Any experiences of >90mg doses of Amitriptyline for fibro pain?

[Winter_night]

Hi everyone. Thanks for taking the time to read my post. I suffer with a number of painful conditions: fibro, erythromelalgia, PoTS and haven recently been diagnosed with JHS (although not assessed how severe yet).

I'm currently on 90mg a day of amitriptyline amongst other things including codeine when needed. I'm finding after just over a year at this dose it is no longer having the same effect. I now wake in pain during the night, when I was sleeping through previously. I feel like my nerve and joint pain is 'breaking through' the amitriptyline. Does anyone have experience of being on more than 90mg a day, and was the increase effective? I'm not sure if I should look to increase or switch. I cant tolerate anti epileptics unfortunately so I dont have many options left....

[desquinn Partner Volunteer FMAUK Trustee]

typically at this dose they are looking at mood adjustment / anti depressant effects as well as helping the fibro. There have been a number of people on here using it for mood and fibro so hence the higher dosage. But it comes down to whether it is effective for you and that will only be known after using it for a month or so.

[Winter_night in reply to desquinn]

Thanks  desquinn - I felt my mental health benefited from the higher dose once I got to 90mg but again, that’s worsened lately, so I guess that would be a further benefit to increasing. My worry is I’ll eventually hit a ceiling with amitriptyline but I want to keep working as long as possible and it’ll hopefully buy me another year or two.

[desquinn Partner Volunteer FMAUK Trustee in reply to Winter_night]

its a rule of thumb but 50-75mg is the top for "just" fibro. But, fibro is affected by many things including mood and stress / anxiety so addressing this can help with pain even if that's not the primary target. Then there is the effect of having a chronic health condition making you more likely to develop depression so again another entry point for anti depressants and addressing this can help your fibro in a sympathetic way.

[Winter_night in reply to desquinn]

Thanks desquinn - that's massively helpful as I'm struggling to articulate myself well at the moment. I'm going to write that down for when I see my GP. She has tended to defer to my consultant for advice on changing meds but hopefully explaining the logic will nudge her towards agreeing the increase without me having to wait for my next rheumatology clinic in 2 months!

[Cat00]

I've been up to 150mg of Amitriptyline but it didn't make any difference so I went back down to 90mg. I primarily use it for sleep but I sleep very badly with it, I just sleep even worse without it.

[Winter_night in reply to Cat00]

It’s so often we have to settle for the lesser of two evils, isn’t it  Cat00 … I’m not getting my hopes up too much but definitely want to titrate up from 90mg as amitriptyline has been great for me… it just seems to be I have to up it periodically and I know there’ll come a day when I hit the max

[Cat00 in reply to Winter_night]

Amitriptyline is certainly a very versatile drug, I was always told 5mg - 20mg for chronic pain and/or gastric problems, 50 -150mg as a migraine preventative 50mg- 150mg as an anti-depressant but I have met people on 200mg. My main concern is the negative effect on cognitive function, I don't need more difficulties in that department! My neurologist said that my sleep is so bad that for me she thinks Amitriptyline side effects are worth it in the long run.

[Winter_night in reply to Cat00]

Have you been on it long Cat00 ? I had such cloudy thinking for the first few months but it did get better over time. My memory is still not great but it’s not as bad as it was.

[Cat00 in reply to Winter_night]

I've been on it for about 15 years I reckon, came off it twice to have my children but had to go back on it in the second trimester because I couldn't sleep for longer than 40 minutes at a time.

[fibropatient]

Hi, I take 100mgs at night and find it great. I sleep through out the night and do not experience any fibro pain, I started on 10mgs and gradually increased the dose but it wasn't until I took 100mgs that life got so much better. I suffer very few flare up ( one or two a year but with rest these go quickly, a week or so. I also take venlafaxine for depression though I have established that these tablets do not help my sleeping, and this I find is so important.

[desquinn Partner Volunteer FMAUK Trustee in reply to fibropatient]

we often talk about a vicious cycle of bad sleep leading to worse pain that leads to cognitive issues and then you are back at worse sleep and round and round you go. So dealing with sleep or pain better is so important to the cycle.

Given your experience if you are willing to do a case study for us that would be great as it is good to show how certain things work for some people.

[fibropatient in reply to desquinn]

Hi Desquinn, Could you tell me more please. My immediate thoughts are yes if it will help others but then I question how do a go this case study, what exactly what is needed, who will see it, will I be treated negatively for what I say and more importantly is will I really be able to complete it with my brain fog.

[desquinn Partner Volunteer FMAUK Trustee in reply to fibropatient]

Thanks for considering it. There is no pressure and you could take your time. As to who and how it will help then it depends. but different stories help different people and we need more of them so that more people can be reached.

Our stories of people being active help others find activities that can increase their level of activity. Those stories that show that meds have helped people back into work help people know their are options and that employment is still possible. Stories of reasonable adjustments and employers help people talk to their employers.

There is no one story and all of them help fundraisers and those that want to interact with the charity know a bit more about the condition and help to raise awareness.

If you want to email [e-mail] then they will be able to help more. They can be anonymous, with or without photo and express the bit of fibro that you want to talk about.

[fibropatient in reply to desquinn]

Thanks for more information. I will email head office and take it from there.🙂

[Winter_night]

Thank you fibropatient - I’m anxious to try 100mg, hopefully soon! Going out of my mind this week with pain but my body badly needs a break from opiates so I’m pushing through with just paracetamol on top my normal amitriptyline dose

[Winter_night]

Thank you Hidden - I’ll update once I’ve been on the higher dose a couple of weeks. Do you mind me asking how you found Tramadol, are the side effects similar to Solpadol (codeine & paracetamol)? Opiates work for my pain but give me terrible issues with bowel, I’m having a week off them and I’m really struggling to be honest… I wondered if Tramadol might be better.

[Winter_night]

The 2 hrs needed to wake up and get up is 100% me. A litre of water and a litre of tea also 😄