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Fibromyalgia Action UK

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ICCLEANNE profile image

Hi has anyone tried amitriptyline for fibromyalgia im on it now after coming off gabapentin. I've had problems with my blood levels and blurry eyesight and pain. Has anyone else had any of these problems and can you recommend any different treatment.

Thank you

24 Replies
desquinn profile image

if you search on amitriptyline you will get a lot of results and previous experiences. Some people swear by it and others do not tolerate it and some need to adjust how they take it for the benefit.

I was on 40 mg amytriptiline. It helped me sleep so was great in this regard but I couldn't move when I woke up so stopped taking it. Didn't do anything for the pain during the day. I take tramadol now which is good

Thats great does it not make you sleepy inthe day

No. I used to only take it at night because I worried about this but now that the pain is bad in the day will take up to 2 50mg tablets during the day. I take up to 4 at night.

moo196 profile image
moo196 in reply to ICCLEANNE

If I have not taken mine by 7.30pm I don't take it at all. Preferably 6pm.

Yes tried couple of years ago not great reaction for me. I take Tramadol it just takes edge if the pain. Hope it works for you 🙏

Hi. I started on 10mg Amitriptyline twice a night along with tramadol, Naproxen and Paracetamol and it never helped with my restless leg syndrome and I always had problems getting to and staying asleep. I contacted my gp and they upped my Amitriptyline dose to 10mg four times a nite and I find that I can now get a good nites sleep most nites.

As with other people saying they wake up feeling unable to move in the morning, I find that this is also the case with me. Maybe it's due to the dose of Amitriptyline knocking me out and not being able to waken up if I ly in awkward positions, I am unsure of, or if my symptoms of fibro are just getting worse, i don't know, but it does help me sleep better, which in all cases is a bit of an improvement as my body has more of a chance to reset and recuperate.

I am not really good at explaining things but I hope this comes across properly.

I went the other way from amytriptyline to gabapentin. The gabapentin reduces the frequency at which the mad axe murderer stabs me in the hands and feet with his rusty pitch fork.

Maud-ie profile image
Maud-ie in reply to Makie-Uppie

So funny - so pleased you still have your sense of humour!

Timmer79 profile image
Timmer79 in reply to Makie-Uppie

Hahaha love your humour makie-uppie! 🪓

Me too, I went from amatriptaline to gabapentin. As it made me woozy and sick.

I'm not convinced I have fibro either, but the gabapentin cuts the top off the pain. Of all the stuff I've gives me the least side effects. So I think it ends up being a personal thing ICCLEANNE, a bit like your depends what issues you can put up with and what you can't as to whether you keep them 🤔🤣

Vita2016 profile image
Vita2016 in reply to Makie-Uppie

You made me laugh. Thank you!Amatriptaline didn’t do nothing for me. Tamadol does but it just means taking so many pills. Today I start gabapentin, and after reading reviews (separate group) it’s made. Me a bit wary....🤔 my pain has got worse, legs, mobility, back, and hands. And I think even what others have had fog brain. It’s scary as one can’t confide not even to my dr this morning. So sharing within private groups. Makes one feel inadequate. Can you make me laugh more please ! Thanks

Makie-Uppie profile image
Makie-Uppie in reply to Vita2016

Glad I made you laugh, I shall endevour to do so again but I can't really do it to order. On a serious note you have to learn to tell people especially your GP how you are. I know when your steam rollered to within an inch of your life it is hard. You don't need to be shouty just quietly explain, persistently, eventually they have to take notice.

I honestly would love to do more on places like this but equally honestly I just don't have it. Today I walked 50 miles through a swamp with a vampire on my back and elelectric eels round my ankles and boy do I feel it, but I am not alone.

So I tend to loiter making the odd comment or launching into a tirade if someone touches a nerve, bit like Victor Meldrew in One Foot in the Grave but shorter (I think) and I reckon I'm up to my knees at least in the Grave, rather it was gravy though, preferably mum's home made.

I weaned myself off of 1800 mg a day Gabapentin as it stopped working. Maybe I thought it worked at first as I wanted it to so much? Recently stopped amytriptline 10 mg at night for the same reason. I was so fed up of taking handfuls of medications that did nothing. Now diagnosed with Ankylosing Spondylitis so waiting to start anti-TNF meds and two hip replacements. I am not convinced that there actually are effective painkillers/relievers for fibro. I have had Cymbalta too which did nothing. Good luck on your search for the holy grail. Sending love x

ICCLEANNE profile image
ICCLEANNE in reply to Maud-ie

Thank you

Makie-Uppie profile image
Makie-Uppie in reply to Maud-ie

Because gabapentin is still effective for me I'm wondering if I have the F-word at all, perhaps I have something else or a vivid imagination. Only way things could get any worse is if we were dropped into the middle of a pandemic.

Maud-ie profile image
Maud-ie in reply to Makie-Uppie

Ha ha! If Gabapentin works for your pain take it! Whatever label you end up with if something makes your days easier Go For It! The 'experts' unsure if I have fibro as well as AS with some plain old arthritis for luck. Who knows? I don't, they don't - I would say cynically don't trust the experts - they seem as befuddled as us! Stay happy x

Timmer79 profile image
Timmer79 in reply to Maud-ie

Hi maud-ie, they are assessing me for ankolysing spondylosis now, daft question if you don't mind me asking...what were the trigger factors for the diagnosis?Feel free to not reply or direct message if you don't want to here. Thanks

Hope you have the holy grail already x

Maud-ie profile image
Maud-ie in reply to Timmer79

Diagnosed with Fibro about ten years ago. The last five years I have been deteriorating rapidly and knew that within the next year or two I would effectively be totally disabled. The pain in my hips, groin, sacroiliac joints, legs, ankles and feet prevented walking. Stairs impossible. I could HEAR grinding when I moved. Got so upset that I got angry!! Phoned GP and insisted on an MRI/Rheumatology appt. GP couldn't refer but physio could. Phone call to physio established they couldn't help but they referred me for an. MRI. (I had slight incontinence due to extreme numbness so they panicked about Equina Cauda Syndrome). MRI showed bilateral sacrolilitis with erosions, bruising and changes). Rheumatology then did X-rays and blood tests proving Ankylosing Spondylitis. My spine is fusing and I need two hip replacements, a knee replacement and anti-TNF medication. Possibly the start of incontinence (!!!) and being totally unable to walk made me wary of just (just??) a fibro diagnosis. I wish you loads of luck and patience xx

Timmer79 profile image
Timmer79 in reply to Maud-ie

Thank you for replying Maud-ie, hope your pain is starting to be releived with the medication and the TNF will slow down anything further(?)Sorry to hear you're having so much trouble, your persistence has got you some answers and hopefully some action(at the very least).

Best wishes to you and lots of ❤💙💜💖

Maud-ie profile image
Maud-ie in reply to Timmer79

Thank you. Good luck on your crusade too! x

Vita2016 profile image
Vita2016 in reply to Maud-ie

I’m looking into CBD as been advised a lot. Not by medics of course. But agree with you and am also fed up of remembering to take so many pills. Would like to rid the lot and just stick to cbd oils or gummies. Both for pain and sleep.

Hi, I was on am amitriptyline only helped me for sleep not pain then switched to gabapentin which helped the pain but made me dizzy and disoriented am now in pregablin which so far is kind of working just need to find my dose, currently on 50g morning and night.

I've been on both for years. Still get leg cramps, but I wouldn't like to think what my life would be like without them. Def worth a shot in my opinion

I went on to a high dose of amitryptaline and ended up in hospital for three weeks due to talking complete gobbledegook, falling, and hallucinating. Came home not much better my son said it seemed since I was on amitryptaline stopped taking it and was put on nortripiline and was immediately better. I never want to be like that again.

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