I hope everybody is doing well, and if you're not, I send my love to you and wishing you to have a better day very soon! 😘
I've been having regular flare ups of late and have really been struggling with the pain, my mental health and struggling with sleep again. I already had an appointment booked in to see my GP this Tuesday so I brought him up to date in regards to my pain and I told him that I'm sweating constantly and not just a little bit, but that I'm getting absolutely wet through even when it's not even that hot!
GP believes the sweating is a side effect of the Duloxetine and seeing that it's not helping with my pain and mental health, he decided to try me on a different medication called Venlafaxine. Before I can go on this I need to stop the Duloxetine. He said to do a fast wean down from 120mg taken once at night so on Tuesday night I was to go straight down to 60mg and then by weekend I'm to just stop taking it altogether. He's also increased my Amitriptyline from 10mg taken once at night time to 30mg taken once at night time.
Now on Wednesday I was sweating even more, although I know the weather has been quite warm but I knew the sweating was due to more than heat. I was also very tired all through the day, more tired than I usually am. Yesterday I felt terrible 😪 I literally could not stay awake and I was still getting wet thru!
Because there has been 2 changes to my meds, I can't work out what the cause is... is it that I'm withdrawing from the Duloxetine or is it is that I've increased the Amitriptyline and due to my having a higher dose, is the tiredness from that lasting right through the day time? And my mood has been very low.
Whichever it is, it has has really had a bad affect on me ☹️
I'm wondering if anyone on here has any experience of coming off Duloxetine and what effects it has had on you? And when you weaned down, was it done as quickly as he's asked me to do it or was it more of a gradual decrease? I'm just worried that I'm being taken off it very quickly 🤔
And also, who has taken Venlafaxine and is it any good for pain and moods?
I feel like I'm back at square one again and I've got a lot going on next week, I have my PIP assessment and I've to attend an assessment to go onto the insulin pump so I really want to start feeling better as quickly as I can as I don't want to fail any of these. I've been diabetic for 41 years and only now am I being offered the pump. Tbh I'm a bit annoyed that I have to prove that I know how to carb count and take my insulin properly....I think 41 years of doing this would show I've got enough experience 🫣
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misspicky82
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You have alot to deal with here. I was on Duloxitine prescribed by my last GP around 5 years ago whinst waiting for a diagnosis and i was exactly the same but put it down to hormones......I thought i was having hot flushes & sweating like crazy....it truly is horrible eh...I understand totaly.
I changed Doctor and with her guidance came off them over a two week period but I felt disgustingly unwell & yes my mental health was the same, just like yourself. But of course it passed.
Once diagnosed in 2022 I too was presceibed Venlafaxine which i found heaps better than Duloxtine for my fibro fog & me tal well being bot not the pain. I am still on Venlafaxine 175mg. However, I still had the dreadful sweating with these too I am so sorry to say. I am now 56 and my sweating is so much better but we also discovered that had an overactive thyroid which hugely contributed to my irregularity of body temperature which is so much better now too.
It may be an idea to mention thyroïde to Doc but in terms of the speed in which you are reducing does seem fast but perhaps he's suggested this knowing you will take another antidepressant immediately, not sure.
Such a shame this change couldn't wait until after your assessment but it hasn't & you know perhaps in a sense it's not such a hindrance as you will showing how poorly you are....sometimes bad timing can do in our favour.
I am not sure if I have helped but pur experiences are the same eh.
I wish you heaps of luck and hope someone can accompany you next week.
Please let us know how you get with both and hang on in there it's early days with the Venlafaxine and took me 2-3 weeks to feel better on it and I still am without the awful sweets. Trial & error is often the way but it takes time I know honey.
I'm sorry to hear you're going thru the sweats too but I'm glad you told me this as I was reading thru the Venlafaxine leaflet last night and it said about sweating 😓 thing is, I thought it was hormones too as I'm 42 and as I'm T1D I'm at risk of going thru menopause early. The only reason this hasn't been tested is bcoz I have the contraceptive implant fitted, however I'm thinking of having this out......there's no point having it in as I'm not sexually active. The only reason I had it refitted last time was bcoz it stops my periods but I have been having regular spotting of late so I do have a feeling some of it could be related to that maybe?
I started taking the Venlafaxine last night. I spoke to a good friend on here, I call her my sister coz we have become very close and supportive of each other, she said, like you that bcoz it's in the same group of antidepressants, it shouldn't really matter about me weaning off the duloxetine and he did say weekend anyway so I took the plunge and started it. I feel a bit nauseous this morning but that's nothing new for me anyway as I suffer with gastroparesis 😓
I totally get what you're saying about me being ill for my PIP assessment but it's over the telephone so they won't actually get to see how unwell I am. I just want to make sure I'm ready for any questions they will use to try and trip me up! I don't trust them whatsoever and I've been living like this for far too long....I should have put a claim in last year in all honesty.
I understand what you mean about trial and error also. I'm just worried now though that Venlafaxine isn't actually used for pain so am I being left without pain relief apart from dihydrocodiene which they are currently weaning me off? What will happen then as I can't tolerate anti-inflammatory meds.
I just feel like everything is up in the air again and I don't know what's ahead of me, again 😕
I'm glad it works for your mental health amd Fibro fog though, sometimes the fog is the worst! I really hope it does the same for me 🤞🏼
I'll keep you posted sweet and thankyou for your reply xxx
Sorry, I meant to ask you, what meds are you on for your pain now if Venlafaxine isn't helping with that? I'm on DHC at the moment but I'm being weaned off it coz it's opioid so I'm scared I'm going to be left with no pain relief and if the Venlafaxine doesn't do anything for pain, which it mentions nothing about in its leaflet, I don't know what I'll have in place to help with the pain 😩
You know for me the fog & confusion is the dreadful symptom of fibro that effects me the worst and Venlafaxine has certainly helped * continues to.
I have pain but have not found anything overly helpful & I'm currently experimenting with better food choices & foods that promote wellness but its a long & I've just started.
But i hope you are able to get on with Venlafaxine honey & that the Duloxotine reduction is not too gruesome to cope with.
Ooh I'll see if I can find that, thankyou. I am at a point where I need the money from PIP now, I have been out of work for over 2 years and I wasn't claiming the benefits that I was entitled to for a long time, I wasn't aware of it all as I've always worked. My son also has extra needs and I didn't claim for him for a very long time, again, I wasn't aware until his community nurse told me and helped me with the forms. But now at his renewal they've pushed him down 2 rates but only 2 changes have happened and it certainly. Doesn't amount to dropping it that much so I've appealed it. If I'm completely honest, I do think his extra care needs are a big part of what declined my health so much, I was caring for him, enough for another child and I was holding down a full time job which was a highly pressurised job too.
Well I've woken up today and my right knee is swollen so I'm using a crutch which hurts my back 😤 it happens now and then and they put it down to gouty arthritis. I had a feeling it might do this as it was hurting yesterday. I'm just waiting on some ice but I'm elevating it at the moment.
I'm feeling a lot better with the withdrawal now, I started taking the Venlafaxine so that seems to have helped. I really hope it works for me like it does for you. You've given me a lot of hope so thankyou 🙏🏼
Hello, I take my duloxtene tab before bed and I wake up so very hot in the morning, it does seem he is weening you off pretty fast , all I know and read mostly is it’s supposed too be done gradually, if you feel rubbish I would give 111 a call for advice as it’s the weekend, they are always very helpful I’ve found. better too seek advice for a piece of mind,they take all your info before passing too a doctor and then get back to you, my area does book appointments too be seen as well if need be, you’ve a busy week coming as well, I hope everything works out for with PIP, take care of your self xx
I stopped taking it now and I'm now taking the Venlafaxine. I was talking to a friend and they reminded me that Venlafaxine is in the same group of antidepressants as Duloxetine ssure didn't think it was worth going thru the withdrawal to go back on the same kind of medicine anyway which gave me food for thought. I feel a bit sick this morning but that it down as a side effect of Venlafaxine and I'm used to feeling sick with my gastroparesis anyway. I have plenty of anti sickness meds in for that.
I did actually sweat a bit less yesterday but still there. It's showing as a side effect for Venlafaxine too so we'll just have to see how I get on.
I am going to have my contraceptive implant removed next and get tested for menopause as I'm not sexually active anyway, I only had it refitted last time as it stops my periods but I've been having regular spotting recently so I could actually be going thru perimenopause also. I might aswell get tested for it.
Thankyou for your kind reply, I love this family on here ❤️ you are all so kind 😇
I had early change stopped at 44yrs ,so yes worth seeing your doc about that for sure , yes people are very kind &helpful, take it easy today ,it’s quite hot here in Suffolk , fans on and plenty of fluids for me xx
It's only 14 up in Manchester and it's cloudy, big change from the week just gone but I don't mind apart from the spells if rain we've had. It's always like this come weekend when the kids are home and then they don't go out 😟 I have another appointment with my GP on the 25th July so I'll discuss it with him then. My last GP said no, he didn't want to go down that road with me yet coz I'm too young! I am not too young at all and I'm at a higher risk of starting menopause early with T1D 🤷🏻♀️ my new GP is alot better, he wants me to be involved as much as I can be with my treatments so I'm sure he'll agree . It was mentioned by my diabetes consultant a year ago.
Heya, coming off duloxetine is horrific! I'm amazed they have reduced your dose so fast as it's the hardest one to stop! I found a natural serotonin supplement which really helped with the side effects of stopping the duloxetine.
I stopped taking it altogether last night and took the Venlafaxine instead, I'm hoping they will override any withdrawal effects that I'm having given its an SNRI like Duloxetine. I feel a little sick this morning but nothing major. I. Did notice yesterday that I wasn't as sweaty as I usually am too.
Will see how I get on but just wanted to stop being in WD and start getting on with the other meds instead. I think maybe that's why he was doing the taper so quickly. I could be wrong but if anything goes wrong I'll ring 111.
I.will definitely keep you all updated as to how I get on and thankyou for your reply and for your concern, you all mean alot to me in this group. My Fibro family ❤️
Oh Miss Picky, I am firstly sending you gentle hugs. I don't take the other meds you mentioned but I do take Amytriptyline. I take 150mg at night time, I can't sleep otherwise. I am also on Sertrilyne (don't know if I've spelt that right. I don't sweat profusely but I am always very hot. Even in the colder months I can wear vests and t-shirts and not be cold, I have a fan on every day next to me. Could the excessive sweating be menopausal? I am peri-menopausal so I don't know exactly how it works but I've always been hot to the touch for most of my life and don't really understand why. It's helpful to warm family members up after they've been outside which I don't mind at all. I've been ill with Fibro since 2010 - 2011 when I was 30. It's been a life changing medical diagnosis and I also struggle with mental health issues and it's really good that you are sharing that, I know that a lot of people don't know how to talk about mental health issues but the first step is reaching out. I'm on anti-depressants which are doing the job they are for but it doesn't magically make everything better, they just allow me the tools I need to get through the day. I'm always here for people to talk to, leave me a message and I will get back to you. It might not be the same day as fibro doesn't give me a routine but I will message you back. Stay strong hunny. Lots of love xoxo xxxx
Thank you for replying and yes I completely understand when you say you may not be able to respond as I have that same issue. I actually read your reply hours ago but I couldn't focus on writing back at that time. Brain fog, it's so debilitating at times 🤯🥴 what with that and young kids at the weekend, it's hard!
I've always had minor mental health issues from being a young adult, had a difficult relationship with my mother which impacted on me and I went thru a phase of cutting myself for a short time. Done that a couple of times as one offs at a later date but I'm done with that now, not been an issue for many years thanks to my partner and his family. My mother in law is my mum now. Unfortunately my dad isn't here anymore, he passed suddenly 9 years ago and that really shook my world. GP thinks that's what set my fibromyalgia off. And I've been struggling with my mental health for a few years now but I honestly feel the main factor in play is the decline in my health and the loss of my career that I worked so hard to get and I absolutely loved my job and miss it but I'm in no fit state now 😥😥. It's that what's really knocked my mental health but I'm sure losing my dad and others close to me is also linked and the fact my mum is so difficult.
I'm not afraid to share my story on here as everyone is so understanding and helpful.
Thankyou for your gentle hugs, I send some back to you 🤗🤗 it means alot 💖
I do think there could be a chance I'm in perimenopause, but I've got Nexplanon fitted so they can't do the test. Funny enough though I've got major period pains today and I have been spotting quite regularly of late but on the implant, I only ever had 1 light period a year and that's the only reason I had a new one put in. I'm thinking of having it taken out soon though, I'm not sexually active now so it would make sense to have it removed and get the test done then I know where I am with it.
Anyway, can I ask, have you put weight on with Sertraline? I've put a lot of weight on over the last 3 years, I know a lot of that is due to me being a lot less mobile but after being put on Duloxetine I've put even more on! I try to walk as much as possible but it's getting harder and harder. I'm getting referred to a pain clinic so hopefully they will show me some ways I can exercise safely and at my level as I really want to get some if the weight off me.
It's just a long road ahead, trial and error and I knew that when they diagnosed me, very recently in March this year but I've been struggling with pain for many years before that. Over the last 2 years, I've been very bad such resulted in losing my career. I'm just a bit peeved I have to start the whole cycle again if trialing a new medication and possibly going thru all the horrible side effects and me getting worse again before I start to feel any better. I just hope this works, I don't want to go thru all this over and over again.
hello lovely, I think it could be the amitryptiline making you so tired during the day.because the dosage is increased. I have taken it for years and it really suits me and helps with the fibro pain. But I manage with 10 or 20 mg now and yes,it makes you very drowsy ar first the next day. Not noticed any sweats though. I try to take mine quite early in the evening and that helps. So sorry you are going through this awful time lovely,I hope it is soon sorted for you for your meds. Take care x
Thankyou for your reply, it's really helpful. I do also feel it's the Amitriptyline causing daytime tiredness, but could be a little extra due to coming off the duloxetine maybe.
I'm trying to work out the best time in the evening to take the Amitriptyline, it's just that I have kids that don't go too bed until 9.30 so I don't like to take them too early bcoz of that as sometimes the Amitriptyline will knock me right out within 30 mins of taking it, especially more so since I increased it. But taking it at 9.30pm is too late for me. When dad is here and he's awake (he sometimes falls asleep on the couch after his tea) I then need to stay awake to make sure the kids go to sleep. I'm teaching them the importance of sticking to the rules just in case I'm asleep before their bedtime, I need to have confidence that they will go to sleep at 9.30pm. They do but they like to push it as much as they can so I've now resorted to taking their devices off them if they don't and that seems to work! But then I feel like a bad mum for not staying awake to send put them to bed 😥 Fibro mum guilt!!
They have to learn responsibility though so I'm not doing anything bad to them really.
I'll continue this for a week to give enough time for the duloxetine to get out of my system and then I'll know exactly how I'm feeling on my new med regimes and try and work out a good time to take them that will hopefully reduce the day time tiredness..
I don't recall seeing sweating as a side effect for Amitriptyline but it's definitely a side effect of the Venlafaxine also. I suppose it's all trial and error now to see which one has the least negative effects on me. Long journey ahead but will hopefully get there as quick as I possibly can!
Hi misspicky, I have been on Amitriptyline, Duloxatine and Venlafaxine so nothing new to me to hear what you’re saying. I’m a fella so sweats isn’t about hormones with me but I still had and still have them.
I wouldn’t be too concerned about the Amitriptyline, with these sorts of problem it’s a balancing act to get the mix right. I’m guessing that the dose has been raised to make its pain killing properties kick in. I have a low dose of Citalopram currently mainly for anxiety, I also take a low dose of Pregabalin which although it’s an anti convulsant it is also used for nerve pain.
The simple problem is that Fibromyalgia affects us all differently so requires different treatment; I was at my best with nothing at all but when winter came I had an enormous flare up and couldn’t cope without something to help. In reality Painkillers are not a recommended treatment for Fibromyalgia, they don’t work long term, your brain gets used to them and just ramps up the pain.
What’s helped me most is having an understanding of what the mechanism is that causes the pain. In very short easy to understand terms - your brain thinks you’re at risk of serious injury but it doesn’t know where from or where to, its response is to trigger widespread pain so that its got it covered. Problem is that it’s got it wrong, you’re not in any danger so the pain is unnecessary. The way I cope with it is to remember that I have had this pain for more or less 15 years now and I’m still here to be telling you what I think might help. It might sound a bit blazé but that’s how it is for me, you have other problems, I don’t so what works for me probably won’t work for you, but acceptance of the condition and the implications of having it to me is a very good start.
That is a very useful way to think about the pain ans I appreciate your advice greatly.
I struggle with not knowing what each day will be like and therefore not making any plans anymore. I used to enjoy life until this and other conditions to over my life and I fear I will never get most of it beck. I pushed thru for far too long and put work before my health. I was in a very highly pressurised job and my health difficulties took over and everything built up on top of me so I had to bite the bullet and be honest with my manager
That's where the majority of my mental health issues really kicked off, I feel robbed of my future after working so hard to get there. I hadn't prepared for this to happen and think I was naive.
I've got really bad brain fog right now and my eyes keep shutting so I hope I've made sense but I will re read again tomorrow.
for me personally I’ve tried all those MEDS and had no joy. They just created other problems. I am now on something that Doctors don’t prescribe because they can’t make any money out of it but it’s really really helped me. I wholly recommend LDN you will have to pay £20 a month approximately for it. my neurologist highly recommended it thank God he did.
You’re welcome I would look into LDN there is a Facebook page it’s really helpful and helped a lot of people, I’ve had zero side effects too . Good luck . Ps my Doctor said it can be a wonder drug if it works ( doesn’t work for all)
Can't really help much, but, I've been on Duloxotine for about 6 months and have been a bit overheated, didn't relate it to Duloxotine, but it fits with everything. Can't help with coming off it though, as I haven't. Good luck.
It was getting out of control the sweating 😓 especially when I went up to 120mg. I couldn't stand it, my clothes were wet thru within an hour of getting dressed and I could literally feel the sweat rolling down my chest, it was such a yucky feeling. I don't go out much anyway but I wouldn't leave the house at all with those sweats!! I've already noticed the sweating is calming down now, I'm completely off the duloxetine and I started the Venlafaxine last night, on 2nd night tonight
Dear misspicky, so sorry to know how tough things are for . I am on 120 mg Duloxitine, I tried weaning my self off slowly, didn't consult my GP as she was sure that was not the cause of my weight gain. I just went from 120 to 90 to 60 to 0 in about 4 weeks. With no side effects but same amount of disgusting sweats and no weight loss which was my main reason for going.I feel like my body chemistry has changed with fibro. I literally stink when I sweat, never did before, can't use anti perspirant now, really allergic. Can only use gentle organic deodorant cream which is not doing what I need. That's probably way more info than you need!
Duloxitine does help with my fibro, I felt worse without it, I guess that's the price I have to pay . I worry about going out, but I rarely do now.
My whole life has turned upside down because of fibromyalgia.
If you haven't noticed a significant improvement by taking other meds, go back to your GP. I'm sorry I can't help you,, except for you to know you're not alone.
I'm moving house soon, so new GP, and I will have to
see if they can help with all my issues. Unlikely I think. But🤞
Good luck with your PIP and I hope you get some good advice really soon. Sending virtual hugs. X
Fibromyalgia certainly does change your life and flips it up, round and upside down! I suffered for years with pain but approx 3-4 years ago the fatigue set in really badly. Then a year after, the brain fog, it was so debilitating that I couldn't continue with my job as a social worker. You can imagine trying to do that kind of job with brain fog, impossible!
I should have applied for PIP way before now but I was only diagnosed in March this year, went to a new GP who finally started looking into my medical history and doing physical examinations on me and sent me for xrays which resulted in 3 new diagnoses of Fibromyalgia, diabetic cheiroarthropathy and lumbar spondylitis. The latter 2 I'd been suffering with for 15 years and not 1 GP bothered to try and find out the problem, I was just given painkillers!
And no, that wasn't too much detail at all, I know exactly what you mean and I'm sure everyone on here understands you. There's so many things that Fibromyalgia can affect! I can't use aerosol deodorants anyway as I have allergies and they set me off badly so I've always used roll on. I use Sure Cotton Dry, 24 hour protection but they do one that's 72 hours protection also and I find them really good, you still sweat but it takes the BO away, under your arms anyway lol 😆 I do sometimes roll it on my chest if it's hot weather 😉 my sweating has really settled down now, think bcoz I stopped the duloxetine a couple of days ago and started the Venlafaxine which has helped with my withdrawals. Got to give it at least a couple of weeks to see any effects but fingers crossed 🤞🏼 it works better than duloxetine as that wasn't doing anything good for me!
I wish you lots of luck with your move and hope you find a really good GP, finding a good one really helps, and you definitely need a supportive one when you have our condition. Do some research and find one that either specialises in fibromyalgia or in rheumatology, and remember you can always see other GPs within the same practice. That's what I did and it has made all the difference in a positive way ☺️
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