Duloxetine: Hi there, my doctor has... - Fibromyalgia Acti...

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Duloxetine

Tassadar profile image
29 Replies

Hi there, my doctor has prescribed me this to help with pain and mood and just wondering does anyone have any experience of this?

Does it work? Likely side effects?

Thanks

29 Replies
mybrohasfibro1960 profile image
mybrohasfibro1960

Hi there, my brother has been taking duloxetine for a few years now for Fibro and this has worked brilliant for him, I don't think there's been side effects. Good luck to you.

Jacjai profile image
Jacjai

👋 Unfortunately didn't work for me, I did persevered for 6 weeks hoping the side effects would disappear but never did.

Bad night sweat, nightmares, insomnia (literally awake every night) restless leg.

Coming off them was really bad withdrawal, vomiting, dizziness, zapping electric feeling through my head for few days.

It's was the worst medication for me.

Everyone is different though..Good luck x

Tassadar profile image
Tassadar

Thanks guys. The doctor gave me a list of possible side effects, but most of which I'm suffering from anyway so i thought I'll give it a go, can't be any worse. Starting them today so hopefully will work

Mille21 profile image
Mille21 in reply to Tassadar

Good luck x

PAULINE15 profile image
PAULINE15

I was given them at one time but had the side effect of feeling cold, but meds are always worth a try.

DodgeDhanda profile image
DodgeDhanda

Hi T.

I've been on duloxetine for a few years & it was a god send as before that I struggled with fibro & my mental health & my doctor actually prescribed it for the fibro piano but I found it calmed my mind down & has done so ever since & I told my doctor that even though it did nothing to ease the pain it worked at helping my mind to be calmer & now I still have duloxetine for my mental health & morphine for the pain .

Tassadar profile image
Tassadar in reply to DodgeDhanda

It was actually my psychologist who made me phone the doctors as she was concerned for safety, so if it helps for the mind then that is primary goal, helping with pain would be added bonus but have plenty other meds for that also.

DodgeDhanda profile image
DodgeDhanda in reply to Tassadar

See for me it was a god send & has helped me learn to be in a better place & I keep learning how to deal with things each day. However it may be different for but I do hope it benefits U as it has & still does benefit me.

Mille21 profile image
Mille21

Hi I'm on it alongside morphine and I feel it really helps first couple of days I had really bad diarrhoea on it but once that subsided its fine hope it helps you x

DodgeDhanda profile image
DodgeDhanda in reply to Mille21

Snap as I too take dulox & morphine too , I have a permanent stoma so looser motions are better for or it upsets my tummy badly , I also can't take antiinflammory tablets too.

Hope ur doing well , is ur morphine still working ? Mine works about 40% but since it is an opioid I am addicted to it & recently I spoke to my GP about the morphine as the surgery pharmacist wanted to change my drugs to fentynl patches & the doc said no U stay on the morphine.

Trappedmoth profile image
Trappedmoth in reply to DodgeDhanda

Recent research strongly suggests that opiates are, on the one hand, very dangerous, and, on the other hand, not very good for pain control in fibromyalgia. The surgery pharmacist was right. My main drugs for fibro are Sativex (medical cannabis) and Low Dose Naltrexone (LDN), both prescribed originally by my pain consultant. They are both very safe, not addictive (at least physically) and much better for pain relief than duloxetine, which helps me with depression, but not with pain.

Here is a link to an interesting paper comparing cannabis and opiates: liebertpub.com/doi/10.1089/...

This one is about LDN: ldnresearchtrust.org/conten...

And gloshospitals.nhs.uk/your-v...

If I were you, I would find another GP.

All best wishes to you.

DodgeDhanda profile image
DodgeDhanda in reply to Trappedmoth

My GP is brilliant & if he says that with the opioid I'm taking now is better than the opioid the pharmacist wanted me to then take. So it would've been swaping one addiction for another & this way no slowly reducing & then starting the new one at the same time so I'm never without relief

desquinn profile image
desquinnPartner in reply to Trappedmoth

The evidence for LDN and cannabis is much weaker than it is for opioids. They do not appear on any recommendations that I am aware of. There is a move away from opioids which IIRC have always been a weak for recommendation.

Latest NICE guidance did not consider positive evidence for the likes of tramadol in their studies to be considered so did not feature. There were lots of reactions against their inclusion criteria.

Ultimately the meds that are recommended for fibro (LDN and cannabis is not but duloxetine is) have a selection bias. We do not know who they work for before giving them to people and they have a 30-40% success rate. If you are in the group then brilliant and if you are not then they are cr*p.

So ultimately people need to find the meds that work for them and long term solutions as well. It has always been mentioned that high doses of opioids are not a long term fix as they are at the top of the treatment ladder and have complications.

Yassytina profile image
YassytinaFMA UK Volunteer

I have been on this for over 5 years and worked for me personally 100 per cent , hardly any lows ,and anxiety , I do get abit warm at night , one of side effects, think I took at least 2 weeks too kick in xx

DodgeDhanda profile image
DodgeDhanda in reply to Yassytina

I still get anxiety blips still but I can feel my heart & myself calming down when I logically look at a situation , taken years of learning but I have something that works for me. Is the warmth at night a side effect of the dulox ?

Yassytina profile image
YassytinaFMA UK Volunteer in reply to DodgeDhanda

I do read you can get over heated on duloxtene and as I take mine before bedtime it’s during g the night I seem too get hot x

DodgeDhanda profile image
DodgeDhanda in reply to Yassytina

I take one in am & 1 in pm but I don't feel the heat U speak of , so long as its not causing U pain then it should be OK especially in the cold weather

Tassadar profile image
Tassadar

Thanks for info

rosewine profile image
rosewine

I was prescribed it but unfortunately had severe side effects so after 3 weeks had to stop taking it. These new medications arr always worth a try as what suits one doesn't suit another.I sincerely hope it works for you.x

Sparklingsunshine profile image
Sparklingsunshine

I tried it but not for me, I've never found any fibro meds I could tolerate. I'm very sensitive to side effects. Always worth a try though.

TheOwl89 profile image
TheOwl89

I'm currently on duloxetine for fibromyalgia and I must say it had helped with some of the pains such as my neck and wrists but it doesn't help with my other pains and my partner says my mood is much better since taking if this helps

Blearyeyed profile image
Blearyeyed

I think it all depends on the individual patient, their full medical history, and which pathway your Fibro began from as to whether one drug , another , or a combination of a few works.The way to guage it is by taking the lowest possible dose first for a couple of weeks . This may not give you a noticeable impact to the pain , but it does allow your body to adapt to the new chemical it needs to process, and the level of side effects are not as strong early on.

Obviously , with the first few doses you need to work out if you have an allergy or intolerance to the drug itself . If you have any swelling , especially of lips , eyes and fingers , breathlessness , severe dizziness or fainting then it may not suit you.

After a couple of weeks taper up to the dose your are meant to be on , or if they started you on a low dose and you found the drug gave some improvement and you can manage the side effects you can request a slight increase.

You also need to work out what triggers your Fibro pain to flare up once the pain has settled and avoid those things or adapt how you do them.

It can take time and a few changes over 2-3 months before you can be sure that a medication is making a substantial difference to you , if it isn't you need to it in combination or taper off it slowly to try something else. You may find that you benefit from using Paracetamol once a day as well , as many Fibro warriors have some inflammatory pain not just neurological pain , so the combination of a neuro medication and a gentle antiinflammatory can have a more successful effect.

You need to begin to pace your day with a good balance of rest and activity. Don't expect to return to the Old Normal , your Fibro will flare if you push beyond what your body can cope with and the painkiller won't seem to work well. You are on the New Normal with Fibro now.

Eat a nutrient rich diet with recommended daily intake of water and a combined vitamin supplement especially including Vitamin B 12, Folates and Vitamin D as Fibro uses up your nutrients and taking medication reduces how much you absorb , as low vitamins , or deficiency, causes added pain and fatigue in itself.

Gentle moderate exercise within your comfort zone and built up slowly also helps improve Fibro pain by making the body less stiff and more able to cope with physical chores.

Your aim even with drugs is to have consistency. Pain managed with few flares rather than 100% pain free.

SlothMode profile image
SlothMode

Hiya Tasadar,

I have taken Duloxetine since 2012 alongside Pregabalin my doctor said they work well together. I did get a little overheated but lol with heating bills it’s got to be a plus lol! I’m sure it’s what helps me keep my positive sunny outlook too! I do have a strange side effect both my arms have tiny red raised marks sort of like a blood blister but no bigger than a grain of rice. They don’t hurt though so I’ve got used to them. Maybe they are the side effects of my deadly meds cocktail as it made my doctor scratch her head. Gentle hugs 😊🤗

denny_the_wench profile image
denny_the_wench

Click on my picture and you'll find a lot of my posts about it. Hope it helps you x

Tassadar profile image
Tassadar

Well i know its early days, but 3 days in the only negative side effect is that i feel quite cold all the time rather than overheating. On the plus side, a lot of the noise in my head seems to have calmed so hopefully thats a sign that they are having the desired effect. Pain wise, nothing of note different yet, but it does say it will take some weeks before they take effect fully so with luck that will improve

Thor7860 profile image
Thor7860

I’ve been given 20mg to start with them 30mg morning and evening it’s helped my anxiety and ibs and all over body is better

Tassadar profile image
Tassadar in reply to Thor7860

Glad it helping. I'm on 60mg and within a day i could feel effects in my head. Not much change in pain levels for most of body, but the sore head I've had for around 3 years is much better than it was

Thor7860 profile image
Thor7860

Hi it takes time to help with pain hang in there take care

Thor7860 profile image
Thor7860

hi started using duloxetine only last year as others would not work in the beginning it takes time for body to adjust I was on 30mg evening used to get headaches but that eased off and then had 20mg morning know I take 30mg morning and 30mg evening and pain has eased not as tired as before and it’s not caused me any problems so far so good. It’s not addictive but effective and brother May you find ease with this duas ameen

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