. Then I remembered I had some Baclofen a friend sent me years ago, and I inadvertently took too much and wound up losing awareness of a full day and eventually being taken to the hospital, where I was misdiagnosed with "psychosis," and they literally treated me like garbage. I had been put on Cymbalta a few years prior for a short while, and it caused me to faint and sustain a concussion, so I was reluctant to try it again, but mistakenly trusted the prescribing pharmacist at the clinic. Since that medication, any time I try anything for depression, I get worse side effects, twitching... the hospital had given me some sort of IV antipsychotic, which made things a LOT worse. I had sleep hallucinations for about a month - thankfully, not every night, but it was terrifying, and I feared I was losing my mind.

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@geekgurl2000 I also had terrible reactions to Cymbalta, ended up affecting my vision as well. I am so sorry for what you went through. I just had another drug that made my vision blurry. The doctor does not have my allergies on file, does not believe me and I go through these episodes again and again. I have FM and can't tolerate anymore experimenting.

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Profile picture for heartnurseva @heartnurseva

This is making me wonder , Yes I was on Cymbalta for over 5 years , with chronic pain, mostly back and legs. I felt it did help but was it worth wt gain? I weaned off it and had no problems for 2 years, and now reason I am on the blogs is horrible pain of right arm and shoulder x 3months , I go to a Dr this am we will see what he wants to try.

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@heartnurseva I have Occipital Neuralgia my Dr. gave this med to me, did not help at all. nerve block injections work wonderful for me.

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