So read today that painkillers 'may' do more harm than good in treating chronic pain. And there's no evidence to suggest they actually help...? 🤔
I dont know about everyone else but I hate taking pills and would much rather a stand alone holistic approach.
Fact is I cant afford the treatment i need so have no choice but to take pills. And I think ibuprofen, cocodamol, paracetemol defo help - in that moment at least.... unless its a placebo...
TY. They are saying there is a lack of evidence for infusions for example and only help for a minority. But that minority have tried everything else and end up with that after pain clinics and if they take that away then that minority are left with nothing.
So since there is a lack of evidence we will take away something that is working for some and replace it with something else that has limited efficacy evidence but will not cause harm.
So do nothing that then you are not inflicting harm except by doing nothing the patients will be harmed as they are doing nothing. Lack of intervention is not without harm.
I am conflicted on this as agree that we must follow the evidence but this will harm people and there intended aim of restoring faith in health care professionals by setting correct expectations will not work as it will devalue their contribution and leave more patient exasperated, isolated and in pain.
I think the medical profession seems to lump all patients together who are dealing with chronic pain instead of treating us as individuals. What seems to work for one doesn't work for another. It is like lidocaine patches that have been withdrawn for use with fibromyalgia patients some people found they were like a miracle but now are refused them.
I have tried the natural approach but have found light exercise, a good diet and unfortunately painkillers and antiinflammatories are what make my life bearable. I have cut down as much as I can and am still in pain all the time but at the moment on most days I struggle through. I just wish they would spend more time researching sommething that would help more people as some are being left in an absolute limbo.x
The main problem is lack of knowledge so therefore all patients are treated with different drugs and sometimes very strong drugs which clearly do not suit the purpose. I have friends who take morphine and strong pain patches for fibromyalgia where my GP says that there is no point because it won’t help me.
I am on very little pain medications but what I do take just doesn’t help my pain, In fact nothing helps my pain when it’s at it’s worse. I would really like to see the experts come up with something that is going to actually help the pain without causing so many side effects and hopefully one day be able to function better in this world instead of just exist.
I know excatly what you mean with the morphine. My GP prescribed norphine and the patches they don't do anything at all literally nothing, yet pain management said dont bother with opiods. I mean sometimes I e been so desperate to rid my pain I have taken more and drank a glass of red. I know i shouldn't but I get stuck with pain in tears with pain that anythubg at that time will do.
And i cant even cry with sever costochondritis! Lol
But yea moving about helps with prevention for me. Keeping it where it is. But when my body locks in pain in goodnight senorita
Well, I’ve lived on them and off them with this condition and would say taking Tramadol def works for my pain (and boosts anti depressants effects. For me, being badly depressed and in pain is too much suffering. I don’t much like being reliant on pills either but the relief gained , for me, but maybe not for you, it’s worth it. (Nb Paracetamol boosts the effects of Tramadol). I did read about research being done into a non opium based pain blocker that’s non addictive but have heard much about it recently.
I am exactly the same can’t cope without them def work for me wouldn’t be able to get through the day have been on tramodol for 2-3 years I can now do things I couldn’t do before , so without them my life wouldn’t be worth it , I tried Acupunture, oxygen tank , etc etc basically everything out there first , if I have a really bad flare in need paracetamol in between , having tried everything else these give me some quality of life , same as you don’t like being reliant on tablets but I tried everything else.
It did to start with & I will try again but it was needing so often & the expense as really I would of liked to have it 3-4 times a week , but everyone is different so it’s worth trying it , goodluck
I have become increasingly intolerant to painkillers over the last 15 20 years, and then after 2 different surgeries for 2 different cancers am now only able to take paracetamol,then I 9nly use these for such as toothache as they don’t touch Any other type of pain. I was diagnosed with fibro officially 2 years ago. I taught myself meditation and then would spend all day just making and cooking healthy meals. I persevered and persevered and am now at a stage where I have improved and use the meditation and healthy food to maintain and manage the pain. I am lucky that I have no responsibilities so I feel for you who have as this all takes time and focus on yourself.
I have just briefly read the article but I need to look into it a bit more...
I think this may be linked to the NHS wanting to stop prescription painkillers..
But I agree, if they are helping some people, and it is their only relief, surely it is up to them to make that decision. Unless evidence proves there is real harm for doing so.
It would be AMAZING if the scientific world could focus on holistic and spiritual methods and come up with some more affordable treatments.
I am finding that reducing stress in my life is having a positive effect on my pain. I have also seen a sports masseuse recently which also really really helped.
It’s a continuous journey of learning and growing and working out what’s best for me. Sadly, I can’t say that the medical world is where it needs to be in treating and supporting those with chronic pain. Not in my experience anyway.
I discovered quite quickly that I was incompatible with all the usual pain killers used to treat fibro.
The only thing that didn't make me ill before the pain went away was cannabis and then one day I stopped enjoying being stoned (how unfair is that??).
Paracetamol and ibuprofen might as well be smarties and the placebo effect of alternative medicines just doesn't work on cynics.
The only things that works for me are my tens machine and (ahem!) the natural release of endorphins.
I am fortunate enough to have a partner who works full-time (and appreciates the value of the natural release of endorphins) and very understanding boss (I'm self employed) so I can just stop when I am in too much pain to work.
I think different people will find different solutions but whilst I have my coping mechanisms I have yet to find anything that makes the pain go away.
Funny because I've really stopped enjoying cannabis too i smoke one joint around 10 pm so i dont get woken up by pain, but I've really had enough of it.
Also the natural endorphines are the best for fibro totally agree. Nothing rids the pain but i do have some good distractions, albeit not affordable or even practical, but adrenaline helps my pain.
I've had piercings or tattoos when in pain and I have no idea how but my pains subside and getting tattooed feels amazing, yet only when in a lot of pain 🤔
My thoughts are as follows; I use over the counter Ibuprofen, a few times a week, (not regularly).
I used to take opioids, but found I didn't like their effects on me and weaned myself off almost totally, I will take a dose if I'm desperate and the Ibuprofen doesn't touch it, but very rarely(I will point out this is for a knackered knee, not Fibro.) I need to get a small amount again as my current ones are out of date.
I no longer take anything for Fibro, I manage it with short amounts of exercise (housework), about 5-10 minutes, followed by 5-10minutes resting, then back up and at it. (if I sit I stiffen up rapidly, to the extent that I can't move, I no longer drive because of that and the fact my eyes are failing).
Omg thats amazing not to need to take anything. I do get days like that. And the sitting for, lol, yes do you seize up like tin man from wizard of Oz.... its so true. I found moving is the best thing for fibro which isn't totally bad. Its good to hear how you manage you fibro, I wounder do you have a relatively stress free life, as much as one can have ? X
Hi, Depends what you would consider a stress free life. I used to get a lot of pain with the fibro when I was new to it, but the opioids weren't doing me any good, nor were the anti depressants.
One day I thought, 'I'm wasting what is left of my life, I'm going to take control.' I started weaning myself off both medications, and found, as I relied less on them, the less I needed them. I managed to reduce my stress levels, which were mainly due to the medications, and found my thinking clearer, and my ability to cope with stressful things inproved . I sold my house and moved 300 miles into Wales in February, and within a month was in lockdown. I'm an old lady, (72), and it was a big step for a non driver.
There was stress at the old place, it was part of a terrace, badly overlooked, with only an alleyway between houses, and noisy neighbours didn't help. In comparison, the bungalow is lovely, no stairs, a wheelchair shower room, and a garden I can get around in. And, It was beautifully peaceful until the tourists started arriving! (only kidding; They are the lifeblood of Wales, since we lost the coal mines and the majority of the Steel Industry). Only one problem with the bungalow; My furniture didn't fit!
Lol amazing. Of course moving 300 miles at 72 with fibro... like wow take my hat off to you your inspirational.
I have 2 children ones a 16 year boy with diabetes who is quite spoilt so its stressful and my own fault. Also I'm a single parent so its a little challenging at times. Anything else doesn't stress me really im quite laid back. Iknow howyou got yourself to this good position your with your health though I totally know how you done it, I done it years back when I was on steroids, methotrexate, cyclosporin ( I also have Behcets disease, vasculitits) and I thought "right thats it, I'm no longer ill im Sam, forget this" and the same thing havent taken much for the Behcets since.
Docs was and still are amazed, I was loosing some sight at the time also.
I've tried that method now with fibro but it hasn't quite had the same effect but I think its parenting to be honest and worry with my son.
But anyway its delightfully refreshing to hear your story, and Wales excellent choice, im Welsh lol 😆
Oh crumbs, I was diagnosed 12 years ago, but I have had it far longer, I can track it back to 1978 or9.
I too had to bring my children up solo as my husband committed suicide after losing his job, and being an absolute swine to us for many years. Then the Inlaws tried to accuse me of murdering him, but fortunately, The police officer who took in the accusation was one of the two who had had to break in and find him.
It's a long and involved story and I have related in on HU many times.
Suffice it to say, that what doesn't kill you makes you strong; and I have needed to be.
Wow . .. I admire you and your right what doesn't kill you does make you stronger. Your story alone has given me a lot more hope for the future. Thank you sharing such a sensitive, raw and honest experience I value it alot as I said its offered me some hope xxx
If my experiences help people, I don't mind explaining what has brought me to this point in my life, You asked about stress, there is the greatest stress in mt life.
I’ll certainly look out for this once the public consultation starts and will feed in my own views - interested to know whether fibromyalgia uk will be responding.
There’s a distinct difference in tone between the quote from the consultant psychiatrist leading the study (psychiatrist?!?) clearly coming from one perspective and the NICE director with a slightly more balanced view. It’s clearly rubbish to blanket state that “the drugs don’t work” quite obvs they do for a lot of us on here - me included. And I don’t regard them as something to resort to either - they are just a treatment option like medications are for any other condition. (And I found out - following an accident- that morphed v much works for me - it might not for all, but broad assertions that it doesn’t work don’t help those of us who rely on it).
There’s a need for much research and better treatment options but to fall back on this line feels the worst of all worlds - it’s just taking an option away.
Hi there, I have chronic pain after being misdiagnosed and treated for something I didn't have for years, I would give my right hand to be rid of what I have . I have tried all pain relief going it only takes the edge of it , I have also had infusions to no avail . I agree that you can get addicted to pain killers but my heart goes out to people like myself who haven't a choice and just get told to get on with it.
I weaned myself off amitriptylene two years ago and take two paracetamol every night for my fibro nightly pain. I have no gluten/dairy/tea/coffee/alcohol in my diet (so tedious) and has helped plus daily walking and stretching. I get by but have bad days too. Not sure I could give up my paracetamol. I wish everyone in the world had the constant pain we fibromites have for a month; then see if it would wake them up to increased research, etc!!!!!
Brilliant. I think cutting out such products is the best thing you can do. I haven't done it myself but I think I'm going to try it I've thought about it so much I may just start today! Think reading the replies to this thread had made me rethink 'okay time to reassess treatment and get a better health routine' . Been a bit of a slave to the fibro lately.
Hi, ive read most of the comments below and have to agree that what works for one, doesnt work for all. I hate taking pills and am very bad at continuing taking the full recommended dose. But when i was first diagnosed with Fibro, i tried - along with my GP, anything and everything. After about 8 months of different pills and potions, i found the combination of Gabapentin and Tramadol worked for me and took my intense pain away and i managed to sleep too. Gradually i came off the tramadol, continued with the gabapentin until things eased up a lot. I did try Acupuncture as a result of a visit to my physio. He suggested it and he did it also. I had 4 weeks of it and have to say it worked wonders for my upper body pain, in fact after the month, i didnt have any upper body pain again. I remained stable for a couple of years. But now i have lower body pain in hips, thighs, legs etc. Its ecruciating at times, wakes me every single night. I tried again with different pills from my doctor and nothing worked, so i gave up taking them. I use things like freeze gel and muscle rub. Cheap and easy to buy over the counter and it gives me that instant relief to enable me to get back to sleep. I honestly think that in the long term, pills dont help, but for initial pain relief i think we need them. Its just a case of finding what works best for the individual.
Hello there, yes it’s a hard one and every one that has fibro seem to have different strengths of pain, some can work, some cannot, does not help when we are thrown other conditions as well, I have codiene that I use some days but effect wears off after a couple of hours , ,duloxtene that was given for anxiety but 60mg dosent touch my pain but works 100 per cent for the anxiety, I get what you are saying I saw newspaper report recently, unfortuaneltly meds can have side effects as well ,I have gained over a stone 🤣, but I have cfs as well as other things , I do try pacing and keeping active but can end up worse off, cannot win sometimes can we. Xx
Totally agree I think some days fibro has its own mind and is like... 'tough s**t your having this pain today and do drugs will work' lol forever swapping and changing meds around. I think its part of the treatment, we do start building up an immunity. X
As a nurse we are taught to give paracetamol in the first instance for pain, if that doesn't work we give analgesia according to the pain ladder. That means paracetamol then codeine, nefopam, then naproxen or ibuprofen, then tramadol, then the next step in the ladder is morphine and other opiates. There are many drugs in each group and it is a complicated process. I think with fibro pain, to avoid damage to your kidneys and liver we have to be careful what we take. I was offered Sertraline a couple of years ago- which is an antidepressant. I didn't want to take an antidepressant as I wasn't depressed but I must admit my pain and exhaustion is better. You have to think about what is best for you.
Yeh I seen the article, and am left extremely confused as to where I stand Pharmaceutically. Since Sept. 2019 I have been trying out the holistic approach, but not knowing which path to take should I feel I require the additional assistance, is quite stressful.
Same do I try reiki, cupping, pilates or a bit if everything...??? I even went vegan for 6 months or so but I flared up terribly but I do find i experience less pain when I cut out sugar of, well the food that I can cut it out from. I think its about trial and error and finding the right balance. Xx
I used to take ibu and naxproxin for pain. I've gotten to the point where it has torn up my insides. My gastro refuses to let me take either one if them anymore. Tylenol is best they can do but not alot. So for past two years of pain I have had to" just deal with it". Not hardly a treatment but unsure what next move is. They believe I also have Barretts disease. Prob not any help for you but that's what I am told to do.
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Doncaster has a fibro support group! what would you like to see?
Something I would never say !
What advice would you give a student nurse wanting to help people with fibromyalgia? 
