Fibromyalgia Action UK
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Amitriptyline

Hiya

My nurse has just given me Amitriptyline to add to my arthritis pills. Remy Doctor says I’ve scored 17/18 for fibromyalgia.

Question I want to ask is any tips when you first start on them. I no to put in my mouth lol.

Any thing would help x

Thanks

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They do give you quite a drowsy feeling in the morning, so depending on what time you have to get up you will need to experiment with the best time to take them in the evening. 7pm is probably a good time to start with.

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Hi

I’m normally up about 7/8 if I’m lucky.

Thanks for reply x

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I’ve been taking Amitriptyline for just over 3 weeks. How much are you taking? I’m on 10mg and I find it takes the edge off the pain at night but pain comes back in the morning. When I first started taking them I slept a lot better too and I am sleeping better than I was before starting them some nights I am awake a lot. The only side affect I’ve had is a dry mouth in the morning. It can take a few weeks to get into your system so you need to give it a chance. My gp told me to stay on this dose until I see him at the end of June. I’m thinking I might need a stronger dose but need to wait a few more weeks before making that decision. Good luck with it 😀😀

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I’ve being asked to also start on 10mg. I’m used to side affects with methotrexate and sulfasalazine so guess one more won’t hurt lol my rheumy nurse give me a months worth to see how I get along with them. Thanks for your reply x

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Hi not sure how often to take I would take after 6 at night if you can and might help sleep and be a bit better in mornings

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Hi jay

My nurse said take at bedtime but she said that about methotrexate too and I no I find taking that at teatime is better for me. I no a lot of ppl take it but wasn’t sure what’s best 🙂 x

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No your right everyone diff .methotrexate as long as you take same time with that i took mine at 11 in morning .hope the methrotrexate works it is a hellish drug did not work for me and had side effects upto a year after stopping .any problems come off them .take care

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Thanks

I’ve being on it a year had few problems at start but it’s been fine so far it’s sulfasalazine that’s giving me problems mainly with my hair had long thick hair at Christmas now got long thin hair rehmy said to half my dose and see if makes difference but we will see I’m going to be a skin head soon lol x

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I had the same effects with Methatrexate the doctors even put me on the injections. It was hell on earth, I also took Sulfasalazine, never again. I still take Pregablin 50mg, one morning one at night, the doctor has me on Benepali for Rhuematoid arthritis so far it works. From the very beginning of being diagnosed I have found that it paid to get up and move when I felt sleepy, yes it is uncomfortable but you get used to it and at least have a life. I am determined not to sleep my life away and to rest when I really need it and to move when I feel myself going into the " oh! Poor me syndrome ", if you have to rest , knit, sew, embroider, paint do anything rather than let your illness win. By taking your time and wasting it. Remember to keep control and don't let this blot your landscape.

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Yeh you are right .I never God any more disease modifed drugs glad in one way but not another .rumatology said unless inflamation in blood no more painkillers the way ahead .glad you have the fight to help you .i need to do that more .the 321 tool 321 go helps .hope your copeing and doing well .

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What do you take for your pains jay x

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I've tryed them all .I'm on a mixture with different dosage .I take to dyhydracodine .pregablin .paracetomel .naproxen.fentynal patch (low dozage).was tramadol as well that stopped and pregablin increased..have tryed. Co. Codamal do not like the one.p.s for sleep trazadone instead of amitryptiline.

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So you rattle just like me lol x

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I ha ha .sometimes you just cannot take them all .or you try without and suffer

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Yeah I no think we all do would be brill if could all be put into one lol x

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I’m with you there. Some days it’s so bad but I still push myself to move. My dad always used to said you lie down either in your box u don’t have to lie down now lol. Couple of my fingers have gone abit I bought one of them adult colouring books and it’s quite relaxing plus keeps my fingers moving. I also say I’ve got arthritis not arthritis got me 🙂

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Ha ha .good your takeing to methrotrexate .rhumy may take you of fulslfasalazine .good luck hope hair stops and get back to normal

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Yeah that’s what she said may have to try something else. I’m hoping so too lol thanks jay x

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I am also on them and I take mine at 5 o'clock every night and go to bed about 10 . I find if I take them earlier or go bed later they don't work obviously though if I take at 6 I'd go bed at 11.... but everyone is different xx

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So your saying to give about 5 hours before bed. Do they knock u out quick x

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As I say everyone is different but if I take about 5 and go bed at 10 I usually get a great sleep .... but when I wake up that's me up ... there's no trying to get back to sleep your eyes ping open. And that's you up for the day lol zx

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Does it help your pains x

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It does during the night .... and it gives me a good sleep but mine is also as an anti depressant ..... I don't wake up as sore as I was before taking them .... but that's all xx

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Ok I see was hoping for during day too. Well guess il know when I start myself.

Thanks 🙂

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It may help you during the day tablets affect us all differently .... let me know how you get on pal xx

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Yeah I no see how it gets along with my arthritis pills x

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Good luck pal xx

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Hi ive just started amitriptyline 10mg this week,ive been put on them for headaches and sleep,i take mine just before i go to sleep they do make me a little groggy in the morning but i need to persevere with them,i been told i can increase them by one after 4/5days up to a max of 5 a night,i live in chronic daily pain i have fibro,heds,me,arthritis,lumber and cervical spondylosis,ibs,depression anxiety but to name but a few,im also 9wks po from a tkr,take care and i hope you get on ok and find the right dose and the right time to take them joanne x

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Hi

I’ve also arthritis and fibo and chronic pain I’ve been giving them to help with sleep too don’t think I’m depressed even though docs etc keep saying I am 🙂

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Hello lol.just go along with that you may be depressed as doc says they may notice small changes like mood etc chronic pain does come with depression in a lot of people . .but say you do not want anymore tabs etc for that and put that on your long list for pip etc .

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I’m waiting for pip to give me results of interview lol but Im not sure if it’s too late to add this to my list as got text off them last week 🙂

Hello

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No just mention it not to important you can mention later .got go take care

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Yes if I get turned down lol ok tc 🙂

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I was bit woozy to start but side effects soon stop. Take mine 7,30 so I can get up about 7am. It’s about adjusting the time so you don’t struggle to wake up.

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I’m guessing you still work. Don’t think any pills have no side affects. So I’m finding with all the ones I’m on it’s never ending circle x

Thanks 🙂

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Swallow quickly they taste disgusting!!! 😝

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Lol thanks Kate 😳

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The advice I was given is to take them 12 hours before you get up. So if you're up at 6am take them at 6pm etc.

I hope they help.

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Thanks Karen my nurse said evening but I no with all pills different times work better x

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I found taking them an hour before bed (as normally advised) made me feel groggy in the morning so I now have them about 2 hours before. You may still get that with them being new to you but it should settle.

Good luck!

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Yes that’s what my rheumy nurse advised me but I no on few other of my pills it doesn’t always work that way 🙂

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I started them again on Tuesday I felt so bad yesterday that I didn’t take them again. However I was on them before for a long time and I was absolutely fine. The best time to take them is around a hour before bedtime.

I truly hope that they help you sweetie. Love and hugs 🤗🤗🌹🌹😘😘

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That’s my fear has I’ve couple of appointments booked that I won’t get to them with these new pills x

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Only start with one sweetie and then you can slowly increase them if needed. I am sure that you will be ok if it’s a very small dose going to your appointments. Love and hugs 🤗🤗😘😘🌹🌿🌹🌿

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Thanks jan 🙂

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I take 50mg every night, I take it about 10.30 when I get into bed and it helps to fall asleep. It should work within about an hour so taking them around 5/6 is far too early.

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My nurse said an hour before but she’s not always right lol so I’ve found with other pills. Thanks 🙂

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I used to take these, but they caused incontinence so was taken off them, incontinence has now gonegone

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Oh that’s not good not something I want. Thanks Catherine 🙂

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Well, I've been given them to help with the need to get up three times a night! I only get up once now. Be careful with alcohol as they intensify the effects and make you sleepy, till you get used to them.

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Hi

I don’t drink as I’m already on some serious medication. But all can do is try I guess 🙂

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Then you'll find it a lovely med to take. It's soothing and it does help the other painkillers to do their work. My mum was riddled with OA, RA, Sjogren's, u deractive thyroid and heart disease so she also had some Class As in her repeat prescriptions but she found that the amitriptyline just gave her a better sleep. Good luck with it!

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Thanks I’ve also got arthritis. And high blood pressure.

🙂

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Just in case you are one of those who have thyroid problems also, Amytriptylene also blocks CoQ10 and Riboflavin which your body needs so it may be unhelpful. Noratriptylene does the same. Prozac is different and blocks iodine.

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No I’ve just arthritis and high blood pressure at minute touch wood 🙂

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Take them early evening about 7.30 to 8.00. I am now on 50mg but I believe you can go up to 70mg a night. Can be sleepy in the morning but after a cup of tea you soon feel good with no other after effects. Hope it works for you.

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Thanks Stan 🙂

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Hi, all I can say is to start on a low dose and gradually increase. They will make you tired but also will relax you more.

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Thanks Kev I’m starting on 10 that’s what my nurse says to see if helps 🙂

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10 is fine to start. But like all meds your body will get immune to it. So gradually increase it. I have been on them for a year, and they really help me. Not just the pain but also my mood. No grumpyness since I started lol. Everyone on here is so helpful and kind. You can talk about anything and will always get a reply from someone. X

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Lol I don’t think I’m grumpy my docs keep putting it in my notes thou 🙂

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That's the spirit. Try always to think positive. It won't cure the pain but will make you feel better. I am always here if you want to chat.

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Thanks pet 🙂

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they put some very strange things in your notes. I went to see my GP, and one of the first things he said to me was, 'your house is in negative equity isn't it', since I don't have a mortgage this would be impossible, and why this would be in my medical notes is a complete mystery. the only thing we could come up with, is that somebody at the surgery put it in the wrong notes. which doesn't say a great deal for your life in their hands does it.

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Yes but I’m guessing they think cus I’ve arthritis I’m in pain so that must make me depressed. That’s only way they can come up with it lol so as I’ve fibo too I must be yet half time doctors don’t have time to talk to u lol 🙂

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I take mine at 7pm I then goto bed at 9.30pm. In the morning I feel fine, they do work for me.

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That’s good glad working 🙂

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Hi I was taking these tablets on a low dose but didn't make any difference to me so my doctor increased the dose, I can't remember what it was I think about 40 mg but after a short while I started sweating profusely, I didn't think it was the tablets as I had started the menopause, then my vision was blurry and I was dizzy even if I moved my head from side to side. I put up with it for a while but the sweating was so bad it was just dripping from me and my vision was really bad,it was at this point I read the leaflet with the tablets and two of the side effects were sweating and impaired vision so I stopped taking them and in a short while everything was back to normal. I am sure you will be fine but on them,my body just didn't like them,just wanted you to know in case you get any problems.

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Hi

Thanks bessy I’ve one of them bodies too tends to fight that’s one of my worries as I live alone if I suffer the dizziness x

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I've been taking Amitriptyline for just over a month now, I started at 10mg taking them at 7pm, was asleep before 12. During the day I felt fatigue and the fibro fog was really bad and I couldn't think and just kept zoning out. But then the side effects went away and felt much better on them.

Was told to increase to 20mg as I found I was now unable to sleep on 10mg. It has worked but I'm now not able to sleep again!

Hopefully these will work for you! X

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Hi

Thanks mill I also suffer with fatigue with my arthritis so I’m used to that one.

🙂

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Hi I also take Amatrypaline as a nerve relief for my back pain, it serves quite a few illnesses.

I take quite a few pain and nerve relief to be honest though they do make you drowsy

You should start at the lower dosage then up the dosage of required.

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Yes I’ve being reading up on them stu. I can see it is for lots of things just being drowsy I’m not keen on has I live alone 😳

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I haven't found any probs with it although still on v low dose. I take it at 5.30pm because apparently it can cause drowsiness and I get up at 5am for work so needs time to work itself out. Never go out on a 'school night' so hasn't interfered with social life. If I'm going out I take it later.

Don't know yet if it's making any difference although I don't think my leg pains in particular are as bad. I scored 16/18, am on Methotrexate and anti-TNF for RA (plus all the usual NSAIDs etc) and hasn't caused any problems with those.

Remaining positive that it will a) help and that b) I'll tolerate higher doses as easily.

Good luck!

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Thanks

I’m on methotrexate and sulfasalazine plus high blood pressure plus few others think all I do is add more pills to pop lol x

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Amitriptyline for me and others I know does nothing for my arthritis, nor my Fibromyalgia. I find it to just be the pacifier or start for most every doctor. Im sorry to say. Although I do take the Amitriptyline for my sleep. I refuse to take sleep medicine and my sleep is terrible. I have found if I take 1/2 the dose about an hour before bed, or if Im really restless the whole dose it helps me sleep. With my Fibromyalgia and Arthritis I can go days even weeks before I sleep all night. This really helps with that and my restless legs and arms. So I have to say for me I like having the Amitriptyline, but not for the reasons the dr gave it to me at first for. I really hope it works for you. Its a mild drug is why they all start you on it. Good luck

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Yeah you sound like me I don’t wanna get hooked on anything to help me sleep. I’m same sleep wise. So it’s not going to do nothing for my arthritis.

Ok thanks Katie for your feedback 🙂

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Been on amitriptyline a year, started off on only 5 mcg over summer...took edge of pain in hips/ legs allowing me to get to sleep, taking cocodamol/ ibuprofen too. Needed to up this late October as pain got worse, with cold etc, to 10 mcg , but again early May cut back again. Don't like taking pills unless really necessary, and amitriptyline does give you a better sleep. Take mine c. 9 pm, but I don't have to get up early and sometimes need a lie in, so ok. The drug instructions are for people on much higher doses for depression, so unlikely to get hooked on them at low dose.

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Thanks Judith

For your reply. Don’t think anyone likes talking pills but unfortunately we have no choice sometimes. Think I’d rather be pain free than sleep free. 🙂

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Hiya

I’ve been on them since 2008 following a car accident - I take mine after dinner as have to be up at 7am if I take them late I’m drowsy as anything so 6-7pm is a good time depending on your lifestyle.. I’m on 75mg now ..

I’m still waiting for rheumatologist appointment which is August!! Went to drs with leg pain not ache pain .. and saw different GP - he told me I just had fatty tissue and that was causing the cramps and burning stinging pains .. I can’t walk sometimes 😒... I’ve got loads of symptoms like joint pains which change - sore muscles and nerve pain - temperature problems regulating ..foot pain hand cramps ..just a few - I mentioned fibromyalgia his reply was it’s just a label when drs don’t know the issue - so he said go on cross trainer every day and diet etc ..I can barely walk after work ( another thing I’m struggling to keep doing) I have a very active job and walk around 17000 steps a day that’s exhausting never mind any more ..I was upset at his ignorance I rang the practice manager - I said people could take their own life being generalised as just lazy etc - when you suffer like we do that’s the last thing we are xx I hope they help you by the way 👍

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Thanks peaches

You sound like I was I was catering cook. So always on feet all day I had an accident at work slipped on some juice and bounced my hip out of joint started with my knees then started to affect other areas but after many X-rays and tests I was told I had arthritis and given some pills then about 18

months after I was told also got fibo to go with it but now. August is a canny way off. Some doctors have got no idea what they doing. My 1st Gp was brilliant but new one not x

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I’m defo heading for fybro diagnosis - I’ve got all the triggers pain points and symptoms are text book - it seems fairly common following traumas and life changes events - quite a few people I’ve met who now have Fybro had an accident or a trauma of some kind .. interesting what caused it - nasty

Illness - I have one good GP and the one who really upset me as above ... rheumatologist 3rd August can’t wait ..in the meantime I can’t regulate temperature and pain is severe ... I can’t sleep without amytriptyline - it does help numb pain in the legs especially .. when I’ve been low or run out - restless legs isn’t the word (climbing the walls 😐) ... currently really struggling to regulate temperature so I’m Always in shorts and vest top still get hot can’t cool down - then can be freezing ..my worst symptom and so embarrassing- the more I’m on my feet the worse the pain gets - natures way of stopping us I guess xx

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I don’t want to scare you but I have taken them for twenty years plus and I heard on a news programme. That your 30% more likely to get dementia with taking them .I have stopped them dead . They make you tired drowsy weight gain wellbthey did me . They do help you sleep but after a while it stops . Xx

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I will have to google that one. I think every pill I take says weight gain but so far I’ve not. My nurse only give me few weeks to try 🙂

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I think it was on the Wright show , when they go through the morning papers . I put a lot of weight on with them . X🤗😇

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I watch that show everyday going miss Matthew when he leaves 😂

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Me too I’m so sad about it , he is great and fair even when he doesn’t agree . Wonder who they will get , won’t be the same will it . X🤗😇🦋

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Your right about dementia I’ve just google it lol x

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Even when he’s not on it’s not the same. Can’t really call show same name neither. X

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I have too and it’s not just that drug it’s opoids too which I take oh my word it’s a nightmare .what you going to do xx🤗🦋😇

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Ooh that’s not good. I’m going to disgust it with my Gp as i need to no x

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I know I don’t like it when he is not on . Who do you think could be in the running? Richard madley, Anne diamond I haven’t got a clue xx🤗🦋😇🤗

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Lol guess we will get clue soon x

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I’m sure he leaves end of June early July .xx😘🤗😇🦋

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Hello I don’t take them but it seems plenty of members do I feel that as far as medication We all got to look at getting of it rather than increasing , So see how you go if they work all well and good

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4yrs a go I wasn’t popping any pills now I’m a rattle I’m taking pills to stop side affects from pills I’m on lol mad ain’t it 🙂

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Hi just take with water swallow whole don't half them they won't work you will feel a big groggy in morning but it will get better you just got to take them regularly as wont work if you just take now and again and you will always feels groggy it gets better as you take them x

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I the mine half hour before I want to go bed I am up at 6 every morning I am on 50mg a night

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It’s same with all pills if you don’t take regular you not feel benefits. Thanks for reply Rachel 🙂

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Hi I've been on amitriptyline for 2 years or more...I am now finding their effects aren't so good after this period of time. They are a tricyclic drug which means they can be used for more than one thing dependant on the dose. The higher the dose they change in to an antidepressant too.

They tend to make my mouth still very dry in the morning. I take 50mg at night.

Hope you get on with them. Xx

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Thanks for your reply 🙂

I’m used to dry mouth get that with one of my other pills x

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I have always found it better to take them in the evening I have been on them for a number of years and do not get any side effects

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Thanks for your reply 🙂

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Have you or anyone been suffering with really bad itching i started them on monday and im itching til i bleed think i may have to stop them plus they have done nothing for my headaches had a thick head every morning this week joanne x

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Hope someone can help you joe thanks for reply 🙂

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Hi Nutty! I've been taking them for years. After my 3-monthly steroid injection I go back down to 50mg of Amitriptyline. As the steroid wears of I go up to 75mg & if I'm really bad, 100mg.

Everyone is different. My side effects are dry mouth & eyes. I get eye drops for daytime, a thicker gel for nighttime. I also have alternate appointments every three months with the dentist & hygienist & use a prescription toothpaste, mild mouthwash (Xeostom) & Salivix pastilles (that stop that sudden dryness in your mouth when you speak to people)!

Somebody mentioned thin hair. Mine was falling out some time ago and I started taking Vit D and someone recommended bamboo shampoo (OGX). I don't want to advertise but when something works, it's worth knowing about! Take care. xx

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Hiya TOD

Yeah it’s like any pill is different for everyone. I get hair lose from my Dmards I’m going to be bald at this rate lol thanks for tip thou 🙂

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I'm on 50mg. I have to take them about an hour before I want to go to sleep, so I take them in bed and then read until I just can't keep my eyes open anymore. I tried taking them whilst downstairs, but the combination o them and gabapentin made me feel a bit woozy, to the point that I felt almost drunk, and fell upstairs. I learnt my lesson!! I hope you find the best time for you. X

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Thanks debs I don’t have that problem I live in a flat lol. I like to read think it’s relaxing 😌

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Don't take your Amitriptyline until you already settled into bed and ready to sleep. Otherwise you could end up sleepwalking, sleep eating, and/or hurting yourself.

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I have been taking Amitroptyline for around two weeks now. I have found they do indeed help with my sleeping as not so restless trying to get comfortable with the constant nagging pain but I have also ( whether I am imagining it I dont know!) but the pain in the daytime seems to have increased.....

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I’m taking Amitriptyline too and like you I find my daytime pain is getting worse. I’ve been taking it for just over a month and I’m not finding that I’m not sleeping well most nights and it does not help the pain as much. What dose are you taking? 😀😀

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Im only taking 10mg but that seems plenty for a good nights sleep :-)

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