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Fibromyalgia Action UK
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Medicine advice

Hi everyone, hope your day is going well and you have minimal pain. I’m going to the gp on Monday. Amitriptyline isn’t really working much anymore so I’m going to ask the gp to increase the dose. I am really struggling with day time pain. Can I ask what others are taking so I can take some suggestions to the gp please? Gentle hugs 😀😀

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Afternoon Pilipala18 - I couldn't get on with Amitriptyline, made me feel too much like a zombie. I started on Gabapentin about three or four weeks ago, 300mg three times a day, shortly to be increased, gradually, to 400mg three times a day.

I know a lot of people don't like it because of the supposed weight gain - but I'm already on a diet so not bothered about that, have to say I feel better than I have for a long time, it has definitely reduced pain levels and also the terrible stiffness I get. I am sleeping better but still exhausted, but at least psychologically it is helping. I have had to have a 'do nothing' day today - I've overdone it because I felt better and today feel really awful. But, it might be worth asking your GP about the Gabapentin. Good luck and gentle hugs right back at you xx

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Hi Poodlemum, thanks for your reply. I’ve heard a lot of people say that about Amitriptyline. I’m only on 10mg and it worked well the first few weeks but doesn’t seem to be helping the pain or sleep at the moment. My weight isn’t great at the moment but I’ve got to be careful not to snack on the wrong foods. Glad gabapentin is working well. Could it be taken with Amitriptyline do you know? xx

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I'm not sure, but I do know that you can take a lot more of the Amitriptyline, I was on 35mg - so that's an option. The Gabapentin works specifically on neuropathic pain which is really helping me. xx

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My rheumatologist said I could go up to 50mg of Amitriptyline if needed.

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Hi, i am still waiting for confirmation of what is wrong with myself but the rheumatologist, pain clinic and GPs at my surgery think it is Fibromyalgia and the rheumatologist said that there wasn’t much else she could do as my GP had already put me on Amitriptyline and i was/am on 50mg a taken each night. I am also on mirtzapine (think I’ve spelt it wrong) - antidepressant as been feeling low. They have helped a bit but have noticed that I am starting to feel more pains again.

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How long have you been waiting for a diagnosis? I ended up going to see rheumatologist privately in December cause nhs was a long wait. He said for me to have mri and ct scans and when I saw him end of Jan he was looking for scan results (hadn’t had the scans) and somehow the scan appointments weren’t on the system so he made them again and I didnt wait too long. He diagnosed me end of April and seeing him again end of October. He refused to give me any medication until my diagnosis. Hope you get a definate diagnosis soon 😀😀

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Hi, my GP believes it is Fibro, they have done so many bloods i have lost count then i was referred to rheumatologist last year and was seen January this year and she send me to have x rays and bloods and said that as I am already on Amitriptyline then not much else she can do apart from referral to the pain clinic which she did and saying that it all points towards Fibro but she doesn’t like to label people so wouldn’t go any further. I went to the pain management seminars which was useful information and been waiting for appointment with their physiotherapists as they are trained in chronic pains unlike most of the professionals who are mostly only trained in acute according to my pain management seminars! GP earlier last week i saw as had more pains in hands to elbow which was different and he said it all part of Fibro so deal with it! Got a fit note with reduced hours but work sent me a letter yesterday saying they need to discuss this situation. I called my surgery Friday saying that i need to know what is wrong with me - they cant say deal with it when they won’t tell me that I have Fibro so they now inform me that they can refer me to a Fibro clinic so no idea how long that referral will take. But this past week i have been so exhausted i wish i could just stay in bed but the pains kick in. i have suffered with pains, foggy head, etc for the past couple of years and these have been building sinc my operation to remove my ovaries as I have suffered with Polycystic ovary syndrome since i was at school and only finally got the professionals to finally agree to remove in my late 30s. So i had hoped to finally be pain free but that hasn’t been the case and so now it is all getting to me.

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Yes I can understand it getting to you. I’ve been off work since September and my boss wanted to know what was wrong cause the insurance people weren’t happy. I’ve got on a chronic pain course starting September so I hope that will be of help. I think part of the problem is I thought when I was diagnosed I’d know what I was dealing with and it could be sorted out but that isn’t the case. Think I need to be patient until I get the meds right. Are work being ok with your reduced hours. Got another visit to occupational health doctor Wednesday and so far he hasn’t been able to suggest any improvements that can be made. Could you maybe go to a different rheumatologist? I was in bed a couple of days last week. I just find it frustrating that because I can do something today doesn’t mean I can do it tomorrow 😀😀

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Hopefully the course will help, i may look into that as meant to be more in-depth than the seminars. Understand exactly what your are saying about being able to do something one day and not the next. I read somewhere saying that you need to mourn the old you and learn the new you (it may have been on here). Not sure I am at that stage yet but being on here is helping me this weekend. I thought work were ok as over the phone they said one thing but then yesterday i received a letter saying that they need to discuss on Monday the situation so am stressing about that which isn’t helping things! One of the GPs at my surgery have said they will refer me to Fibro clinic. No idea we had one of those or what they do so hopefully wont have to wait too long for that to come through! My meds were working but the past week i hav been getting a lot of pains and new in areas and so exhausted that i just really cant get going with anything. Let me know how your course goes when you get started and i will find out if anything like that near me Thanks again for your posts. Hugs x

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Yes it’s hard to realise that you will never be as you used to. I’m also on list for fibromyalgia rehab programme. I’m not 100% sure everything it involves but there hydrotherapy, cbt and physios there but it’s only for people with fibromyalgia. I find stress makes the pain and fatigue worse but it’s easier said than done not to get stressed. Hope your meeting on Monday goes well. They may be asking what adjustment could be made for you. If you look at a post I put up a couple of weeks ago there were lots of good suggestions for the workplace. xx

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Yes Gabapentine can be taken with Amitriptyline I was on Noryripyline which is similar .

Only thing I found was I was like a zombie most of the time not interested in anything and no one not good.

Since Christmas I have come off Nortripyline, gabapentin and floxatine.

I did this very slowly as I felt I was taking all these med and was just existing not living.

I am now on oxCodne slow release 5mg twice a day I think 10mg or 3 a day would be better still struggling with stiffness and pain but in my head I feel alive again.

Going to pain clinic in July to see if we can sort it.

But unfortunately I start chemo 2 July so that might interfere.

Ask to go to pain clinic I have wasted years feeling rubbish now I want to go and see my grandchildren and do as much as I am able, instead of feeling like I don't care, and not interested in anything around me.

So be careful not to fall into the trap of just existing.

Have a great weekend.

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Hi Newquay, thanks for the advice. I’ve got on a new type of pain clinic in my area starting September 3rd for 6 weeks. I suppose it’s pain versus zombie like state. It’s just trying different things to see what works I think. Enjoy your weekend too 😀😀

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Good you go to it, i just don't want you waste time feeling like I did for so many years thinking there is no alternative when there is.

But I had to do it myself doctors are just happy to dish the pills out.

Last tues so my oncology specialist and of course had to explain to him what and why I done it.

All he could say was good for you.

Now of course I have chemo, every week fir 12 weeks yuck and then radiation therapy to look faward to lol.

But I tell you one thing he asked me what treatment I was having for my osteoporosis when I said I had never been offered any he was shocked 😳 he just said he would sort it out for me.

And he also asked about my family because the Brest cancer is connected to prostrate cancer and has he put it a killer, he's going to sort my children out and there's even the Girls.

So I tell you what I thank God fir Mr Hogg lovely man.

Take care be well but rember pills aren't always the answer.

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I was prescribed Amitriptyline and Gabapentin together for Complex Regional Pain Syndrome with good results. I take 75mg Amitriptyline now for Fibromyalgia with no 'zombie like' side effects, just a dry mouth which is better than the full on pain.

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Hi Callo56 thanks for your reply. My rheumatologist said I could go up to 50mg of Amitriptyline. Good you can take it with only a dry mouth side effect 😀😀

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Hi. I'm on 900mg gabapentin 3 times a day and take 50mg of amatryptoline just before I go to bed. It mostly manages my pain really well, but I do feel tired most of the time and constantly have s dry mouth. After I've taken the 3rd dose of gabapentin and amatryptoline I'm absolutely wiped out, get jelly legs and to be honest feel like I'm drunk. It's worth it though to be pretty much pain free during the day and be able to still work full time Just see what works best for you. Good luck.

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Hi Debs, thanks for your reply. Yes there’s a lot to be said to bring pain free. I’ll mention gabapentin to my gp 😀😀

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Hi,im the same Amitriptyline made me even more exhausted.Been taking Gabepentin off and on for a while.Really struggling with weight even tho i go to slimming world.What's your secret,pain definitely worse when i don't take them?

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I am feeling exhausted but put it down to fibro rather than Amitriptyline. When I first started taking it I was sleeping better and took the edge off the pain but now doesn’t do much

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Same here,worked for a while.Keep thinking Gabepentin not helping but notice a difference when i stop them.

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Yes I didn’t take it one night cause I couldn’t remember if I’d already taken it 😂😂😂 when I woke up with awful pain in the middle of the night I realised I hadn’t 😀😀

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Well, I've been obese for over 40 years and done and tried everything, even asked for weight loss surgery. But more because of the people around me, and by people I mean my mum :D - the truth is the weight never bothered me. But at 57 I know it is starting to take it's toll and my husband is also dangerously obese - for the first time since we married I'm the thin one, lolz. So, I started making a few changes earlier in the year, but I watched some of the post-Christmas diet programmes, the C4 series did a kind of survey, the NHS 12 week healthy living plan came out on top, it's free and wholly online. So I checked that out and started to implement some of the recommendations. My husband was seeing a healthy eating person who gave us some great tips - such as whatever time you eat breakfast (hubby works shifts), eat lunch five hours later and dinner five hours after that, then fast for the rest of the 24 hour period.

I also literally bullied my husband into not bringing stuff like biscuits, bread, pastries etc into the house - I threw stuff away when he did. Eventually I found the Weightloss forum on here and joined that - it is brilliant!!!!! Loads and loads of support and information, loads of people with health issues, it's pretty busy but really worth it.

So, after all that what do I do - I count calories, but it's not like the 'olden days' my calorie allowance is pretty generous - my BMI is 43 so I can have 1780 - 2300 calories a day :O This is the link if you want to check it out.

nhs.uk/Tools/Pages/Healthyw...

So then it's about realising it's a lifestyle and not a diet - I have tried to cut out processed food, cut portion sizes by weighing everything - I don't do that now but it was a real eye-opener and a great tool when we first started. I use MyFitnessPal - a free app that helps track calories and I don't beat myself up if I eat a slice of cake!!!

Overall I've lost 3 stones, my husband 11 KG (he's Turkish so does metric, lol). Since starting the Gabapentin I've continued to lose a couple of pounds a week, it literally has made no difference.

So, that's all a bit long-winded, hope some of it is useful.

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Hi,I'm 57 too,sure menopause,meds etc don't help.Been on slimming world for a while,eat very healthily.Find if i lose one week either stay the same or put on.Think not being able to exercise is a issue for me.My dr put me forward for gastric surgery but my bmi isn't high enough.Main reason she suggested it is i have severe sleep apnea,couldn't get on with the equipment they gave me.Losing weight is the only answer.I will look on the site you suggested.Thanks very much.x

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The Weightloss forum maintain that exercise isn't as important as food changes. My husband has sleep apnea, that's another reason I've made him change the way he eats, he does have the machine and it's a great help, but I met someone who couldn't get on with it and she has some kind of mouth guard instead, I'm not entirely clear exactly what it is but it might be worth asking, if your sleep apnea is bad then that will only exacerbate your eating habits and your Fibro :(

I'd really encourage you to join the Weight Loss forum on here and have a look at your portion sizes and calorie intake, you might be surprised. xx

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Hi PoodleMum, well done on your weight loss. I find it easier to not buy bad snacks to keep in the house then I can’t eat them. I do eat a pretty Heath diet but think not moving about as much as I used to means I’m not burning the calories. I could do with losing a bit of weight so I’ll have a look at the NHS diet plan. Thanks for the advice 😀😀

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Happy to help/share, people are so helpful and supportive on this forum and the weight loss one, I hope your pain is a bit better today, I overdid it yesterday by going to church, the heat is going to finish me off I think, so I am spending today doing barely anything. Hope your pain is a bit better at least, gently hugs xx

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I have gabapentine for keeping pain at bay on a day to day basis.

I have Tramadol for when it’s bad

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Thanks Wendy, my pain in the last few days has been really bad. I’ve got naproxen I take but haven’t got a ppi so can’t take it every day

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Hi if your takeking amitryptiline for pain etc I would stop this .there is lots of painkillers and antiinflamotry etc you can try.and amitryptiline for sleep usually ?.I would speak to pain nurse at surgery or gp

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The rheumatologist prescribed Amitriptyline cause I said I needed help sleeping as well as with the pain. I’m happy to keep taking it just need something for day pain 😀😀

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Yeh that is fine if you got it for sleeping a good sleep can reduce pain.it is trying different ones that suit really have a chat with gp .there is paracetomal starting base does help others work .dyhydracodine I like them .co codamal.tramodal .naproxen.fentynal patch .gabepentin .or pregablin etc .there is a small bit more you can mix them with different dose .next step is morphine.hope you find the right balance and the right tabs to help all through gp of course .take care

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Thanks Ajay, co codomol made me sick. I take naproxen for migraines and gp said to take for fibro but I haven’t got a ppi so can’t take them every day. My normal gp is on holidays so Monday I’m seeing one I haven’t seen before. I think I just need to be patient until I find the right combination 😀😀

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Good luck hope you find the right ones for you

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Thanks Ajay 😀😀

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Hi pilipala18

I was taking tramadol but it made my insomnia worse so the gp has put me on codrydamol for the pain to see if it helps, haven’t tried it yet, will start Monday, hope you find some thing that helps you 😊NanaT

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Thanks NanaT hope codrydamol works for you too 😀😀

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Thank you Hun 😊

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Hi. I take 1200mg 3 times a day of gabapentin which is the maximum dose. I started on a low dose and it was increased slowly. I really notice if i forget to take them. I have had quite a bit of weight gain but to be honest i stopped worrying about that as sorting out pain more important to me. I also take co codamol 4 times a day and 35mg of amitriptyline at night. It was increased to 50mg but it made my heart race so came back down to 35mg. Good luck in finding the right medication for you xxx

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Hi Louinpain, thanks for your reply. A few people have suggested gabapentin so I’ll mention that to my gp. I think if the medication is helping weight gain is a minor side affect. It’s better to get pain under control and worry about weight another time. Thanks for your advice xx

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No problem at all we are all glad to hekp in whatever way we can. Good luck xxx

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Hi again. Just to add, I'm not aware that I put on weight when I started the gabapentin and amatryptoline, I was already a bit overweight. I'm doing slimming world, and I've lost over 1.5 stone since January and dropped size in clothing, so you can lose weight on these drugs. X

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Hi Debs, I lost weight when I was first ill with fibro but have now put it back on. Well done for losing your weight. I think it’s a case of watching what I eat and when I get the pain under control trying to do a bit of exercise. Thanks for your advice xx

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Hi Pilipala, I was on amitriptlyine 25 mgs last year and since coming off them have suffered with a migraine everyday, I am on Gabapentin and venlofaxine, the venlofaxine is an anti depressant and works well for my fybro mixed with the gabapentin. I would be careful upping the dose for amitriptlyne as it does make you drowsy and zombiefied in the mornings and the pain coming off them too. Unfortunately we all different so what works for one might not be for you. Good luck at docs. Take care Sarah xxx

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Hi Sg1471, thanks for your reply. Funnily enough for the first 6 weeks of being on Amitriptyline I didn’t have one migraine but I’ve had a few the last couple of weeks. I’ve heard lots of people saying about the zombie effect in the morning. It was taking the edge of the pain and I was getting more sleep so think I’ll try a higher dose but if it doesn’t agree with me then try something else. xx

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Yes very hard because I remember going to Costa Rica on a sea turtle project helping there and things like that now I’m exhausted and can’t even be bothered about dust on cabinets especially this past few days! I hope it goes ok too but I’m not holding my much hope! I will take a look for that post thanks.

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Costa Rica sounds like a nice place to visit. Yes I feel exactly the same about things. They will still be there tomorrow . My post is called work from 3 weeks ago xx

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It was amazing! But it feels like that happened to someone else the way I’m feeling. As this week I have been so exhausted! That isn’t even the right word to explain how tired I’m feeling and some pains too but more the exhaustion has wiped me out this past week. Ok thanks will take a look so at least have some ideas ready for tomorrow! But I did see on my fit note that if no agreement can be for both then it is to be taken as I’m not fit for work so that is something I guess but don’t want to go down that route if can avoid it. Hope you have a lovely evening and that the pain eases. Hugs

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I have been taking Gabapentin. 3X a day. 300 mg. Going to increase to 600mg. Next refill.

Wish you all the best at your Dr. visit. Take care.

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Thanks Kelly, fingers crossed I get somewhere tomorrow 😀😀

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Hi

I take nortriptyline, oramorph, zomorph pregabalin- all for pain.other meds for other conditions. I have non alcoholic steatohepititis, fibromyalgia, under active thyroid, IBS, diverticulitis, gastritis, osteoarthritis in my knees which having fibromyalgia makes it worse!! Severe itching , excess sweating to name but a few!! Got to keep smiling 😉 xllove and hugs Lynne xxxx

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Finges crossed. You're in my prayers!

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MY SPINAL SPECALIST RECENTLY recomended amyitriptylin i dont like it one bit made me sleep ok but like zombie al day after have stoped also my dentist said drys mouth bad gums teeth i cant sleep but im not taking this horrible med see specalist tomorow go say dont like the med see what has two say lack off sleep is awfull with pain wish you well be carefull this med old one not best de not for me but may well suit you meds dif each person

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Gabapentin, tramadol, fexiral (sp?) an occasional hydrocodone are what I take for pain. I can’t take NSADs because of kidneys so I am limited on what I can take.

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