my recent Dr appointment to see how I was getting on with the Duloxetine & amitriptyline ,
I also discussed the awful night pain I get in my hands when they are burning & incredibly painful, I could tell he was a none believer , the duloxetine was keeping me awake at night for hours meaning it was really difficult to get going in a morning & taking amitriptyline also was a great nights sleep but I was totally zoned out in the morning!!!
Dr suggested-
Let’s get you off the duloxetine!!or amitriptyline You can have one or the other !!
which is it to be !!! 😩
also we need to get you off the naproxen as there’s no inflammation- obviously because I take it !!! 😩
also let’s get you off cocodamol & paracetamol & you can just take paracetamol!!😩
I’m fuming 😤 he belittled me so badly, I honestly think he thinks all my ailments over the last 10 yrs are made up 😭 I’ve never been off sick I work for myself but believe me I often think I’m going to die at work with pains , but I just force myself to keep going there is not an alternative!!
sorry for the rant
feeling very defeated 😞
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Applespearspeaches
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Really feel for you. I too had a Non Believer Consultant so removed myself from clinic as doing more damage to mental health, My GP. thinks I'm ok as I chose to do this . !I think you are amazing to get yrself up to face the world each day and hold a job.
if docs could spend one day or night in our lives they would be sure to change their views !!
Hi Applespearspeaches, Just a thought have you tried a good Tumeric supplement, I take Healthspan opti- tumeric , and have found it helps a lot of the symptoms you have mentioned, I’m not saying it’s a cure all, it helps me manage my condition. Good luck, I hope you can get some more positive advice than you’ve been receiving. You could try another Gp, as sometimes they have different ideas on treatment regimes.
Hi sweetie.,Ur Doctor is an ? I'm thinking evil words now !!!
Whatever you do don't give up !!!
Get a proper Dr who will treat you like the precious gem you are !!!🤗🤗🤗
Id listen to everyone who replied to you. If you you the herbal route watch out for allergies. I'm allergic to all Nsaids and aspirin. That includes herbal ones.
I feel like I'm really missing out🤔.
Don't let the jumped up puke creator make you feel bad or dismissed. He's not getting hugs from me. !!!!!
It does sound like there is some thought or helpful suggestions in the advice given. It does sound like duloxetine and amitriptyline are not working well for you. So dropping one of them may allow you to get the benefit from the other.
When people feel zoned our or groggy etc on amitriptyline they can sometimes benefit from taking it earlier the night before. For a 10pm bedtime I have heard people taking it between 6 and 10pm.
Fibro does not have inflammation so taking NSAIDs like brufen or naproxen are inviting stomach issues for something where part of it will not be useful. But some swear by naproxen.
To be honest I would engaging with the doctor but suggesting one change at a time. Sometimes taking a medication away will be the way to benefit your health rather than adding another on. Trying to see if it will help could be worthwhile.
My thoughts too Des, I got the impression the GP was fully engaged especially with the medication.
I would have thought any GP would consider a change or removal of meds if they are not helping or maybe making things worse.
I also was wondering why the GP had given a med for an inflammatory issue in the first place when fibro does not prodce inflammation. Again imo a good shout to remove it.
Thank you you're very kind. For me the one thing about been able to share a concern is the amount of feed back we get.
Like fibro, we all suffer in different ways. The same way we all look at a problem from a different perspective. Not saying I'm right your wrong we just see things differently.
Still not well. But thank you for asking. I hope your doing ok 😊
I’m on week three of a nasty virus that floored me initially, but with children & a home to be responsible for, we have to muddle through & find a way don’t we.
Hi DoubleMalibu, I think I've had the same virus as you. Do you have a cough with it? I felt like I had a ton weight on my chest and have been so weak and exhausted. My doctor says its my heart and I have an urgent referral to the hospital. But I don't know, I think it's this life sucking illness. Do you have this symptom too.
A friend of mine has had it for 6 weeks. Take care, please get as much rest as you can and lots of fluids xx 🤗
So sorry to hear you’re suffering Elaine & especially if your Dr is saying your heart is a problem, I hope your urgent referral comes through asap.
This virus came out of nowhere, killer headache, high temp, sore throat & shivers etc, but no snuffles like you’d get with flu, but the body aches were insane, including fingers etc, felt poisoned. Even touching metal door handles made me shiver as temperature was high. Had no taste or smell for 2wks solid, Dr now thinks it’s all lingering still because it has left us(youngest son has it too!)with sinus infection. So 2nd lot of antibiotics now. We have a very dry cough.
We are so tired with it.
Do you have a virus & a heart problem?
Hope u get some relief soon & you’re able to rest too😊
Yes, seems like the same virus. It doesn't want to let go. I just wondered if instead of heart problems it's another symptom of this virus. Or, if there is a problem with my heart, if it was caused by the virus attacking my heart. But we'll see. I'm easily exhausted and weak.
Thank you for your reply DoubleMalibu. I really hope that you and your son get well soon. It's challenging enough dealing with fibro.
Naproxen is very common for fibro. Nsaids have the pain killing element and the inflammation element. So the first can be beneficial without the second. If it works then great.
I had inflammation and pain that traveled round all my joints causing inflammations and after various physio sessions for each ailment over the last 10 yrs and blood tests showing inflammation markers I had steroids for 2 yrs & they cause their own problems, but I never had any pain at all until I had to come down off them , while on those I was on naproxen & still do take that , I had a full hysterectomy when I was only 38 and have osteopenia and arthritis, so do take alendronic acid once a week and prescription vitamin D twice a day , with all that I think that’s caused the inflammation in joints , fibromyalgia is just a little extra!!
My thoughts for you to take or leave. If you are like me and like something to chew over you might enjoy..
Oh dear, while you were telling about your pain, your GP was reading through your long list of seemingly useless meds and getting a conscience, wasn't he (or she)?. That's a lot of meds for this continuing level of pain!! Eek! What if the meds are part of the problem?
Huge bummer with pain meds that they can work reasonably for a while, but while they are working we should be addressing the cause of the pain?
Instead most of us say, Great! Finally, I can carry on earning a little crust or caring for my family and all that important stuff, instead of doing the completely non essential LOOKING AFTER OURSELVES. And figuring what went wrong. And it's hardly surprising because that is what our world expects us to do. Pressures us even? Nobody tends to care that we are living our best life so long as we are doing what they require of us.
Pain meds work in the short term. Long term pain isn't normal and so long term meds shouldn't be needed. For those of us that do suffer long term pain, this leaves us in a hole. We can't keep upping the doses without doing serious damage, and we can't keep adding more meds either, without sooner or later coming a cropper. Bearing in mind the reason for ongoing pain is a warning of something needing attention, if the pain is still there, we must keep digging for answers.
Drs eventually exhaust their job of checking us over and so, most of us, in the end have to find ways of manging, coping and healing ourselves; Sort of? Remember, I'm mainly discussing fibro, not how you have broken all your bones, are out of alignment and have arthritis and every darn thing? I'm more tackling the average stuck fibro that looks to be complaining about nothing. Really tough stuff!
If you keep pushing, you can probably find a GP willing to fill you so ratting full of meds you can end up damaged, or certifiable; Maybe both? I say this from a place of I've been there? And some places you maybe can't get back from?
I don't need to draw a diagram to show what happens when meds mess with your bonce. You all have imaginations. And it's pretty impossible when you are medicated too high, to get your GP to take you seriously. Really it ticks me off how Drs put us on meds and then once we are, they proceed to tell us how we are bonkers? (not just bonkers on meds!) Also, it's not unusual for new physical symptoms to be Meds related and your GP is too busy to make the connection?
And so, we need to find how to help ourselves; connect with our selves again. Take time to figure what our body and soul is calling for? There is usually something?
Often times it's asking for you to stop distracting yourself with BUSY and listen to your heart. If you hate your job or your life, then take action before your body decides for you. If you like to be creative, but don't have time, your body may just feel 'what's the point? I do the boring stuff and then I don't get to play?'
Sometimes what your bod is saying is hiding under so many layers it take old Sherlock himself to figure you out; Or Google and all that good stuff?
Sometimes you need to go back to an old injury, long forgotten, which has become stuck on account of the trauma that accompanied it. Google how to let go, if you suspect this. You can forgive and let go of the past with amazing results. Gotta be brave though. and tenacious.
You might be like me and when you uncover your stuff, you will think, Blimey, I'd never have thought of looking there!! And also, expect to discover layer after layer, esp if you've suffered for a long time. Achieving baby steps forward when you generally get nowhere, makes a big difference.
Other people seldom hold our answers, but some can point us in the general direction, so we can find our own way. It's kind what we are doing really in life anyway. We are here to live our lives our way (doing no harm to others, of course). It's too easy to forget that as folks pull and push us, well meaning, this way and that.
I hope you find something here or elsewhere that sets you on your path to true healing.
Keep on going - Remember we know more than the Doctors & Rheumatologists . We are the Pro's because of the years we have suffered - not them - I would stick with the Amtriptyline on a low dose if you have to take it every night - 20/30 Mgs - If there comes a day when you can take nothing that will show that there is not much difference in your illness off or on medication , I have been ill for 30 years and this illness is a sleep disorder and hidden virus like ME, { CFS } combined - Pain did not stop me running 3 miles when i was a young man - Fatigue did - I am pretty sure if they cured our sleep disorder the pain and other symptoms will decrease , All the best, X
Poking my nose in here wondering if I can help? Please ignore if this is intrusive.
Can I ask have you ever looked at why you got your sleep disorder? I found shrinks and quacks hopeless in this regard.
I needed someone to ask me two questions. And to probably keep asking?
Are you afraid to sleep?
Why?
If you can figure those answers, you can ask the question when did this start? When did my Fibro kick in? Become noticeable as a thing? 2yrs after is a good timescale?
You will likely have really good reasons, that have little or nothing to do with 'Just being an anxious sort' and much more to do with your developing survival skills to see you through a difficult time? Sleep deprivation makes people anxious. It is a symptom and not the cause of insomnia; In my opinion!
I'm convinced Mums esp with sick kids or husbands get prone to fibro on account of broken sleep. They learn to sleep one ear cocked. Wake them selves up to check or listen til it's second nature; Unhealthy!
There are a myriad of reasons you could have developed insomnia and learning yours could help you process and hopefully let go. The sooner we figure what's triggered fibro the less damage we do to our bodies and the better chance of meaningful symptom reduction.
Serotonin regulates pain , mood and sleep - Fibro sufferers Serotonin levels are low - hence the antidepressants to counter act -I have done research 3 times for Hope hospital in Manchester, The Rheumatoloist there told me Fibro sufferers brains are always in high alert during '' Stage 4 sleep '' and we just wake up - Think of falling asleep in a chair then you have a sudden jolt that wakes you up - This is how he described it - Poor sleep and fatigue is the one that has shut our bodies down - not pain - If my sleep and fatigue was cured today and all I had was upper body aches and pain I would be running miles again in the space of a few months - I am pretty certain of that - Thanks
That’s really interesting, I am quite anxious although my face would never show it , I am definitely an over thinker!! This makes sleep much harder if I’m anxious
We participated in a large advisory panel with a pharma company to give them some help about fibromyalgia. One of topics was agreeing on the top 10 symptoms or so which was fairly easy to get a consensus.
Then it was the task to put them in order. This was anything but easy and there was a significant variance in opinions. Some put Fatigue at the very top of their list and pain about middle with others putting them the other way around. Pain was always in the upper range but fatigue was often at the bottom.
There is a continuing conversation about the vicious cycle of pain > fatigue > cognitive and that they feed off each other and if we sort one it will improve others. This is at the centre of most treatment regimes at present.
But what I am getting at is that there is no simple answer and for some if the pain is handled then sleep will come but for others it may be the other way around. So there s not a one size fits all and no simple answer. And it may be fairer to say that serotonin may modulate pain, mood and sleep.
Great reply, its like someone saying to a person carrying a bit of extra weight. Lose the weight and the back /knee pain will go. Just not true for everyone.
There is a lot of healthy weighted people out there with back and knee pain too.
I myself have never had a sleep problem yet my body pain is off the scale. Been able to sleep right through the night does not help me.
Like we know we are all different. And surely our brain and body processes everything differently too. So in my case getting a good night sleep is definitely not the answer to my pain /fibro problems if only it was.
The only thing I would say. Maybe its a case of not how long I sleep but am I getting the right restorative kind of sleep. Is the brain not switching off completely while when asleep🤷♀️
I had the same problem with my doctors but then surgery closed got moved and 12 years finally got confirmed fibromyalgia hallelujah about time someone listened it was actually a younger doctor also turns I've got ADHD had it all my life all my medication was changed as well I'm now on trazadone and pregablin. Try a younger doctor if possible
Sorry to hear this but fibro can be really hard to cope with. I use to take all sorts of drugs for not only fibro but migraines etc. Now all I take is paracetamol/codiene 3 times a day as needed. Amitriptyline was/is prescribed but I rarely take it as it tends to make me dopey and constipated. Unfortunately there is no cure for fibro and often doctors just have to ‘experiment’. Some believe tgat a simple painkiller like paracetamol is best but others will prescribe powerful painkillers. I was on morphine injection and oral morph at one stage but it never really helped so I stopped it. Sometimes my pain is so bad I just have to rest up and I hate it as I love life. My husband understands as he suffers from fibro so he tries to help as he can. `i stood up to my doctor in the end. I have compression fractures in my spine and tgat causes me a lot of pain. I;m still waiting to go back to the osteoporosis clinic. My doctor write on tge 24th November but not heard a dickey bird from the clinic.
Fibro pain is better treated more simply and you will have to stand up to your doctor re your painkiller at least. Be polite of course.
Hi Applespearspeaches, I think you have change doctor or GP because if your doctor was good he would tell you not to take duloxetine and amitriptyline at the same time. You can also find it in the package leaflet of duloxetine.
Ah yes, another one that reads the instructions! I had a great combo prescribed once. I wasn't feeling so good on it so I read further down the leaflet. My happy combo said could lead to the patient stopping breathing, and that could... Result in D3ath!
Yay for me being being popular patient of the week!
At the time, I did think D9ing in my sleep wouldn't be so bad. Turned out before I got to that stage, it was really really bad.
Doctors are busy, often times we irritate the heck out of them, before they write the script, and so unconsciously or not they can really hurt their patients. Shame on us patients if we don't keep an eye to protect our own selves!
I had a great friend once who when I was struggling with a task would roll his eyes and say helpfully Could you just, one time RTFM! before you start?? He left me to work it out. Good advice!
desquinnPartnerVolunteerFMAUK Trustee• in reply toAl10
The leaflets are talking about the risks not the eventualities. You may be the 1 in a 100,000 but its much more likely that you would not be.
There is an old parody about Dihydrogen monoxide and that it can cause suffocation, is the main component in acid rain and also present in cancer cells. These are all true statements but when you realise it is water they are talking about these risks are put into context.
So definitely RTFM, appreciate the risk and if some of the mentioned symptoms appear then bring it to the GPs attention.
You are of course quite right. And we humans can be extremely suggestable (placebo anyone?), however, I guess I have too much experience of being the one in 100,000? (what are the odds of that?) And I know other Fibros and ME bods who have been similar.
Also, regarding the busy GP comment, I have, what used to be those red print warnings, on my notes? Regardless. it didn't stop my GP prescribing. When I asked was there really no alternative, (like he wouldn't take the risk prescribing if there was?) he was most embarrassed and decided I was a twit.
What I have through experience discovered, is that people who should know stuff, don't always; My nice surgery (responding to an on-high directive) stopped prescribing (no warning) my (expensive but suitable) meds and changed it for something they later assured me was the same but cheaper. I took it back (to be destroyed! Because it cant be used once it's been out of the pharmacy?) and then we had quite a conversation about it, where I had to tell them ever so politely (because I am never rude) to please RTFM?
Even then, despite the ingredients differing, they swore blind, it was the same, until I explained the different instruction leaflets and the reason the instructions were different? By the time I was finished, they were very cross but had to admit that I was right.
Most people wouldn't challenge the professionals. Assuming maybe they have super human encyclopaedic knowledge about everything? And it is SOOOO embarrassing! If I hadn't learned to advocate for myself, that money saving wheeze would have cost my health dearly. I don't mean to raise anxiety in people, just I do feel blind trust has not served me, and others like me well. Also, I do think us Fibro's taking responsibility for ourselves and taking an active role in our healing journey can actually be a good thing.
Many of us have spent too long putting others first, being 'nice', and anxious to avoid conflict. In doing so we deny our experience and how we feel, and it's not honest. Our bodies tend to react to even our well intended inauthenticity with confusion and ultimately discomfort and disease.
I hope my explanation helps in understanding my comment.
You're so right. Like you I'm the 1 in 4 million who has the side effects so badly. For example Gabapentin turned me into a Celiac and began giving me pain in my kidneys. Many GPs, NHS111, and even A&E wouldn't believe me, whilst I had around 25 visits to A&E. The GPs wouldn't test for Gluten issues either. The useless lying NHS website lied about it. So, as usual I put USA, then Canada, then Australia after the dosage & name & bingo I found numerous study papers stating exactly what I tried saying.
I was referred to the Pain Clinic as I was trying the GPs patience as he stated, who listened, researched and lambasted the Gp surgery, emailed A&E and NHS111 for not listening or taking my evidence.
The pain clinic reduced the Gabapentin and hey bingo, I could eat anything and the pains went from my kidneys. 😡 This took around 11 months.
The NHS website also lies about Blepharitis too ( and all they have noted on their site most likeky). On many forgein websites, as stated above, they state you can go blind. I did so many times that I now see a specialist consultant. Also found out I have Cataracts & in the UK the Optician isn't obliged to inform you (the patient), until you struggle with eyesight, acute pain, or struggle to open and close your eyes 😡
So like you, I try to know about my medication, contraindications, etc. All the best 😍
Commenting from afar can be a challenge and I am sure the doctor is aware of serotonin syndrome. Using some meds like these two but also tramadol and many others can increase the risk of serotonin syndrome. It does sound from the OPs post that they have been on both drugs for a while so SS is very unlikely.
Also they also suggested stopping one of these two drugs.
I think the doctor should tell the patient about it before prescription and look into it if he prescribes it to patient. Also us too have to always read leaflet before starting medications, so we would know about side effects and when others things happen.
yes same here as soon as I was put on duloxetine my dr took me straight of amitriptyline as you cannot be on the two at the same time I think you really need to get a new dr asap
That's fine and may have been for your circumstances. But if you read research studies, clinical guidance, or the reports on here from the many people talking not it instead the other needs that can cause SS you will see in practice they are given together. But you doctor should monitor it especially within early prescribing.
The head of it medical advisory board is a senior lecturer in pharmacology and he has also spoken about them being prescribed together.
Sorry to read of your experience with your doctor☹️the saying goes if the shoe was on the other foot(if people lived with all this they might have abit more empathy, going too work as well,you are a real trooper xx
Gps think it's a mental health issue, so don't help 😡 They know it's true as specialist consultants and professors see us at Rheumatology about it. And there's a plethora of information, evidence, and advice from around the world online, on YouTube, Tiktok, Facebook, Instagram, etc. Also numerous support groups online, in communities, etc. Call back your surgery and say you'd rather see a rheumatologist to discuss it. Or ask for a referral with your local pain clinic to let them deal with your medication.
Your Gp can not take you off them as its dangerous to do so, especially if you live by yourself. Theur duty of care is to plan it with you, call you at least once weekly to see if any changes need doing or if you need to be seen in the Gp surgery, sent to a walk in clinic, to A&E, or need an ambulance. Thats how serious it is as youre taking some serious stuff. How dare they do that to you? 😡
If you're scared write it down then call, or you can go on their website and write an email to them about it and how you feel. You can also call NHS111 if you're in the UK.
The least they could do is offer you CBT (& should do. Its Cognitive Behavioural Therapy), to go along with the reduction/ withdrawal as that's what should be going on, too. Please call them tomorrow morning.
Please let us know how you get on as we're all here to support each other. All the best 😍
Hi there, just a thought, I take duloxetine on a morning instead of at night and i find it's better that way, I'm not as zonked and I tend to have a decent sleep (helped by the mirtazapine) try it and see, good luck x
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Coming off Duloxetine, trialling Venlafaxine 
Duloxetine?
Recent Fibro “diagnosis”
Painfull feet
