Amitripyline: Any one with fibromyalgia... - Fibromyalgia Acti...

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Amitripyline

MarilynRose profile image
21 Replies

Any one with fibromyalgia on Amitriptyline how are you getting on with it and does it work it was my first 10mg yesterday.

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MarilynRose
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21 Replies
JayCeon profile image
JayCeon

Hi... some are on it long term with no problems, some like me have a lot problems (8-9 side effects) and hardly any help (zombified instead of giving me restorative sleep with less breaks, no pain help).

Many seem to start on 10mg - I was told to start on half, since I'm med-oversensitive, but forgot, and the whole 10mg gave me a splitting headache for over a day. Went back and got 2mg-drops instead and weaned it in, experimented between 2mg and 26mg, then started anew with tablets, 10mg 2-3 weeks, then 25mg, but much too severe side effects for me, so I stopped after 4 months.

sotolol profile image
sotolol in reply to JayCeon

I find it ok been on it years for back injury. It helps with pain migraine and sleep. No side effects at all I take 20mg at night. Everyone is different so keep going and if it gets too much you can always stop. It takes a while to get into your system. I haven't put on weight either.

Good luck.

nuttynan profile image
nuttynan in reply to JayCeon

I had to stop taking it as it was bad for my heart. Tried several times no good for me.

Arymretep profile image
Arymretep in reply to nuttynan

Yes I was told not to take it by a hospital consultant because I suffered with palpitations

crochetjoy profile image
crochetjoy

Hello, yes I am on amitryptyline 10mg at nightHave been on same dose for 5 years approximately

I have found it helps me sleep, pretty much cured my severe headaches and also helped my restless legs

I know from this forum, however, that everyone is different with it but my experience has been good

Wishing you well with it, it does take a while to start working also

Cat00 profile image
Cat00

I'm on 90 mg, been on btn 50 mg and 150 mg over 15 years. I take it because it helps me fall asleep, unfortunately it doesn't help me stay asleep. It doesn't help my pain but I hardly sleep as it is so I wouldn't be without it.

mjrminor profile image
mjrminor

I've been on it for about 8 weeks now, 20mg. After about 6 weeks I was sleeping a little more but started waking up with terrible back pain that went away after a few hours, and I was still feeling groggy throughout the day despite taking the meds at 7 pm every evening. My GP has now added Gabapentin into the mix, which I've been taking along with the amatriptyline for 2 weeks now. I'm sleeping a little better and the grogginess has improved somewhat, but the back pain persists. My other fibro pains are still hanging around too, but I guess it's still early days and I need to give the meds more time.

I hope the amitriptyline works for you, but if not there are alternatives to try.

I have been on Amitriptyline for quite a few years now 40mg which I take early evening it helps with nerve pain and sleep however with any medication it takes about 2 weeks after you start taking it to feel any benefit.. I do not have any side effects because I take it early evening if I took it later I expect it would make me a bit groggy. Good luck and remember everyone is different what works for one person may not work for another. .

Lemonyblue profile image
Lemonyblue in reply to

Hi Mistyang, may I ask if the Amitriptyline really helps with nerve pain. I have terrible burning and itchiness on my skin and am wondering whether to give it a try, thank you.

in reply to Lemonyblue

It certainly helps me Lemonyblue because of it I manage to get some sleep. It does help the nerve pain for me. The other thing which helps with itchy skin is aloe vera gel which I buy from Amazon. Hope it would help you too its worth a try.

Rossibaby46 profile image
Rossibaby46

I started on 10mgs, and was asked to increase the dose by 10mgs each week. I am now taking 60mgs at night. The side effects for the first few weeks were awful, zombie state in the morning, constant headache, but if you can stick with it, the side effects do go away. I am now in a lot less pain than i was, and can do more, also helps me sleep, and my restless leg syndrome has improved.

Macdoual profile image
Macdoual

I've been on it almost 2 years and it has made a huge difference. Pre meds I would be lucky to get 2 hours sleep due to pain and leg spasms, I now sleep at least 8 hours and the leg spasms have calmed down. I was on 20mg until December then I had it increased to 50mg as I was having a lot of migraines. I would definitely say to anyone to give it a try. Good luck and take care.

Welshcatlady profile image
Welshcatlady

Hi, I have been taking Amitriptyline for 3 to 4 years now, GP started me off on 10mg but that did nothing for me, gradually increased to 50 mg, which helps me sleep but does nothing for the pain, I have no side effects at all. But as others have said we are not all the same, some have terrible side effects. So it's worth a try and see how you get on.

Keyros profile image
Keyros

Hi, I was recently diagnosed back in November. I have been put on amitriptyline, I started on 10mg then progressed to 20mg. Currently just increased to 30mg. So far it helps me sleep, I'm not waking up in pain. However it doesn't help with pain levels during the day. I'm also on citalipram 10mg, and co codamol as and when I need it. It seems everyone has different meds and it's what suits you, unfortunately it can take a long time to get the balance right. I'm still in the process of getting it right. This is a great forum for hearing fellow fibro's experiences. You're not alone on your journey, I hope you have a good GP and above all, be kind to yourself.

fabpup01 profile image
fabpup01

Hi Marilyn,I’ve been on it for a number of years now. I started on 10mg and now take 75mg and I know I wouldn’t sleep at all without it. It enables me to have a few hours sleep together and I’ve had no side effects. Good luck with it and I really hope it helps you 🙏

Amitriptyline this is a TCA’s tricyclic antidepressant – Most common medication to treat fibromyalgia, normally given as first line drug.

For me it gave me a negative mood, agitation slight aggression although at the time I was also on the Anticonvulsant Pregabalin,. From a medication point of view it is important to note the side effects of any drug will be effected if you are taking other meds.

I also found it useful to understand what drug class I took as this helped me to understand my conditions symptoms with what drug I took. TCA or tricyclic antidepressant, some evidence shows these meds work best with fibro and sleep.

The drug I did take another tricyclic antidepressant (same class as amitriptyline) is "Nortriptyline" this drug has been in trials for fibromyalgia and blind tests showed positive efficacy.

You can find more info about medication on the UK national drug database drugs.com, you can search the drug or condition, extremely helpful if you are tying to help yourself rather then leave it to the professional? Well what I mean you know yourself better than anyone, once you know what class of drug you are taking, it improved the journey for me.

Interesting antidepressants were designed for a 6 month course to get you over a bad period of anxiety or depression, max two year, so it kind of fits with the time they seem to work before you need to change drugs.

LordWhiteley profile image
LordWhiteley

I’ve just been put back on it because my Migraines have got so regular. I don’t remember it making much difference the first time I was on it. The GP said they just keep upping the dose until it’s starts making a difference, but it didn’t in my case but I wasn’t aware of my Fibromyalgia at that time. My fatigue and Migraines have been really bad of late. I have to have 3 bed rests a day at the moment. A couple of months ago I was running 5km twice a week and so I don’t know why it’s so bad - continuously foggy/drowsy all the time ??

syedahuda profile image
syedahuda

Hi MarilynI used to take 5mg half Amitriptyline start 20 years for migraine if used to take 10 mg I couldn’t get from sleep and I had to go to work. I nearly spend £1000 in acupuncture it was very good I used to sleep like a baby. I couldn’t complete my therapy I was taking 10mg and panadols. Since May 2018 I was travelling with my husband we was in tube so have to come out at Euston station the way coming home I was feeling drowsy I have felt my all body collapsing couldn’t balance end up in hospital after diagnosed hypertension and left leg was complete numb I couldn’t walk properly I requested to MRI scan report came I have 3 discs prolapsed I was Gabapentin 1200mg a day and 8 Panadols a day. Stop Gabapentin because putting weight on change to Naproxin 500mg three times a day, 20mg Amtrtyline at night and 8 Panadols a day. I started walking with walking stick since last year November work stress my chronic pain got more worse and also I had covid 19 in the New year. I had a Omicron variant I house bound at the since January 2022. I am taking 60mg Amitriptyline at night I been told take up to 75mg. I cannot do house chore I have lost my job because unwell my contract finished I am person too busy look after worry about friends, family and client didn’t spent quality time I put priority work first. that is why I have have severe pain all over body including my jaw I have £600 pound on private dentist. I think amitriptyline helping.

dinahdabble profile image
dinahdabble

Yes, I am on amitryptolin, though I can never spell it right (I am dyslexic, so bare with me on it).

On the plus, plus, plus side it really helps my muscles relax and stops me getting into a cycle of tension setting off pain, and then more tension until I am just sitting trying to relax muscle after muscle while the pain follows the tension. Also, it helps me sleep.

On the minus side I have an amitryptolin tummy. If you know anyone who was treated for depression back when amitryptolin was used for depression you will have heard from them what the tummy is like. It is a fat bulge at the front, just bellow the ribs, not quite like a beer belly, higher up. We all got them during the amitryptolin hay day for depression, bipolar and such like. You tended to get them worse with higher doses. Back then you might be put on 100mg for depression, but fairly small doses could do it with some people.

It was allways waved away as "your just eating more now you are being treated" and "it's not a problem" and so on. The trouble is that the tummy put's pressure on various organs, so it can turn out to be a serious problem. Stomach reflux might get worse, pelvic prolaps can get worse, back problems, heart problems like palpitation, diabetes - it seems to be the bulge itself that starts the trouble, or makes it worse if you have a problem already. You will soon know if you are going to be affected in some adverse way

because if you don't get the tummy, it shouldn't cause you any problems,

and as I say, not many people get it on low doses.

I know this sounds simplistic, but honestly, everybody had the same set of problems back then. After I recovered from depression I came off it, and the tummy dissapered along with the various other problems, only to return when I went back on it with the fibromyalgia.

I would never have thought I would ever say this, but it is well worth being on it for me, because, fat tummy or no fat tummy, it fixes the muscle tension - and that is now paramount.

Good luck with it, it probably will help far more than it hinders.

sue32 profile image
sue32

I was on 10mg at night. Couldn’t lift my head off the pillow next morning😧 Tried 5mg....same effect. So I gave up trying. I now just take Zapain. It doesn’t really do much but I take a lot of other meds so I have to be careful what I take....

Ijo1 profile image
Ijo1

Morning.

I was taking amitriptyline however had bad side effects from it and spent the time I was on it like a zombie. Spoke to gp who said keep trying with it.

A month later no change. I then had an appointment with the rheumatology consultant who is great and very helpful to fibromyalgia patients. He suggested changing to nortriptyline as he thought it was a "cleaner medication". He phoned the gp whilst I was sat there and instructed them to change my prescription to the nortriptyline straight away. He also explained the benifits to fibromyalgia patients and gave them a bit of a lecture.

Been on this now for 6 months and it is great. I have managed to come off some of my other pain relief because of the nortriptyline. It helps with sleep, mood, pain, fibro fog. All without any side effects which is great. After suffering for years this was the answer for me. 30mg taken in the evening.

Wishing you all lovely pain free day.

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