Amitrptyline....your experiences - Fibromyalgia Acti...

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Amitrptyline....your experiences

dottii profile image
20 Replies

Hello everyone, I just wondered what your experiences with taking amitriptyline - I have been on it with increasing doses over the last 2 years and have had massive weight gain - tho my GP assured me it wouldn't effect me, but as I have food/body issues already this has not been an easy thing for me to get my head round. I have found it does help with sleeping more soundly (though I can still wake feeling totally shattered) (I'm not sure, but I think the lovely deep memory foam topper which a very dear friend bought me for Christmas has helped too). Can you share your thoughts with me as I am wondering if the benefits are outweighing the way I feel about my body and wonder if anyone else has experience of this too.

Sorry for the prattle ! muchly Dottii x

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20 Replies
BlueMoon19 profile image
BlueMoon19

Hi dotti

Amitriptyline does make you gain weight. I have been on it approx 1 year and have cut the dose down and even stopped taking for a short time.

The drugs we take is usually trial and error for each person as most of the doctors do not know the answers. I have been on several drugs for my fibro and i am now looking at other alternatives to help me as drugs do not help they only dull the pain.

Fibro sufferers usually suffer in silence and think they just have to put up with all the pain and we need to be heard. Fibro is a very debilitating illness.

Will keep you posted on any interesting things i come across in my endeavour to find some more help with this pain and never ending tiredness.

Mo

dottii profile image
dottii in reply toBlueMoon19

Thankyou so much Mo,

I have always asked my GP about it causing weight gain and I am sure that because I was well under 8st (i'm 5'6" ) he was saying what he said so that I didn't immediately go " oh no I can't possibly have that" ! I am now over 9st and doing my head in, but there is a sensible part of me which says its good for me to help with the sleep etc.... bu then there is my anorexic voice telling me to come off Ami and loose all the weight i've gained.....eekk I really shouldn't be thinking like aged over 50 !!!

Thanks for your comments Mo - gentle hugs muchly Dottii x

I'm 29 and been on Ami since March. I've gone up from size 12 to 16 and weigh over 13stone. I'm mortified and since having my son 8 years ago have always struggled with my weight but this is the heaviest I've ever been. I'm 5ft 2 and was obese at 11 stone according to NHS direct!! I hate that I have cfs, fibro and osteoarthritis. I hate that I'm shattered all the time, in pain 24/7 and that I get blank looks from my GP, friends and some family members!! I have no clothes that fit excpet jogging trousers which have never been jogging and stretchy tops or my husband's hoodies. I have 8 drawers full of perfectly good clothes and none of them fit. I can't work because of my pain and fibro flares and so how on earth am I supposed to buy new clothes??!! I feel your pain :(

dottii profile image
dottii in reply to

Gentle hugs to you, I am sorry that you have such a problem, I wish I could just wave a wand and make everyone here better, but we must just keep on fighting the battle (tho at times I seriously reconsider this).

Have you ever thought of chaning your GP and perhaps find one that has more understanding of fibro than your current one does.......just a thought !

I feel your pain jumping off the page at me and am sending caring thoughts your way. muchly Dottii x

pottyness profile image
pottyness

i went on it after having my kids and being diagnosed and i never lost the baby weight in fact i put weight on. couldnt work it out. then i had a locum doc who took me off them and made me with draw for a whole week [no sleep] then put me on dosolipin.

what a difference.

i lost 3 stone steadily. it feels so much better. the sleeping is the same. the pain relief is the same. the only shock was that i had forgotten i had migraines....... first one for ten years was a shock. but i can get used to those once a month if it means i dont have to carry that extra three stone round with me any more. it really is hard to carry a bag of coal or spuds that weights three stone so imagine how much better you feel when you arent lugging it around any more. in fairness i struggle to carry a five pound bag of spuds now so i dont know how i got around carrying it before.

FionaP profile image
FionaP

Hi Dottii

Hope you are in a good place today. Your doctor should have told you that weight gain is well documented with Amitriptelyne. I put on 2 stone real quickly. I was then transferred to Nortriptelyne and this is fine. Still don't sleep well but no weight gain from the drugs.

Sadly I have still put another stone on in the past 5 years. Hope I can loose some this year with a new hydrotherapy and gentle exercises twice weekly with lots of assistance afterwards.

Good luck x

nanaanna profile image
nanaanna

I have always thought Amitriptyline would b the answer 2 my prayers when I was 1st diagnosed with fibro bout 16 yrs ago. Unfortunately it wasn't the answer I wanted. I collapsed on a couple occasions in town when out shopping with my kids who were all quite young at the time. Then 1 Sunday I woke up 2 c a paramedic and a doctor standing over me telling me I had been in an accident. My last memories b4 that were off travelling as passenger in car and my 1st thought was I've been in a car accident. As it turns out I had been in work and felt ill, I fell and hit my head, no-one knows if I fainted and fell r if it was the fall and hitting my head that knocked me out. To cut a long story short the doctors decided it was the Amitriptyline causing me 2 collapse and after being hospitalised for wks at a time I was taken off this drug. I haven't collapsed since so it must have been the Amitriptyline. I have tried loads of different drugs since, some with bad symptoms and others that just didn't work for me at all. Unfortunately as we all know its matter of trial and error finding drugs that work without side affects. At minute I'm on Arcoxia, Robaxin, Escitalopram, Tramadol, and Butrans patches, I also take Lansoprazole 2 make sure my stomach doesn't get 2 upset from all the drugs. I wont feel as bad if I had something to help me sleep as I think that would improve my condition, well maybe not improve it but make the pains less severe as when I have good nites sleep (on rare occasion) my pains dont seem so bad. Hope everyone's had good day and hopefully 2moro will b better day for everyone xx

mikeymoo profile image
mikeymoo

Hiya, I have been on Amitriptyline now for 15 months. I was not sleeping as well I should be, well according to the specialist anyway. I thought I was sleeping o.k. but I was still tired all day. Apparently sleep comes in stages, stage 4 being the deepest stage. According to the specialist, fibro means you have trouble reaching stage 4 leaving you still tired when you wake up. I started on 10mg (1 tablet) for 1 month then increased the dose monthly by 1 tablet until I got the desired effect. I was taking 5 tablets but my G.P. told me to cut it down to 4 so I did. I now sleep very well, too well as sometimes I get 11 hours! I still feel exhausted all the time. I have always had trouble controlling my weight but taking Amitriptyline has made this worse. If you have been prescribed Amitriptyline, the benefits definitely outweigh the drawbacks:-) Hugs xxxxxx

I think it was the Amitriptyline that started the restless legs( and arms body etc.) and it made me feel really ill, even on a low dose, so be careful, although I have heard others who have had really good results

Billydt profile image
Billydt

I have been on Amitriptyline for 9 years and over that time I have gone from a size 14 to 22. I went to slimming world for 12months and lost two and a half stone but it was a real struggle. I have been unable to get out very much this last 12 months due to fatigue and pain and I went to see a new Specialist today (waiting for blood test results to see if I can have any meds changed) fount out I had put just under a stone back on even though I have not changed my diet. Never knew Amitrip could cause weight gain. Mind you I only joined this community this week and have suffered without anyone in my family & friends really understanding what I was going through. Although it was my husband that found you all for me.

bumblebee57 profile image
bumblebee57

Hi all. I was on Amitriptyline for years, to help me sleep.(Ive got Fibro) I came off them to see if I COULD do without them. I lost 2-1/2 stone (11st down to just under 9) I went back on them about after about a year because I hadnt slept properly in all that time. I've put on 3 stone. My doctor said "Its not the Amitriptyline, you need to address you eating habits". I dont eat that much rubbish to have put on 3stone. But Ive stopped them again anyway and I feel less bloated than I did, but its only been a few weeks,so I'll see if I lose weight again over time. I wake up feeling like I havent slept at all anyway,but I know I sleep all night when I am on them. Heads, you win- tales, you lose !!

dottii profile image
dottii

Oh gosh, thank you all for your replies, and I am pleased that it's not just me (but equally unhappy for you that it has effected you all), I think I will speak with GP and begin to decrease it, though I have a hunch that he won't be overly pleased as he said I was too underweight to start with. But even tho I have always had eating issue since 11 I don't want to go back to being unhealthily thin as I know it will effect the osteoporosis I have and I certainly don't want to have any more compression fractures in my spine (not fun at all ! ) so its trying to find a happy balance.

I really appreciate your experiences and send you all gentle hugs, muchly dottii x

Brambleberry profile image
Brambleberry

Yes doctors will never simply admit that tricyclics cause weight gain yet its on the side-effects list...they say ah yes but it increases the craving for carbs...but when you tell them you have Rosemary Conleyed your way up 5 stone...they dont believe you...yet online there is clinical evidence regarding how these drugs affect the uptake fo glucose...which to me means ( dont quote me) that it increases insulin resistance....my shape has changed on these drugs from a pear to an apple and my face upper arms and belly...and no bum...I lost 3/12 stone last year...not one inch of the bum....

I take 75mg at 2pm every day, this suits me really well as by midnight I am really ready for bed. I used to take it at night just before bed and I was wiped out for most of the next day. Now I feel so much better. The only thing I don't like about Amitriptyline is the weight I have put on. I was very slim before Fibro, I have put on two stone which isn't too bad but I want to lose some and get more active. I've also got a permanently dry mouth which I didn't have before taking the tablets. Other than that it's fine. :)

Having said all of that, once we have moved house in the next few weeks, I am going to see my GP about coming off Amitriptyline to see how I manage without them. My Fibro is quite stable now. I am hoping I can manage with just my pain relief and that I will be able to lose weight when off the tablets. I aim to reduce my dose very slowly. :)

dottii profile image
dottii in reply to

Oh Libby thank you so so much - I thought I was the only one who felt the need to take my Am that early to be able to sleep at a sensible hour and not hung over all day - I now vary between 3 & 4pm . I was in hospital twice in March (appendics and shoulder) and the staff queried me even requesting it by 6pm but I rang my GP and he set them straight as he understands. The first op they got my meds right all the time but on my shoulder the silly (slight understatement) houseman didn't write up any of my meds at all except for Oramorph which they happily gave me every two hours so by early evening I was nearly going nuts with the itching which taking Oramorph does with me tho I normally have antihistamines to cope with that, but no, they couldn't/wouldn't even give me that until the pre-mentioned dr had written them up. Well, to cut a long and very boring story short at about midnight I was in such agony one of the night nurses went down to A&E and found a dr to write them up - none of the other patients on the ward who had been admitted that day had had their drugs either so I felt a bit uncomfortable having special treatment when they were still waiting (until 2am when a dr actually appeared) suffice it to say I got about one hour's sleep at about 6am and it took meover a week to get anywhere near in control of pain, both the shoulder (which was expected) and the fibro which had a blast and ran amock.

Good luck with moving house, I do hope that you are not having to do too much with that, but as I moved house three times in rapid sequence, I know how much it takes it out of you, both through stress and strength. Are you staying with the same GP or having to change? I really hope and pray that your fibro stays stable and you are able to reduce your dose, as you say, slowly - do let us know how it goes !

muchly dottii x

in reply todottii

My pleasure Dotti! I learnt the hard way, by being confined to bed for almost two months with taking my Amitriptyline at the wrong time of day. My GP or Consultant didn't tell me what time to take it, so at the beginning I didn't have a clue. I try my best to publicise how important it is to take your meds at the right time because the side effect of taking it later can be horrendous!

If I am especially tired I take it at 1pm knowing I will be able to go to bed around 11pm and then sleep. It really works doing it this way. Yes I still have bad days, but they are managed better.

Regarding the house move Dotti, we are having a firm come in and pack the larger things. Hubby and I started sorting things and getting rid of a load of things we just can't take with us months ago, so it wouldn't be absolute hell nearer the time. We are almost done sorting, we are just waiting for a date and then we can pack into boxes. I pace myself so I won't be wrecked afterwards.

I am considering changing my GP as the meds I am on keep me pretty stable. We are moving about 6 miles away so I understand we can keep the same GP. Where we are moving to, there is a Doctors' Surgery round the corner so changing makes more sense. I'm not too worried about it. Even if I have a bad blip/bad flare-up I can usually get myself stabilised by pacing and resting etc.

I will keep you posted Dotti on reducing my Amitriptyline, I want to stop taking it completely if I can manage without it. Time will tell! Bless you for your lovely messages! Take care and hugs too! :D

monica_5 profile image
monica_5

I have been on amiltripline for several months. The two side effects I have are weight gain and it does make me sleep. The drug is used for pain not sleeping. Sleeping is a good Side effect for this drug. Is your pain level better? My pain level is better taking it, and I take it at night. Hope this helps......

dottii profile image
dottii in reply tomonica_5

Sorry monica but my pain level isn't really better but it dpes help with s;eep to a degree. Thaks for your help tho

muchly dottii x

pennysparkles profile image
pennysparkles

I was on this for 5 years, and went from a size 16 to a 20 :(. Now I am on Fluoxetine and Napronxine and feeling much better.

dottii profile image
dottii in reply topennysparkles

thank you penny, I know it may seem silly but I am a size 12 now which i have never ever been beofre and its hard to cope with. I was always a lot lot smaller. I can't take floxetine and not sure what the other one you are in is, but I am glad that they make you feel better.

muchly dottii x

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