Duloxetine : Hi. Does anyone have... - Fibromyalgia Acti...

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Duloxetine

Seraphina56 profile image
20 Replies

Hi. Does anyone have experience with Duloxetine. Prescribed for Post Viral Fatigue Syndrome to regulate sleep. Not sure I want to take it.

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Seraphina56 profile image
Seraphina56
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20 Replies
desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

as this is a forum for fibromyalgia I am not sure if this will be the place to get an answer to your question.

Seraphina56 profile image
Seraphina56 in reply to desquinn

Thanks for this. The info I’ve found on it says that amongst other things it is used for fibromyalgia. When I posted I had to choose a community and couldn’t see how I could choose more than one. So chose this one. I’ll try another one. Thanks.

in reply to Seraphina56

Hi

I'm on duloxetine plus 4 other pain meds, these just about take the edge off so that I can at least get out of bed in a morning!! Hope it helps you. Take care and stay safe Lynne

VintageMustard profile image
VintageMustard in reply to Seraphina56

Hi, I took it for over a year. I had previously been taking Prozac(fluoxetine) along with ibuprofen and cocodamol but had to cease the Prozac in order to take the duloxetine. My fibromyalgia is linked to a post viral problem. I did stop taking it due to some unpleasant side effects.

Have you been seen at a sleep clinic? If not, then ask your GP to refer you to one. I went to one before I got a diagnosis as I wasn’t sleeping properly and had no energy after waking. This was to rule out sleep apnea, which thankfully I did not have.

Are you on any other medication and do you have any other problems other than not sleeping well?

Joycebastick profile image
Joycebastick

ye's I'm on them for depression

Ibelieveyou profile image
Ibelieveyou

Duloxetine is used to treat depression and anxiety. It is also used for pain caused by nerve damage associated with diabetes (diabetic peripheral neuropathy).

Duloxetine is also used to treat fibromyalgia (muscle pain and stiffness) and chronic (long-lasting) pain that is related to muscles and bones.

Lottieonline profile image
Lottieonline

Me!

I’ve been on it for a couple of years.

It’s good, it’s helped me.

Very sweaty though but it could be because of the weather!

Archiesgran profile image
Archiesgran

Hi I was on duloxetine for a long time but I felt they weren’t helping so I came off them, what a difference it was like someone let the sunshine back into my life, but we’re not all the same, and it was years, good luck

Tootiepie profile image
Tootiepie

Hello Seraphina56, firstly I should let you know that I am not from a medical background and everyone’s reaction to drugs can be very different.

My experience with Duloxatine was very hard and severe. I experienced migraines, sickness, general headaches every day, dizziness, and thoughts of suicide. As if this was not enough (and I was encouraged to try to continue with it by my Dr as they said the side effects would probably calm down) when I tried to come off of it - the symptoms increased x10 !!!!! Including tinnitus. I felt extremely ill for two months both physically and mentally. I was desperate for help and started looking up Duloxatine online to see what I could learn. The basic facts that I have learnt is that Lilly the manufacturing company of Duloxatine are currently in a law suit with previous users of the medicine in the USA - because of withdrawal symptoms.

As I say, I am not a professional, I have no medical background. I am simply letting you know of my own personal experience with this particular drug - your own experience could be very very different and it may work for you.

Suze profile image
Suze in reply to Tootiepie

I have had a similar experience, and once I have finished tapering off of Gabapentin, I will be tapering myself off of Duloxetine too. I've taken it for almost 17 years, and had always put the weird side-effects (including Tinnitus and brain zaps) down to Fibro. After much research over the past couple years, I realised the truth, and I can't wait to get off of it! My Fibro pain has become much worse over the years, so the medication definitely hasn't done anything for me. But, everyone is different, as you said.

Tootiepie profile image
Tootiepie in reply to Suze

Oh Suze, I am so sorry to hear you have gone through the same. I found out from my Dr that the reasons n his surgery was using Duloxatine was because of its price drop. !!! I suggested that he contacted all his patients and warned them of the withdrawal symptoms. Please take it very slowly. My side effects got worse as I came off the drug - but it was SO worth it as now I no longer suffer from migraines, dizziness, sickness, tinnitus, brain zaps etc. Whilst coming off it my thoughts on suicide went through the roof to the point of searching the internet on methods of quick effective suicide methods. Not through not being able to cope with the side effects but a very deep depression. Please be very careful.

Tootiepie profile image
Tootiepie

Sorry Seraphina, one of my main symptoms when trying to come off Duloxatine was Brain Zaps - sometimes when I blinked or moved my eyes to the side.

I hope this helps.

Mollycooper11 profile image
Mollycooper11

I've been on it for years for depression, I take 120 mg and I think it has saved my life.

Tootiepie profile image
Tootiepie in reply to Mollycooper11

That’s it Mollycooper11 everyone’s reaction to certain drugs is different. Not everyone experiences the terrible bad side effects that I did. If it works for you then that is fantastic. I am extremely happy that you have found ‘your’ perfect drug.

Mollycooper11 profile image
Mollycooper11 in reply to Tootiepie

Nawww thank you so much xo

Millymoo1 profile image
Millymoo1

Slight nausea but I persisted and has been a life changing drug for me, changed my life around and anxiety has completely gone along with the miserable and oppressive thoughts around my pain and wellbeing. I’m much more positive and in control.

BaffledKaffy profile image
BaffledKaffy

I am happy that some find Duloxetine very helpful!

I am with Tootiepie ... but this is only my personal experience.* I have no medical training, but thankfully I do have a very understanding doctor who helps me! I have fibromyalgia, degenerative disc disease (9+ discs), arthritis, and more. Surgery is no longer an option.

I was on Cymbalta (Duloxetine later as the then newly released generic) for pain for 7 to 8 years, and experienced everything, plus, mentioned here (except thoughts of suicide). The longer I took it, the worse the side effects were.

As I am now tapering (*the only way you should come off of it in my opinion. Stopping cold turkey is horrible. I did that from 60mg to 30mg) The side effects are the same, maybe worse. I open the capsules and remove 5% of each new/current dosage of tiny, tiny beads every 4 to 6 weeks or so.

** I’ve been tapering off of 30mg for over 18 mos. **

This drug’s effects are the reason I left this group quite awhile ago, but I feel like I have enough improvement to try to return now. Many of the people on the site back when I was are no longer active, so I’ve felt a little hesitant about getting back into the group ...

*This is most important: everyone is different, and I am only one person telling about my own personal reaction to Duloxetine.

*But for me, it has been a “poison” that I did not recognize till too much later, so I suffered. BaffledKaffy

BaffledKaffy profile image
BaffledKaffy in reply to BaffledKaffy

I also have a surgically implanted “tens type battery & wires unit* that helps as a distraction from back pain ....

HappyHealthyGirl profile image
HappyHealthyGirl

Have you seen all the earlier posts on Duloxetine? There're quite a few!

Seraphina56 profile image
Seraphina56

Thanks for all your responses. Like with a lot of these drugs; for some it’s been a Godsend, for some, a disaster. I had a similar bad experience withdrawing from Tramadol after shingles pain, which has made me very wary. I needed it for two weeks and it took me nearly five months tapering it off. If I was in pain like many of you are, I’d probably take the Duloxetine, but I’m not, my problem is extreme fatigue and insomnia so I don’t think I’ll take the risk.

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