Hi I’ve been on duloxitine for over 3 years. I’ve learned not to drink alcohol with them as fell and broke my arm. that was nearly 2 years ago and I was on my higher dose of 90mg then.
I started with 30 mg then 60 up to 90mg. They are very good and numb the pain. I’m wanting to try and come off them to see if I can cope without it? Trial and error.
It takes months to wean off. I’m now 30mg every 2 days and my headaches are back. Im in pain head to toe. Im using the ibuprofen he’ll before going to bed so that I can sleep.
supposedly withdrawal symptoms are bad so I will persevere.
Has anyone else tried this ?
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I was only on it 5/6 days but it didn't agree with me so I stopped, thinking sure it will be fine as not on it long, how wrong was I. For me the withdrawal is brutal, extreme dizziness and nausea. I feel like my brain is fried, can't sleep but feel exhausted, the whole body pain and crawling/prickling feeling is not pleasant. I'm 7 days off and I think I feel a tiny bit improvement but its not fast let me tell you. I just wanted off of it so I stopped it. You are doing it right, by tappering off. I really don't know how it will go for you are you've been on it longer. Just keep this in mind, you will get off it and the withdrawal will eventually pass. It will take a bit for your body to go back to before doluxitine levels of pain. My pain is way worse just now than it was before taking it so still waiting for my body to adjust to see how I feel. Good luck, be kind to yourself and remember it will eventually pass. Take care 🙂
Eeek sounds like hell for you 😞. I did 3 months on amitriptyline and had horrid withdrawal when came off them. I then started on Duloxetine 2 months ago, 20mg. Not helped with pain and I'm reluctant to up the dose. It has made my anxiety a little calmer and no noticeable side affects so not sure when I go for a review in July what to do next. Do you know what you will do next? X
I’m on a single dose of 120mg which is what is recommended for fibro and despite some side effects it’s changed my life. I rarely wake up saying I hurt all over any more. My hands aren’t in claws and as long as I pace I can live a reasonable ‘part-time ‘ life. It took a year to get to 120mg upping 30mg every 3 months. Side effects could be brutal - nausea, dry mouth, sweating - but I’m so glad I persevered now
Blimey waking up not hurting! I can't remember a time this wasn't the case. I tell my husband I wake up feeling like I run a marathon the day before and I'm coming down with the flu! Am I brave enough to increase to 120mg though 😬. I'm tempted now lol! Yes I experience the dry mouth, sweating and nausea but it's tolerable at this dose. I would love to know how your pain is as you come down the dose again xx
hi not sure what I’ll do next as one of the things that drove me mad was the pulsitile tinnitus. Probably sounds nuts but I feel your body gets used to taking pills and need to take a higher dose. My doc said 90mg was the highest dose. I feel worse when my body is resting so I would take 30mg morning and 60mg going to bed. I would also like to take note of all my aches and pains. I lost lots of weight on the high protein diet. I’m now 3st heavier at 12st 5lbs 😩
Not nuts at all! I agree, you end up just upping the dose to max, go through withdrawal to come off it only to start again with a different drug! Feels a little hopeless doesn't it. I also feel worse when resting or I stop, if I just keep moving I can tolerate it but we are too tired to keep going. It's a vicious circle 😵🤯. Gaining weight is just awful, it's like another layer of cruelty. I'm trying yoga at mo. Hurts like hell but I'm told it helps so I keep pushing through 🤷🤦 x
hi, yes I weaned off Duloxetine, slowly tapered off.
I couldn’t cope without it, I had the worst flare up imaginable, I went back on it as I cope better taking it. I started with 30 mg then went up to 60mg, I’m back to 30 mg and if I have a really bad flare I will go back to 60 mg, it works for me but we are all different.
I do have an occasional drink when I’m socialising, I know it’s not recommended but for me life’s to short and have always enjoyed glass of wine.
Fibromyalgia is vile I am never without some pain but it’s tolerable at the moment 🤞🏻I am luckier than some folk
Good luck, I hope you find some way of coping whichever way you choose.
I came off all meds except 30mg codeine, which I keep as low as possible, about 2 years ago. (I had asked my GP if I could try Duloxetine on the recommendation of a friend, but only if he'd help me come off all the others. Then there was Covid..... So, I did it alone.I came off Tramadol, Pregablin, and a few others - HORRENDOUS withdrawal for 4 or 5 weeks - started on Duloxetine, with REALLY AWFUL side-effects, and then the Duloxetine started working. It didn't take the pain away totally (nothing ever does), but it seemed to give me some relief and took away the terror of totally untouchable pain I had before.
So, I started researching Medical Journals to find out what made Duloxetine different (i.e. It's an SNRI, whereas the others were SSRIs). I
Along the way, I discovered that a lot of my body's pain control mechanisms rely on hormones to work. T
The only way I could make these myself was by EATING enough protein and pre-biotic fibre, DIGESTING this well by reducing stress at mealtimes and eating earlier, making sure my body could ABSORB the nutrients from my food by improving and maintaining my gut health, and then aid it to METABOLIZE the hormones I needed by ensuring the correct vitamins, minerals and hormone pre-cursors were in place for the chemical reactions to happen.
Basically, I used my EDAM process to replace the SNRI meds that worked.
I couldn't eat all the proteins I needed, so I started to Amino Acids. I included ground linseed and inulin in as many meals as possible and started to take a range of 'clean' vitamins and minerals.
I also ended a 'friendship ' that had been making me very unhappy.
I then came off the Duloxetine, which was nearly as bad as the side-effects I'd had getting on to them.
I still get 'bad pain' Fibro days, but they're not as bad as the pre-EDAM nightmare times, and I can usually trace the cause now, ( for me, it's almost always stress-related).
I have other chronic conditions that cause me pain and exhaustion, but the fear of uncontrollable agony that Duloxetine took away hasn't come back.
I hope your withdrawal symptoms subside soon and you reach your own peaceful place. Meanwhile, I honour your courage in breaking free.
Hi Dee, fascinated to read your response. I think my fibro has got worse since I became a vegetarian. I definitely don't get enough protein in the rest of my diet as I find it hard to digest beans and pulses. Any advice on how else I can increase protein? Many thanks Lou X ps I agree stress is such a trigger 🥴
If you can tolerate eggs, they are quick and easy to cook, come in minimum plastic (tee hee) and are high in protein. To get the levels of Tryptophan (a key precursor for GABA and other pain managing hormones) I think I'd probably need to eat several dozen Turkeys a week.... add to that the fact that most of them meds we take damage our gut, we probably don't get all the goodness/protein from the food we do eat.
Which is why I started taking a wide spectrum Amino Acid (twice a day, on an empty-ish stomach), along with Vitamin C and B-vitamins which help the Amino Acids to do their job.
I hope this helps, dee
P.S. Vitamins B and C are water-soluble, which is why we need to take them away from meals, too.
You mentioned hormones, One thing I'm convinced has helped me immeasurably is taking high strength doses of vitamin D with Vitamin K from what I've read it's essential for your body to function - My level when originally tested was under 10 on the scale they use, additionally I've never tested positive for covid, even when my Mrs did. Many recent studies show numerous benefits including improved mood and a degree of protection against Dementia. Check out Dr John Campbell's review of the latest medical studies on YouTube.
I admit, I also take Vitamin D3, with K2, but more for CFS - but there's so much similarity between CFS, CPS and Fibro, that I think whatever helps one, helps them all.
Hi, I’m not a great lover of it and try not to be on it as much as possible… main reason.. it takes my libido away and my ability to orgasm… I’m off it at the moment and the only thing I find when I come off it I do feel “low” and this can take a while to shrug off. If I begin to flare I always begin to take it again…
I was taking 600mg pregablin in the colder weather, I’ve had a sunny holiday and the weather here has warmed up and I’ve dropped down to 150mg with hardly any side affects.
I have been weaning off Duloxetine for THREE YEARS now! I take out 5% of the tiny/micro beads in 30mg capsules every 4 to 6 weeks, depending on when and if the side effects of the current dosage stabilize somewhat. There are sites online that describe brand(s) with tiny beads and how to achieve this way of tapering. My side effects of the medication were horrendous, but have improved a little as I progress, though some are still occurring. I will continue until I am totally off the med, even though this has been/still is a very long road …. This is just my experience as a patient, and I have a very understanding physician who continues to prescribe the medication I need for this type of withdrawal… Please do your own research to decide for yourself. I am not medically trained, just a miserable patient, after taking what I now consider “poison” ……
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Coming off Gabapentine
Off for a few days break 
Coming off meds not easy!
Can a GP force you to come off medication that works?
Been off grid for a lo g time
