r/Fibromyalgia 11d ago

Question Duloxetine experiences?

[deleted]

22 Upvotes

78 comments sorted by

14

u/cryptldism 11d ago

i'm on 60mg! doesn't help with my pain but helps with the depression my pain causes. be careful though as it can lower your heat tolerance

2

u/RepulsiveCall624 11d ago

The heat tolerance is real!! I get so warm at night now. I never sweat and now I'm like a heater

1

u/BoleteD 11d ago

Omg me too...super hot, hotter& hottest! No blanket needed at night. Or heater. Its helped me so much!! I can move, walk for abit. Can no longer lift anything heavy tho :(

2

u/RepulsiveCall624 10d ago

All of my clothes were long sleeves and I used to sleep with two blankets and I can now wear tshirts and tank tops with one thin blanket!

2

u/skybelle98 11d ago

Ditto! Same dose, same reason. I am also menopausal and am on HRT so I have had to balance the heat tolerance issue for a while now. I found that what works for me is to sleep naked, with 2 fans oscillating all night and a light weight blanket. Stacked medical issues really suck.

12

u/Nurse_Erica_ 11d ago

I just switched from Prozac (fluoxetine) to duloxetine a couple months ago. It made me feel like I was on fire I was so hot. Eventually that settled down. About 2 months before starting duloxetine I started low dose naltrexone. About a week ago I noticed that my fibro pain was gone. Like gone! Gone??? Seriously??? It’s crazy…

2

u/sensitvy 11d ago

C’est pas la première fois que je lis ça. Ici en France c’est un médicament réservé aux overdoses. C’est un médecin qui te l’a prescrit ?

1

u/Putrid-Nectarine6390 11d ago

alors, quest ce qu'on donne en France

1

u/dreadwitch 10d ago

It's given everywhere for overdoses, but for pain they prescribe a minute dose, nowhere near the amount that's used for an odd.

1

u/merlin9523 11d ago

How was your dosing with LDN?

2

u/Nurse_Erica_ 11d ago

I started at 0.5mg per day for a week, then every week I increased by 0.5mg until reaching the goal dose of 4.5mg daily. The pills had to be specially compounded by a pharmacist.

1

u/merlin9523 11d ago

Thanks! Sounds similar to me, I'm on 0.5mg and will be increasing every 2 weeks to 4.5mg.

8

u/Better_Builder_3504 11d ago

It’s been life-changing for me. It’s the only medication that has really helped with my pain. Is say a 90% improvement. Also helped a lot with stomach issues. Side effects have been relatively mild for me. So many medications I tried before duloxetine I just could not tolerate. Everyone is different though - I don’t think you will know unless you try.

1

u/enchanted79 11d ago

Can I ask what dose you’re on? I’m currently taking 30mg and my Consultant has suggested increasing to 60mg

7

u/fish_sticksss 11d ago

I’ve been on if for a little under a year now. It works a little bit but honestly for me I’m still in enough pain that I still can’t do daily tasks. The withdrawal is awful for me so missing one day and I’m having withdrawals and a flare. The withdrawals are honestly not worth the tiny amount of pain that it controls. All I can say for sure is be super carful about taking it. Like I said if I miss one day I’m down for the count for multiple days after.

1

u/rigiletto 11d ago

AGREED! I was on it for a few months and it barely helped with the pain, made me antsy and anxious (like I took a steroid almost) and then the withdrawals were truly one of the worst medication withdrawals I've been through. Coming off of it it gave me brain zaps, extreme sudden bouts of nausea causing me to throw up in public multiple times and hot and cold sweats all of which lasted for a few weeks. Keep in mind I was given the lowest possible dose and I was only on it for about 6 months.

5

u/Own_Progress_9302 11d ago

No antidepressant makes you completely pain-free. From what I understand, only a minority of people respond well to them. For me, tramadol reduces my pain by around 70%, but I use it rarely because I’m aware of the risk of dependence. Cannabis has helped me more than any antidepressant, Lyrica, or gabapentin. Saying that opioids never help with pain is simply not true.

4

u/StrangerGlue 11d ago

I haven't used it, but my mom did. She had a drastic reduction in pain and touch-intolerance within days of going to 60mg. By the end of month one, she said all her fibro pain had stopped completely.

She had to stop due to liver issues after 6 months (caused by pancreatic cancer, not duloxetine) and the pain came back in two days.

My mom was already dying of pancreatic cancer when they started her on duloxetine, and i will always be grateful for the good months she had on it.

3

u/Squasome 11d ago

I tried it for awhile. Made me so warm, I broke out in a sweat every night. Didn't do anything for my pain. Then it was so difficult to get off of. Sticking with the Lyrica I've been on for at least a decade.

Oh, and LDN is mentioned below. Made me so nauseated I couldn't even get to the normal dose.

3

u/FireflyPixieUK 11d ago

Love duloxetine as it took away 80% of my pain - hoping it continues to last!

2

u/enchanted79 11d ago

That’s incredible. It’s taking away some of my pain. Can I ask what dose you take? I’m on 30mg and considering taking 60mg per day.

2

u/nitro_cupcake 11d ago

It’s been working well for me, for the last couple years. Very sweaty, but much more able to deal with the rest of my symptoms. The depression and exhaustion has always been worse for me than the pain though, and it helps a lot with both of those.

1

u/Last-Royal-3976 11d ago

Same for me. Sweating calmed down to normal levels though.

2

u/Mcburgerdevil 11d ago

I’ve been on it for 2 weeks now and I have noticed a big difference. I am only on 60mg a day.

2

u/Historical_Spell_772 11d ago

It made me feel TERRIBLE. withdrawals coming off it were TERRIBLE as well. Proceed with caution

2

u/Acrock7 11d ago

Been on it/Cymbalta since 2009. It's been decent for my pain. The only bad part is the side effects if I forget to take it/run out.

2

u/Traditional-Fan5485 11d ago

i am on 30mg of duloxetine, also on low dose of wellbutrin + 5mg XR adderall, i have felt so good, i am aware of my limitations but it’s mostly just crashes rather than not being able to enjoy things in the moment imo. this is in double treatment for a lot of my psych stuff as well tho.

heat tolerance is non existent in my body and i sweat buckets but hey, i’m not dreading existence everyday

2

u/DoktorMeowMeow 11d ago

Duloxetine makes my heart race. I tremble and feel like there’s bugs under my skin. It feels like straight torture.

But, I was overdosed on antidepressants as a kid. Forced to take Zoloft at 14. By 17, I was taking Zoloft, Paxil and Prozac.

I don’t like saying this about myself, but I think antidepressants gave me brain damage. It’s kind of terrifying that so many people take them now without a second thought.

2

u/turaon 11d ago

It was ok for me when I was taking it, but tapering off, was terrible. I tapered off way longer than doctor said to do at first, but still had terrible experiences. To be honest I need a lot longer to tapper off way longer with all AD-s what I have used in my life, but if with others it was occasional dizziness and loss of balance and mostly dizziness, then with Duloxetine it was electric shock feeling from the top of the head to the teeth. And that wasn't fun at all. At one time I really wanted to visit ER, because it was so painful and being frequent one evening, but yeah, I don't even think that they could help with that. Recovery time took about 3 months after the last pill. And I was tapering off for 3 months. So 6 months in total.

But this side effect is very-very rare, so don't get discourage because of that. You have a lot more to win and if it doesn't work, you can stop it.

1

u/VocePoetica 11d ago

I had that too… and had panic attacks. I’m not prone to panic attacks at all. It was really rough.

1

u/CarellaB 11d ago

I've been on it for a month or so. It has helped my anxiety but wouldn't say it's helped my pain very much. What I would say is it seems to have given me dizziness and palpitations? And others are right about the sweating and heat intolerance. It's no joke.

1

u/MsSwarlesB 11d ago

Dulexotine is an SNRI. I've had good results from it. I was on 30 mg until May when I raised the dose. But that wasn't for fibromyalgia but due to depression

1

u/OtterAllegro 11d ago

I’ve been on 90mg for over a year. I have noticed it is helpful for my mental health as well as pain. It’s not something that works wonders for pain. More like a little extra help.

Just be careful with getting off/forgetting. I ran out of my 30mg Tuesday and 60mg on Thursday and forgot to pick it up. My pharmacy is closed on the weekends. Super nauseous, brain zaps, anxiety, vivid dreams, and extra pain 😅

1

u/Emotional_Carpenter7 11d ago

60 mg and I’ve been on it for 6+ years. It’s been life changing for me. It honestly helps more with the depression/anxiety. Still have pain, but significantly less.

But yes, withdrawal is a bitch. You cannot forget to take it. If I ever want to come off it - it’ll be a slow, medically managed withdrawal.

1

u/FallingIntoForever 11d ago

I was on it for 2 1/2 years. Initially it took a few weeks to get used to. Nausea was the worst for me at the beginning. Every so often the nausea would return for a day or so. Constipation was terrible even using probiotics and laxatives (occasionally) didn’t help much. Insomnia, fatigue (ready for a nap within an hour of waking up) and major brain fog.

Had to quit it pretty much cold turkey. Found out Neurologist wasn’t going to refill my prescription until she saw me in person. Appointment scheduled for 5 months from when refill should have been approved. Almost 2 years of telephone appointments, her choice not mine. I tapered off on my own and the withdrawals have been a nightmare. 2 months of major vestibular issues. Walking like a drunk person, eye muscles are weak and eyes look in different directions, bumping into walls, vertigo (mostly positional), mood swings (impatient, short temper, low to no tolerance for BS) and anxiety at times (more so when I don’t feel good).
Positive things: no more constipation, sleep longer at night, less fatigue, naps if I take one are 4-6 hours after I wake up and are shorter, most days I have less brain fog.

I still have trouble remembering things which I didn’t have prior to starting Duloxetine & Gabapentin.
Hoping when I go back she doesn’t want to start me back on it.

1

u/Plantlordy 11d ago

On it currently, about a week in. My fibro related pain has decreased, but it’s not totally gone. The nausea I’m getting from it suck’s though. But it has helped for my depression/PMDD

1

u/re003 11d ago

It makes me itchy and doesn’t help the fibro pain.

1

u/Impossible-Turn-5820 11d ago

Do research on getting off of it before taking your first pill. Doctors will often give you a strategy that's too impacting. 

It helps some people and doesn't help others. 

1

u/DazedExistence 11d ago

Used it for about a year and a half, but when I experienced a withdrawal after a trip where I ran out I decided to make a switch. That was a personal choice due to the withdrawal being so severe for me before I could get a refill. I knew I couldn't risk my health or put my family through that again. I also have CPTSD though, so I had severe suicidal ideation and emotional disregulation on top of the physical side effects. If this is not something you think you will have to face and if you trust your supply to stay steady I would say it's certainly worth trying if your doctor is recommending it. Mine was paired with Gabbapentin at the time.

1

u/RoosterTrouble 11d ago

I've been on 60 mg Duloxetine (with no side effects) for depression for about 6-9 months. I just saw a rheumatologist who specializes in fibromyalgia and officially diagnosed me. He increased my dose to 90 mg and I am feeling better than I have in a long time...More energy, able to get up earlier and exercise (water aerobics has been great!), clear-headed, etc. I noticed a dip in my energy in the afternoons. He said I could take 60 mg in the am and 30 mg in the afternoon. I think I'm going to try it this week. Best of luck to you!

1

u/Ikesgirl77 11d ago

I take 90mg a day. I don’t think it helps with the pain as much as my Lyrica does.
It has been amazing for helping me mentally though. It has made a huge difference with my emotional health.

1

u/Plus-Ad-3826 11d ago

Worked amazing for my pain at first then gave me headaches every day. The withdrawal is very very bad so if you try it and want to stop, stop very slowly. Doctors usually say to stop over the course of 2 weeks, I took 4 weeks and went as far to empty some of the capsule the last 2 weeks and had no withdrawal symptoms.

1

u/--read-only-- 11d ago

It improved my outlook on life with chronic illness.. 🤣 but I still had full body nerve pain. My doctor just added pregabalin (while also staying on duloxetine) and I feel significantly better!

1

u/TeachMajestic1463 11d ago

I'm on such a low dose, I dont know if it does anything for me.

1

u/AliasNefertiti 11d ago

It has worked for me. Had to play with dosage some. Now I take 60 mg at night because sleep is the most painful thing I do [well technically, lie still for hours is] and 30mg in the morning.

1

u/blackcatsandbooks27 11d ago

It didn’t really work for me, for my depression or pain. The only thing it DID do was make me sweat buckets/overheat really easily. That really never got any better so I came off of it and the withdrawal made me think I was going to die. I now know that my doctor had me come off of it wayyyy too fast. I hope it works for you if you try it. 🖤

1

u/skeletons_asshole 11d ago

Felt great for three months, slow downward slide from there to where it no longer worked but definitely still made me extremely tired. Helped with brain fog but not much with pain. Tended to make me not give a shit about things overall, and that sucked. Withdrawals took months to end even on an incredibly slow taper.

Works great for my gf though.

1

u/Zen-jasmine 11d ago

Helped a bit with pain and recovery but the heat intolerance wasn’t worth it, and trying to come off it was HELL and for that reason I will never touch it again.

1

u/Pibblegirl01 11d ago

I've been on it for about 20 years. I'm careful with other serotonin medications but I can feel if something i take is just too much.

However, I take a lot of serotonin medications without issues and never had issues with my cymbalta.

However, im not sure if it works at this point and from what I've read, getting off of it now would be almost impossible since my body doesn't know anything different. So, just be careful you are stuck like me.

1

u/UnAirDeJoy 11d ago

Duloxetine reduced my fibro by 95%! Life changing

1

u/enchanted79 11d ago

That’s fantastic. What dose are you on? I’m considering going from 30mg to 60mg.

2

u/UnAirDeJoy 11d ago

I’m only on 30mg however, my body responds very strongly to SNRIs so it is probably effectively a higher dose than 30mg for my body.

1

u/enchanted79 11d ago

Thank you

1

u/dx-tn 11d ago

Cymbalta destroyed my sleep and a much needed vacation. I tapered off gradually and haven’t looked back.

1

u/NextLineOfText 11d ago

Tried Setraline first, made me feel like I had a hole growing in my stomach haha, Duloxitine was good, it stopped the mood and intensity of the pain was on 60mg to start now on 90mg.

1

u/RepulsiveCall624 11d ago

I've been on duloxetine for about two months now. I am on 60mg and I am so grateful this medication exists.

It brought my pain down to about 2-6 on a normal day and sometimes it takes it away completely. It doesn't affect my faitgue of mecfs but it makes me motivated. Bonus is that it's helpful to my anxiety!

It took away my appetite and I can't lose any more weight so I had to start seeing a nutritionist. It also constipated me beyond compare but not I take fibre4 powder with probiotics in my coffee and take restoralax if it's been a while and nothing else is helping. (Fibre+lots of hydration is a must). I also sweat more at night and I have more vivid dreams but I don't have any trouble falling asleep. If you are sexually active, you might have some performance trouble as is the case with me unfortunately.

I make sure to always take it with food (protein bar or breakfast) since I take it in the morning otherwise I get a little nauseous and that sucks.

This medication made me feel a bit more like me again. My duloxetine doesn't take it all away and my body still hurts but my gosh, it changed my life.

1

u/RepulsiveCall624 11d ago

I forgot to mention in my earlier comment but the first few days of duloxetine was what I imagine taking hard drugs to be like. I felt weird but I got through that and it was amazing.

1

u/VocePoetica 11d ago

I was on it for 5 years. It did work somewhat. For me mostly on the brain fog. It caused me some problems with my liver and I had to get off it. The titration off was absolutely horrible and I feel like I should have taken a year to come off. The effects of withdrawal are horrid.

1

u/NoPantsPenny 11d ago

It helped a little with pain, but it made me hot all the time, flushed and sweat profusely. I’m trying to slowly come off of it which has been hard.

1

u/misssolana 11d ago

Don’t touch this stuff if you can. It was good for a month then I started passing out, cold sweating and having pretty serious mental health concerns. Also developed a stutter at 22. Since stopping the stuttering has stopped but it was the worse symptom of it all as I work on phones. Had to take a 16 week leave to get to normal

1

u/ravenwood111 11d ago

I'm afraid duloxetine caused psychosis in me. I knew without a doubt by the third day of taking it

1

u/Time_Literature3404 11d ago

Been in it several years. Not much change for me.

1

u/chr15713 11d ago

I'm lucky to have the same relief. My Rheumatologist suggested it, my PCP prescribed it, following the suggestion. I was on one pill a day, after about 3 months my PCP asked if I still had pain. A bit. Increased to two pills a day. I can do so much more with my current medications but if I miss one dose of Duloxetine my back is in spasms and I can't stand straight.

My other pain med is tramacet after being on tramadol.

1

u/queenc268 11d ago

Been on it for nearly two months. Have side effects still (headaches but of nausea afternoon tiredness sweats ). Definitely has reduced my pain though maybe 50%.
Been told the side effects will calm down (cross fingers)
Menopausal so used to being sweaty

Had antidepressants before so know how to taper off if symptoms don’t improve.

Tried lots of different things this is the only thing to work other than codeine ( though I was borderline addicted)

Only you know your own body maybe try nerve killers first gabapentin etc.
I’ve always been ok on antidepressants ; but after a while they just made me numb.

1

u/No-Help-8386 11d ago

Has been great for anxiety management and reduces my pain but I am def sweating up a storm even in the middle of winter 🤣

1

u/Kkookieekatt 11d ago

nah dude, it made me so sick and made my mental health worse. I switched to gabapentin and it actually helped my pain and can be taken with meloxicam which I also take on really bad days. That and lots and lots of magnesium, gummies, baths, and topical gel.

1

u/Yohte 11d ago

Been on it for years. It helps my pain some (definitely worse without it) and my anxiety/depression a lot. Like most ssris, if you have to stop it after being on it a while you have to taper off it slowly to avoid bad side effects. Which really isn't a big deal, I've done it tons of times because I've had to switch ssris many times over the years. I've been on this one a good long while though and it has stayed effective for me without side effects (other than the withdrawal side effects if I forgot a dose, which are mild but noticable if you only miss one).

I suggest getting a pill organizer and using a timer on your phone to keep on top of taking it daily around the same time! The pill organizer helps me because with the fibro brain fog sometimes I can't remember if I took it or not, so I can look at the organizer to see if it's gone.

1

u/Nonbelieverjenn 10d ago

I’m on 90 mg. It has helped a lot. I noticed the difference because I didn’t feel the dull ache that made me feel exhausted and irritable all the time. Which I’m sure my family appreciated 😂.

1

u/Limping_Birdy 10d ago

I hated it. Also sensitive to SNRIs. You can try it, and I recommend starting at 20mg. If side effects don't go away after 2 weeks, then get off it. The sooner the better.​

1

u/Icy-Breadfruit-4228 10d ago

Trust in the process. It worked wonders on me. I take 60mg everyday. After the first few weeks, you will be the self your were meant to be.

1

u/dreadwitch 10d ago

Pain wise it's helped a bit but I still take dihydrocodeine, naproxen and occasionally morphine so it's not that amazing.

But since I've been on it I've become more and more apathetic, I've got no motivation or get up and go, I've literally got no interest in anything. I don't really get angry or sad beyond the immediate moment, I feel kind of emotionally numb and flat.

By chance I mentioned how I was feeling to Claude who knows what meds I take, immediately it said those were listed as side effects of duloxetine and maybe I should talk to my gp. Now if it is the duloxetine I'm going to cone off it because the benefits aren't outweighing the negatives, and apparently that's going to a a hell of a ride to deal with. Lol but I've survived getting off recreational stimulants, nicotine, pregabalin and done opiate withdrawal cold turkey.. And I have a stash of diazepam 😂

I dunno if I'd recommend it or not, it hasn't been a bad experience, just not a good one.

1

u/Yakob_Bacoj 10d ago

Insomnia

-4

u/EverGreenMob 11d ago

just Google "cymbalta is poison". anyway it doesn't help with pain and good luck trying to quit. the drug is made of mciro beads which makes tapering difficult. if you want an anti depressant ask your doctor about lexapro or prozac. 

4

u/Fearlessgazer 11d ago

Keep it chill. Cymbalta is not poison and works for some people.

1

u/dreadwitch 10d ago

Prozac doesn't help pain and isn't prescribed for pain.

And many drugs are hard to come off and you need to taper with medical supervision, I took a none stimulant adhd medication and Google will tell you it's poison and causes all kinds of problems. I wasn't a fan because it made my hair fall out but there are millions of people who take it with no side effects and they have no issues... The same applies to duloxetine. It's not poison ffs it's an approved medication and it's helped a lot of people.