Duluxotine: Hi. I have been on... - Fibromyalgia Acti...

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Duluxotine

Catsandcakes77 profile image
8 Replies

Hi. I have been on Duluxotine for about 5 months now and have not felt any benefits re: pain. It has been making me wake up.in the night and more tired. I had a cold turkey over Christmas as I couldn't get my meds and had to go back on them after 5 days as I was still rattling. I take Pregablin as well as HRT and the mini - pill. I am not sure if they are really helping either as I still get all the muscle aches and tightness and random pains and muscles spasms. I do yoga, stretching and became vegan. I want to come off all the medication, but am worried what I will be like without them. The best treatment I have had is fascia muscle release, but it is expensive. It took away the crushing pain I felt in my lower back and neck

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Catsandcakes77
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8 Replies
Sparklingsunshine profile image
Sparklingsunshine

I no longer take any meds for Fibro, I tried them all, I was diagnosed in 2008. I also have underactive thyroid, I have jabs for B12, and I have Ehlers Danlos. So it can be tough knowing which one is the culprit. I never got on with Pregablin, Gabapentin or Duloxetine, I found their side effects worse than the Fibro.

I am quite limited with regards to painkillers due to allergies, so I ended up on Zomorph, slow release morphine, which used to make me itch terribly. I stuck with it for a few years until my Rheumatologist pointed out that there was no good evidence that opiates helped with chronic pain and had I tried without?

So I decided to slowly quit, which was tough as morphine causes physical withdrawal. But I got through it and have never used it since. Similarly Amytriptyline, which I took for sleep. Initially very helpful but I had to increase the dose all the time to get the benefits and then the side effects increased which outweighed the benefits.

I do take low dose Naltrexone or LDN which I get prescribed privately. I personally have found it helpful but there are no guarantees. Other than that its the usual boring advice, eat healthily, try gentle exercise and stretching, keeping warm, sleep quality is a hugely important one and pacing yourself.

I've also started using regular collagen powder mixed with water, my Ehlers Danlos means I have less collagen in my body than normal so I have very stretchy joints. The collagen I take helps to replace what I'm missing, at least in theory. It might be nothing more than a placebo 🤣 but my knees certainly feel less sore. If I'm really struggling I'll just take an otc painkiller.

Yassytina profile image
YassytinaFMA UK Volunteer

Hello, I am in the 1st few days of dropping my duloxtene down from one tablet 60mg too 30mg via my doctors suggestion yes they say never go cold turkey on this as not nice side effects, you sound you are ticking some boxes looking at diet, the stretching , yoga, does a soak at nite in a warm bath help at all? My body does better with warmth differently not the cold westher xx

Alsithee4 profile image
Alsithee4

I'm very slowly trying to come off medication, but can't seem to do without 30mg duloxetine and 10mg nortryptaline. I'm trying alternatives such as reiki, cold water therapy, acupuncture and natural balms from blessed beez on Web. I'm slowly getting there. Pacing is the key for me, rest and a good sleep.

You'll get there, it's a slow process xx

Hobbylobby2 profile image
Hobbylobby2

unfortunately I have found taking antidepressants doesn’t help with any pain 🫣

Loobielu profile image
Loobielu

Hi, I've also given up with medication and agree coming off the Duloxetine was awful. You've some great replies above so I won't repeat stuff but I personally find living with fibro needs life choice changes, it's not ideal and is unfair. I'm never pain free but some days better than others. Best of luck finding your life balance x

Dor1 profile image
Dor1

Hi Catsandcakes77, I have been on duloxetine for years and have tried to come off it a few times with no luck. Don't know when you take yours but I used to take it at night and was not sleeping well at all. I have now started taking it in the morning and do sleep better. I still wake up frequently but feel that I have had a better and deeper sleep. It does take a few weeks for your body to register the changes. Remember that if you are changing times to miss your usual dose at night and start it again the next morning. Hope this helps.

Onceabiker profile image
Onceabiker

Hi, I was on Duloxetine for some time but the side effects were too much for me. Bad temper, mood swings, sleepy all the time, fluttering ribs and still pain. I told my doctor I wanted to come off it and he said don’t do it.

I came down half a pill a month and if I felt that was too much of a jump would stay where I was for that month so I could go to family events and the like. I came from 60mg down to 10mg and then asked my doctor the best way to go to zero.

He said don’t do it. When pushed why he said I would be at risk of suicide; he was not wrong and I had a terrible time for a few months with very dark thoughts. I ended up in an institution specialising in pain management for a month.

I’m off it now but take co-codamol, nortryptyline and just started nefopam. When ever I visit my doctor I tell them never to prescribe Duloxetine to anyone.

Good luck,

R

Fibroguy66 profile image
Fibroguy66

Duluxotine I find gives me bad dreams & nightmares etc.Why hand out mental health drugs to a central nervous system illness ?

I'm sick & tired of people who think that fibromyalgia is all in the mind.

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