I was wondering if anyone was on amit... - Fibromyalgia Acti...
I was wondering if anyone was on amitriptyline?
Hi Lynni I am taking amitriptyline ! My doc started me off on 10 mg and was built up to 50mg to take in the evening,I find it works great . I am also on gabapentin 900 3 times a day and dihydrocodine x2 as an when require. I have fibromyalgia . Had this illness for about 4 years after PTSD . It took all this time to work out what was wrong with me. I don't seem to be more tired than usual on these meds as I am always tired with the pain anyway so it does make a good difference . I also work 33 hours as a auxiliary nurse 3 x 12 hour day n night shifts . Hope this helps in anyway ,just helps you to have a normal life x Billie
Hi Linni like Billie I too am now on 50mg of Amitriptyline after building up gradually from 10 mg. I am under the care of my GP rather than the rheumatologist who diagnosed me in January. GP seems reluctant to start me on Gabapentin as well, going to speak with her about this on the 2nd June. I have good and bad days, manage to work 18.75 hrs for the NHS. I try to keep active as I can, walking 2-3 times a week for around 3 miles, also doing Pilates. Xx
Check out the side effects first - I've put on weight. There is an alternative but I forget the name, sorry.
While there's not a cure, fibro seems to respond to Amitriptyline. We're all different and I hope you find or have found the right dose for you, in consultation with your doctor. There's someone on here on 10mg who gets the "hangover" and someone on 100mg with no ill effects. I'm on 40mg and sleep well most nights though it doesn't really touch the pain. You haven't said much else but for some really good information look on the mother site, there's articles about treatment, and NHS choices has some. I hope you're talking to your GP and don't stop amitrip suddenly. It needs building up slowly and tapering off. It's not like paracetamol which can be taken at need.
try these links
fibroaction.org/Pages/How-I...
fibroaction.org/Pages/Neuro...
*waves* that would be me on the 100mg. I take 25mg in the morning and 75mg at night. the only side effect I have is a very dry mouth, but I am used to that now and doesn't bother me much. When I was a teenager I tried a low dose of amitriptyline and it resulted in terrifying nightmares that I couldn't wake up from, so I stopped taking it. Zoom forwards 20+ years and I can take lots and be fine. It will probably take a few weeks for you to feel any benefit.
Thanks Lucy. It was you I was thinking of but I try not to "name" anyone.
The question has raised a lot of good response to show how different we all are. 
Hi I was on Amitriptyline about
3 years ago it did nothing for me I still woke up in pain all night.
ouch. There's information on the mother site about Amitrip, just click on the butterlfy
I'm unfortunate as I can't tolerate it at all. But exercise helps. And pacing my day. Xx
Those help with a lot of things. Pacing is about rationing your spoons.
Oh dear I'm new to all thus what does rationing your spoons mean?
Hi there teddybear7
The following links take you to our Mother site fibroaction.org and to the about fibro section the first link discusses Pacing, or activities management and the second explains the spoon theory
fibroaction.org/Pages/Lifes...
fibroaction.org/Articles/Th...
Hope these links are useful to you
xxxsianxxx
Thanks Sian. You beat me to it. I was going to put up the same link 
I also like Mayrose's idea about flat battery with a dodgy charger.
Boing!! beat the Badger hahaha
Yes! It is also an appropriate description for my fatigue - spoons and balloons no good to me................. spoons are for shovelling food in when hungry LOL
balloons rhymes with spoons heheheheh 
only reason I have used the word 
Seriously though!
...................... just in case I'm giving the wrong impression the Spoon Theory is well used by many people as a pacing guide/tool to help them get through their daily tasks, which in turn helps them to control and manage the illness a bit easier.
It doesn't work for me I used a different technique given to me by my Pain management team but I did give it go to see if it could help me before deciding it was no good.
xxxsianxxx
Beat the Badger sounds like a tv show
Unfortunately the link to the actual spoon theory within the article seems broken but I have enough info now to look it up via Google many thanks Teresa. Xx
Spoons is basically having a handful of them in the morning and putting them down as you do things - the more effort, the more spoons. As you can guess, your hands can only hold so many spoons. I don't like the term as I find it confuses people.
When people ask, I say 'how long is a piece of string' and go on to explain that if I have had a good nights sleep [sometimes rare] I feel good and more able to cope. Therefore I have a fairly long piece of string, but not as long as someone without FM. If I do too much in the morning, my day will end a lot faster and often with more pain. But if I take it steady, the string can last until the evening. If they still don't understand I will ask if they have ever had flu - if yes, then say it can be like that. If they have ever had pain in a muscle from exercise, then that can relate to the pain in our muscles when we get too much lactic acid building up and our body screams that we've hurt ourselves.
But to be honest, pacing can really work only when you come to accept and learn what your body can now do.
Soft hugs
Spoons is energy, it is a short story written for lupus but it applies to fibro also.
I take 10mg of amiitryptiline ever night It does make me sleep ok, although saying that I had a terrible nights sleep last night it dosnt do anything for the pain I tend to take ibuprofen and paracetamol which I find does help me with the pain and stiffness
*waving* I'm also on 100mg a night - I've been taking it at this level for around 3yrs now. Although it works well most of the time, I do still have nights when, despite 100mg of ammis & 4mg of Diazepam, plus painkillers (Tramadol) I will still sit up for the whole night as sleep eludes me. My Mother in-law claims I have the constitution of an ox.
Waving back.
It's interesting the response this sort of question gets. We're not medics but the personal experiences give a good, if not statistical, view of what goes on.
It sure does. Always good to know how others deal with things.
I take 50mg of Amitrypteline every night. My GP has just put me up to 75mg a night temporarily to try to get on top of a really bad flare up. It definitely helps me sleep and if I have run out on occasion (which is not advisable), I can feel the difference massively. I try to take it 3-4 hours before bed time, as by then it has kicked in and I am able to get to sleep much quicker than if I take it just before bed. I hope you have success with it.
Hi Lynnl, I am on 20mg of Amitriptyline at night and as Fenbadger says, It helps me sleep which is a real blessing, but does nothing for the pain. I am under the care of my GP who has just relented to letting me take Cocodamol for pain as I need it. Unlike some I found the use of Amitriptyline helped me really quickly for sleep when I went from 10 to 20mg but now suffer with a dry mouth. I hope you find it suitable
Tried it, but it STOPPED me from sleeping! Also it made my Interstitial Cystitis worse. But I think I am in a minority, everyone else I know that takes it gets on ok with it. There was some recent research that says it can do something negative to the brain if you take it for a long time. xx
Hi Jjudith, I was shocked to read about the possibility of brain damage in your post so I did a bit of research about the web and found the links to be very tenuous and as usual the reports came from the US. I have found a lot of alarmist info generated from there, they are so swift off the mark with their suing culture. I have been taking amitriptyline for several years now and I know it has side effects which I'm not keen on, the benefits for me with actually achieving sleep far outweigh the side effects.
I'm sorry it affected you so badly, that must have been so unpleasant for you, especially as you were probably hoping it would help with sleep and to have the opposite would be very very frustrating, poor you !
Sending positive vibes your way
Foggy x
Some people with fibro seem to have these paradoxical effects and I seem to have it with at least half of all medications, including almost all sedatives or drugs that have a side effect of making people feel drowsy - they either limit my sleep to an hour or so, or they stop me from sleeping altogether, and raising the dose doesn't seem to make any difference. So far haven't found anything that helps except some antihistamines but even they don't stop my sleep from being really broken up. Also things that used to make me sleepy like cuddles stop me sleeping now - hubby has to give me cuddles in the morning to wake me up!
I even have paradoxical side effects - if I take Codeine it gives me diarrhoea!! Didn't happen until 3.9.2011 and then my brain just changed before that I never had a single problem night in my whole life - and of course the fibro symptoms started at the same time. I don't sleep well but I sleep best with no medications at all. Horrible at the moment - I am in Middle East and either I am disturbed by heat or disturbed by air conditioning noises. Before this started I even could sleep through the call to prayer when the mosque was literally next door. But I have my wonderful talking books and I don't know how I would get through the night without them. I would like just one good night's sleep every now and then but guess they'll have to anaesthetise me for that!!!!
Oh golly you really have been through the mill. I have had sleep problems since a young child and always suffered endless nights of my poor parents trying every sort of anything to get me to sleep, mostly without success. Like you I find one particular antihistamine helps me, in conjunction with all my other meds, which you unfortunately can't tolerate. it must be just torment for you.
Being in the Middle East is it very humid? Like you I know if there is any sort of air conditioning the noise guarantees no sleep, that is unless I'm having a bad bout of tinnitus, in which case the air con can help mask the confounded noise
Hehe a general anaesthetic for a good sleep .....hhhhmmm I had a shoulder replacement and as I was being topped up with oramorph every two hours, I think I lost about three days, they said I slept, went to bathroom, feel asleep on the loo (very embarrasing) and on the fourth day I suddenly came to my senses but I didn't feel like I had slept at all ho hum....
Sending ultra strong sleep vibes your way
Foggy x
My left shoulder is a problem so maybe I will have an op like yours and get some sleep at last! Has it worked, how is the shoulder now? And I have tinnitus as well and that started on 3.9.11. Seems like we all have the same sorts of issues doesn't it, read the same symptoms over and over on these pages. Love and here's to a good night tonight xx
I couldn't recommend the replacement op more highly Jjudith. The period of time leading up to the op was completely sleepless as any movement made me squeak loudly with the pain. Now I have a full range of movement both anterial and posterial , and best of all not the excruciating pain.
If you can get it done where you are by someone good, but if you want to pm me, I can recommend some good surgeons in this country.
Foggy x
Yes , im now on 50mg in the evening , I am also on zomorph , oramorph , citilapram and various others , im now showing slight improvement , but the dwp still say im fit for work , over ruling doctors and specialists .
Hi Jeff, the DWP have their own agenda and I think it's a thing many of us here get very frustrated by. I had an emergency to deal with last week and had to be on my feet for about three hours on and off, at the end of it I was completely and utterly exhausted and went to bed "just to rest for half an hour" five hours later I awoke. Still, like you, I'm fit for work according to DWP, if that wiped me out after three hours I hate to think what a normal working week would do to me.
Foggy x
I'm on amitrypline I take 20mg at night but recently found it doesn't help much, my muscles have been really bad lately. Gentle hugs. Xx
Hello my friend, are you in Spain yet or do you go later ? I was just thinking it might be an idea to talk this through with your GP who might want to increase the dosage if it's not being effective for you, 20mg is a very low dose, or you could need a different med to help you more.
If you are in Spain or when you get there, do try to enjoy the warmth of the sun. I went to Tuscany about eight years ago in wonderful warm (not baking hot or humid) weather and it almost felt like I didn't have Fibro for that fortnight, of course on my return it kicked in full tilt. I'm hoping I will feel the same benefit when I go to Kos in September .
Sending you lots of positive healing vibes
Foggy x
Hi Foggy I'm leaving shortly and I don't have enough to increase the dose at the mo so will wait till I get back and then go see her I think.
Thankyou for the message. I won't get on much whilst I'm away but I wish you all as painless time as possible.
Gentle hugs Lou xxx
Hi Lou, I just hope you have as good a time as you possibly can and am sending super strength pain busting vibes to you, awaiting your arrival in Spain
Foggy x
Thankyou xx
Hi yes I am also on amitriptyline 25mg at night but I find that I am so sleepy the following day too. Not sure if this is due to my body not being used to taking this drug as I also take gabapentin 100mg and dicoflenic.and when req Diazapam.
Hi hi I'm on 100mg of ami .. Omg I get the shakes & look like I'm taking a stroke most times but it eases pain a little.. To be honest I feel outta it most days(yay) awe well on wards & up wards rite?
Thanks everyone. I was on 75 mg for about 22 years. It was great. I could sleep and it helped with the pain. I decided about 2 years ago to get off it. My mom got Alzheimer's in her 60s. She was on amitriptyline for about the same as me. I decided to do everything different then she did, even though the meds may have had nothing to do with her illness. I slowly went off the meds and this is the first week being totally off. I can't sleep, but I figure I need to give my body time to get use to not having the meds. I just wondered if anyone else has gone off and how did you feel. I am trying 5 mg of melatonin at night.
I came off at rummie instructions as it was drying me out ,I have SS .i have been put on duloxtine which is great for the tingling part of the pain but I haven't had a full night sleep since I came off in march 
I tried Amitriptyline 10 mg. and felt totally spaced out and couldn't cope, however pain clinic gave me Nortriptyline which I gather is a newer version of amit. I am fine on that.at 10 mg.
I take 200mgs each night to help with anxiety
I can not take it, it makes me a vegetable. My hubby takes it, it helps him sleep. Do not take it 8-10 hours before you have to be useful.
That last sentence is really useful
Wise Mr Badger x
Oh, Miss Foggy, I'll lose my street cred with that kind of talk
Hehehehehe
Thanks folks xx
I would think about 90 per cent
Hi I was on it for about 18 months but was taken off it as I have sjorgrens ,it was drying me up and I am suffering from breathlessness , quite badly , so I have been put on duloxtine in stead unfortunately I now don't really sleep the pain is better than it was but I am exhausted most of the time after the simplistic of task s x
I take Amitriptyline in the evening - I set my phone to remind me at 7pm and 7.30pm - but if I get distracted I can still forget! I take it with Lyrica [Gabapentin] and around 9-10pm take Tegretol. That can be taken for FM but I take it for epilepsy. Without Amitriptyline I get restless legs - hypersensitive to creases, fabrics and position. I now have to sleep in pyjamas and raise my legs off the mattress. I still have to use the pillows for this, but not as much. If I forget to take it I can guarantee a restless, uncomfortable night. A few weeks ago I fell asleep at 5.30am just after my husband left for work! Not good when you still have to get up at 7am.
If you take any meds, they may not suit you. Check the side effects and any other meds - don't rely on your doctor to do this even if you have been with him for years! Mine has nearly slipped up before. Lyrica and my reduced movement has put 3 stone on me!
Just be aware.
Soft hugs
Hi, I have ben reading these comments with interest. I agree with you all that it is ok for some and not others. I suffered badly with hallucinations while I was on these. Since changing to Zopiclone I have had no problem and have slept well for the last 11 years since being diagnosed with FM
I have been on amitriptyline for over 7 years and it has never helped me at all
Hi Lynn, i couldn't tolerate amitriptyline, i had dry mouth, which become too much. Hope you ok. X
I was just wondering if anyone else suffers from a kind of narcolepsy.....falling asleep randomly
giving up on amitriptyline 
Wondering if anyone's the same? 
Just wondering if anyone else deteriorated rapidly after flu ? 
Just wondering if anyone else is experiencing this too?
