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Advice re: amitriptyline I am a UK sufferer
18 Replies
hellou - June 2

Hi there
I have always tried to tackle my FMS the natural way but feel that I am fighting a losing battle. No amount of supplements, acupuncture, organic food and food avoidance is helping me at the moment. I am so low in mood and energy and in so much pain I went to my GP today and broke down. She has prescribed me amitriptyline hydrochloride 10 mg to start off with. Has anyone got any advice for me? Has it worked for you? I won't take it until I have have some feedback.. just in case! Many thanks for listening.

 

JJ1 - June 2

I have taken amitriptyline for years now and it has worked wonders for me. I have very little pain. I do have fibrofog and cognitive issues that it has not helped. It takes it a while to work (months) so don't give up too soon. Your doctor will likely increase your dose. I take 25 - 50 mg per night (I am supposed to take 50 but 25 usually works so I am trying not to over-medicate myself). Some people report weight gain on amitriptyline although I have not had this side effect. I do try to stay active and this may have helped keep off the weight. I also have to be careful when I take it. If I take it too late at night, it can make me very groggy the next day. Ideally, I like to take it about 2 hours prior to bedtime, but this doesn't always work out. Good luck to you.

 

Fantod - June 2

I have used Amitriptyline for over a year. It is not perfect but at least I get some sleep. The dose your Doctor is giving you is quite low. I take 25mg a night; can't take more as I am pretty medication intolerant. If I took a higher dose, I'd probably be too groggy to do anythin ever again. But, that is just my metabolism. I am sure quite a few of the people on this board take a much higher dose than me. Weight gain has not been as issue for me. I also use some holistic supplements which help. I'm glad you finally told your GP what was troubling you. You'll start to feel more like yourself once you get some proper rest. Your pain level might drop off as well. Getting your dosage right will take some tinkering. The sooner you get on with it, the sooner you may start to feel better. I wish you better days ahead. Take care and let us know how you are doing.

 

jacobea - June 2

I have been taking 20g of amitriptyline since January, daily, two hours before i go to bed. The most it has done for me is largely banish my morning headaches, ease my morning stiffness a little and help me get to sleep quicker at night, which helps somewhat with the grogginess i am prone to on waking. I found that 30mg was a bit too much-it knocked me out too quick.

 

merrygoround - July 9

Hi hellou. I am a UK sufferer too and am making my first posts on this site today. I was given Amitryptilene (same dosage)over a week ago but went back to the docs today as having side effects. Bad headaches and visual disturbances also nausea and very prickly itching. I always have a crawly type of itch most of the time (as one of my symptoms) but this itch is more like being prickled by a holly leaf of thorny bush! so I reckon it's more a case of allergic reation. These were not really scary side effects, so don't worry too much but the tablets were not suiting me. Now I have been taken off those and put on Citalopram for a few weeks because my anxiety levels have been rising because of the stress I have been under at work recently. I think you should try the amitryptilene as different things work for different people. Just go straight back to your GP if you feel they are not suitable after you've given them a go.

 

vlg - July 9

Hi hellou
I have recently been put on zapain
(1000 paracetamol 60 codeine)
4 hourly, this makes me feel so lightheaded the next morning but is taking a slight edge off the pain so am trying to percevere
I havent used it yet but my GP has also given me a low dose of valium to help with the lack of sleep Im up at least 4 mostly 5 times a night pacing the floor to release the pain and stiffness.
As yet dont want to try amitrityline tho I know its helped others!!
Good luck
vlg from uk

 

lynda66 - July 25

i'm on cymbalta, and 10mg amitryptiline ... was supposed to make me sleep, and not wake up to wee, but hasn't helped with either in the last month, other than making me more groggy than normal, have another appt on tuesday.

 

Belinda Darrington - July 26

Hi everyone. Can I just say how pleased I am to have found this site, and I send you all love and hope you find ways to improve your symptoms Support and understanding from GPs in the UK is virtually non-existant - all the doctors I've talked to about it say that I know more about FM than they do, and they're not interested in studying it. That's if you find one that even believes it exists!
I don't take Amytriptaline, but I do take venlafaxine (Efexor). For many years (I have had FM since childhood, but was only diagnosed last year at age 42!) I have taken a whole host of anti-depressants- mostly for anxiety. All of them made me feel spacy until I tried Efexor - which doesn't at all. When I was first put on it years ago, I was surprised to find that the "arthritic" pain and stiffness I was suffering miraculously almost vanished. I had no idea why at the time, but of course it all adds up now. When I was finally diagnosed with FM, I was having terrible pain in my shoulders and arms and chronic daily headaches etc, so my doctor increased my Efexor, and again the pain improved enormously within a few days. So I know that anti-depressants can help with the pain, though not really with the other symptoms, and I would recommend you ask your GPs to try you on venlafaxine if the one you're taking doesn't suit you.
Of course, I would love to find another way to suppress the pain - I don't want to take anti-ds for the rest of my life, but it's all that seems to be available at the moment.
Incidentally, has anyone else experienced and early menopause, I've been peri-m for 4 years, and think I am virtually through it now (43), and I was wondering if it is because of the FM.
It's lovely to "meet" you all - I'm so happy to talk to someone else who understands what its like. God Bless.

 

hellou - July 28

Dear all thanks for your advice.
I am seeing GP today to ask to try something else as the amitriptiline just made me like a zombie. I was only on a small dose and would wake up feeling ok and then I would become drowsy and spaced out by the afternoon.
Belinda. I too have had ME/Fibro since teens and only got my fibro diagnosis this year at the age of 41.Have also been peri menopausal for 7 years too.Snap!

 

kathleen Paterson - July 28

hi i tried amytriptylane it totally made me spaced out , but it might work for you so give it a try , it seemed to dull the pain but i was more concious of all the abnormal sensations going on which freaked me out
good luck kathy

 

Belinda Darrington - July 29

Hi Hellou, how are you? Has the doctor tried you on something else? Unfortunately, any anti-dep' makes you feel quite crap for a week or two (or three or four!), but the only one that left me feeling that I could function (and drive!) properly was Efexor. If you are put on that one though, remember to take it, because I get really dizzy if I forget! I'm thinking of increasing the dose again - the pain in my shoulders is unbearable at the moment because I've done so much lifting and gardening lately, with moving house. Plus the stress of it has aggravated it too. I had assumed that the early menopause was not connected to the FM, but now I think it is. Do you get hot flushes? Bloody awful things!! Sadly, red wine seems to be the biggest trigger with me - one sip and I'm dripping! It's amazing how quick the reaction is! How do you feel about finally knowing what is wrong with you after all these years? On the whole I'm glad I know - I finally understand myself and why I've always felt ill with one thing or another. And it helps people believe there is actually something wrong with me - before, I got the sense they thought I was just attention seeking and making it up! And I'm sooo glad that I've been proved right , that it was not "just depression", as the doctors have always used as their get out of jail free card. The only down side is that I can dwell on it a bit, and have found that I do not make myself do things that I used to, and have become quite fat and unfit and frightened to do much. I used to go swimming etc, but I'm scared of the pain now. But I know I need to build up some strength in my muscles. Anyway, it would be nice to hear from you again. Take care, love Belinda

 

hellou - August 2

Hi Belinda
Thanks for writing back to me. I have not tried anything else yet as i am concentrating on trying to get some of my other symptoms sorted out such as sinus problems and gynae problems. I find that if I bombard the doctors with too much all at once I don't get listened to as thoroughly! I will go back and ask to try another anti depressant though. I tend to cope with the pain quite well without anything, its the emotional side that I struggle with. I kind of knew for a long time that I had fibro but when I was eventually diagnosed I had mixed feelings. On one hand I now had a name for my mystery illness on the other I wished that it could have been something that I could take a tablet for and all would be better. At first I became a bit obsessed with reading about it and almost trying to invent my own cure! Twenty years on I still have this deluded idea that one day I will wake up feeling 100% normal and it will all go away! I have found seeing an occupational therapist really helpful.She looked at my typical week and said that even if I had not got fibro I would be classed as over doing it! I sometimes try to over compensate for the fact I have it and rush around like a maniac on the better days. Anyway she has worked with me to look at cutting down and getting more rest. The one thing I hate this illness for is the fact that at nearly 42 I have no children. I can't even say if I want them . This illness has made me realise early on that I would never cope with parenthood as I struggle to find the energy to look after me most of the time. We have to try to stay positive though and I am grateful to this wonderful site as we all can get comfort from knowing that we are not alone and not going insane! I hope that you are feeling brighter.

 

lynda66 - August 4

i have tried loads of anti D's for years, i am very medicine intolerent, effexor made me hallucinate .... anyway, have been on cymbalta for nearly a year now, and my mood is much more even .... been having lots of urinary symptoms, so doc put me on amitryptiline 10mg, anyway had no effect, at all, so have now been on 20mg 2 hours before bed, and cymbalta in the morning. still don't feel anything yet, but it's early days, there will be something out there that helps, but it seems to be pretty hit and miss finding it ...... don't give up though.

 

angela bea - August 15

Hello fellow sufferer. I have a packet of Amytrip in my bedside cupboard. Most days I'm fine, but stress itself can build up and cause more symptoms. I occasonally take one as a sleeping pill if I really can't get enough quality sleep. Try everything else first, i.e valerian tea, reducing caffeine, alcohol, not going on the computer or phone in the evening or watching too much tv. Evn try meditation or yoga before bed. The Ami. makes me feel dozey for 24 hours so an occasional one as an emergency measure works ok for me. Long drives or emotional upsets are also stress triggers. Good luck, Angela

 

LMF - August 18

I take 10 mg and it helps to get some sleep. It mainly helps me with the stiffness and pain. It is worth a try. Try it first on a weekend when you don't have to get up in the morning as it can make you feel sleepy in the morning until you get used to it. Good luck.

 

auntieclair - September 27

I am on 75mg of amitryptaline 1800mg gabapentin , sleeping tablets anti immlafatries and 30mg morphine daily and im still in pain. Maybe im not handling as good as i should be but i cant help it. It can only get better cant it .....

 

swampinstein - September 27

Hi
I am in the uk too...have tried to take Amitriptyline, got side effects of pains in chest, bad anxiety, panic attacks and mood changes...I stopped taking them and all these side effects disappeared

 

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