Hello, I wondered if anyone has found anything that helps with the fibro pain that is not tablet related. I really struggle with tablets always have my gp is aware of my struggles. However, I did try several tablets and found they did not help with mh pain levels.
I have tired the pain gel 😩 also found this unhelpful. I bought a tens machine as this was recommend at an appointment also does not help.
I am looking or wondering if anyone has any other suggestions on how to reduce pain.
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nikkir33
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The only things that really help me with the pain are breathing exercises, cold showers and meditation. Pain killing tablets are getting less and less effective.
I find the relaxation critical. One major trigger for me is stress of any kind, obviously I can't eliminate stress completely but I do try to avoid it if I can.
I genuinely walk most days with the kids work and uni. Don't have much time I was thinking about trying maybe yoga something more on the relaxing side.
Pacing your day for a balance between activity ( physical or mental) and rest is great for Pain prevention. Working out what triggers your Fibro pain and avoiding those triggers by adapting the way you do things us key. Relaxation exercises and breathing techniques also reduce tension and stress triggers. Creating a sleep routine is also key , even if you don't sleep the body needs quality rest.Doing some gentle exercise , such as a little walking , gentle swimming or exercise in water, Somantics stretches and low impact Pilates or tai chi , and stretching each hour if you have an office job dies help improve pain and fatigue in Fibro. Just take it slow within your comfort zone and build up a set of activities that you gain relief with slowly.
Hydration helps the body and brain to manage pain and fatigue from within as well as being vital for nerve health and metabolism. You can have internal dehydration even if you don't feel thirsty and this adds to symptoms of all sorts. Drink the recommended level of fluids each day.
Heat pads are very effective , and lotions like Flexiseq or Pernaton can have improved results if you use a heat pad before and after applying because the heat opens the pores and allows the cream to be absorb to a deeper level which makes it more possible for it to soothe the pain in the site it is in.
Good nutrition and vitamin supplementation can also improve your symptoms by preventing flares and keeping the body healthy enough to cope with symptoms. Extra Vitamin D , Pure Omega 3 , Magnesium, Vitamin K2, Vitamin C and a B complex as well as a combined vitamin mineral daily supplement can prevent low levels of these nutrients which can cause symptoms that trigger pain.
Probiotics can help if some of your pain has digestive origins especially if you also have IBS.
If you can use them , depending on your other health issues or medications , garlic , ginger and Turmeric can sometimes improve circulation and joint pain.
Reducing processed sugar to rare treats and avoiding processed foods and artificial sweeteners dies also help reduce pain.
Avoid products containing Omega 6 , it's a proinflammatory and can trigger pain to get worse.
Many other treatments work in combination but you need to work out which complementary therapies such you as an individual and your triggers. Hydrotherapy is a very good way to get physio and reduce pain. Many people get relief from short sessions in steam rooms , but some need cold treatments. Some find acupressure or chiropractic treatment helps . Medical Manipulation Therapy may be available via your Health Trust just like Hydro you may be able to self refer or get your GP to contact the right physio department for you. You will probably need to do a bit of local online research as most GPs, from my experience, have no idea which hospital in the area has the Hydrotherapy pool or a physio with medical massage experience.
But , if things are rough , eventually finding that drug combination to keep your pain in control is very important to reducing pain but also the ongoing long term damage to your body and quality of life from having Fibro. Finding the right combination involves quite a long time of trial and error at the same time as creating your individual self care needs. If you have difficulty with pills sometimes patches or oral liquids can be prescribed instead. You body can sometimes have some side effects when you first start a new drug which are off putting , especially with Fibro , but these side effects will often die down after a few weeks and then it can take a few months before you see a significant change in pain as the body gets used to using the new drug . It's good to keep a note of your side effects and if they are not ones that are proof of an actual allergy or intolerance give a drug time or ask the GP to try a lower dose instead.
Which Medication have you tried so far ?
People may be able to advise you with other types that work for them if you add this info on to the post or in the replies.
None of us really want to rely on drugs for help , but unfortunately if you get a condition like Fibro your Old Normal needs to be replaced by a New Normal and the rules change quite a bit , drug treatment is part of the holistic approach to manage it just as it is with conditions like Arthritis.
new normal taking drugs !, should not be saying that someone with fibro should be taking drugs, its an option , look how many come on these threads stating that the drugs they are taking are having less and less effect , healthy diet , more gluten free , no white bread , exercise when up to it is always best way to go , only a good doctor working / communicating with the patient can advise regarding drugs
Of course , taking a medication or having any type of therapy or self care is finally the choice of the patient , not the doctor or those that can give advice , but for most , taking medication is part of the " New Normal " of managing their condition ( I prefer not to say drug as it has such a negative stigma as a word ) .
And I agree without the foundations of Pacing and Good Preventative Self Care no amount of medication will work on its own because you won't have brought the things that trigger your symptoms under control. But our Self Care with a chronic illness like Fibro is like a three legged stool , if we refuse to put one leg on the floor , even if we don't rely on its support daily , we are always going to risk the chance of losing our stability or in the floor with a flare.
Coming on forums we look for advice , often if our medications or therapies are not as effective as we need , either because we would benefit from different options or that medication has become less effective from long term use. Asking for the experience of others , and other medical or complementary alternatives which could replace a treatment that is not working for someone, is a very proactive step. We can find out about alternatives that are successful for other patients with experience that we may not have learnt about , and most importantly, our doctors may not have read about yet because they have less experience of the condition we have , or don't have the time to do the research the patient has.
That's why forums giving support and information are so vital when dealing with a lifetime chronic condition.
I totally agree , it is necessary to also make changes to your self care and pharmaceutical treatments in partnership and with supervision from your GP , Consultant or Experienced Physiotherapist. I have an excellent diet, reduced sugar and artificial products , hydration and nutrient supplementation, I have a comprehensive exercise programme , a sleep regime , CBT and relaxation techniques , a sensible Activity Pacing system , physiotherapy and complementary therapy .
It is a partnership between Patient and Doctor , and often a doctor needs additional information to work with , and sometimes needs reminding that your treatment should be based on discussion . I have spent years learning how to work with doctors positively, politely and productively. After years of gaslighting , misdiagnosis and delays in treatments because of the lack of knowledge which often occurs in the consulting room I learnt understanding that the doctor , patient relationship with our illnesses must be a two way street.
I would be on much higher doses of medications which were not effective now without doing my own research and discussing with others on forums what experience they had of different medications .
I would not have found which medication and physiotherapy would help the Dysautonomic symptoms I have if I hadn't done my own research and then requested using them with the people in charge of my Care.
Without the right medicinal help , no amount of other self care work I did would have been enough on their own to control my various chronic conditions and my quality of life and mobility would have continued to suffer.
Now, by using the third leg of my Self Care stool sensibly, I can make more progress in reducing my flares , and allow the other two legs to have more chance of keeping my general health level and life quality higher , delaying the increase of other symptoms and further deterioration in my life quality.
But ,at the end of the day , it is still the patients choice. I wish you luck with your own treatment choices and value your input. Take care , Bee
Hi Bee, ta for in depth response , seems you have a full time job controlling you situation , as for the balance theory , after many decades of fibro I now prefer the natural approach , akin to balancing stones rather than the three legged stool analogy / analysis , presuming one leg is medication.
A very important balance is still attempting to have some form of a life whilst coping with this brutal curse , that is one hell of a couple of big plates to spin and certainly cannot be achieved on constant level , boom or bust was the motto of a NHS pain clinic specialist that I had a course with some years ago , ha , her surname was Bustin , genuine she left the NHS , She was adamant that fibro sufferers need to live by way of doing more on your bad days and doing less on your better days , basically trying to keep a even keel to your lifestyle , she said that they had experienced good results and that people had basically been cured ! , her sessions had been informative until she said this and then she lost my attention ,
all well and good , but real life if you choose to try to continue to live it as much as you physically can is as we know often stressful , sometimes traumatic etc , I choose to crack on when im up to it not just sit and twiddle my thumbs so im very much boom & bust , if living in an on site chalet as part of an experiment doing pretty much sod all for weeks on end just so the NHS can boast that they can improve or even cure fibro is not something I subscribe too.
Ps have you ever stepped on the toes of Des , he dosnt like anyone writing more than he , or offering regular in depth advice as your good self
I don't know , I hope not , I don't like to upset anyone , it doesn't help my day if I think I've made someone else's day worse unintentionally.Umm, do more on your worse days ....
There's a person whom hasn't experienced the illness they help to treat.
As you say , there is no cure for Fibro , so anyone that says that they can cure it , be it medical or complementary with their methods I instantly treat with healthy scepticism.
I do what I can on bad days enough to stop the rot and spiral of Fatigue, and more on good days but not so much that I push the buttons to busting point . It's that consistency that has helped me.
Funny names , yes , I was quite disconcerted when my surgeon at one point was called Dr. De'Ath... No , really not a joke and he was very sensitive about his name. I've also had physio with someone called Miss Payne , we did one session and it turned out to be a warning not an ironical coincidence!
Physio Payne & Dr De`Ath & Co , sounds like some solicitor firms I have had the misfortune of engaging with , also maybe Ms whiplash and the grim reaper , not that I have engaged with either yet but one day the latter will of course come a knocking !
I did wonder about stem cell research being the future for potential treatment , but now think the only way to extinguish this illness is by way of eradicating it via genetic science , removing the fibro gene from the human population , clearly if that is even possible in the future it offers sadly little hope in our lifetimes , scientists seem more keen on dabbling with the sex of babies these days , think they want a trans-revolution !
I lead a busy life between work uni and the kids. I do make a effort every day to get up and move about. Sometimes I study at home but everyday I still get up and about.
Exercise I have went back and forth with and not actively engaging in anything at the moment apart from gentle walking . However was considering something more along the relaxation side of things as really struggle to relax.
I have tired breathing exercises before but my mind don't shut of so I find these extremely difficult to do.
Stress is definitely a trigger, again I try and limit these as much as possible but with kids and deadlines uni is packed it is sometimes hard to do so. I find the cold also makes my symptoms worse and lack of sleep.
Talking about sleep I find it very difficult to sleep and when I do it is very light sleep I did try medication and was increased many times it did not help. I have tired a bath before bed , got drink, lavender etc. But no luck probs don't help my youngest is not the best sleeper ethier.
You made a good point about hydration it is a downfall of mines I never drink enough. I should actively try and drink more. Also the heatpads someone else suggested these I will try and find some and give those a go.
I was on a chewable multi vitamin that recently ran out I shall need to get some more.
I dont want to relay on drugs there very difficult for me to take. And I also don't want to be zoned out if that makes sense. I understand they come as part of many conditions but drugs are just not for me.
I find singing loudly relieves stress, helps me breath better as I'm breathless and aids with pain. I guess I concentrate on trying to sing in tune and divert my attention from the pain. Does anyone else find this helps.
I have been diagnosed with FND since covid which fibro falls into this category as well.
Singing Therapy has been found to be a great relief for various conditions . Research is ongoing but as well as helping Stress , it has been seen to help Pain because it improves your breathing technique. It has also been found to improve thinking skills and improve muscle strength which is helpful with things like Parkinson's, MS and Alzheimer's too.So you sing loud and proud , and know you have a Fibro friend elsewhere that does that too.
I understand completely about the zoning out and I didn't want to rely on medication early on , but eventually you get to the point of being in a vicious circle without a little pharmaceutical help. The Fibro causes the Pain , then the unmanaged pain causes another Fibro flare , spiralling eventually into Fatigue , Insomnia , Autonomic Dysfunction and more pain and nerve damage.You are early in your diagnosis so I understand , we all felt like that early on , but eventually we come to except lower doses of medications are no different than using any other sort of sensible proactive Self Care. There were many drugs I tried which didn't suit , but some added together at smaller doses gave relief without the zombie side effects and help me keep the pain under control so that I can let other Self Care therapies do their work .
Remember, most drugs used for Fibro with success aren't steroids or heavy opioids , they are Antiepiletic, Antidepressant and other nerve relaxants which may have been originally created for one cause but have been found to be useful for various pain , nerve and muscle disorders . There is no stigma to their use in the right way . Medications are Ability aids , no difference in practicality than a wheelchair , walking stick or pair of glasses.
I have Dysautonomia as well as Fibro so high doses of medications that weren't really spot on for me left me woozy all day. As a professional artist keeping control of my body and still maintaining free expression in my thinking was crucial. But the pain was so bad early on , when my daughter's were still little that I realised that stripped me of my abilities to do things or think as well as I could as well.
I now take the lowest dose possible of Pregbalin and Duloxetine in combination with a couple of standard doses of Paracetamol a day. One thing that made a huge difference to me was getting my Dysautonomia diagnosed and also getting circulation medication for that and then researching nutrition and taking whichever supplements helped my symptoms as well. At the end of a lot of trial and error you know you can't try and just get on and ignore pacing and relaxation , no matter what lifestyle you have but that unlike a generally healthy person getting over an infection or injury , a person with a chronic health condition needs that last jigsaw piece of medication to keep going.
You don't aim to be 100% pain free with Fibro , or any other pain related chronic illness . You are being successful if you can be consistently 85% Pain Managed while still enjoying a well paced quality of life.
Unfortunately, some things do have to give , Stress , both positive and negative stress, must be paced and you need to reset your priorities a bit doing what you need to do and want to do , not what you think you must or should.
And don't be ashamed or feel guilty for asking for help with practical or physical jobs and chores , it's by trying not to keep up the myth of being superhuman that you can keep up a happy life .
I have not been pain free for over 15 years I only got my diagnosed around 5 to 6 years ago though. Probably because I never went to see the gp until that point. I would not say iam early on in my fibro journey.
I do have quite a bit of medical knowledge when it comes to medications I understand that for some people and personal circumstances it may be suitable.
But I know deep down for me it is not a route that I want to pursue. I have tired serval types of medication since I was diagnosed and did not find them helpful.
It is are ordeal for me to take medication and putting myself rare that to see no results is just not worth it for me.
Thank you for your advice I am terribly independent but I will try and ask for more help.
anything fun or creative that needs some mindless concentration and some time go by without realising.
compression gloves help my hands joint pains, an very oversized jumper keeps me warm, proskins leggings helps keeps legs moisturised. magnetic bracelet titanium I wear all time now, it makes no sense how works (read reviews on the selling sites), however not good for pregnant, pace maker folks. It does take time to get used to weight.
I did recently start diamond art, which I am enjoying, just trying to find peace away from my youngest to do it. Never heard of th magnetic bracelet u will.l9ok into that thank you.
hi hope your better try electric blanket hey pads I use wheat bags some have lavender so if allergies then no. Also try relaxing in tub to unwind or get massage done which helps ease pain hope this helps
I had a massage years ago felt fine during the day of. But for 3 days after, it affected my mobility. I am ok with a genital run though I feel the ly went to far into the muscle maybe put me off getting another one. Heated blankets I will look into.
That's called Delayed Onset Muscle Soreness and Post Therapy Toxicity. Fibro sufferers need to be extra careful about Massage , just like Exercise types because this effect is common after something which is too hard .Gentle massage therapies sometimes help like reflexology, shiatsu, Bowen , skin brushing or gentle self massage for digestion and lymphatic drainage. The usual types of Sports , Swedish massages etc can leave you in bed for days.
Medical massage therapy is beneficial but it is better done by a Fibro experienced Rheumatology Physio or Chiropractor, and only built up from short tests on certain body parts with lots of hydration before and after it to improve the removal of any inflammation and toxins.
Acupuncture rather than Acupressure can also cause bad side effects for many , if you are hypersensitive, or there is a possibility of your Fibro originating from an autoimmune or autoinflammatory pathway.
Believe me I've been there too.My manipulation therapy is done by my physio , but I know I was lucky to find him after doing Hydrotherapy with him as he has a big interest in Pain and Autonomic Medicine so he understands that any therapy has to be started small to see if it fits and built up very slowly.
During COVID physio wasn't available and it made a massive difference to my pain and Fatigue.
My OH has since learnt certain parts of the technique with my physio to give me some help at home. It has been a lifesaver. Just a little manipulation in the right way to the spine improves Autonomic Dysfunction and the body response to triggers. When it's done it feels like flood of cold but relaxing water trickling down the spine and the improvement in tension , stiffness and pain lets me function as well as I can for a week.
My worst experience was acupuncture, encouraged by the Pain Clinic , within five minutes the pain at needle sites was like fire and my entire skin felt like it had been attacked by bees. It took a month to get the Fibro flare back under control.
Acupressure, however, I've found very therapeutic.
And if you plan to go drug free , as well as pacing yourself , you may find a more specific TENS type therapy useful . Vagus nerve stimulation , with TENS via an application near the ear is helpful to many.
There is the possibility to try Spinal Stimulation Therapy via the NHS and Ultrasound Therapy and Infrared Therapy is useful but it's a struggle to get to try it with Fibro on the NHS. There are ultrasound home units but they can be expensive, it's worth contacting the company explaining your situation and seeing if you can do a trial before you buy.
Thanks for your suggestions I feel o am going to have to start writing everything down, lol. Be arriving at the GPS with a book size of yellow pages lol. Of treatments to try.
I use tens machine for flare ups and Epson salt baths and heat helps also it is not an instant fix but it does take the edge off it and with rest it will eventually ease up. It takes time to learn triggers and be aware of when to ease up and when to push through on things maybe younare over doing it at tomes causing your pain. I got a heat belt in lidl last year I found it helpful.
Pain is so exhausting and I’ve had my fair share of pain with my failed spinal surgery, fibro,trigger fingers, psoriatic arthritis, rheumatoid arthritis and the list goes on!!!
I’m having treatments with a iTeraCare heat wand and a Spooky healing mat and I’m getting pain relief for the first time in many years…
I went to my consultant and told him what I was planning to do and he agreed that all alternatives should be tried and even acupuncture has helped me. You can get acupuncture on the NHS as it was offered to me but l knew someone so l used them. I went to iTeraCare.UK on FB and found lots of information and you could also check it out with your GP and consultant. Thank God it’s helping me and my consultant is very happy with my progress.
I try to focus on positive things around me but it’s not always easy when pain takes over your life…l wish you all the best with your health and healing. Happy New Year Nikkir33
Thank you so much I will need to call and speak with the gp. Just a nightmare trying to get any kind of appointment. I will look at the website also . And happy new year to you as well.
Hi Nikkir, stay positive and l wish you well whatever route you go down…the natural route has helped me but everyone is different, l was fed up with all the side effects from the medication and now my body is stronger. My spasms are still causing me sleepless nights and difficulty with my walking but I’m getting there slowly. Keep in touch.
Growing your own organic vegetables and fruits helps your immune system and gives you gentle exercise, l sit in my greenhouse potting up seedlings and although l lose lots of seedlings on the floor due to my spasms those that get into a flower pot grow up to be healthy and good to eat, although l never ever tell them I’m going to eat them!!
What part of the UK do you live? I live in the North West where it is cold…
Just move slowly on your new journey of becoming drug free, it’s taken me 3 years and I’ve still got a good distance to go,
Last year l grew 3 figs on my fig tree and olives on my olive tree, l thought I’d won the lottery lol!
I sadly are unable to drive due to my spasms but l pray l will drive again one day. Have a good night.
I am not going lie I like been in the garden but I am not very good at growing anything lol.
However my garden randomly grew ill strawberrys last year for some reason. I do like to forage those and some wild berries. I am lucky enough to live near things like thag
I live in Scotland i am currently doing my driving lessons at the moment. Managing ok with it but think if I did longer joinery would need serval breaks.
yes , luckily I had a hood chiro who explained its like wearing a brace it takes 18 months, when you’ve got into such a bad state , it takes to get back , I live mostly pain free now after treatments
I like others have been using microwave heat pads that soothe rather than eliminate pain plus I swim but recently bought very cheap gilet ( sleeveless jacket thing ) that heats up with a power pack n it’s sooo comforting for that shaky nasty can’t get comfortable all over pain x Br it , it only heats the neck n back but I wear in the house n under a coat it was £20 from woucher n thoroughly recommend I forgot to buy the power pack so had to buy separate but I’d give anything for a bit of comfort as no cure on horizon yet my friend
hi nikkir33,I couldn’t swim either and invested in myself n bought private swimming lessons only a few and best thing I ever done . Worth every single penny n I couldn’t get in water without the splashing making me panic n think I was drowning x
Try hydrotherapy which is standing only in heated pool and have got great Benefits from it , you walk into the pool and only chest high but you can be in the more shallow part
Not sure if it's been mentioned , what about patches , I'm aware of fentynl patches, that are on script in the UK & that's a way of pain relief that isn't tablets .
Unfortunately the only thing that works are opioids, which are addictive as is the smoking alternative.
Recently my surgeries pharmacist phoned me up & asked me if I wanted to change from morphine tablets to fentynl patches & I thought why not as my tablets aren't as effective as I need them to be, long story short, a telephone consultation between my GP & I where I told him everything I was told & within 5 seconds he said no, its not something I recommend & I want U to stay on the morphine. I listen to what my GP tells me as he has always had my best interests at heart.
I know this doesn't help U but I suggest U sit down with ur GP & ask him all the questions U need to ask.
It's ur basic right to ask about ur treatment & talk freely about ur meds & ask those who can help to help. It will be faster to speak to ur pharmacist & get a full list of alternatives that are safe to treat U. Then u are armed with some suggestions that hopefully ur GP will agree to.
I wish U love and light on ur journey & good luck with ur mission with ur GP.
Hi nikkir, I have found hot stone massage to be relaxing and helpful in pain relief. Unfortunately, I can only afford it once a month but I really look forward to it now. I also find heat pads and hot water bottles help.
At first with the massage I couldn't relax but after regular massage since August I find it easier to let go. I hope some of the suggestions here are helpful for you. I also find gentle stretches and swimming help me, and alternating periods of activity and rest good.
If all else fails I like to stretch out on my bed and take a nap, although it doesn't sound like that's an option for you. Hope you find what works for you. Take care xx
Hi nikkir, was your pain gel over the counter or prescription strength? I found over the counter gels useless as they don't contain enough of the pain relieving ibuprofen.
I understand that your finances are limited. If it helps, my massage therapist advised me to get a tennis ball and put it against a wall. Then you get the ball between the wall and your back and you roll the ball until you find the bits that hurt. Once you find the spots you press into the ball for several minutes.
It's a very inexpensive substitute for massage, a sort of do it yourself. She said you can use a dog ball too, if you have a dog. I do this and then take pain relief and rest. I truly hope that you find something that helps you with your pain. It's horrible and you can get desperate to get rid of it.
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