Hi again! This morning I posted regarding a medication I found on google which isn’t prescribed in UK! Good old Google 🤣
So I’m currently taking 2700mg of Gabapentin, Tramadol, Naproxen & Baclofen…. & I’m still suffering! All these meds, only just take the edge off, I don’t want to take this cocktail for just slight relief! So I’m looking for advise from fellow Fibro sufferers!
What medication do you take? & does it help with your daily life?
Hopefully I can’t get back on track & try to enjoy life again 😢 x
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JoLouise88
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Hi Princess Noo, so I actually did trial Duloxetine about a year ago, I was so poorly for 3 weeks, the dr took me off it. But hearing so much good people find in this, I’m wondering whether I should attempt to trial again & just push through the 1st 6 weeks?
How come you came off tramadol do you mind me asking? That seems to be the most reliable thing out of all I take?
I tried many things, nothing helped enough to put up with the side effects. I use exercise now, wish I started earlier, it's changed my life for the better.Gabapentin and Pregablin made me put on weight and Naproxen can be very bad for your stomach. My friend has permanent damage to her stomach because of Naproxen. I am prescribed it to take along with Triptans for my chronic migraines, but have to take it with a Protein Pump Inhibitor and am very cautious with its use.
Hi there Cat00, thankyou for your reply. So I’d love love love to use exercise for relief, but literally a ten minute walk leads to days & days of agony. I force myself to always move, but it’s just a horrific way to live! But I can’t sit around just staring into my phone or tv so have to keep my mind blank & grit my teeth until I can finally go to bed that night! I’d love to know more how exercise can help! I’m happy to push through & try anything for my own sanity at this point in time x
The main thing is consistency. It doesn't matter how little it is just that you do it regularly. When I started I would do tiny amounts 6 days a week but now I'm doing much higher weights and less cardio I do it 4 times a week because I've reached the point of over training.The thing with fibromyalgia is you have to start small and slow, my theory was I'm in pain anyway I might aswell have pain for a positive reason.
I get very stiff in the days I'm not at the gym and hobble around like an old lady but knowing why I'm like that makes me feel better about it. Also I get a lot of pain from sitting for long periods of time anyway. I have chronic migraines and sometimes have to sit and it kills me.
I have migraines over 50% of the time and the gym helps them too so I have extra motivation there too. Its important to put your ego aside when it come to fibromyalgia and exercise, start silly small and gradually build up a tolerance. Don't take pain the next day as a sign you shouldn't being it, obviously within reason. Swimming is a good place to start if you can also.
So just would like to say, for the 1st time since suffering. Your words ‘I’m in pain anyway, may aswell be in pain from something positive’ has really hit home. I’ve really taken that quote on board! I don’t feel any better pushing g myself to do something I wouldn’t normally do, but I feel the same so I actually really needed to hear that & will continue with this quote in my mind daily.
Just as you say about migraines, I suffered terrible, in fact migraines where the 1st sign of something being seriously wrong, then ended up in hospital multiple time, oh it was relentless. So I 1st off started with topirimate. This med cut the migraines in half. Then fast forward as my body pain got worse, I started taking gabapentin which has totally eliminated the migraines. Life is hard enough living in pain, whether that be head, legs, arms. Migraines were the absolute bug bear of my life.
You have helped with your advice no end, so just thought I’d pass on my story to hopefully help someone!
Oh fantastic! Migraines were also my first sign of trouble, I was 5 years old when they started. I also had Gabapentin, and Pregablin, mainly I just got fatter on them. Although I was on Gabapentin for a while as it was more effective than the various others. I stopped all fibro meds when I had children and then never went back on as I realised I didn't feel that different without them. It was actually the "I'm in pain anyway theory" that led to me finally having kids. We'd delayed for years, hoping I would get better, and then I just decided " I've lost my career to chronic pain I don't want to loose a family too and I'm in pain anyway!" Also being alone and in pain is often easier than having demanding little ones around you but its lonely, so no regrets on that front 😄
Unfortunately, for many people if medications help they do only take the edge off.
I'm on Pregabalin, Mirtazapine, tramadol and paracetamol for my fibromyalgia - they take the edge off enough to allow me to function and live my life including work part time, but I do also use a lot of self management techniques to manage symptoms.
Anti depressants such as amitriptiline or duloxetine are often prescribed for fibromyalgia, so that is maybe an option to try
Hi there Hazel, Thankyou for replying. Yes seems I may be trying to find a miracle pill in my desperation, but I think actually I need to learn how to function living like this.
I have tried amitriptiline & duloxetine, unfortunately they made me tired & poorly so I haven’t managed to trial them long term, although Duloxetine seems to be a lot of peoples choice, so maybe worth pushing through the sickness to see if it eventually helps!
Could I ask what Mirtazapine is please? I found a few drugs on google which I was going to put forward to my dr, to then find out, they are not used in UK 🙄
Mirtazipine is an antidepressant, I think similar to duloxetine but I haven't tried duloxetine so can't comment on that. The main side effects of mirtazipine are fatigue (like, you take the tablet and half an hour later you're asleep, and struggle to wake up 12 hours later - this does eventually get better) and weight gain, it really increases your appetite. I take it currently for depression but have a doctor's appointment in a few weeks to come off it as 15mg isn't doing anything and 30mg makes me a zombie all the next day, which I can't have as have a three month old baby to look after. I've not noticed it have any effect on fibro pain, but I've only been on it three months and have been ill for other reasons (MRSA, sepsis, then virus after virus) all of that time.
Well it sounds like your in a bit of a catch 22 bless you, Hopefully the dr finds something that works for you. I’m finding it hard parenting & my children are 13 & 16. Definitely not worth taking if it makes you groggy & tired. Maybe I won’t look into this too much then? I’m mainly looking for a Miracle as such I think, just something that will make me feel brand new, I’m not a person to sit around putting my feet up, so I’m mentally struggling with pushing through each day! I do hope you find something that works for you x
Yeah, I think that magic pill just doesn’t exist or we’d all be on it already. I was coping ok on a mix of ADHD meds (to wake up) and mood stabilisers (to sleep and stop the ups and downs) and then along came little miss surprise and I had to go off both, and due to breastfeeding I’m scared to attempt the ADHD meds which at least allowed me to function and had the added benefit of increasing the efficacy of my opioid painkiller so I needed less of those too - but the baby already won’t go to sleep til 11pm so I am not taking anything that might make her even more wakeful lol!
I just want a stronger painkiller so I can function in the day - and a sleeping pill that puts me to sleep but not so comatose that I can’t wake up for night feeds or in the morning. Morphine and temazepam would do the job perfectly - but no. Can’t haz. Strong drugs bad. Just try unknown pill after unknown pill, they don’t even know how these tablets work or what they actually do to your brain chemistry short or long term but hand them out like smarties anyway, when tried and tested stuff is a no no because you might get addicted!
Not sure any of the ladies here will want to recommend pain meds for a breast feeding mum. Can you cut the feeding short so you can restart your previous meds? ADHD meds may help you cope better all round which would reduce anxiety and pain maybe? Without your meds maybe things feel a bit or a lot more overwhelming than they need to be? Just a thought to mull over with your GP?
You have done the important immune boosting feeding and bonding so cutting the process short isn't so bad? (not what you want probably, but being pragmatic?) Do you have a nice GP or health visitor sort who could chew this over with you? Or talk to Mums who have been through the whole breastfeeding weaning situation.
No Mum needs to be a martyr for her children. Being a good Mum, is of course, always thinking about what's best for your loved ones, but you must balance that with looking after your own well being too. You can't afford to get sick yourself now, because you are needed.
Think about how to be a happy fit mum having fun making a lovely family. This is such a precious time, don't let your health or any fixed ideas on how you HAVE to be as the perfect mother spoil it. Babies thrive when their mums are happy and content. I hope you can find a solution soon.
Yeah, any strong medication is obviously out while I’m feeding her, it’d just be nice to know that it’d be an option once I stop - knowing would make it easier to cope. But apart from one locum, all the GPs at my surgery are the ‘take some ibuprofen and go for a walk’ type. Happy to hand out SSRIs but as soon as that fails (I’ve tried every one, at various doses, they don’t work for me) that’s the end of their suggestions. I had a phone appointment a couple of years ago where I actually told my GP that has known me for 15 years and watched me struggle all this time, that if there’s nothing else they can do then I am not going to carry on living. She in all seriousness suggested I should go for a walk (I can walk about 500m on a good day) or get a hobby (ADHD - got hobbies coming out of my ears). At this point I was trying to get the ADHD diagnosis and they’d refused to even put me on the waiting list for an assessment. I hung the phone up, didn’t pick up when she phoned back and she sent the police to do a welfare check - and STILL didn’t do anything, not even refer me to CMHT.
After much kicking and screaming, I got to see a psychiatrist but he’s now left, and my psychiatric nurse who should have done at least two visits by now after the baby is ‘on leave’ and they didn’t even bother to let me know.
I plan to ask for a referral to the pain clinic which will obviously take some time, and see what they say.
I’ve weighed up stopping breastfeeding to go back on my medication but she gets a sore stomach with formula which is then really hard to deal with, and she’s feeding through the night so bf is just so much easier for now than making (and washing) bottles through the night. I stopped at three months with my second and bitterly regretted it as it was so much work bottlefeeding. I can go another few months until she’s not taking so much milk any more. I can’t take the sleeping pills that balance out the stimulant medication anyway while she’s still regularly up through the night because they knock me out, so I’d then be sleeping even less!
Fibro is a tough diagnosis, but for a mum, needing lots of energy for her family, it's tougher still. You need to be up to par to manage the care needs whenever they arise. Very tricky. Tricky managing guilt when you let them down.
There aren't really any perfect solutions to fibro. Until researchers understand the condition better, they seem to be flailing around in the dark.
That said, we now know ADHD and Fibro are common bedfellows. Why do we think that might be? Does the age at diagnosis help determine whether Fibro becomes a factor? Is anyone looking into this?
You will know the effect ADHD has had on your life and whether you think it has been a factor on your Fibro. My feeling is, if we address the issues likely driving the fibro early enough, we might be able to see a resolution of the symptoms. The longer we leave our healing, the more likely permanent damage is done making any recovery harder.
Perhaps this is something you might like to research for yourself? To be honest, Drs don't have time to think why each one of us got fibro and sadly, I do think this is what is required. We are all different with our different stories.
I know alternate wired folks have often had quite a difficult time trying to fit into our 'Normie' world. Each trying to do their best yet failing. Is it fun wearing those naughty, irritating lazy difficult, behaviour labels? Failing when you know you are not stupid etc? Worse, how many blame themselves too? Adding to the hurt piled on.
I'm not suggesting fibro pain isn't real, just there is a link between unrelieved emotional distress and physical pain getting stuck in the body. Please don't try the thinking yourself better route and then get upset when you turn out to be rubbish at it. That notion should never have been suggested. It is too simplistic and ultimately cruel.
I think when there are no answers, Drs can't help wanting to blame the patient because it is too painful to blame themselves.
I'm sorry I don't have solutions but maybe have something to chew on is a help?
I can't suggest meds because like many fibros I've seen and experienced too many downsides, with little or no benefit. If you choose that route make sure your responsible loved ones around you are primed to look out for when you are going off your chump, not yourself etc, and that you are prepared to trust their judgement. Badly medicated in charge of your own life can be catastrophic enough, but with kids in the mix too, this is not something you are wanting! Make sure your people are kept in the loop at all times regarding your meds.
Interesting thoughts. I did a dig on ADHD when I was first diagnosed and my completely unprofessional and not in the slightest informed (I’m going on what Dr Google says) opinion is that at its most basic, ADHD is a dopamine deficiency/dysfunction - either the brain doesn’t produce it properly or doesn’t process, maybe burns through it too fast or too slow - and while we think of dopamine as just a feel good chemical, it actually plays a role in the regulation of a huge amount of the body’s processes - things you’d never associate with ADHD as we usually think of it, such as IBS and chronic pain. The inattention, scatter-brain, too many thoughts all at once, jumping from one interest to another, over-eating, drinking too much, drugs, gambling, thrill-seeking, any self-medicating method people end up with all boils down to searching for that next dopamine hit to keep going. When there’s dopamine, stuff gets done. When there isn’t, the boredom is so deep, dark and all consuming that I personally think of it as depression. So when the doctor pushes anti-d pills, they’re trying to treat the wrong thing, and even worse, some of the drugs are dopamine suppressors (mood stabilisers for example) so can make it worse, not that you’d notice at the time because you’re not really feeling anything. Sometimes just being ‘stable’ and not having the wild swings is a relief, and I’ve needed that the last couple of years but it certainly suppresses all the good bits too - creativity, the ability to enjoy small things.
Wouldn’t surprise me one bit if the dopamine dysregulation also contributes to fibro. And obviously being in pain does not help to produce dopamine and takes away the want to do anything that might help, like I always found solace in knitting and crochet, but I have a lot of pain in my hands which hinders that. Then the impulsiveness translates the desire to play with yarn into buying ridiculous amounts of it, despite the fact I have a yarn business so have a warehouse full, plus all the equipment to spin and dye anything my heart desires - but that involves work, lifting, and it’s not new so the rush isn’t the same.
Definitely identify heavily with the ‘laziness, useless’ then beating yourself up and feeling guilty. I need a lot of help to care for my baby, and it kills me that I can’t cope even one day on my own with her. Thankfully the other four are older (13, 12, 11 and almost 8) so they can be put to work helping with things and are at least mostly self-sufficient.
I now have a psych appointment in a couple of weeks to discuss medications and such. Just need to also get through to GP for a pain clinic referral. The likes of duloxitine scare me, I would so prefer to just fix the immediate problem with short-acting meds and be myself the rest of the time.
So just took a read through your messages. I feel first and foremost any mum need to look after themselves 1st! Take that on board, & I think bottle feeding would take hell a lot of stress off you! With bottle feeding you can look after yourself, I defo think pain meds are needed for you to be able to function. Bottle feeding means your pain is being relieved slightly & your family can take over feeds a bit more. Something to think about.
Also I believe you need new drs, they don’t sound helpful atall, and we know our bodies & we know when we need extra help! We wouldn’t be asking otherwise. One dr once told me to have some ibuprofen & go for a slow jog? My reaction didn’t bow well to that response & immediately changed drs & now I have a fab care team who actually care, they ring me once a month etc etc.
I just feel that I’m taking so many meds, yet I’m still crippling around like a 60 year old.
I believe from other responses that exercise is the way forward, but unfortunately it’s getting to that stage where you are comfortable you can push you body. I’ve actually booked myself & son in for 2 1/2 hour bookings in the tennis courts this week. Just to get myself fitter & grit my teeth through the hard times. My kids need me & I need to build memories with them, not memories of mum complaining!
You know your body & you need to do what’s right for you, not what’s right for you family, or your dr but for you. Once you put yourself 1st then family life will fall into place perfectly & it won’t be a chore having your family & home, but you will be able to enjoy your self, rather then hate yourself for not feeling good enough. This disease is just so sad & is taking us all down. My dad was the only person who cared about me & this whole diagnosis. He called me everyday to see how I was & took time to understand the diagnosis. He once said; you were given this card because you are stronger than you think & you can take this head on’ I still have days where I think I can’t, but then when I seriously sit & think about that, I want to prove this shitty disease wrong. We all can do this!
Hi, I am newly diagnosed with fibromyalgia. I was diagnosed with polymyalgia rheumatica in 2018. I am now on a low dose of prednisolone 4.5mg per day. I have read a book called The Fibro Manual by Ginervra Liptan an American doctor. I don't take any medication for pain except a paracetamol. I do wonder how much pain I will be in when I no longer take the steroids.
When I first got diagnosed with fibromyalgia, I begged in fact pleaded for steroids, as I knew this was the way forward. But they refused point blank! I feel steroids would help this whole community through the pain we are suffering daily, but still no new ‘drug’ along these lines have been trialled! Hopefully you can find another medication or way forward to help when it comes to ending the steroids! & hopefully you may be lucky and only have the mild pain. I really do have hope that something is found to help us all! X
PMR is inflammation hence the need for steroids- fibro is not inflammation based therefore it follows steroids will not help unfortunately. It’s really hard when you have both to work out which pain related to which illness. Do hope you find some relief soon. Fibro wise I find my trusty old biofreeze gel works or Epsom salt baths. Heat pads too are great. Some get relief with hydrotherapy or gentle exercise like tai chi or yoga.
Umm they say fibromyalgia is not inflammatory, yet also state that it causes inflammation in the brain & throughout the body, so I’m still begging to differ. I always know lots of people who are prescribed prednisone for flares lasting longer than 10 days. You can even google all of this information and I’m sure it will confirm what I say, so again I still believe steroids are the way forward. There are also links between type 2 diabetes & fibromyalgia. Something to do with insulin. I haven’t read into it too much, but again drs are not willing to trail the meds. Seems there are so many it is it isn’t, it could help, it could not in Fibro, that whilst it’s being decided what the disease actually is, we are all suffering and pleading for help.
You may have opposite opinion but no inflammation markers are shown in blood tests. I can’t take prescription meds I just rely on diet and other methods. To each their own. Pred brings its own problems and not a drug to be taken lightly - ask any PMR sufferer.
Oh absolutely, It’s a difficult diagnosis & I’m not is disagreement atall, I’m literally just saying what I know & have heard of. To be totally honest, when I was 1st diagnosed I just wanted relieve. I wouldnt of thought about the possible side effects. As I speak today, I would care & it’s not something I would take lightly now. Hence I said when I was 1st diagnosed I pleaded for steroids. Today I have a different outlook. But even now, I don’t know anything about steroids or the side effects etc. Honestly, the only thing I now about steroids is a few friends have had them when they are in a flare & I assumed they would benefit Fibro. It’s not a drug I have looked into.
Could well be the case, I don’t know the in depths of their situation. I literally just put two & two together. The whole steroid thing is just what I’ve been told, from the day I got diagnosed to other friends experiences. It is all very interesting to learn more about though. So appreciate you explaining it all more to me. X
It may be worth you asking for a referral to one of the fibro clinics. I went to the one at Guys and St Thomas’ - found it very helpful. Even just being believed was a relief!
I have looked into these clinics before but kept on second thinking it. But the more good stories I hear the more I’m intrigued. I’ll take a look into it again! I’m open to any help & useful information!
I saw 4 different people - one stop shop. Psychologistsl. Physio, rheumatologist and one other- sorry can’t remember who. They discussed everything with me and put together a plan for GP to action. Had to fight to get the referral but it was worth it.
It’s draining isn’t it. I feel though that I’m trying to delve in to deep & getting abit obsessed with trying to find something. I have come across reports/podcasts to link diabetes type 2 to fibromyalgia something to do with insulin. I haven’t got through it all yet but I’m now intrigued with the reports. So what I’ve got out of it so far is Ozempic has provided 90% of relieve with the fibro sufferers on the current trial. But is it worth trying it? I think I may go through my dr before I make any rash decisions x
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