Amitriptyline stopped working! Help

Posted , 4 users are following.

I seriously developed fibro seven years ago after a hip replacement. They tried me on every drug going. Pain relief patches and an infusion. Nearly all these options did nothing for my fibro but did give me horrid side effects. In the end the only drug that helped was amitriptyline. Only mild dizziness being the side effect and mild slurring of speech.

All has been on a relatively even keel. It allows me at least a decent nights sleep. Without it I'm lucky to get a total of two hours sleep.

I've still suffered with all the usual symptoms but they were just about bearable.

I also went to the pain clinic but that didn't work. Nice folk there but they could not understand how much the fibro disabled me. I think when the lady started talking about my sex life that the penny dropped. They really didn't understand.

They put me in a room with other fibro suffers who were all chatting away and full of life. I was shattered by the time I sat down. I realised that some people must have very mild symptoms!! My situation was very different to these jolly folk.

Unfortunately the Ami no longers work. Life is now getting unbearable! My GP said there is nothing left. I'm pretty much suicidal now. I'm at the end of the line.

Can anyone give me hope?! I've always been an optimist and thought there would be a cure by now.

The GP told me to talk to the Samaritans. There was talk of sending me to a gym to do gentle strengthening exercises. I have already been doing this myself as I learnt of its benefits online. Unfortunately it's not alleviated my symptoms.

I am always looking online to see if there have been any breakthroughs. Help!

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  • Posted

    Hi sarah78047,

    We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologise for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

    If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

    Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

    If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

    If you are based outside of the UK.

    The Samaritans is a UK based charity, but they also have suggestions for how you can access help in other countries.

    Please have a look at this page https://www.befrienders.org/directory

    Patient

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  • Posted

    lack of sleep is the worst thing about fibro, all the aches and pains I can cope with but the insomnia is terrible. like you I struggle getting through the day, my cycle is, 1st night no sleep at all, 2nd night 4 hours if lucky , third night fall heavily asleep for 6/7 hours. cycle repeats. sadly in those waking hours when your body is crying out for rest your thoughts are bleak. In my waking hours I take a bath with magnesium flakes, put some classical music on, find a good book to lose myself in. you will have good days I hope, try not to despair, have you family to support you?. I have my husband who helps prop me up when I am down although very poorly himself. hope you have somebody who understands.

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  • Posted

    Hi Sarah,

    Are you in the UK? Have you thought about trying CBD oil? It's legal here to buy the oil from Health shops or on-line. (I think there are problems in some countries and US states).

    There are various strengths, qualities - and prices, of course. I would suggest, if you haven't used it before, to look for a good quality organically grown oil and start with a small bottle of low strength and take the lowest dose. See what this does for you, if you feel nothing, up the dose until you find you feel more comfortable. The idea is that the oil helps you forget about your pain and enables you to sleep. You may need to try different oils (plenty to explore online) as the ratio of CBD to THC (the chemical in cannabis that makes you high) varies.

    There is talk of medical cannabis being available on prescription but a recent documentary revealed this is all talk and the reality for one patient, when she finaly got it, was it cost her a fortune (WITH prescription!). I don't understand how it's like that but I do know you can buy the oil - although it is fairly expensive.

    Many people with pain find it better than taking pharmaceutical drugs plus there isn't the associated risk that comes with many strong painkillers. I suggest starting slow and low as people say it takes a while to adjust to CBD and to find the dose that works for them.

    Were you given antibiotics during and after your hip op? Sometimes these can trigger fibro and/or CFS and it's becoming more recognised that these two are actually mitochondrial problems. There's a lot of info out there about this and how diet plays a very important part.

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  • Posted

    Sarah, I really do know how you feel, it's an endless cycle of pain and fatigue which no one understands unless they've been through it! There are a few things that you can do, so please don't despair! Firstly, where are you in the world? Are there any support groups for Fibro or ME in your area? Have you tried CBD oil, alot of people find it very helpful, as do I, can take my pain down by 50-60% I would say. Have you tried turmeric? I take a teaspoon of turmeric powder along with a few grinds of black pepper (a must when taking tumeric), in a mug of warm milk with a spoon of honey, I find this can help me sleep and eases the pain. I also take a natural remedy with Lemon balm you can get, helps sleep and anxiety, not sure if im allowed to mention it here, but try googling it! Also on YouTube look up 174Hz music videos, I've also found these good for pain and it helps me relax. Give all or any of these a try, and hopefully you'll get some relief. Please let us know how you are getting on or if you've any questions, let me know. Hope you find something that's helpful, and please don't give up hopeđź’•

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  • Posted

    Thanks folks for your useful advice. Yes, I did try medical cannabis oil. It had good reviews and was expensive. It did nothing.

    We suspect I had mild fibro when I had the first hip replacement because the nurses were unable to get me to sleep a night. Every couple of hours through the night they had to knock me out with morphine which sadly does not last long. Of course I was also perplexed as I hadn't even heard of fibro.

    I've tried meditation and playing calming sounds of waves lapping at the shoreline.

    It's taken a lot for me to write any of this.

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  • Posted

    Sorry, yes I am in the UK.

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