Hi is there anyone else on here who struggles to tolerate any medication for fibromyalgia because of side effects? I put on a huge amount of weight with amitriptyline, sweated buckets with duloxetine and had much worse fatigue with pregablin. I am currently going through a horrible tramadol withdrawal because I have had to stop it as it worsened my migraines and had started to give me nightmares.
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medication intolerance
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Sandra600
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hu, Sandra600 , yes I cannot tolerate any of them, I am currently taking nothing as my Cocodamol have been causing me problems, I say nothing, but I am using movealat cream. There is quite a few people on here that cannot tolerate the meds.
Thanks for replying, I’ll look into movealat cream. I attend a support group with about 30 people and they all seem to be on medication and are doing so much better than I am but we are all different I suppose.
Me too. I had to come off pregabalin as I put on about 2 stone and tested recently as pre-diabetic. Awful. I've now lost 7lbs since coming off it. Went from a size 10 to a 14 and looked like I was about to give birth. Then put on tramadol for 2 weeks - itched like hell and severe lower limb swelling. Now on attempt 3 - dulexotine. 2 weeks on this. So tired, it's untrue. I feel like a zombie. Next attempt will be amytriptaline. I mean what are we supposed to do. I will put up with the sedative effect of dulexotine but if I pile on the pounds again, I will have to have yet another re-think. I can't even spell anymore let alone remember what I watched on TV last night. From a very tired zombified Golly x
Amitryptiline was a nightmare for me for the same reasons - Norotryptiline no better
I had awful side effects for the first three weeks of duloxetine and then they just vanished and like a switch it started to work
can you slow
down the pace of the withdrawal by taking anything else - Naproxen withdrawal for
me was eased by the v occasional ibuprofen
Hope you feel
better soon this stuff is a rollercoaster x
Thanks it really is, I’m a bit wary of taking anything else as I don’t do well on most medication but if I don’t feel better soon I might have to speak to a GP, if I can get an appointment.
I stopped trying or taking any meds for fibromyalgia 9 years ago. None helped much with the pain, but I had side effects with all of them.
I think I will have to do the same.
It's not uncommon for fibromyalgia patients to not respond to medication, it used to be one of the criteria for diagnosis although no one seems to talk about that anymore so I don't know if that's changed....
I thought that too but everyone in my support group is on medication and doing quite well, many of them work and can go abroad on holiday and generally have an almost normal life which I definitely don’t.
Yes I wonder to what degree the fibro community are represented in these places, that is I think often there are a lot of people on this forum that represent the more extreme end of fibromyalgia and that's why they reach out in the virtual world, out of necessity.With a support group too you kind of have to be the kind of person who hasn't already lost faith in people to attend one, so that attracts a different fibro demographic.
I assume there are many people who suffer more mildly but they are not visible on these forums because they are coping without them.
My fibro doesn't respond to meds, not even morphine, but in a way we're dodging a bullet in the long term because there isn't a drug on earth that doesn't complicate the biological picture. I have chronic migraines which I do take meds for, over the years I've had 15 different treatments, none of them have come without a cost. The latest "groundbreaking" antibody injector for migraines I've taken for the last 2.5 years has really aggravated my IBS and possibly given me Bladder Pain Syndrome. Unmedicated I have migraine between 50% and 70 % of the time but I'd rather have that than this. I've been off the drug for 6 months now and currently still have really bad abdominal pain and migraine 70 % of the time. I've taken myself of the pill too because that can cause problems, less is more I guess!
Nothing helps pain more than our own intimate relationship with our pain, it's the only thing I'm currently working on, I don't really think there is anything else. Every 5ish years I get another chronic, incurable painfull condition, doctors can't help, it drives you mad pain.
Yes I think you’re right about the support group, I find it dispiriting because they seem to assume we are suffering to the same degree and don’t understand why I don’t do more. I am sorry to hear of your problems I too have had chronic migraine for about 15 years, I attend a migraine clinic and am now running out of things to try. Stopping the tramadol has actually helped the migraines to some degree and that is one of the reasons I want to stay off it. I also have ibs and bladder problems and meet the criteria for me/cfs.
Yeah I can only take painkillers 8 days a month for that reason, chronic migraines and painkillers dont mix sadly.
Oh dear we appear to be equally decrepit!
I've never been able to work, despite getting very ill trying to get my degree, it turns out it was all for nothing really. I've always felt such a failure bc when I was young I had so many ambitions but now I'm 46 I'm starting to come to terms with it at least 🙂
Yes it’s a shame, I’m older than you and did my degree as a mature student but became ill and like you wasn’t able to do anything with it.
Hi, yes meds aren’t wonderful but the benefits out way the side effects for me now. I am 900mg gabapentin, 300mg Venlafaxine, and cocodomal on top. I soak the bed through each night which is horrible even though I take 2 mg of HRT and I am slowly going up from 12, 14, and now 16 and I eat very little. I retain loads of water and I don’t think straight, going to have to give up work. But as I said the medication means I can get out the house on my crutches a few days a week. For me it’s minimising my pain which it does.
It’s a tough one isn’t it. Good luck.
I definitely need a plan to deal with weight gain from Amitriptyline and I have to be aware of every thing I put in my mouth and have low cal food on hand to deal with feelings of hunger.
Good luck I put 2 stone on on with amitriptyline and I was already overweight. I have lost it now and some more.
YassytinaFMA UK Volunteer
Sorry too read of the migraines, it does seem we go threw trial and error in finding something that helps or suits us for sure, I’ve been taking duloxtene for over 5 years now, I think I differently put on some weight but it seems too have levelled out, I do think some of us get side effects from meds , I get headaches in the morning then they tend too go off, I put that down too the duloxtene I take before bed time. I hope your withdrawal calms down , it sounds horrid for you xx
I can't use fibro meds either due to side effects and kidney disease. I have resigned myself to regular paracetamol with occasional Tramadol when things are really bad. My symptoms have got better but I am retired and able to rest and pace myself. Sorry I don't have anybreal answers for you but you aren't alone with this pro lem and I hope things improve.
Thanks I too am retired so I get plenty of rest x
Yap I can't take much due to sensitivities. I balanced pain with paracetamol and vimovo when bad and a tens machine. I got a gastric sleeve done in October it has made a huge difference to my mobility it hasn't and won't cure me but it's given me back a quality of life and I can move around and drive more freely then I could. Instead of having weeks and even months of a flare up I now only get a day or two if I am over doing things so I slow down and rest up for a day or two and it's gone again. You have no idea the relief it has brought me. I can even mess around dancing with my kids again which I hadn't done in an age. I am not saying that the sleeve is for everyone but just saying how it helped me when meds didn't work. I hope you find your solution it is an awful predicament to be in good luck 🤞 🙏
Yes me too! Amitriptyline made me gain weight and left me groggy all the time. Didn't help with pain so came off that after 3 months. I actually had withdrawal symptoms stopping it. Wish I had tapered. On Duloxetine now. Only 7 weeks in, not helping with pain either but sleeping better and not groggy and anxiety eased a little. Time will tell!
Good luck unfortunately nothing helped my pain either
Thanks you too! It's most frustrating isn't it. I'm seeing a pain consultant privately at the mo. He's attacking it from all sides. High dose vitamins, gut health, Duloxetine, daily yoga and walking. Only 7 weeks in. Got to do 3 months and see him again to review 🤷🤞 x
In the same boat, tried all the usual Fibro meds, none helped that much and side effects were generally awful. Funnily enough though I now take Venlafaxine for migraine prevention as I got diagnosed with vestibular migraines which cause vertigo and dizziness. I
Apart from a bit of increased sweating I've had no noticeable side effects, yet its in the same drugs class as Duloxetine which was a complete no no for me. I dont bother with Fibro meds now. I found exercise and a healthy diet really helped me and I take Low Dose Naltrexone on a private basis which has helped a lot. If the pain is bad I just take an otc painkiller. I was on slow release morphine for a number of years but it came with lots of issues and I came off it.
That’s interesting I was offered venlafaxine for migraine prevention but I turned it down because I was worried about side effects. I have also looked into low dose naltrexone in the past so when I feel a bit better that might be worth trying.
I tried 5 different anti migraine meds including propranolol, amytriptyline, nortriptyline etc. All horrible side effects before I tried the Venlafaxine. I was plesantly surprised it hasnt been far worse. I was expecting another failure but I've been on it for about 4.5 months now and its had minimal side effects.
I havent had a migraine since January. I'm not thrilled to be taking it but the 24/7 dizziness and balance issues were ruining my life and I have been better since starting it. My Neurologist has suggested taking it for a year then tapering off. So hopefully its not forever.
I’m glad it’s working for you x
Yes, I'm on only 20 mg of Nortriptyline and initially it gave me constant migraines and more arm pain at night. So aI started with 2.5 mg and built up over two months; but it was a horrible timeI hoped to get it off it at some point as I get hot flushes which aggravate my Rosacea and I'm on so many pills for various problems . I could take more to function better, but I couldn't cope with how it would affect me.
Sorry fingers, only on 10 mg Nortriptyline
Hi Sandra,
I too, like most in the replies have been tried on multiple things. Amitriptyline has been the best so far for me, but I believe that is also coming to the end of its usefulness now too.
I've been on Gabapentin, Pregabalin and Duloxetine so far and had horrendous reactions to all of them, with some sending my heart rate soaring to 150bpm at rest and no relief from pain. I also can't tolerate many antibiotics (Penicillin, Doxycycline, anything ending in -mycin) or even plain paracetamol and ibuprofen. I currently just take 4 co-codamol 30/500mg tablets and an Amitriptyline 50mg tablet daily, but my quality of life is crap. I barely leave the house and even moving around the house and doing just every day things are a struggle.
As others have said, we're all very different but I completely understand your frustration in not being able to find something that helps. It makes me feel weak, and a bit pointless honestly. So you're not alone at all in this. I really really hope you manage to find something that grants you a bit of relief
Gemima ❤️
Thank you Gemima I am sorry to hear your quality of life is so bad, I am the same I barely leave the house too and struggle with everytday things. My son is getting married in September and instead of looking forward to it I am worried sick about how I am going to get through it x
It really is a frustrating life isn't it. I find myself very angry at my body sometimes, and then chastise myself because it could be far worse.
I really sympathise with your worry regarding events. I was supposed to attend a Christening as Godmother on the weekend and in the end I couldn't attend because I couldn't walk. I went for my hair done on the Thursday, so I didn't look like a scruff at said Christening, ended up sitting in the same position for four hours (I'm still learning my limits 🫠) and then couldn't walk, sit or lie down on my back or left side properly for the next... well it's still going, I'm stuck on my right side in bed currently 😂. I was so worried about it and had prepared so much for it for a good month and when I didn't get to go it really upset me. Missing out on things is one of the worst things about Fibro.
Have you been offered Physiotherapy or none medicinal treatments at all by your GP? Like a swimming course of some kind? I'm sorry, whatever it's called is evading me right now. A friend of mine with Fibro found the swimming course really helpful. She wasn't diagnosed until she was 60+ unfortunately, so she'd suffered silently for many years before she was given any help and the swimming course was the first thing they suggested for her.
I'll pray to the universe for you to attend your son's wedding without incident. You're going to go, and it's going to be a wonderful day and you'll wonder why you worried so much 🙏
xx
Thank you so much I hope you are right, sorry you couldn’t go to the Christening x
yes, i have reacted to a lot of them, i had amytriptaline, had to stop because of side effects, swapped to nortriptaline, supposed to be on 70mg, can only tolerate 30mg which doesnt do a great deal, i have also tried duloxetine which caused a hard raised rash all up my left arm it looked like psriorsis (however you spell it), as soon as i stopped it the rash disappeared, but every time i had a shower for about a year there were bright red marks where the rash had been, this did eventually stop. i also had gabapentin, pregabalin, cocodamol, and problem and others, cant remember all of them, all caused side effects. i also have naproxin for my back, i was also sent to the pain management clinic where they gave me a lignocaine infusion (I DONT RECOMMEND THIS TO ANYBODY) for those who dont know what this is, it is a 'cocktail of very powerful painkilling drugs' it is supposed to last for between 6 - 9 months and they say that it may work, it might not work or it could make things worse, mine was the latter. they have to monitor your blood pressure whilst they give you this through a syringe driver, somebody has to sit with you and take it every 3 mins for the first 20 mins then every 5 mins for the rest of the hour it is supposed to take to give it to you , something obviously was going wrong as the nurse ran to fetch the consultant who came back with her immediately, he seemed very worried, this left me unable to even sit up for 5 weeks and after that for several weeks i didnt have the upper body strength to hold myself upright, it left me only being able to do 10 minutes a day of normal daily activity, this was in 2016, i managed to get this up to 2 hours a day by 2020, everybody knows what happened in 2020, because of the way i react to the medications i phoned my gp to ask that as i had fibromyalgia and chronic fatigue and as the long term effect of long covid was chronic fatigue should i have the vaccine as a small dose of covid was in the vaccine, he said that as i was ok with the flu jab, i should be ok with the covid one, how wrong was he!! the vaccine has left me only being able to now do 20 mins a day of normal daily activity. 2 years after the vaccine i am now waiting for an appointment for the long covid clinic, i have not had covid
Sorry you have gone through all that it sounds awful.
HI Sandra
I know the feeling only too well.. I find I'm intolerant or allergic to most medication not only for fibro. The only anti depressant that I will take now is imipramine, it's not a pain killer...but helps me sleep. the doctor offered me amitriptyline but when I read the side effects, I said no thanks. ibuprofen and paracetamol only... anything stronger just occasional use. I don't want to live my life on tablets which befuddles the brain and make me feel ill. I only take pain relief when it flares. or the odd headache. I'm conscious of what all the meds do to my stomach etc. It might be worth looking at one of the magnesiums..sorry can't remember which one is better.. and try increasing it in your diet.
Sorry I'm not much help. Take care x
hi yes tried such a lot over the years . I started on cbd oil. And co dydramal . .
Hi Sanda... magnesium is found naturally in food, it may be the fillers and binders they use in tablets... you might be able to find it without the rubbish. I use magnesium malate in powder form. it's fine, but all magnesiums when taken too much have a laxative effect.. suggest approach with caution. x
Hi Sandra
Sorry to hear that. One thing I would say about addictive prescription drugs generally, is that you should take a lot longer to gradually taper them off when withdrawing than GP’s often suggest.
This then minimises the effects and allows the body time to adjust.
Personally, despite the daily pain and fatigue have only tried amitriptyline but had to stop as I couldn’t tolerate it.
I shunned the pregabalin etc as they are anti- epilepsy drugs so not specific to fibromyalgia, and with the potential side effects don’t want to experiment.
I stress this is an individual choice and fully understand the desperation to try anything.
Fibromyalgia is an exhausting condition physically and mentally and largely invisible, so getting support and understanding of its challenges is in itself difficult.
Here at least there is no judgement only compassion, so accept a virtual hug and I hope you get off the tramadol in time.
Thank you so much, I tapered off them over 2 months but I think now maybe it was too fast. I would go back on them and taper more slowly but my migraines are quite a lot better since stopping.
I've been taking Methotrexate for 10 years approx which gave me horrendous stomach problems causing belching which would last for days. My consultant always said it was unrelated but I stopped taking it 6 months ago and stomach problems stopped. I now take Duluxetine which is working well so far and plenty of exercise.
Hope you find a good solution in your case!
I had the same problem with Amitryptilline too, took ages to get the weight down again afterwards.
TBH. I find that having not been able to get appointments with my GP a bit of a blessing really (I moved just as lockdown began), it's made me wean myself off all my meds. Nowadays I just take Paracetamol or Ibuprofen as and when I need some help, but even the need has waned as I have had to rely on myself.
Being retired takes a lot of the strain off, I have found. OK, I still have wrecked knees, and I'm starting to get Osteoarthritis in my hands, but with no workplace stress and nobody to please but myself and my son, things have eased where the pain of Fibro is concerned
Cheers, Midori
Yes it took me a long time to lose the weight too I have now lost about 3 and a half stone since my heaviest done in part by keeping my medications as low as possible and by having severe digestive problems so I am very restricted in what I can eat. I can’t take ibuprofen and I find paracetamol doesn’t help so I don’t usually take anything, I just use my tens machine. I too have oesteoarthritis in my hands and possibly knees so you have my sympathy.
I haven’t been able to work for a long time and am now retired, it is a big relief not having to work.l, best wishes Sandra
What an achievement well done😀xx
Thanks I still need to lose about another 2 stone but it’s proving difficult, I can’t really eat any less than I do as I’ve got chronic migraine so I have to eat regular meals. I’m not very active with the migraines, fibro, me/cfs and oesteoarthritis either xx
You’ve a lot going on , chronic migraine s must be awful for you☹️I have too wear a full face mask for sleep apnea so I do get a lot of headaches daily , I have cfs as well, sometimes I think why is it some people get dished with a lot and some breeze threw life okay xx
I know what you mean I’m having a terrible time with ibs at the moment too. It must be difficult having sleep apnea. I get very down with it all, it’s only my family that keep me going xx
I’m hoping too see my little grandboys for an hour today 😀I have a wonderful friend too who sends me lovely txts she is taking me too ENT as I’m proberly going too have that little scope put up threw my nose and down my throat(I’ve had it before so this time doc has given me some diazepam too try calm me down, tonsils keep getting infected so there always seem too be something going on for us dosent it, I am glad you have a good family xx
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