All your fibromyalgia experiences, questions and answers.

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Postby Jeany » Wed Jan 28, 2015 4:05 pm

I thought I had found the answer to my sleep problem when I gave in and took a low dose of 10mg Amitriptyline. After walking about like a zombie due to lack of sleep for approx 6 years I was desperate. I hate taking medication, because of the side effects and short term benefits.

It worked for approx a week and I was amazing to be able to sleep, and people had even noticed how much better I was looking and acting, but it was VERY short lived. A week and then back to hardly any sleep.

I really do not want to up the dose to 20mg only to find the same happens again, and before I know it I will be taking handfuls like some junkie.

I would appreciate your feedback guys & girls. Have you tried it, and did you have to keep upping the dose ?
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Re: Amitriptyline

Postby Zia2014 » Wed Jan 28, 2015 4:13 pm

Yes and yes!

I too was on 10mg and very grateful for the sleep. It was gradually increased to 20mg, then 50mg, then 75mg. Like you, I found the effect of it making me sleep wore off and I came off it after 75mg stopped working, because I simply didn't want to keep upping the dose.

Side effects were a terrible zombie feeling until midday the next morning (I took it when I got home at about 5/6pm so it lasted a long time!). Also very bad constipation.

Having said that, nothing since has been as effective in terms of helping me sleep OR with the pain, although I have only realised this since being on the merry go round of trying all different drugs :crazy:

HOWEVER, and this is a biggie, this is not the same for everyone. Just a quick read through the forums will show you the massive variation in what does and doesn't work.

How long have you had no sleep again for?
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Re: Amitriptyline

Postby AliBear » Wed Jan 28, 2015 4:21 pm

I must be one of the lucky ones. I have been on the 10 mg dose for a few months now (still waiting for a rheumatology appt so still not had diagnosis confirmed) found it really helped with the 'background' pain and helped a bit with sleep. However, when I tried 20mg I found I struggled to wake up in the morning so went back to 10mg. I did think that such a small dose couldn't really be making much of a difference but when I stopped taking it (due to going away and leaving them at home) the pain soon returned so I guess they are working. really hope you can find something to help. :-?
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Re: Amitriptyline

Postby sue cooper » Wed Jan 28, 2015 4:37 pm

I used to take Amitriptyline 4x10mgs each night, worked for me without side effects (slightly groggy in the morning but soon wore off after showering) but I did develop a really nasty hacking cough. I was advised by a fab physio. at Salford Royal to take Nortriptyline ~ GP's don't like prescribing it as is it quite expensive, but my doctor did so without hesitation. I take 3 x 10 mgs a night (took one to start & built it up over a few days) and for me it really helps me get some qualative sleep during the night. I still do have some nights when I don't sleep very much at all, but they are now not as many as when I was on the Amitriptyline.
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Re: Amitriptyline

Postby ivegot2dogs » Wed Jan 28, 2015 4:38 pm

Hi, I have been on amitrityline for about 15yrs. My advice to anyone is DO NOT start taking them ! The benefits are few & short lived. Theyu are also horrendous to come off of. I have tried many times over the years to come off them & have been unable to. I was like a zombie, couldnt function. I would think seriously about uppinng the dose. Do a bit more research online before you do anything. Hope that helps.
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Re: Amitriptyline

Postby Gaia » Wed Jan 28, 2015 5:05 pm

I too tried them and after several weeks of upping the dose I was eventually taking 90mg every night - and still not sleeping, but feeling doped up all day!

I was changed to Norityptylene and told they had less of the "hung-over" effect - which is simply not true! They gave me headaches from hell and were just as bad at leaving me feeling doped up and sleepy.

My advice is not to start on these tablets if you can really help it. All they seem to do is leave me feeling like a zombie - and so much so that I could not evne function properly, drive my car or do anything with the remotest danger attached to it such as cooking etc :yikes:

I would much rather put up with pain and less sleep than feel like that again :crazy:
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Re: Amitriptyline

Postby Polly62 » Wed Jan 28, 2015 5:08 pm

I am on 4 x 10mg, but I take them about 7.30pm to prevent that zombie feeling next day. Although I do get a decent nights sleep now & again, I often feel tired next morning. I really don't know what alternative there is, sleep of any kind is better than none!
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Re: Amitriptyline

Postby allyfin » Wed Jan 28, 2015 5:55 pm

I have been on 10mg of Amitriptyline for the past 2 months. I have really been struggling with leg, foot, back pain, making walking difficult. My arms and hands have also been pretty bad. I suffer depression, feelings of being overwhelmed by the smallest tasks, and moments of real anger. I am trying to keep working as I finally have my dream job working with dogs but I am really struggling. I have to go to bed no later than 10.30 pm as my alarm is set for 6am, but I always seem to wake at 3-4 am with my mind racing and not being able to get back to sleep.
I went back to my gp on Monday and he has doubled my dose of amitriptyline. Not noticed any difference yet, good or bad.
Interesting to read all your experiences.
Ally xx
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Re: Amitriptyline

Postby Theresa34 » Wed Jan 28, 2015 6:03 pm

I love my Amitriptyline. I will bite your hand off if you take it hahahaha I've never slept better. I started on 5mg at diagnosis Feb last year. It helped immediately although I had to play with what time I took it. I found taking it earlier in the evening stopped the grogginess the next day. It did stop helping (mostly but not completley) after a few months and it was upped to 10mg. By July/Aug 25mg wasn't doing it for me so I upped it to 50mg and found I couldn't function I was a complete zombie all the time. I told my rheumy about this and he said go back to 25mg and he will add in gabapentin. Problem solved. Been on those doses since then and so far so good. That's my experience!
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Amitriptyline

Postby Lucyhobbit » Wed Jan 28, 2015 6:24 pm

I am extremely fortunate that amitriptylene only leaves me with one side effect - a very dry mouth. I take 25mg in the morning and 75mg at night and it helps keep a lid on both the pain and my recurrent depression (no cure but a lessening), there have been a few times I've run out (lousy memory) but I've not had any withdrawal symptoms. Interestingly I was prescribed it when I was first diagnosed (at 18) and only 10mg gave me hideous nightmares I couldn't wake from so we stopped immediately. 20 years on and it now is fine for me - can't really explain it, but it seems to affect different people differently.
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Re: Amitriptyline

Postby Susan Stokes » Wed Jan 28, 2015 7:13 pm

I have been on Amitriptyline for about 10 years. Take 2 x 10ml at around 8.00pm and don't have any side effects other than the dry mouth (oh, and very nice dreams). I sleep well, other than getting up a couple of times to use the loo. I have to say I'm not bright eyed and bushy tailed in the mornings, but then I never have been. This is one of my hero medications. I think we have enough to contend with and anything that will help I will try.
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Re: Amitriptyline

Postby crazy cat lady » Wed Jan 28, 2015 7:18 pm

I have been on Amitriptyline for years, they don,t help me sleep at all, they do help with the pain though, my GP will not prescribe me a high dose as they are bad for the kidneys. Having big problems with trying to get to sleep and also with restless legs and arms.
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Re: Amitriptyline

Postby galio » Wed Jan 28, 2015 9:28 pm

Hi I was on amitriptyline 10mg and it was great for the first couple of months sleep was amazing, then it started to work against me lay awake all night and then was really sleepy in the morning,(this is nothing new with me often after taking any medication for more than a few months I end up with problems, the pill, hayfever meds, meds for dizzyness all ended up working against me ) the doc kept saying take it earlier I went back and asked how early as I was taking it when i got home from work at 3pm, after the gp consulted rhumy they changed me to nortriptlyne and yip sleep again but it was short lived, only 4 weeks, but i didnt have the tiredness the next day , went back and saw a different gp when he suggested upping the dose i told him i was rather worried due to a reaction I had many years back pre fibro( when i was using it because of pain from a torn muscle that had not gone, and I had a breakdown after a violent incident at work,) they upped the dose and it caused my heart to race my gp said i should never have been put on it again, he wants me to have heart tested before he will up the dose, I thought it wasn't doing much for the pain but when i stopped it I found out differently, but what I now do is take it for maybe a week when the background pain gets too much or i'm flaring then stop it for a few weeks, Iv never had a problem with withdrawal I went back onto it last night due to having a flare and i'm hoing it will dampen it down enough so i manage to continue working till half term in 2 weeks time. but hey if we get the forecast snow i might get a snow day off and that will help too lol
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Re: Amitriptyline

Postby MrsP77 » Wed Jan 28, 2015 9:47 pm

I'm the same as Susan Stokes. I take 20mg when I go to bed, usually about 10pm, I always read before going to sleep, and it doesn't take me long to drift off. I get up to go to the loo usually once a night, but I can never remember getting back into bed. I wake up any time between 8.30 and 9.30 next morning, with a dry mouth. GP prescribed it for me because I was in so much pain in the mornings with difficulty walking etc, and swollen limbs. Now I only have a problem with my right hand being a bit dodgy in the mornings. GP told me to play about with how much I take and got as far as 20mg and was happy. If I'm having a really painful day I just take a couple of Zapain 30/500 when I go to bed, which is usually around 8 - 8.30, along with all of the other stuff I take :sleep:
What I did get from one of the doctors at my practise, at the same time as he prescribed me the Zapain instead of co-codamol was Fenbid Forte Gel, it's an ibuprofen gel and is great for precise pain. I get a lot of muscle pain in my thighs. Sorry, I'm drifting off subject now. :-?
I think, as with all medications with this silly illness is you just need to keep trying until you find what works.
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Re: Amitriptyline

Postby Spooky0115 » Wed Jan 28, 2015 10:11 pm

I have to say that Amitriptaline gave me my life back.Long story short I was seriously ill for 9 yrs.My medication was changed to Amitriptaline & once over the horrendous withdrawal from my previous med's I slept deep, restorative sleep finally.I was so improved that I took a physically demanding job in a school kitchen.Hooray for it I say.I am on 50mg daily &I never think about being on drugs.I think thank God I have my life back.Thank God I can play with my kid's & walk my dog.Sorry to hear others have not had such a positive reaction as I have.
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