Duloxetine: I would appreciate any help... - Fibromyalgia Acti...

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Duloxetine

dorking15 profile image
8 Replies

I would appreciate any help re Duloxetine. Been advised to take it by a locus GP, a rheumatologist and my pain management Dr but I am terrified of it after reading so many bad things and I am generally averse to popping pills anyway. Eventually I decided I couldn’t feel any worse so took it for three days. I did not sleep for 4 nights and felt so low I didn’t move from the bedroom for three days. My friend said I didn’t give it a chance but I just couldn’t cope with insomnia. I am already on 300mg x 3times a day but that is clearly not enough. Duloxetine did sound like the drug to answer all my prayers and do just what I needed. Tried pregabalin which was terrific until my hair all started falling out. I am told dno one else has ever suffered this side effect so wonder if I should try it again and maybe hair loss was not down to pregabalin but the timing would seem too much of a coincidence! Any feedback appreciated. Thank you.

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Dizzytwo profile image
DizzytwoModerator

Hi there, I can completely understand how you feel about taking medication I am the same. I have had fibro for 40years now and do not take medication apart from a mild dose relaxer and an OTC antiflam when I'm desperate. And yes i am in pain every day before anyone asks lol

I am also a wheelchair user and have very bad OA with other things going on.

But for me the side effects from medications ontop of everything else was impossible to cope with. Also for me none of the meds worked. So I take each day at a time and deal with the pain and fibro symptoms has they raise their ugly head.

Everyone as their own way of dealing with their illness. It may not be the same as each other. But if what you do works and helps you thats all that matters in the end 😘

Di d you know you can lock your post to this community. This means only members here can see and reply to your posts. Its not a rule but for privacy reasons I always recommend it. If you want to lock your post this link will show you how.

healthunlocked.com/fibromya...

Freddie20 profile image
Freddie20

Hello....I understand that you don't like taking medication, not many people are happy taking tablets, there are always some side effects.. i am on 60mg Duloxetine. In my experience it has really helped me with pain, I did try to cut my dose, but after a few days, my muscles started to stiffen and the pain return, I also have depression and the lower dose, was not good. The drug companies have to list all side effects, have you ever read the paracetamol leaflet? 🥴

I try to have a good diet and drink plenty of water, and include some Milk thistle now and then to help my liver, I have given up drinking alcohol 😫, but it has helped. I also try to imagine the tablets doing good for my body, and helping, rather than harming. The mind is a strong tool in creating a better life.

maybe talk to your gp or pain clinic, I had some counselling from the pain clinic, it really helped me. They were so kind and understanding. Good luck and lots of love. X

LoneEra profile image
LoneEra

Sorry you’re not finding the right treatment for you. If the pregabalin worked, you could speak to your GP about Gabapentin. This is a very similar drug, so you might get the benefits without the negatives.

As for the duloxetine, hard to say. Sometimes we get so worked up about taking new drugs, that we make ourselves very anxious - which leads to insomnia and so on! I know I’m guilty of this 🤦🏼‍♀️

I think it’s worth having an honest conversation with your GP about where you’re at. There are other options. Also worth asking for some physiotherapy.

And of course, self care measures are critical. Gentle exercise, sleep hygiene, good diet and so on. Wishing you well x

Daisy4444 profile image
Daisy4444

Hi there, I take duloxatine for fibromyalgia, I was getting bad shooting pains through my limbs but duloxatine has helped. Then I have recently had a lot of pain in my knee and I am waiting for a replacement. So now I take pregablin. I do get hair loss but use plantur 39 which helps . Although I hate side affects, I don't think I could manage the pain without the tablets. I hope you find whats best for you. Best wishes

Supersewer profile image
Supersewer

I was put on duloxetine first, but after only a few days my throat felt like it was closing and I developed rashes like burns on my arms so was then told to stop taking and take piriton for a few days to get this drug out of my system, then I started taking pregablin, which does also have side effects, and I have a very dry mouth and a sore throat, but I don’t know what else to do, but there is another drug you can take which you could try. I am hypersensitive to medication as well, but I thought I should try medication as I am in so much pain every day and night. I Think you have to try the drugs first, and give them at least a month to work, (unless you have bad side effects) and if they do not work then to try other alternative health aids. I hope you find something that helps you.

valseag profile image
valseag

I can only tell you about my own experience with duloxetine. For me the side effects only lasted for a week, and then went away, except for it causing my gastritis to flare up (I don't know if gastritis is connected to fibro or not. I've had it on and off for years.)

After that, I had a honeymoon period of no pain and loads of energy - I felt fantastic but this only lasted three months, then fatigue set in and has continued ever since. But the pain hasn't come back.

Overall, I have been on dulox 30mg for 10 months now, it has kept the pain to a minimum but hasn't helped with fatigue - or indeed I don't know if it could have made the fatigue worse. Re: sleep, I don't feel it has affected my sleep in the long term, ie I still have good + bad days of sleep just like I did before. For anyone considering it, I would suggest tracking your symptoms for a week or two, then trying it for six months, evaluate at that point what effect it has had on you and if it hasn't helped you can stop it. Just be aware that to stop taking it you need to do it with guidance + support from GP, tapering it off slowly, and it does have withdrawal effects.

I hope this helps + that you find a treatment that works for you.

valseag profile image
valseag in reply to valseag

I'm adding an update to say that I've now come off the duloxetine, after coming across quite a few posts of people reporting fatigue as a side effect of the drug I needed to stop taking it to see if it made a difference to me. So far it's too soon to tell, I may feel slightly better without it but have to wait a few weeks more for my symptoms to settle before I can assess if it was helping or making things worse for me.

557755 profile image
557755

I have been on Duloxotine for about a year now, starting on dose of 30mg and increasing 30mg every 3 months and now I’m on the top dose of 120mg. Each increase improved my pain and now I mainly only get hips, neck and shoulders in flares when I overdo things, which I can cope with using heat and co-codomol. The pain everywhere and dead arms, pins and needles have gone. My main side effect with each increase was dry mouth but that went after 2-3 weeks. As with any antidepressant, when first starting you get worse before you get better but side effects go within 2-3 weeks. I also take 2 Gabepentin 3 times a day. Life is much better since starting these medications although neither have changed the fatigue side of things - but I don’t think they are meant to - they are to reduce pain. Before starting the Duloxotine I was on long term sick. However, I’m now back teaching full time.

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