Hello peeps: I’m just wondering if there’s anyone out there with fibromyalgia who has treated themselves without pain relief, somehow managed with purely natural wellbeing types of methods and been successful in maintaining this?
I’d like to hear from you if you have, I appreciate that this won’t be for most people and probably most would not want to try it either but I’d really like to hear from anyone who went that route and has had success, even if there may be sometimes where analgesia is necessary which I totally get.
Equally if you tried this and it did not work for you I’d be interested to hear what you tried snd where it went wrong and how you’re managing now xxxxxx
Stay strong because you are all amazing people and you are coping with a condition that is really tough…but so are you!! Xxxx
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Kezz15
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the answer is yes but your premise is wrong perhaps. We have no idea what people's starting point is or if there fibro is the same as the person next to them. Meds work really well for some but not for others. Possibly due to either where people are with their journey or perhaps because they have fibro type A rather than B or C or they are type A rather than B or C.
A, B, and C are just examples to explain why some meds and treatments do not work. Look at another way, the meds may be fine but you are the problem but seriously we do not know why some things work and not others although there is some research in this direction. So trying without meds may be right for you but then may not be. But there are plenty of people out there with the all natural solution that will fix you for a fee so be careful.
Hi, I understand about fibro and different types, I know some things work for some people but not for others, I know not one size fits all…I’ve had this a long while with recent diagnosis but knew for a long time. Add into this that my sister has had this 20+ years and I’m a paramedic aswell and you see I do understand this condition (been to many patients over the years who had this )…. so I really understand this problem. I’m asking simply because I’d like to know what has worked or not worked for some people so I can go “oh that’s a good idea/approach/lifestyle choice” and consider whether I might like to incorporate any parts of these regimes. I hope this sets people’s minds at rest that I’m not daft enough to try eg just eating eggs cos someone down the pub suggested their aunts uncles brothers girlfriends mum swears by it LOL 😂
I hope you are well. I’ve tried a variety of natural wellbeing methods in the early days of my fibro. ‘Clean’ diet, gentle exercise etc but I kept being in a repeated cycle of flares. The pain wasn’t managed which had a huge knock on effect on my quality of life.
While I still keep to eating right etc I do now take medication on a daily basis to help keep my pain levels within a tolerable amount. I say tolerable as it’s always there.
I agree with the poster above @desquinn it’s each to their own and everybody’s journey is different. For some holistic natural medicine may help for others taking pain relief maybe the only option at grasping some normality.
Meds don't work on my fibro pain so I gave up on them a long time ago. I can't have pain killers more than 8 days a month bc I have chronic migraines so I can't do those either as it happens.
I do a HIT type gym class everyday. The pain clinic suggested I could do it for 20 minutes a day and that would help but I'm not good at motivating myself so I do the gym classes. It's really good for my mental health and I'm now a lot stronger than I used to be which has helped me day to day particularly as my 3 year old son is getting so heavy.
Hiya I think it’s great that you do HIT classes… I’m amazed that you can to be honest, I know how draining these can be when fit and well so good on you for doing it and finding the motivation to do so and keep on going back..bloody well done xxx I’ve just signed with a really great holistic personal trainer who is starting me ever so slowly because I have injuries that I’m having to recover from, I’ve got muscle wastage etc. So she’s working a plan out for me re this but taking into account the fibro and couple of other bits… it’s going to be a long road… but she is great and helped kidney transplant patients etc inc those who’ve remained unwell for a long time & other fibromyalgia clients so I know I’m in good hands. Once injuries recovered who knows where it might lead..?
It does take it out of me and I get jealous that the other people who do the classes don't get DOMS whereas I get it everyday. I generally try and ignore my fibro as much as possible or I get too depressed. Plus with little ones about you never get to rest. I think I probably do have more pain overall than of I didn't do high intensity exercise but I feel more secure being stronger, esp as I get older. Before the pandemic I used to go scuba diving once a year and I really like that I find it easier to take the weight of the scuba tanks etc while standing on a wet swaying boat. I'm only 5'2 and was always embarrassed how much help I needed before.
I think it's amazing what us fibro people can do if we build up slowly as long as we keep pushing towards a goal. You will have to accept more pain in short term at least, and if you're like me in the long term as well, but for me having an active life is essential. Im not good at pacing.
Hi 😁I have had fibro for 21 years, it took 4 yrs to diagnose. I was offered amitryptaline and cocodomol . As I was a sales manager at the time and driving over 600 miles a week I did not take the amitryptaline but took 2 x 30/500 cocodomol at night only.
I took them for 3 yrs at night and they affected my digestive system.
I chose to try other therapies to help and since 2011 havent taken anything. I have had bowen, kinesiology, healing, CBT, òxygen therapy, meditation you name it I have tried it. I have since trained in Reiki and spititual healing which does help me a lot.
I see a physical and holistic practioner once a month who is amazing and helps enormously with pain.
I still have pain everyday and flare ups but manage it without meds .
Hi Kezz15, yes the Wim Hof method of breathing and cold water showers help immensely with my pain. At first I went on a Paleo ketogenic diet (as recommended by Dr Sarah Myhill) which kick started me, which, when that was too difficult to continue, I just cut out sugar. Now with breathing exercises and cold water (cold water therapy needs to be eased into very slowly and gently) I can eat a much wider variety of foods and even chocolate occasionally! I ensure I rest enough, doing absolutely nothing, but not enough to become stiff, so a walk every morning to keep everything moving helps, again far enough to tire but not so much to become exhausted. The book Ten to Zen by Owen O'Kane also helps to clear my mind when troubled by anxiety too. None of the methods above were easy to do as often I was too tired and in too much pain to bother but I was desperate to have a 'life' again, its probably taken about 3 years. If I hadn't pushed myself to do these things I I would still be bedridden and taking all kinds of meds, thankfully I'm not, I'm back to working 3 days a week and caring for my elderly parents in between, its not easy as I know very quickly when I've reached my limits, but body and mind awareness is a very important tool. Good luck in finding what works for you. We are all very different and what works for one, may not for another.
Personally no, I have tried everything in the spectrum from hot sand, cold mud, meditation and acupuncture and have found they do help a little but not enough for me to get the vacuum cleaner out. So I just lie there until the tablets take effect.I do get slightly annoyed - in the same way a friend of mine who has been a midwife for twenty five years, has 5 children, gets, when a first time earth mother tells her how to raise children -When someone who tells me I do not require them.
These things may work for you so try them, in fact try anything.
Hiya, I understand completely, you sound like my sister who has had this 20+ years and nothing but pain meds works for her… and she can take very few whereas I’m ok compared to her anyway and I can take virtually anything… but as we all keep saying to everyone: it’s different for everyone and no one is the same, meds affect everyone differently and what works for one won’t work for another etc etc
I understand that and also understand that it is cheaper and easier to lump us all in the same boat and make broad sweeping changes causing worry and pain for some people while not bothering others. Friends of mine who have had a life time of heavy labour and whose joints are ground to dust have had their pain medication reduced or removed by young doctors taking the advice they are given as gospel and not as advice. Also once it is removed it can be very difficult to reinstate again because of the advice. No amount bio-feed back or humming in a corner in the lotus position can sometimes replace the effectiveness and life efficiency of a couple of pain tablets to knock out the little goblin drilling a hole in your spine.
Some have worked, but going the holistic route requires , a lot of money , motivation ,& consistently to maintain it , in my opinion.
What has worked, really well for Me has been spa days, back massage , hot tub & sauna room.
Essential oil, for vapour lavender for winding down , peppermint for sore achy back , magnesium salts in bath , daily & exercising at least 3/4 times a week .But also nature walks in trees & being close to water .l have also had to go no contact with draining toxic people , & eating a healthy diet. I also have mental health support in place.I currently don't take meds, every day as I have reactions, to taking meds every day .But I am with the pain clinic , who is trying me, on meds & monitoring it .I wish you all the best, on your journal a lot of it is trial & error so , it's also useful to keep a record of what works, what doesn't .I have had reactions to some supplements too.So I think the case for, me is just that I am sensitive , to certain things .
It definitely can get , frustrating but the trick is to be kind to yourself & ask for all the support you need , from services .🌈
I agree, too much money needed to do the natural route. But I try some of what you do, working on the rest… due to go to pain clinic…. Not sure what they will teach me but always willing to learn new tricks. I totally get the draining toxic people, just wish I could get rid of the ex completely but I’ve got children so I’ve gone as no-contact as I possibly can….Daily Calm app is great and with me everywhere….anxiety is not great… had a lot of controlling and domestic abuse, thought was over that hurdle but now seem to be getting a touch of what seems to be ptsd…. Some related to the ex and some related to my job…(paramedic)… so it’s hard ref the stress…!!! But apart from that everything is great LOL 😂 XXX I still have my sense of humour lol 😆 xx
Kezz15, researching the vagus nerve and thiamine may offer information for your IBS symptoms. These links discuss fibromyalgia and thiamine. Magnesium is needed to activate thiamine however pain and stress cause magnesium loss leading to a deficiency. Another link raises your awareness of anti-thiamine factors. Always consult your health care professional before using any supplement.
Hiya, I don’t get IBS but I’m interested in your thiamine comment so I will read up on this (probably don’t get enough via marmite lol ) xxx I’ve had a tonne of stress, not likely to go away completely as it’s the ex husband causing all the problems so I’ve been working on my destress stuff and daily calm/meditation which works really well and feel huge benefit fir doing. Makes my day really.
The definition of "successful" is very subjective. I think the more realistic you are with expectation the more successful you could be. I for one take minimum (at most 2 days a week) pain medications but I am not without pain. I accept always having some level of pain and manage my responsibilities around it. It isn't easy but to me it is acceptable and can be considered "successful".
Hi kezz15. I am limited to paracetamol cus im intolerant of most other things.
I am convinced that sulphites are an enormous trigger. I take 2 prescribed antihistamines a day. This reduces the reactions. The consultant said i could have up to 4. Ive got to a x2 maintainance dose.
Sulphites are in so much, so it makes life easier.
Im also on antids that can also be a chronic pain relief ( only just learnt that). So that may help. Low seratonin is a massive contributer to fibro , a talk with gp regarding it may help.
I try allot of relaxation techniques. And essential oils.Reduced stress , better sleep, reduce symptoms.
Take each day as it comes, listen to my body, if i feel good do things but not go mad, or u will go backwards. If i dont feel good i take it easy. Spent 50 years pushing my self to meet others expectations
MOST IMPORTANT PUT YOURSELF 1ST.
If people mind then they dont matter. If they matter they wont mind.
People criticise, tell them to walk a mile in my shoes.
My hubby is wonderful, but he gets frustrated, and he sometimes doesnt get it. My reply now is , i dont care if u dont get it, didnt say it that way, its how im feeling.. please accept it, and help me .
Hi Bruton, you are right that certain antidepressants can help with the pain side of things and not just depression, however I tried that and did not notice any difference for me so stopped them but they work for lots of others. Amitriptyline was not good for me either as needed such a high dose to have an effect on my pain that it knocked me out so that one stopped too.
I’m currently on a bit of a strong cocktail because of another medical problem but when that has finally resolved I will be able to ween myself off them and start to see where I am again with the fibro.
I’d love to be pill free (hence my post) but it’s a wish that’s not likely to come true and I think I’ll be back where I was with a small maintenance dose and other stuff for flare ups. I really like the various things people have tried and some are definitely realistic goals for me so once my injuries are recovered I’ll definitely do those. One person mentioned hot tub, back massage, essential oils etc and those are all definitely me (with my dinky hot tub being a must for me).
Don't know if you're still around, so I'll keep it short: I second LisaSnow saying it depends what you mean by success. I don't take any pain meds at all, as either I don't tolerate them or they don't help. Apart from that I want to reduce the triggers instead of suppressing the result. That means 1-2h/d of self treatments, 2x2h/wk of acupressure after cryotherapy, and pacing, so I can only work 10h/wk - only a certain length of any activity (1h), not much after 6pm, need 9-10h of sleep, but it takes +30'-2h30 to get there etc. My success is I feel 90% well most of the time and my pain is 1 of 7 most of the time. My wife's POV is my 90 is 50% and my 1 is 3 for others - that's another part of how we define success....
Like Kerno I use the WHM breath-holding and cold showering to keep flares under control.
That was the one thing I can guarantee had absolutely no beneficial effect for me, a course of about 15 ice baths, (I asked why 15 and they avoided the issue , it was an arbitrary number someone had thought up) took me right back to the days of the Victorian asylums, I wasn't in one, not that old, did them in history.Where they though that, along with electric shock therapy, would help people and believe it or not electrotherapy in the form of a souped up tens machine was mentioned. That my doctor put a stop to.
I quite like the idea of a padded cell though you could sleep anywhere.
LOL How many minutes did you do "the Lady Gaga"? They wdnt be worth the effort for me for the 3' I cd take them. Even cold - like hot - canola seed hand baths for longer than 5' was too much for my circulation. (My showers are 1', my cryotherapy at -150° 3' - and I can guarantee they both help me.)
Not quite sure what you doc put a stop to, but TENS or anything with electricity hypes my seizures.
But I'm surprised that is the "one" thing you can guarantee had no beneficial effect. I doubt it, but lucky you, if you really mean it like that. :-). Of my 85+ treatments most had no beneficial effect and more than half harmed me, especially most end of 20th century medicines... "Victorian" and older ones harmed me far less & only short-term...
the cold baths and shock therapy make a certain amount of sense in the context of gate theory but we are not all one block. Fibro is heterogeneous which just makes everything very complicated.
The length of time in the ice bath each time was a minimum to 5 minutes up to ten minutes, they kept me in until the shivering/shaking became uncontrollable.I went in a young man and came out like a Palitoy Action Man.
Something to do with rerouting the reflex arcs. This was before the super cold room treatments which I think you are talking about. I hope, so I know someone who got liquid spilled on them a -100℃ and they lost quite a bit of skin.
The treatment was recommended by a consultant neurologist and when it was realised that the ice bath treatment was not working the next stage which was shock therapy was cancelled, as I said it was my GP who decided. Personally I would have given it a whirl.All the other things had some benefit, aroma therapy made me smell nice, diet changes introduce me it new and exotic food stuffs (quinoa ?? chirp) and even the normal tens initially gave me a nice tingly sensation then set me on fire.
Just remembered tea tree oil therapy that made me smell nice and then removed about 60% of my epidermis. It looked like I had a very bad day on a Spanish nudist holiday.
*grin* - Wow, 10' cold baths'd smash me up for a few days (esp. considering my Raynauld's). Not sure which "came first" ('before'), but I spose ice bathing's been done for centuries if not milleniums, while cold chamber cryotherapy seems to have been started in the 70s, and then in the 80s in Europe....
Really: liquid nitrogen?! Ouuuch!
Nice smell? My wife complains when I use tea tree oil... Got some kind of wart off of my foot using it, so I know what you mean about skin off if you use it more than once in a while...
My pain doctor said the fault of my fibro might have been caused my the extensive pain in my back. I was told that if you're experiencing a lot of pain for a period that your pain sensors see it as normal. It took me almost 3 years to find something that worked pain wise. I was on morphine, and so many different meds I had begun to lose hope that there wouldn't be something to help my pain. My doctor ended up giving me Nucynta. It was like a miracle. It subsided the pain enough I could almost have a normal life. I could clean my house and do laundry again. I could play with my grandkids again. It gave me my life back. So what happened? The government decided that it should be grouped with hydrocodone. Before that only two states had it down as a possible addictive drug. When the new year started, it started without my nucynta (thanks government) and with that insurance would not cover it. I could pay on my own. (over 700 a month) but could not afford it. My life now really has changed in the 2 years since. I'm not able to walk more than a few blocks, can't get on the ground to work with my veggies in the garden. Just getting out of bed is very painful. I hope you find a way to control your pain. I had mine but the government decided that it was a dangerous drug. My dose never rose, and I never abused them, but get punished all the same.
Yup. I decided, well after being told off by one of the young adults that a plain 'yup' wasn't enough. they likened me to the evolution of man. At about 6am I am crawling across the floor, I take 2 co co-codomol and over the next hour get up on all fours grunting and groaning in my strange language things like "need tea"," sooo thirsty". At about 7am I drop 6oomg of Gabapentin into the mix and an hour later I am upright and have managed to get the tea. Then I creep into the bathroom, clean up and shuffle out again. Feed the cats and then sit down sweating an shaking like an old blancmange that has developed indications of initial intelligence. Then the fun begins.
Keep your eyes open for TNX-102. With your job you’ll understand the jargon, it’s not released yet and not holistic but it’s a pain med without the dragged down drug feel. It’s use is for fibro pain and mood, ptsd, and for reducing agitation in alzheimer’s. Basically a reworked non opioid version of flexeril taken at night. Took away the umbrella of fibro pain and symptoms and I only had my knee pain from cartilage issues. I finally felt what was fibro and what wasn’t. Even though it’s a med, and not holistic, taken at night sublingually….twiddling my thumbs waiting for it to be released. I do not take pain meds, not even Tylenol or ibu anymore as they don’t even touch the pain. I can’t be comatose on pain meds as I have kids, hubby, my aging father and aging mother-in-law to care for. I don’t have time to sit, or destress but I do take an hour or so a day when I feel it kick me to relax on netflix or go to the gym. Might as well piss off the angry fibro with some retaliation of a hard sweat and have a reason for being sore than letting fibro do it without my approval or benefit! 🤣
I used to be bed ridden, taking any pain med I could, it spiraled me deep…I refuse to go back to that life.
I have the full backbone degenerative discs (c, t, l and s issues) and a ‘straight neck’, diabetes, pinched nerves, osteoarthritis, anemic, list gets longer but I’ll stop here. I won’t be the dog that goes to the woods to die or recover. I fight it daily with self awareness a good attitude and a swift smack in fibro’s face when it yells at me.
Wish many of you didn’t have to suffer…bless you as my heart goes out to you. (I’m gonna jinx myself and get flare from writing this post…)
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but seriously we do not know why some things work and not others although there is some research in this direction. So trying without meds may be right for you but then may not be. But there are plenty of people out there with the all natural solution that will fix you for a fee so be careful.
They wdnt be worth the effort for me for the 3' I cd take them. Even cold - like hot - canola seed hand baths for longer than 5' was too much for my circulation. (My showers are 1', my cryotherapy at -150° 3' - and I can guarantee 
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