Hi Can anyone give me some advice My new GP has lowered my Amitriptyline from 25mg to 10mg due to my other medication & risks with my heart taking the two together & now My fibromyalgia is not under control & I am really not well.
it was under control on the 25mg I really want to put the dose back up myself but looks like the new GP does not want me on Amitriptyline at all.. any advice would be appreciated as I am really depressed with all of this & being constantly ill daily
Hi
So sorry you feel so rough. Could you see a different Dr? It might be worth a try. Please take care. Love and hugs Lynne xxxx
Ask for a referral to the pain clinic if you haven't already had one. Our local one seems to be pretty good and getting medications right and pain under control, or as Oldham12 says try and see a different GP to discuss your concerns. If you are assigned to one doctor then write to them setting out the problems then phone them for a telephone consultation that way they have your concerns in writing and are more likely to deal with them as there is a letter recording it rather than rely on the GPs notes of your visit.
thanks for your replies i've seen 5 separate Dr's & they are all following what the computer & mental health consultant is saying.. which to be honest is not helping my mental health or fibromyalgia feeling really hopeless at the moment I think I will ask to be referred back to fibromyalgia consultant to get this sorted out thanks again x
Thanks Ajay575 its all a mess sadly & I am the one who is suffering. I've been going to the Drs weekly & I am starting to get really fed up. this has been going on for weeks.
its a big surgery lots of Drs & loads of locums GP's. getting to see the same Dr twice is almost impossible. It looks like I need to go back & insist on my meds being put back up & to go back to a consultant they really do not understand how people with this condition feel mentally & physically & I hope I get it sorted I am really struggling at the moment
that's what I am going to do Ajay575 I am really fed up & need to get my conditions back under control feeling this way is becoming unbearable to be honest
I've been reduced to two x 10 mg night.same with other meds on.do you have blood tests.if so they check medications are OK on your liver function.as we can go into organ failure due to medications.so its precautionary.
Talk to him, explain that you feel so much worse. Maybe some of your other medication can be altered to enable you to get your amitriptyline dose back up? Or,if you are under a pain clinic or specialist just go to them- they tend to know much more about medication use in fibromyalgia than gp's. Hope you get some help. x
My wife takes Amitriptyline along with other medications for separate conditions. It took a while to get the dosage right and every now and again has to be altered due to changes in other medications. Have you discussed your issues with the new doctor? You should be able to get a second opinion if you're not satisfied with those discussions. Our chemist is a great source of information with regards to the interactions of different medicines, maybe they're able to help you understand what the issues are? Good luck and hope you find some help.
Hi Molly, I understand what you are saying. It was a meducation medic at my surgery who decided she needed to assess my meds. and said is doing it with all long term patients. She changed all meds reduce and took me off Amitriptyline. I was in a mess. Health went down, depression increased. Had to take 6 weeks off work to get back on an even keal. Go back and explain to your new gp. You know your condition better than anyone, especially as your gp is new to you. Maybe gp was trying to get to know you and "'Start you again"' to see if a change would be better. Its obviously not. Try to explain why you need you go back to the higher doze. As long as your gp knows you understand your body and condition, and can maintain a bearable level to exist with your condition, to enable you to have some quality life, then hopefully gp will support you. Good luck. 💚
Hi having had Fibro for 30 years I can honestly say Amitryptline is the best medication for this condition . I used to take 50mg with other meds for years, I now take either a 10mg or a 25 mg as my Fibro is up and down, I know my own body and when it starts to dip I take a 25mg , gives me a good nights sleep and brings me back up. I asked my GP about the effect it could have on my heart and he said it’s only a low dose and is fine to take with other meds, see another GP if possible but stand your ground.
Hi
I am surprised they have reduced it like that it should be a slow reduction!
You can take other antidepressants!
I hope you get sorted I would see another doctor for a second opinion.
I’m on 25 mg amitriptyline
Hope you get sorted
Take care 😊
hi, did your doctor reduce you slowly from 25mg to 10mg, if they didn't you could be having withdrawal symptoms. these drugs should be reduced slowly. what other medications do you take.
I know doctors always worry about serotonin syndrome. take care x
If the amitriptyline was working so well why did he change it is the other medication for same condition x
Hi.. I'd give them ago and just see how you get on, if you can't cope I would definitely see a different doctor.
I too am taking amitriptyline 4x 25mg and I'm able to cope ok, my doctor did say the higher dose is only taken if you are suffering with Depression.
It messed with metabolism so I stopped taking it bad side effect
Hi honey what was your ride affects. X
Hi Everyone thanks for all your replies I will explain a bit better I have had depression & been on medication for 30 years. I was diagnosed with fibromyalgia 5 years ago they put me on Amitriptyline which did the trick & I have managed my fibromyalgia. 2 years ago my old Dr suggested coming off my Antidepressant medication as it was linked to heart failure I did as he suggested & I had really bad side effects & I was really ill.. So stayed on my meds everything went back to normal. I moved to a new GP not my choice !! they flagged it up that both medications together can cause sudden heart failure so I felt I had not choice as the mental health team agreed with the new GP. I weaned my self off the antidepressants over 2 months they then wanted to drop the Amitriptyline from 25mg to 10mg slowly which I did. they started me on a new antidepressant medication I took it for 28 days it had no effect. Saw a different Dr he wanted to change to another antidepressant medication he assured me it takes time they are trying to get the balance right.. I expressed to all the Dr's changing my meds had dramatically impacted on my life & I cannot carry on like this I have no quality of life & now I cannot work & I am risk of losing my job. I am being told to be patient & they will cover my back with job. I know I shouldn't but last night I increased my Amitriptyline by 5mg & today I was able to function better. I have my bloods done but only when I request them which I have done last week. I am in a vicious circle my fibromyalgia is not under control neither is my depression both conditions are making each other worse all due to my meds being changed.
Hi!! sorry you are feeling so unwell. Fibro is no joy! It seems your GP has reduced your Amitriptyline as he/she is obviously concerned about the effects it could have on your heart and feels it isn't compatible with your other medications . It is better to be safe than sorry! We take medications to help one condition and they can cause so many other problems. If I was you I would go back and see this GP first and chat about how you are feeling and see what else can be done and you can explain how you feel since the dosage has been reduced. Your GP should be able to explain to you all the reasons why, and what could occur if you have to keep on a higher dosage as the last thing you want is to develop something else. The only things I take for my fibro now is Tramadol and CBD oil. I was so pleased to give up pregabalin and amitriptyline as eventually I couldn't put up with the side effects ,we are all so different when it comes to taking medication. I hope you feel better soon, sending hugs x
I swear by tramadol and CBD oil. I take two tramadol every morning soon as I wake up, I only take more if having a flare up. I find they have an antidepressant effect on me, I researched it and for some people they do effect the brain as anti depressant.
I don't like amitriptyline, find it makes me put on weight and groggy in the morning, but again if I have a flare up ill take it.
CBD oil has helped with my anxiety a lot.
I didn't like gabapentin or pregablin, didn't suit me.
I'm trying to exercise at the moment to try and loosen up my muscles, but if I do too much I get a flare up, so very much trial and error and taking it slow.
Recently been diagnosed with sleep apnea and using a cpap machine, I've seen research which shows sleep apnea can cause fibromyalgia so hoping I might get a reduction in symptoms but it's early days.
Getting relief from fibromyalgia is so much trial and error and having a good GP.
Hi Greendeco 13, I'm glad you are getting relief also from Tramadol and CBD oil. I never knew that Tramadol could have an anti-depressant effect on some people. I don't think I have ever suffered from depression thankfully ,but Fibromyalgia can get you so down when you are constantly in pain with flare-ups and just can't do the things that you were able to, and because us Fibro-Warriors can look so well, nobody really understands how debilitating it can be.
I was started on Amitriptyline about 9 years ago when I was first diagnosed, one of my main symptoms was having to stop when I was out walking as I was taking electric shock pains in my legs and had to stop till the pains went. I knew for several years things weren't quite right with pains here there and everywhere and were getting worse and eventually saw a GP who diagnosed Fibro and M.E. I was reluctant to take the amitriptyline but oddly enough back then they did help and I never felt groggy or had side effects at the time. As the fibro got worse my meds were changed and it was only about 3 years ago my Dr changed me back onto them. Instead of helping me sleep they had the opposite effect and I was constantly at the loo every hour or so through the night which I believe is one of the side effects. After not sleeping all night I could hardly lift my head in the morning with being so groggy and for the rest of the day. With having fatigue anyway taking the amitriptyline made me feel so much worse and they were doing nothing for my Fibro. It is weird how your system must change over the years.
I have chronic pain with a knee and back condition and they didn't help this either, so my pain clinic Consultant said I was right to stop taking them. I think you are supposed to wean off them but I wasn't taking them every night anyway so had no side effects when stopping them suddenly as I did with the pregabalin. I stopped them and after a week of feeling fine I ended up with sickness and horrendous stomach pain never thinking it was due to the meds. I had to re-start on a lower dosage and eventually wean off. For about 4 days I had been doubled in two with going cold turkey as the Dr said so I would advise anyone to wean off any meds.
I have had periods of being at my wits end with the chronic pain and Flares and my Pain Consultant has been unable to help. He doesn't like his patients on a lot of meds due to the side effects, and as I had had jaundice and high liver function levels in 2017 and was in hospital (due to cocodamols hospital Dr's thought) I am very wary of taking a lot of pills, and his only suggestion was that I increase the Tramadol when things got so bad.
I had a bereavement 3 years ago and he said this also was making me have constant flares. I was in bed 3/4 days out of the week and trying everything to ease the pains. I bought CBD oil which helped a little, but earlier this year things were so bad again. I got more info on my CBD oil and apparently after 6 hours it reduces by about 50 percent in your body so I don't think I had been taking it regularly enough. I then bought the higher strength oil and between that and my Tramadol I am coping with the pains a lot better and can miss out Tramadol at times. If I overdo things like everyone with Fibro it brings on the dreaded flare-ups. My mobility has got worse as it is so painful to walk especially outside so I think because I can't go hell for leather anymore lol! and having to rest in between chores now that this has helped control the flares a bit better.
I am sleeping a lot better now which is great just to get a few hours at least. This is one of the worse symptoms of Fibromyagia I think. It is hard to cope with pain when you are exhausted all the time and not sleeping, so I hope if you get some help with your sleep apnea you will be able to cope with the Fibro a bit better. It is exhausting going for days without sleep you just can't function properly and no wonder Fibro sufferers have anxiety and depression and feel they can't take much more. I think each of us has a cupboard like a chemist shop with all the different supplements and things we have tried over the years just hoping to get some relief from this condition. Please God maybe we will eventually get a cure or at least something that can control the symptoms.
I would advise anyone to give CBD oil a try, and if one oil doesn't work for you try another type. It's great you are exercising. I so miss walking any great length these days but I try to stretch and still try to keep active at home as much as the pains will allow. As my Consultant said, the worst thing you can do is not keep your joints/muscles working even if it is painful. I do end up like the Tin Man at times!!! Good luck I hope you will be getting some proper sleep soon!!! Sorry for the lengthy email. Healing Hugs!
Hi Greendeco13
I think its so hard getting the balance right & what meds work for each individual.
I have increased my Amitriptyline by 5mg & already I am able to do so much more today they obviously suit me I have tried CBD oil but because my mood is so low I was worried it could be making my mood much worse so stopped taking it sadly. I was told smoking cannabis can really affect your mental health I know the oil is not the same form do you know anything about the CBD oil & Mental health ? I really want to continue with the CBD oil as that really helped me sleep as I only took it at night time. I am sleeping again properly now so lucky for me that's not a problem at the moment. But sleeping problems are one of my issues from time to time. I cannot believe the response from everyone I have been feeling so low & alone in this battle but it looks like I am not the only person.
Hi again!! Have just read your more indepth post and I am so sorry you are dealing with depression also. CBD oil seems to be helping people with anxiety/depression so maybe you could ask about this, or get advice from CBD Users Uk site. Maybe some of the Admin staff on here would be able to give you some info on CBD. When I first attended the pain clinic I spoke to my Consultant about buying CBD oil and showed him the adverts in my Fibromyalgia UK Magazines but he wasn't for me going down this route. Now the story is different and the medics now know that this is helping various conditions and he is happy for me to be taking this now. The flare ups with fibro are horrendous and you would do anything to get relief from the pains. At times like that I use hot water bottles and a Tens machine plus my pain meds and the oil. You have to use 2 hours between the oil and any medication and sometimes 4 hours depending on what meds you are on. I hope you get your meds all sorted out very soon. Healing Hugs x
Hi 499
I have also been using CBD oil to help with sleeping as I couldn't sleep & I was worried it was effecting my low mood so stopped using it. I am so confused on what is best to do to be honest. All the Dr's I have seen know how I feel I have made it 100% clear I am not coping with both conditions. They just keep saying give the medication more time to work I am going back to see the Dr Again this week.
That's great you are going back to see your Dr again. I do hope things improve for you and your medication gets sorted out. Good Luck
Thanks 1499 I hope it gets sorted too. I just want my life to be back to the way it was before the Dr asked me to come off all my meds.
I totally understand , God love you, but some meds are so potent and at the same time you don't want to end up worse with heart problems!!! Some meds do take a while to work and hopefully the Dr will be able to advise. I hope you have family and good friends around you for support and who could even go with you to see your Dr.
I remember many years ago I was started on blood pressure medication, after a few weeks I didn't know what was wrong with me. I wanted to cry all the time for no reason, was shivering, and I could hardly go upstairs as I was so breathless and had such a horrible heavy feeling in my chest. I went back to the Dr and it was the side effects of the pills. It was the 3rd or 4th lot of pills I got before I got one that was suitable for me . They can cause so many side effects and I know you have been started on new ones, so it's possible maybe they are making you feel unwell. Have a wee read through the leaflets inside the packets and you may be able to tick off some of the symptoms you are experiencing . Make a wee note of them to take to your Dr. Some meds are given to help a condition and actually make it worse like me on the amitriptyline...it kept me off my sleep instead of helping.
It is easy for me to say, but try and keep yourself occupied during your better spells, even if it is just watching a film or something. I don't know if you have any hobbies that you can do to keep your thoughts on other things, though doing your exercises is brilliant when you can. I do some beading while I am in bed, and have the tv on. I try to read these days but my concentration isn't what it was ,possibly the "Fibro-fog". People laugh when I say this especially when I am trying to remember something, I think they think it is a name I made up myself lol!
When my husband was very ill and I got him settled into bed at night I would do some beading and for that wee while it just made me concentrate on other things, and the worry with him was left in the background if only for a little while. So many on here have given great advice over the years ,and most of us try and do something ,even if it is just going for a walk, listening to the radio or just sitting in the garden for a wee while as Fibro affects us all so differently and gets us all down. You get to a point some days you feel you just can't bear it anymore ,that's when I normally call on my Fibro-friends! Let us know how you get on MollyMalone hang in there!!! God Bless x
DillyDally made a very good point that maybe your amitriptyline should be slowly weaned from the higher to the lower strength,not sure if your Dr suggested this? I didn't experience any withdrawal symptoms from stopping them suddenly as was latterly only taking a 10mg at night maybe once or twice a week but as I mentioned had terrible effects when I stopped the pregabalin suddenly. Maybe weaning down slowly rather than starting you on a lower dosage straight away would have been much better for you if this isn't the case. x
Hi 1499
Thanks for your reply I have amazing friends & family supporting me. & yes I have hobbies but sadly nothing is lifting my mood or distracting me at the moment. I have never watched so much TV & stayed at home as much as I have done in the last 6-8weeks my home is my safe place at the moment where I can be me.
I was weaned off all the meds over a few weeks so it was done correctly I have just had a major crash when the amitriptyline was dropped & new Antidepressant meds were started & I cant seem to get back up again. the fybro is not being managed so my depression is a lot worse. I am trying everything in my power to pick myself up again but its very hard. I know I am not the only one & things could be far worse & no I don't want heart problems. But I also do not want to carry on like this. I just want to feel better again & living again not stuck at home 24/7 not seeing anyone or talking to anyone & not being able to work or do the things I love
Sorry if I sound ungrateful as there are people worse than me I am just frustrated as I was managing so well with everything & now its all out of control.
I was put on amitriptyline also but caused me legs to swell or so i think thats what did it . Got off of it and neurologist doesnt want to out me on anything other tham try botox. I have crest syndro/reynauds , migraine and who knows what else
Hi there, your doctor is right but don't give up hope. I have a remedy for Fibro. It's Milk Thistle. Milk Thistle in capsule form. Belive me, it really works but you have to give it a few weeks for your body to get used to it. Once it kiks in you won't want to take anything else. At least try it. kind regards john
Sounds worth a try! Does it really help with the pain? Brilliant if you have found this is helping you ,have never heard of it being used for fibro before but I will certainly have a read online about them. Many thanks!
Hi l think you should read the side effects on this medication. My doctor prescribed 10mg for me and l haven't taken any. I'm terrified because of the side effects and l have heart problems. Thankfully, though l am not pain/symptom free l am feeling much better since the change in weather. It maybe you have to try something else?? Sorry
Hi Mizunderstood No I have not read the side effects I don't want to be honest. Over the years due to anxiety if I have ever read the side effects guaranteed I would have all of them. I don't have a heart condition so my options are not as limited. But all medications have risks I feel it just depends on what quality of life you have that makes a massive difference.
Absolutely, and l really do feel for you. I'm newly diagnosed so i do not have the experiences with medication as people here. But one thing that l have tried that has helped a little with my mood and fibro fog is ginseng, maybe you could try some. All the best hun x
Hi, I’m on 50mg of amitryptyline and also take other meds for my fibro, oa, diabetes, cholesterol and bulging discs and have no side effects at all and I’ve been on them a lot of years, what other meds are you on
Sertraline 50mg (2nd lot of New Antidepressant medication)
Ah, I understand, they want you off the amitryptoline so that you can have Sertraline safely. I had to do the exact oposite, come off Sertraline in order to go onto Amitryptoline (all probably spelt worng as I am dyslexic, sorry!).
I was eventually given a third option, which was to have Amitryptoline for Fibro and Mirtazipine for depression. Some doctors think Mirtazipine is less dangerous than Sertraline with Amitrypotline, other people say it is the same, but the Mirtazipine deffinately turned out better for me than Sertraline had in the end. I would be devistated, horrified if I had to give up the amitryptoline now, or even reduce it! I have tried going without for a bit, and I got so ill. It might be an idea to ask what your doctor thinks of Mirtazipine as an alternative? Everyone really is different, but I think that sometimes doctors need reminding that pain and feeling exhausted actually causes depression in sensible people, so controling the Fibro should be the first thing.
I take Tegretol too, for Trigeminal Neuralgia, and sometimes Co-Codemol 30/500. I am now very, very slowly coming off the Mirtazipine after about 5 years, doing OK so far, I think because I've adjusted my life around the limitations of the Fibro. If only I could loose some weight and exercise more systematically and regularly! :-() ...But seriously, it's very hard to have self control when you already have pain on the one hand, and side effects to control pain on the other! It can feel like the fibro and medications control you, rather than your being in control - and it's worse still if the Dr's have different ideas again.
You do need a good, working relationship with your GP if you are going to get the help that you need - and it sounds like you have been pushed from pillar to post so far. I'd be focusing on choosing and insisting on seeing whichever GP knows my case best - or maybe writing a letter, as others have suggested above, so that each new doctor can see your problems set out in full.
Everyone needs to find their own best ballance with these issues, so it does take time, and it does take trying things out, and then having to try something else again, so never feel bad about badgering your GP - the more you do, the more likely you are to find your best solution.
Hi dinahdabble
I totally agree with you because the fybro is not being managed my depression is much worse. & I have been pushed from pillow to post my life has been turned upside down with all of this. I have now got to be signed off work again because I cannot cope. I am hoping that a light will start to appear at the end of the tunnel soon thanks for you reply,
I am sorry to hear you have to sign off work.
It can be awful having to explain your illness to an employer or others, but it's only their lack of knowledge that makes it awkward. The leaflets issued on Fibro etc. (e.g at doctor's surgeries) can be useful to hand over if you haven't already - it takes the stress out of explaining.
I've also generaly found the mountainers' method useful both with depression and fibro: "if you're tierd, stressed or in pain, halve the pace; and if that doesn't help, halve it again." I try to keep this in mind regardless of what anyone else thinks. :-()
I was put on Amitriptaline by my my dr and the side effects were too intolerable for me to continue, it was an awful drug. Made my heart go all irregular, missing beats and sometimes racing, sweating, dry mouth, dizziness. I could go on and it fractures sleep. So, I understand your GP's concerns. But that being said, if the 25mg works for you and you feel better on it and have no serious reactions to the drug, then I would carry on with it. Always increase or come off this drug slowly mind. If your having no joy with this dr, see another.
Look on the migraine trust website for other drugs you can try if your still struggling with pain and the meds your on don't work.
All the best
Amy
Thanks Amy
Amitriptyline seems to work for me sadly its not for everyone. I am going to try & see the same Dr tomorrow fingers crossed things will get better soon.
Hi to everyone who has replied to my message I managed to see the same Dr today I have seen him 3 times now. He has put up my Antidepressant medication up again.
I told him I increased my Amitriptyline by 5mg & said I felt better because of it.
I asked if I could increase the Amitriptyline to combat the depression & just be on one medication he explained it did not work like that & it wouldn't work as a pain killer so that is not an option for me. So the journey continues until the new meds start to work better. it looks like the Amitriptyline is not compatible with a lot of medication so my question is why was I put on it in the first place by the consultant who knew what medication I was already on. Thanks to everyone who replied to my message & all the suggestions people have made to try & help me.
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