Amitriptyline for nerve pain

speedalong
speedalong Member Posts: 3,315
edited 11. Dec 2024, 15:47 in Living with arthritis

Hi folks,

Feel this is a cheek after not posting for so long, but I trust your advice.

Quick update: THR and hip resurface replacement are still holding out 26 years and counting for the THR. Knees and neck are grindy and knees always 'fat'.

I am at the tail end (I hope) of having shingles. Have been unable to sleep due to the pain. The rash runs down my spine on level with my shoulder blades and the pain is in the left shoulder blade, side and boob. Not sleeping makes it harder to cope with the pain.

When at wits end the GP prescribed Amitriptyline. As I also care for S (who is now 32!!) I was nervous about taking it but really need some sleep.

I read lots of threads on here and took half on Friday night at 8pm. I slept better and when woke for the toilet the pain was just in the distance but woke up at 5 am in terrible pain again. Also was very clumsy and not with all morning.

On Saturday I took it later in the hope I would be able to sleep later - and that worked. Slept well and slept later awoke and took paracetamol and did get back to sleep.

On Sunday took it earlier as had to get S up for college day service. It didn't seem to work so well (S had bedtime meltdown didn't help).

Last night I risked a full one at 8am. Gave me a headache in the evening, woke many times in the night and still feel non-functional and whoozy (12.45pm) now. Definitely can't drive.

I have a sick note to cover me this week whilst get used to the med.

Not sure what to do. Revert back to 1/2 or persist with the whole tablet. I can tolerate the pain during the day if occupied but at night the bed clothes touching my back and finding a position that is comfortable makes sleep difficult.

Sorry ramble on.

I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.

Comments

  • stickywicket
    stickywicket Member Posts: 27,764

    Hello Speedy and welcome back.

    I don't think I can really help but, for what it's worth....

    A few years back I got excruciating hip pain. Couldn't sit or lie down for more than a minute or two and, due to the RA and OA elsewhere, couldn't stand up either for more than a few minutes. Morphine did nothing for it. Eventually I was put on oxycodone by day and amitrip at night. The combo worked with no problems but I struggled to stay awake during the day. I got off them asap. My orthopaedic surgeon reckoned a bit of cement from my THR had ..dropped off and lodged on a nerve. (And gradually dissolved or moved on.)

    So, it did work for my suspecyed nerve pain. But definite drawbacks. Thànk God I wasn't responsible for anyone else at the time. I hope you can sort something out

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • speedalong
    speedalong Member Posts: 3,315

    Hi Stickywicket,

    thank you for responding, very glad to hear the cement has moved/dissolved as that sounds very painful.

    Sounds like your experience with amtrip (I shall adopt this term as it's impossible to spell the whole thing - I have to copy and paste every time!). I definitely don't want another day like today. Can you remember what dose you were on?

    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • Trish9556
    Trish9556 Member Posts: 740

    Hi @speedalong

    My drs have talked me into trying this on a number of occasions and it has never done anything for me apart from made me Ike a zombie. Increase the pills they said. Tried it, got the t shirt and told them enough, no more.

    The one thing that did work to an extent was gabapentin but even that you increase the dose gradually to get your working balance. This stopped working after many years so I weaned myself off.

    Good luck!

    Trish xx

  • stickywicket
    stickywicket Member Posts: 27,764

    Sorry, I can't recall dosage but I never took half a one. You might find your local pharmacist a good source of advice. Could you have interactions with other meds or supplements?

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • speedalong
    speedalong Member Posts: 3,315
    edited 12. Dec 2023, 20:15

    @stickywicket I'm on the lowest dose - 10mg for a whole tablet. I taking vitamins, magnesium and naproxen, so they should be fine.

    @Trish9556 Not just me then that feels like a zombie on it. I know its early days - but it's a balance isn't it? How do you cope now?

    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • Jozzie
    Jozzie Member Posts: 4

    Hi Speedalong,

    I was put on Amitriptyline and took one 10 m tablet every night for a couple of years. I suffered with foggy brain, tiredness and often felt down and not with it. Put it all down to having RA OA and Fibromyalgia.

    It wasn’t until I recently had a bad flare up that the doctor told me to take 2 Amitriptyline every night that I started to realise how much they were contributing to making me feel really ill.

    I always had to take them around 6pm as I have to get up at 6am every morning so you do need to take them a few hours before you go to bed in order to feel awake enough the next day to cope with life!

    However I have stopped taking them and will never go back on them again as the way I had been feeling for the years I was on them was worse than dealing with the chronic pain.

    At least now I have the brain and wits about me to go and get alternative treatments for the pain and find ways to cope with it physically and mentally rather than being emotionally and physically unable to do anything because of how Amitriptyline made me feel.

    Everyone is different I know and that was my experience but you have already mentioned how it makes you feel like a zombie and that creeps up on you and without knowing it you can get really used to that feeling if it means you are in less pain. Personally It was making me feel worse than the pain was and it wasn’t totally getting rid of the pain either.

    Could you perhaps try and take paracetamol and naproxen and see if that helps?

    You have to do what is right for you and your doctor will hopefully guide you in what is best but I hope my experience helps a bit.

    All the best with finding what works for you.

  • Woofy
    Woofy Member Posts: 360

    My GP said halving Am, is more potent than taking a full one. I tried it for a couple of days, when my pain was really bad and I wasn’t getting any sleep. I hated the way it made me feel, totally spaced out, so knocked that one on the head.

  • speedalong
    speedalong Member Posts: 3,315
    edited 13. Dec 2023, 17:38

    Hi @Jozzie , thank you for sharing your experience.

    That's a lot to deal with RA, OA and fibromyalgia. The side effect must have been awful for you, to opt for pain instead.

    I took half again last night and finally start to feel more normal (but experiencing more sensations and itching) and if I take another that needs to be at 8pm at the latest - a very small window of feeling functional. When I return to work I will need to take it earlier like you, and even then fear I wouldn't be safe to drive in rush hour City traffic.

    I asked at the pharmacy re Lidocaine patches but it appears I'd need them on prescription.

    What other non prescribed treatments have you tried?

    I think I need to dig out my mindfulness and relaxation stuff and try that.

    I am taking naproxen and paracetomol.

    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • speedalong
    speedalong Member Posts: 3,315

    @Woofy thank you for your reply. That's exactly how I feel.

    The GP wasn't keen on me taking half either; but I read an NHS leaflet online that suggested doing this if side effects were too much, so that reassured me that it didn't have coating that meant it had to be swallowed whole. The tablet is very small so not easy to cut but I use a pill cutter. I felt worse after taking the whole one.

    I've been taking it 5 days now and the zombie feeling isn't improving; hard to know which is the most debilitating - lack of sleep or the med. The only bit I like about it is when I wake in the night the pain is only in the distance.

    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • Trish9556
    Trish9556 Member Posts: 740

    Hi @speedalong

    Apologies I thought I had replied! Since my surgery in March I now don't take anything for nerve pain. Amitriptyline is not to be repeated and if I need to it would be gabapentin but this stopped working

    Love n hugs

    Trish xx

  • speedalong
    speedalong Member Posts: 3,315

    @Trish9556 that’s great your op has relieved the nerve pain. I wonder if the body responds to Gabapentin after a gap (if you ever needed it, 🤞you don’t).

    I didn’t take the Amp yesterday evening. Harder to fall asleep and slept shorter but feel a bit more like me this morning.

    itch and pain behind shoulder blade is more prominent today. Hope other meds stop it escalating.

    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • frogmella
    frogmella Member Posts: 1,111

    I didn’t do well on ami it made morning impossible unless I wrote off the evening. I moved to gabapentin instead. Much better but it did make me remarkably stupid! Not do good given I was trying to teach high school chemistry at the time but it was a good compromise. I’d try asking for it but be careful coming off the ami, I had awful withdrawal. Oh my nerve pain was spinal from facet joint arthritis

  • My Dr prescribed amitripyline for me yesterday along with co-codamol instead of naproxen & paracetamol as they weren't working for the pain of my osteoarthritis in my knees. It's the first night I haven't woken up every 2hrs in pain then obviously because I'm slightly awake go to the toilet 🙄. I get up for work at 3.50 so my Dr said to take them at 6pm. It's my day off today & I woke up at 6am, I'm hoping I can get up at 3.50 tomorrow. I'm on 1 tablet a night for a wk then can go up to 2. So far I've just got a bit of a headache & a bit of a shaky feeling but the tester will be how I am tomorrow. I hope your side effects have settled down now.

  • creAte
    creAte Member Posts: 24

    @speedalong @nottodaysatan

    I have not joined versus arthritis for that long but gradually reading more posts, past&present, it is simply amazing to read&learn how we are all very different-responses to meds & treatments & journeys.

    Cutting story short: Here, since mid-October I asked permission to try Amitriptyline for big nerve pains & problems/on-going daily 1 year and a half now. Before I was on co-codamol up to 30mg ×2, that helped partly for up to 5hrs, but when I had to take twice or 3 times per day 30mg×2 over several days that's when own brain starts to suffer a lot & too much & not good news.

    Amitriptyline mid-October was started as one 20mg per day - no side effects - took 4 weeks to show effect/often stated online medical source. Indeed nerve pains&problems had partly improved. New talk with doctor = could be increased. So started one 30mg per day and nerve pains&problems improved a touch more. Nerve pains&problems are daily but Amitriptyline seems to have helped November&December months so far in a new way . Still, it's early days, plus 1 med was added 15 days ago.