Hiya,
I was wondering if anyone knows of anything that can help symptoms from fibromyalgia, anything that isn't hard medication, I have heard cod liver oil, tumeric and magnesium.
I want to know any thoughts on this or anything else that people have found that works.
Anything and information at all would be helpful.
thank you.
It is whatever works for you and it does not matter if it is supplied by pharma or a garden. There is certainly more science and evidence as part of the pharma route but the variable is the patient.
Also "natural" does not automatically mean safe or more importantly effective. Plenty of natural things may not be wise for certain people to take as they have negative effects on medication or other treatments... e.g. grapefruit or st James wort are two examples.
Thank you for your reply. That is actually a good point I have never really thought of natural things potentially being bad, so that is definitely something I am now aware of I just didn't think of that.
I need to find something that suits and fast but these things aren't quick.
I have been offered antidepressants to help with the pain but very very reluctant to go on them.
Hi. Sorry to hear that you're struggling. I was like you, very hesitant about antidepressants too. However, I now take Duloxatine 40mg daily and although it doesn't take my pain completely away, it certainly dulls it. To a point where I can get on with my day. The fact that it lifts my mood too is a bonus, I would consider it if at all possible.
I agree about Duloxetine it does dull the pain and helps with mood I take 120mg per day and 120mg of morphine plus top up with oramorph hope you get something that helps you x
Hi Sunflower 022 Having had experience using the antidepressants my advice is to stay off that route. Yes certain ones like Duloxetine seem to work at first but as the dosage is increased to “optimal “ levels your body becomes highly reliant on it. That one is a very difficult drug to get off because the titration is hard to tolerate. It becomes clear that this drug doesn’t get rid of pain, it basically dulls your senses and thinking. I found I couldn’t feel anything intensely including happiness so needed to get off of it. There’s always Gabapentin for folks who can tolerate it. I couldn’t and wound up tossing my cookies. In past I tried a few health store options but found them quite ineffective. I also tried a therapist who tried chatting about a positive outlook, rising at dawn to see the sunrise welcome the day and going on nature walks and other nature based fixes. Pain was stronger than my willpower and willingness to completely upend my whole lifestyle and family commitments. That’s when I went to a pain specialist who was also a neurologist. After a few months of testing and discovering other problems that were also causing me issue the first thing she tried was sending me to a special type of physical therapy which included sessions of deep tissue massage, manipulation, Reiki and a few others I can’t remember now. I did enjoy the sessions and the relief it provided helped but since this was in California after a couple months I had to stop because of the expense ( as per insurance wouldn’t cover all of it) I also tried Acupuncture which helped some of my pain problems but not all. So back to the pain specialist/ neurologist. At that point, because I have additional pain troubles, including the Fibromyalgia, I was prescribed low end Fentanyl patches and suggested to top up with ibuprofen or Naproxen. After several years and moving to the UK the local pain specialist clinic I was sent to were a group that basically used mental assessment and physical exercises to train the body and brain to “deal with the pain symptoms” no attempts to explain or fix. Over following 10 years because of other troubles I’ve been limited to relying on the addition of paracetamol instead of ibuprofen along with the same low level fentanyl patches. Eventually after enough complaining to my GP, I was then given Gabapentin to help (after a disastrous night of projectile vomiting) I now rely on Tramadol (in moderation) for a small help. I intentionally try to limit this because of an odd side effect which I’m not thrilled with … it occasionally causes me to be overly emotional and sometimes heightened vivid unpleasant dreams. Nothing has completely taken my pain away. As I’ve aged I’ve become more disabled with pain issues and several chronic diseases. I figure you just have to keep trying new possibilities as they’re found when the answer alludes us especially if the only other answer has been to dull our brains into submission.
Nature provides options some of which are turned into pills and sold as drugs at the pharmacy and other substances can be found in the field or at a health store BUT neither version is completely safe nor necessarily effective for you. ALL have their pros and cons. I’d suggest trying a few options which are relatively easy to find and are affordable for you whether it’s prescription pills and lotions or the health store along with mental and physical training or treatments. Fibromyalgia stays with you even though some clinicians and advisers believe you can exercise or think your way past the pain. It is possible to train your brain to subliminally ignore the pain but I personally couldn’t. Maybe if we’re lucky in future research science will find what’s the real cause and how to remedy it … the magic button so to speak.
Wish you well in your chosen avenue of remedies.
I found it’s best to try different things until you find something that suits yourself. What works for one won’t work for another. Personally pain killers don’t work for me so I rarely take any. Things I believe do help are keeping well hydrated (this helps with my fatigue), and vitamin supplements (I take multi vitamins, iron, omega 3 and creatine). Also knowing my limits and pacing myself, saving up energy in advance if I have something unavoidable to do, and then giving myself enough time to recover after any activity. This is how I am currently managing but of course I do still suffer with horrendous stiffness, pain, fatigue, brain fog and all the rest. It’s certainly not a cure!
Thank you for your reply.
I actually have a lot of these symptoms as well.
I think it is hard to know what to do from here, for me I feel lost right now.
But what you said is very true.
I can't seen to get a balance right now, I got a very physical job and trying to find different work that isn't as physical is taking some time! I been looking for months on end now and it's a worry I have to just keep doing it and I feel I can't get out of it, even if I feel bad and rough I got to just battle through thr pain all week. Which is so bad most of the time.
Definitely a forever thing and that is also hard to come to terms with as I want to be very active!
Hi, on your offer of anti depressants for pain, they're often used as a pain reliever and can work really well to calm everything down. From personal experience it was the first drug I was offered and I found it really helpful but obviously everyone is different and the only way to know if a drug will work for you is to try it for yourself. As everyone has already said though it's totally your choice x
Hiya,
I think I just worry about chemicals in me. I just know as this is life long, I don't want to rely on medication for the rest of my life. As I don't know what that would really do to me in the long run.
It is very hard.
It's nice it has helped you though, do you find it helps with you pain a lot ?
I can understand that, you've got to weigh up the benefits, if any for yourself. There are a lot of people who don't take any medication at all.
I take a combination of meds and I believe that's quite common for a lot of people. It can take a lot of trial & error to get a mix that works well for you.
Medication certainly takes my pain down to a more manageable level. I don't think I would be able to work without it, I too have quite a physical job.
Also use magnesium spray, epsom salt baths, stretching exercises and a vibration plate regularly and learning to pace yourself is good too. Remembering to pace yourself is trickier 😊
That is true, I like to think I could just cope with it all without anything but It is very doubtful at times.
Yea it must take years actually to find the right mix.
Oh okay well that is interesting because I definitely want to carry on being active and keep working so it may have to be something I even try but just do it for a while and see.
I actually had a bath today with those salts for the first time. How often do you do it?
Also what magnesium spray do you use?
I hate pacing myself lol I never used to have to and it seems to be so new to me that I have to do it.
Usually Better You or H & B own brand is ok too. Stock up when it's on offer or might be cheaper online when it's not.
Tend to use the mag spray more than I do the baths, can't stay in long as I'm really heat sensitive (wonky thermostat) 🥵 usually just soak my legs but others swear by one every day.
Pacing, who new it would be so difficult? Your body will remind you though
Better You Vitamin Spray & large Bags of Epsom /Magnesium salts are often for sale & discounted in price in TK Max stores 👍
Thanks for that, have never tried there. Usually home bargains for Epsom salts but will definitely have a look 😊
👍 yes definitely, Home Bargains is good for the Bathing Salts & for general vitamins & health supplements. Much cheaper than chemist/H&B/health shops etc 😊
Aw brilliant thank you!
Okay amazing thank you. Would you say the better you mag spray is the best one?
I had the salt bath yesterday and it was so hot I nearly passed out.
Hahaha I know right. Like really I hate even having to think about pacing myself, let alone actually needing to.
I'm using the H&B mag spray just now from last penny sale, I would say it's just as good. Also using Lavender Better You lotion at night, it's quite good for your neck, shoulders & wrists, bit easier to apply. Always hopeful it'll help sleep 😴
Okay that is interesting, I haven't heard of lavender better you one, I think getting the mag one today is a good idea if I can. The lavender might smell a bit strong for me potentially I am a bit odd with strong smelling things at times. But I think it is a good suggestion because if the mag didn't work I would put up with the smell. Thank you
Hope it helps, let us know 😊
Sorry just another question about the mag spray, I was just looking and there is a couple, one is for muscles and one is for joints and I think it is the oil one if that correct? Which one did you say worked for you?
Yes the muscle one, the joint one is good on your knees but it has quite a strong menthol smell
Thank you do you still use it on your joints though too?
Yes, I use it anywhere I'm feeling sore. It may be a wee bit nippy first application but it'll be fine after a few minutes so don't worry. Fingers crossed for you x
The first medication that I was prescribed for Fibromyalgia was Amitriptyline initially 10mg at night, it was gradually increased to 50mg, which is a small dose, it works for me. Don't disregard antidepressants completely, your GP will only prescribe a small dose for Fibromyalgia, and they may work for you.
I use a Magnesium spray for the pain in my lower legs, and although I was very doubtful that it would work, I tried it and it's like a miracle, the pain goes away immediately. I use it in the morning straight after showering, I rub it gently into the skin. Some days I need a second application in the evening too.
It's all trial and error, what works for me may not work for you, but I think it's worth a try. I also have a weighted blanket on my bed which helps me sleep.
Hiya.
Oh yes that is one I have been offered.
I do struggle with tiredness and this is one big side effect to it apparently.
I will try not to, I think I will give it more thought for a bit.
I am glad though it works for you.
Oh wow okay, magnesium spray, I haven't heard of that. That sounds so good. I will have to try it. What make is it you use ? Maybe I can see if it works for me.
Someone else said to me about a weighted blanket too but my legs really hurt with anything heavy which is the complete opposite lol.
Good morning the Magnesium Spray that I use is Innovative Naturopathics Magnesium Chloride, sensitive skin formula. I buy it on Amazon. Shame you can't use a weighted blanket. I also found that epsom salts bath was good too, but have only a shower now, so can't soak in a bath 😒. Hope you find something soon that will help you. x
Good morning.
Okay I am just looking at magnesium sprays now to buy today, I was looking at better you one.
I will have a look at that one. Thank you.
I just think weight seems to ache me more.
Yea I shower more than a bath as I have to go somewhere for a bath as I don't even have one lol.
Thank you so much. :))
I don't have a bath either, but I find when on holiday abroad that swimming in the pool helps me a lot, with osteoarthritis as well as fibro, my husband says that holidays should be on prescription as we always feel so much better when we come home! lol 😂
Hi, like many others here, I’ve been living with this horrid fibro for donkeys years. It really is trial and error as to what works and what doesn’t. After all the ‘hard’ pills and potions, I gradually weaned myself off them and tried acupuncture which helped so much with upper body pain. I also found ‘Freezegel’. Comes in a tub or tube or spray, it’s cheap, it’s blue gel and it works for me. Pain in my hips, legs and leg muscles wakes me several times throughout the night, so I rub this gel anywhere it hurts and within seconds you can feel it working. It enables me to get back to sleep for another couple of hours. You can get it on eBay or in local chemists. Give it a try, it might work for you too. Good luck.
I am sorry to hear this, and thank you so much for the advice on this. It is good that works somewhat for you. I have doubt with this now for just over 2 years and I really don't know how the hell I Will deal with this on my life as it is really horrible and forever getting symptoms every day , all day.
Thank you, you too!!
I have taken magnesium, and turmeric and o okersonay not found any difference, I think Vitamin D3 is important and defo helps. I also find acupuncture , reflexology and cold water dipping very helpful
Thanks so much for the tips I do really appreciate it. Acupuncture sounds like a plan to try
Hi Sunflower022As we are all different you can try many of the suggestions offered and see what suits you.
I took heavy pain meds for 8 years and then came off due to gastric damage because of them.
I found keeping a diary of activity,food stress,exercise and what helped was useful.
Talkng therapies may help also.
I do something that gives me joy and delight every day.
I have autoimmune condotion also and many food sensitivities.
I have never been "healthy" so have not grieved for loss of my health but that can be a factor.
I hope you find balance
Good wishes for your journey.
Gigi
Hiya
Yea that always worries me having heavy meds that it will ruin me in other ways down the line. It is horrible to hear you have those issues now!
I think that is a good idea to do the dairy I did start but I always forgot to do it. But really I need to get the routine of it.
Thank you so much. It is lovely having all this advice from everyone it helps!
Take care
I cant recommend anything apart from hard medication as that the only thing that gets me through each day and enables me to work in industry. I feel your pain and have been suffering for 10 years or so I would like to tell you things get better but in my experience they don't, good luck and sorry I can't help you but this platform helps vent some frustrating times.
That is what worries me that it won't get better , I have heard it isn't a progressing condition which I am sure it right but I have found I have definitely gotten worse over the last 2 years quite rapidly! I give you the goodluck right back at you, thank you!
I think for some people fibro gets worse bc of the pain they do less exercise and then that causes muscle wastage which means your joints are less supported and more prone to injury. Being weaker and moving less reduces your proprioception which can make you clumsier too. For me I have other chronic pain conditions which further excite my pain receptors. I do a lot of exercise so I don't have increased muscle wastage but I can't seem to help myself in regards to my pain threshold. So for me my fibro has got better over time but my overall pain is worse.
Now this is very interesting because I have now started to do less and less exercise and I am getting worse I would say since this, so you saying this is a bit of an eye opener!!
Me too! My pain is getting worse 😞
So horrible! Really it is, I hope to god it doesn't continue to get worse from here!
Me too. I look normal but my body feels twice its age. I just pray they find what causes this and some sort of cure one day 🙏
You got to try and not get too sedentary it's so bad for body but also your mind. Build it up very slowly and don't assume bc your pain is worse the next day you've done something wrong. You've gotta retrain your mind too and make sensible adjustments.
It's so hard. If I'm having a bad day pain wise to the point were I cannot move my arms, I sit and wonder what may have caused it the day before? Its a vicious cycle that I agree will drive us insane as we all don't know the answer.
Personally, I just get up and go to the gym everyday regardless of how much pain I'm in. I have chronic migraines and they are generally worse in the morning, as are my other conditions, so I down some coffee and just go, if I think about it for too long I wouldn't go. I'm very stiff in the morning and my pain levels are high so the warm up can be crippling and take longer for me but once I'm warm it feels fantastic. Then as the day goes on my pain creeps back in but at least I get to feel normal for a bit and I'm getting stronger.
I do find I have to vary my exercise a great deal as I can't sustain long periods of the same movement.
Start with something like swimming or dance/zumba style classes bc they're good for the soul. I couldn't do it if I wasn't in a class with other people, there's a woman who's over 90 in my zumba class.
My physio reassures me the muscle pain does not mean my muscles are injured and therefore should not be treated as such. Which is pretty much what the pain clinic said, although as we don't know what's going on I'm not sure any medical person should say such things!
I go the gym 3 times a week. It makes my mood better but unfortunately does nothing to relieve any pain. I've been told there no damage to muscles too.
Well that's really good you go 3 times a week, there are so many people with no pain at all that don't do any exercise!The doctor at the pain clinic said I needed to get my heart rate up high for at least 20 minutes to feel the benefit from endorphins released from exercise. So I found I had to do a bit of cardio for that, which is generally unpleasant. I do weights for muscle stability, bc I'm hypermobile and I've broken my ankle twice, my foot once and my arm twice so I'm quite motivated 😁. Even if you don't get the endorphins your body will at least not loose muscle.
See I told my doctor I've been doing weights at home because my shoulders have been bad and he's told me not too. I believe it's what works for you, at first my shoulder felt worse but now it feels better. It's so strange this fibromyalgia, it does my head in 🙄🤣 but its part of us so we get by best we can 👍you take care.
I don't take any meds for fibro bc nothing helped, I did try many meds before I reached this conclusion, however.Just a word on Epsom Salts, I have a planted fishtank and one of the fertilisers for the plants is Magnesium Sulphate (or Epsom Salts) I buy mine in bulk from ebay it cost me £8 for 5 kg, obviously it doesn't come perfumed or anything but it is considerably cheaper, you need quite a lot for bath so that's something worth considering perhaps?
That is interesting okay, thank you very much. Seems like this soaking in a bath could be a start and to do it regularly. That is a good price too! I wouldn't won't it perfumed anyway! So thank you
Just Google Magnesium Sulphate it's all the same stuff!
Co-enzyme Q10 may be beneficial and also Evening Primrose Oil, although there is no scientific evidence that they help! They seem to help me. I think it is a case of try and see. Good luck!
I actually read these somewhere actually so that is excellent you mentioned this, as I don't know anyone who has tried it, I am willing to try even if there is no scientific evidence at least for a while to see. Thank you good luck to you too!
I tried high dose of B1/thiamin and seems to help, but I reduce down, also the usual multivitamin which include iron, b12 and vit c.
Different things work for different people, I also take medication for stomach acid issues which I take at night and the vitamin in the morning as the esomeprazole impacts absorption.
I also take prescription medication as well- Lycia but can only take small doses due to brain fog and memory issues it can give. They tried antidepressants b4 but that just made me depressed and did nothing for the pain issues which is why I was taking them.
I think didn’t find tumeric helpful but I know others have.
Trial work works for you and give time to see what works or not.
Okay thank you for this , I haven't heard of some of these things, but the vitamins I do take like iron and vit d but I take them separately and not in a multi vitamin anymore. Tumeric is horrible but it is meant to be really good and there has been a lot of things said on it that are positive.
Thank you for your reply
Hi there.
Personally I tried many medications and they made my life either miserable or impossible.
So what helped me?! A change in my diet. In my case sugar, mainly white sugar, causes my fatigue to worsen and flare ups to exacerbate. So I cut that out mostly. (Everyone has a little sweet in their life, but I usually regret it, as the effects are visible within 24hrs). Plenty of water helps too.
Breakfast: oats; blueberry oats, golden syrup oats, whichever. Or an oat based cereal like Jordan’s, or oatibix. (I know, a lot of oats, but I have severe intolerances). Then I have any tablets I have to and multivitamins and probiotics.
Or a fried/ boiled/ scrambled egg or omelette with toast.
snack. Fruit; banana and date smoothie with strawberries/ blueberries.
(On work days I have the egg for breakfast and I add the oats to my smoothie, to keep me going for the day any time I get hungry)
Lunch: some sandwich and a box of fruit.
Dinner: something grilled/ oven baked with some derivative of potatoes and veg.
I also do mild stretching exercises and stay away from stress inducers. I nap when my body tells me to (I.e. at midday, a seista).
I also keep myself mentally preoccupied. Dwelling on pain makes pain worse. So working/ hobbies and prayer, get me up and moving.
When I manage this. The flare ups are few and far between. The ache manageable.
Once we accept what we have, and what’s important in our lives and truly focus on that, organising our other activities around such priorities but also looking after ourselves. Everything gets better.
Look after yourself and things should improve.
This is great advice! Thank you so so much for this and your time to write this out. You diet sounds lovely and really nice foods like I really like too.
The sugar I have tried to cut down on but definitely sometimes find myself almost needing it lol
You are so right on trying to look after yourself, no one I know gets it, and things that I should just get on with it but it is horrible as they don't understand the condition.
Thank you all the best.
I add dates to my food for sweetness. Or honey. But not too much as they can cause your body to get hot and have headaches.
When you get a sugar craving, drink half a glass of water and then your sweet dish. That way you can’t eat as much as your tummy is occupied.
Also, that’s why I have fruits like pears, strawberries, nectarines and apples. The sweetness can be enough for me at times.
That is good to know because I can't help the sugar cravings sometimes it's like I just give in, it can be hard to deny yourself it all the time. I think stocking more fruit then is best , thank you
All in moderation my dear, all in moderation.
Oh, you can replace white sugar with Demerara sugar too. Or cane sugar (not brown sugar- that’s coloured white sugar)
No one truly understands and no one can my dear. It’s ok. It’s different for everyone and it could only be the same if the onlooker was you, with your experiences of life, with your opinions and upbringing, so much is unique to you. So everyone will have a different outlook.
So don’t worry about them. If they don’t understand it’s ok. You can’t fully understand them either. We just have to do our best and be as sympathetic as we can and if we can help, great. If not, … we step away. Better to help than cause harm.
Thank you. I just hope my words help. Take care.
Aw really your words do help, it is really nice to hear and lovely to read that. It is kind of you too, and I always do appreciate advice.
Especially right now I need it the most.
thank you and you take care too!
Hi sunflower. Feel for you - it’s bewildering how to try to sort out a treatment programme for fibromyalgia. As everybody has said - it’s very individual. What works for one person is practically guaranteed not to work for another.
Personally - and I know this is radical - for me it’s sulfites/sulfate that give me the fibro symptoms. If I can avoid them - I feel practically normal. If I ingest any food/drink/medication/toiletries that contain them - I am pretty well back to square one with my fibro symptoms.
The big problem here is that sulfites/sulfates are everywhere. They are are of no nutritional value but they stop spoilage. So they are used liberally to prolong shelf life. The worst culprits (for me) are alcohol/seafood/pre-packaged potato products. But - after a lot of research - I have discovered the chemical is also added to lots of bottled water, swimming pools and paint! So it is - literally - everywhere.
I can only say - avoiding it (as best I can) works for me.
Best wishes Dianne xxx
Hiya,
Oh wow, now this is completely new and a shock actually. I really didn't think of this but it might be worth me at least cutting down on the things with it in that I can.
Seems like that is such a hard thing to do, but really interesting thank you!
I will have a look at my diet and what has this in and take it from there.
I really appreciate your help thank you.
Take care
Processed foods are bad in general and have little nutritional value. It’s better to buy frozen fruit/ veg and just steam them. If you want a …I-don’t-need-to-do-much meal.
Foil wrap fish with salt n pepper to taste with some herbs. And put it in the oven for up to an hour. The fish can even be frozen, as the water will boil in the oven and steam the fish and turn into a nice gravy.
Add waffles to the toaster and cook on frozen like 3 times or add to the oven for the last 20 mins or 30min (I prefer the toaster and the steam from the fish doesn’t let the potato waffles get crispy). And pop some frozen veg in a bowl with a little salt pepper spice and water and put it covered in the microwave for 5 mins or until tender.
The food spends more time cooking than you did sprinkling on stuff and wrapping. And you can get on with your work or chilling in the meantime. It’s just about timing. You can even add tinned beans, peas or corn and have different vegetables combinations or hash browns for variety.
I even add pasta sauce for a different flavour at times.
Obv fresh produce is better, but we don’t all have energy or time so this is a reasonably nutritious alternative.
Hi Saraia. Many thanks for your reply. I do try to stick to fresh home cooked food as it reduces the risk of exposure to the sulfites/sulfate additives. It is very time consuming - so I will give your cookery tips a go. I call it my ‘caveman diet’.
Im the first to admit it is a very difficult elimination diet to follow. But I feel it’s totally worth it to feel pretty much normal. I cant tolerate any of the medications talked about on here. So feel confident in saying my improvement is totally down to changing my diet and eliminating the ‘sulfite/sulfate poisoning’. Well that I choose to call it!
Best wishes from Dianne xxx
Hi I’ve struggled for a few years but I’ve recently started taking devils claw and it’s helping a lot! I walk twice a day if I can xx
Hiya, I have never heard of that one. Thank you I will do some research on that :). I appreciate that , thank you
I am sorry you are struggling, i tried hydrotherapy and had physio which helps a little. I take vitamin b complex and vitamin d ive heard coq10 helps with energy but its trial and error see what works for you x
Thank you for your reply I hope it will get better at some point, all the pointers on here are definitely help for me, and some direction in what to look for and try. Thank you
D Ribose was the thing that gave me a first leg up when I started taking it. It helps with energy and is perhaps a better alternative to dextrosol. I no longer take it regularly. Just the occasional day or three! You need to research it to see if it is good for all conditions you may have, but beware that the internet is entirely contradictory these days. If poss, look for proper studies that are not driven by manufacturers interests. Organic pumpkin seeds are good and perhaps look into your 'sunflower seeds.' - The flower is so stunning isn't it and the ones I've had in my kitchen recently have lasted and lasted. Good choice of name I reckon. Good luck.
Hey Thank you for this and yes you are right I think I need to be aware of what I read sometimes on there, and especially when I am willing to try most things that aren't hard drugs.
I actually like pumpkin seeds too
Awww love it thanks you. Really they are just beautiful and give a little peace when looking at them.
Good luck too and take care.
I read and hear the words of an intuitive in your reply. I think that really helps in the struggle we have. - I've been reading that work is happening on the brain stem and the virus connection with regard to ME , CFS, Our thing etc. There is hope!*?*
There is hope and thank you. Definitely have to keep up with the hope and finding new things out
Whatever you choose to take, please keep a food and pain diary. If you overdose on drugs or even vitamins you can get really sick. So please be mindful and stop taking things if you have bad symptoms. Best to do this with a doctors support, but if you’re on your own, please be extra vigilant. You don’t want repercussions. I’ve been through it myself.
Hello Sunflower022
Have you had fibromyalgia a long time?
Has anything you have already tried helped in anyway?
Hope you have an understanding Gp.
Good luck
Hey
I have been newly diagnosed but been struggling for just over 2 years I would say maybe a bit longer.
I am on cod liver oil right now and vit d so just waiting to see how that goes for a while.
Gp haven't said much to me really so I am putting in the leg work as much as I can
Thank you. You too!
It makes sense to inform ourselves as much as possible, so wise move!
and always good to talk to other people who are also suffering with the same illness.
It’s a wonder your Dr hasn’t said much or offered any help.
Was it the Dr that diagnosed or a rheumatologist?
Have they not even offered a pain clinic referral?
Doesn’t seem fair you get the diagnosis but your Dr doesn’t make suggestions on help.
Hiya,
It definitely helps talking to people who understand.
No I haven't been referred anywhere else now by my doctors. But maybe that is something I can ask them, I think I should.
I know I don't really know where to go from here and I am finding it difficult at times to deal with.
From what I've heard from different people who have fibromyalgia is a high percentage of us have vitamin d deficiency I also have folic acid deficiency but some others have b12 deficiency and turmeric is good as well as magnesium I also take milk thistle to protect my liver from the prescription medications I have to take because of my fibromyalgia and osteoarthritis
Hiya, oh right okay that could make sence and possibly might be an idea for me to try upping my vitamin d at some point. Thank you as I didn't realise some of this and thank you for the suggestions as well! Very much appreciated!
Hi , I am on hard medication, but I find hemp cbd capsules really help, they are very expensive but worth every penny. Meditation 🧘♂️ music helps you relax too. I apply heat to where I have pain, that also gives relief. Swear by my heated blanket. Xxx
Sending well wishes 🙏
Hi,
I stopped taking my prescribed medication for the pain as I tried 2 different types and didn’t really feel like it helped. I am now on a low dose of anti depressant medication and exercise once or twice a week and that really helps me. Since exercising that has been very beneficial. I still get flare ups but i feel I manage it a lot better now. Hope that helps, I think it’s just what works for you really.
None of those have helped,I take duloxetine,amytriptolene,but the biggest difference I have made has been to rest frequently,between doing things.It is the only way I can hold down my job.
Hi, I try to swim in hydrotherapy twice a week. Had Fibro for over 30 years. Defo get worse if don’t exercise and muscles atrophy. I take Magnesium Malate before bedtime, turmeric, Vit D, Duloxetine. I get my supplements from British Supplements as they Do NOT have any fillers or crap in which can affect you. I’ve found a Warrier Balm which is all natural that was produced by someone whose partner has Fibro and it really helps, they have other stuff too, but that really helps. If anyone wants name of company, contact me. I can’t remember the rules on this site about that.
To be honest not sure if helps but found some food items do not agree with me and each time manage to trace an item helps IBD and or pain or other things I have thyroid issues which has a lot of crossover issues and diabetes and gout. Found out years ago could not tolerate pork and minimal amounts of lamb or beef recently read up on FB out 100% should not eat Pork and very limited lamb, beef, duck amongst other items. My daughter is coeliac so I was checked apparently not however so keep investigating and found soya which I do not tolerate is now in bread stupidly though ordinary bread made with wheat flour but no now has soya flour in it traced bread that does not have it in and improved a lot of things. I also found some drugs for pain prescribed made it worse. Just listen to your body and try things
Hello, I've been on Amitriptyline for 28 years, currently 10mgs two hours before bedtime and I can keep active. I'm better in my 60's than I was in my 30's. Although active if I feel myself going downhill I lie down and relax then I can get through the rest of my day. This happened yesterday but ok today. Took years to learn how to go with the flow as it's just so scary when your body does not behave. So many pressures in life do not help.
I also take various omega's and Vit D. I try to have a healthy diet with the odd treat. I build relaxation in when I can too.
All the best.
Hi Sunflower,
I am sorry you have fibro but you have come to the right place for advice as soo many have said everyone is different
I tried antidepressants they just slowed me down. I tried gabapentin and it affected my memory so badly it’s not been the same since (I regret this and wish I’d read up in the dude effects at the time)
Eventually I weaned myself off and as fibro is an inflammatory condition I note follow an anti inflammatory diet think lots of salad and veg and healthy fats. Very little sugar no caffeine no dairy no wheat.
I’m a firm believer in that “the body pays the price” and that soo often many of us have been victims of trauma in our youth and our bodies have Carried this for years and therefore we manifest with auto immune conditions so I strongly recommend talking therapies and reverse therapies that will help you make sense or face up to your past to ensure a better future
But the one thing I wish I’d done years ago is homeopathy; for the last year I have worked with a homeopath and now my inflammatory markers are right down I’m off anti depressants and rarely take pain killers. I have tried all the supplements b12, vit d, co enzyme, curcumin magnésium I think they all helped to a point but now I don’t need them just the homeopathic remedies.
I am not as stiff as I was, only first thing in morning and if I’ve spent too long in the same position. I have a heat pad I cannot live without and I have long hot baths.
I found a job working from home where no one could see me when I was bad and I don’t force myself to do things I take a regular time out just for me so I can be there for my family and it helps.
I wish I’d stayed more active as I do have muscle wastage and it’s hard to get it back! But You can live a good life with fibromyalgia it’s a choice… choose to keep fighting and not give in. Choose to put yourself first and read up on it choose to face your past (if it was problematic) so you can embrace your future.
Fibromyalgia changes all the time, it attacks every part of you I think I’ve literally had it in every part of my body but it favours my back which hurts constantly- I’m working on this with my homeopath and believe I’ll be better soon
I wish you the very best in finding what works for you but homeopathy is the thing I wish I’d tried first.
Warmest regards xx
Hi sunflower, one of the main things is to strike the right balance between activity and rest. if you don’t do that you are actually defeating yourself . If your pain is being wound up more than it is being wound down then you are in negative balance and fibro will crucify you. When I was working as a teacher I fought against resting and pacing until I was on my knees exhausted and in lots of pain. I was being admitted to hospital in out of control about every six weeks so in a mess and miserable. My consultant said stop battling it and work with it. Find out what your triggers are..what winds it up and what settles it down for you. We are all v different. For me any over head arm work like hanging out washing on a line or hoovering or ironing were all winder uppers of my pain so I simply stopped doing it, got someone else to do it or found a diff way to do it. Rest, relaxation, de stressing is really important. I realise it is difficult to rest regularly at work if it’s a physical job but pushing on when your bod says rest will just make you worse. You dont have to stop all activity just the stuff that winds you up. Repetitive seems to be the worst so change activity every ten/twenty minutes or so. In teaching I was given a downstairs classroom with no doors (couldn’t do doors or stairs) and I would sit a bit, walk round a bit, bend a bit, change movements often. Also when you sit and relax or travel support everything with cushions and heat bags to take the weight off tendons and ligaments and relax muscles with the heat. Always support your neck with a little something behind it when sitting and put cushions under your arms to take weight off neck and shoulders. . Sounds daft but all that relief from arm weight. Etc pulling on things adds up and helps.
Re meds take a good round the clock pain killer like paracetamol regularly and back that up when in flare with whatever stronger pain killer helps you. For me it is paracetamol 3x2 through the day and I add Tramadol to bedtime doses. I have lots of supporting pillows in bed to keep the drag off joints and attachments so legs, arms, back all supported. I knew I had a good consultant when he asked how many pillows do you sleep with…6 or 8 lol.
One of the best exercises for fibro is warm water swimming /pool therapy. Don’t try to do a million lengths just stretch and move your body every which ways and enjoy the warmer water. I also use a thera cane which is to apply anti inflammatory gel to trigger points in my muscles. Helps a lot with shoulder blade and rib side pain. there are some good books on trigger point treatments with the Thera cane. Again find whatever works for you.
I do a lot of gardening as I have a big garden but in any hour I will rest very regularly 15 mins on 20 mins off, and afterwards take a warm shower and then rest some more. And I don’t garden every day to let things settle down. Our muscles do not repair as fast as normal folks and all those little micro tears take weeks to heal in us but only days or overnight for non fibro folks.
I use a stairlift and that has helped a lot. I have sets of cushions to support my arms etc in my car when I am a passenger and back support when driving. It’s is a case of learning what best comforts for you. Heat helps me so I have teddy fleece bedding, so soft and warm, and lots heat bags and hotties. I hope you find your way through the minefield of what improves you v what makes you worse. You will feel better once you can manage that. Good luck and feel better soon.
HI HAVING HAD FIBRO FOR 20 YEARS FINDING SOMETHING TO EASE THE PAIN IS VERY DIFFICULT I HAVE TRIED ALLMOST ALL THE MEDICATION AVALIABLE EVEN MORPHINE PATCHES .I THINK IT IS THE MOST MISUNDERSTOOD ILLNESS I HAVE EVER KNOWN .SOME DAYS VOLTOROL RUB FROM MY GP AND DICLOFENIC HELP ME BUT THEY CARRY HEALTH RISKS BUT THATS A RISK I WILL TAKE TO MAKE MY LIFE MORE BEARABLE .HOPE THIS HELPS .BEEBEE
The only help apart from codeine ( plus constipation !!!!) is hot water bottles for me
Hi Sunflower022, I admire you,
I hope you find that elusive pain relief with out the chemicals, Sometimes you have to kiss a lot of frogs (I try to use humour and a pint of irony thrown in ) When I was diagnosed with fibro I was also told I have Hypo thyriodism, Restless legs,cholycystilis there's more but I don't want to clog the page up 😑 It might take a while to find what suits you best and dont think just because something didn't help the first time It might work the second time,
I found myself getting cross with myself because I couldn't do things I loved to do, The worse was gardening and keeping a beautiful well kept home, I had to give up work. I just found myself slowly but surely turning into a hermit and not going outside of my house alone, and only for appointments, The depression and anxiety kicked in,
😭It got so bad If someone knocked the door I would hide in my room, What the chuff?? So my bedroom is my safe place,
I used to have a long warm bath, That was exhausting (terry toweling dressing gown straight out of bath because too tired to dry myself,
My weighted blanket is my friend but not whilst heat wave. A little expensive but worth it
Now I am totally on god knows what?All the biggies, amertryptalin, tramadol, fluexetine and anything else they chuck at me, I've lost whatever fight I had,Now i am at number 5-7 on a normal day and 9-10 any other time, The meds are no longer helping me . I really hope you find the right comp
Pineapple - Fresh Cut - ONLY FRESH CUT. no canned - 2-3 chunks after a meal..I got incredible resutls in 48 hours. Don't over due the pineapple. 2-3 large chunks after dinner. Pinapple has two very important enzymes! Bromelain is one.
nccih.nih.gov/health/bromelain
Start that today!
EmergenC +Immune Support - has a great combo of finely ground ABSORBABLE vitamins, minerals..that goes right into your system. 24-48 hours..I felt so good the next day. Do it twice a week!
emergenc.com/products/enhan...
DIGEST GOLD
Helps breakdown nutrients after meals. You need to get those nutrients into your body. its a HUGE factor in fibro pain. If you are also hypothyroid..your metabolism on some of your organs..especially skin is slowed down. Like half life. This is why rats who were made hypothyroid had their lifespans almost DOUBLED! Some part of your system is running at half speed..others is normal speed. Healing is a strange process in Fibro patients. Its a major factor.
sciencedaily.com/releases/2...
karger.com/cpb/article/51/1...
Ok..also..DONT LOOSE ME ON THE NEXT ONE. Im serious..its was the cherry on the sundae for me and anyone else I introduced it to.
Pipe tobacco. YES... (NO..not cigarettes) organic pipe Tobacco!!!
No one was dying of lung cancer till after the late 1940s or rather soon after they started to add "filters". Native americans smoking it for hundreds of years. They were living to 100. There is a good reason why.
Stock up on it while its available.
smokingpipes.com/pipe-tobac...
They are starting to take the information down on organic tobacco. 19 scientific health benefits..including BLOCKING VIRUSES was on a site which had them listed and explained..data backed up by studies on PUB MED. Verified going back to the 1920s. No one was dying of cancer until they started adding the filters and chemicals to the plant for long term storage. The cancer started in the 1950s...after they started mass production. Grandfather confirmed they rolled their own and no filter. No one was getting lung cancer from their own cigarettes.
The information on the 19 listed benefits of organic tobacco was recently taken down!! Here it is on wayback machine. Print it..save it.
web.archive.org/web/2023013...
My doctor even started doing tobacco because she was having inflammation in her hands..soreness and stiffness..went away after 20 min. Did not come back.
BONUS...I get the BEST DROWSY sleep on pipe tobacco. I now can fall sleep early without pain... all night long. Local cigar shops might have it or order Sir Walter Raleigh (aromatic) online. Its quite pleasant. 2-3 good inhales..hold and release. 2-3 times a week.
smokingpipes.com/pipe-tobac...
This is no joke. I was told by my rheumatologist that im his healthiest and best functioning fibro patient. I can get out of bed and do chores and even some garden work..can't bend down too much...He said.."keep doing what you are doing."
ANYONE ELSE reading this..please try these..you have NOTHING TO LOSE. Its cheap and accessible. Please..if you do try any of these include a reply to this post..and SHARE it among FIBRO groups. ALSO save this info...Pharma doesnt like it when you share things that dont make them money!
I use devil's claw, magnesium, vit c and d
I use devil's claw, magnesium, vit c and d
I was diagnosed back in 2016 with fibromyalgia but thinking back had mild symptoms for about 2 years prior, I also have multi level cervical spondylosis with nerve root impingement. I also have Hypothyroidism and take Levothyoxine and Raynaurds and take Nifedipine.
I also had a gastric sleeve done in 2011 removing most of my stomach and have some absorption issues because certain minerals need gastric juices to help them absorb. Unfortunately doctors were not aware of how a gastric sleeve could affect absorption so by early 2016 my iron levels/vit D levels and calcium were critically low, plus I should have been advised to take a multi vit/mineral supplement due to reduced dietary intake but it was only really bypass pts who were strongly advised to taken them so these deficiencies may have played a part in the development of the fibromyalgia plus I was in a highly stressful job working long shifts in a nurse led assessment clinic often without an adequate break.
In Oct/Nov 2015 I became quite unwell with what I thought was a virus and was off work 3 weeks with severe muscle pains and tingling in my arms but this was just the start and I spent 7 months on the sick, I had MRI scan which showed severe nerve impingement in my neck and I had enough points on fibro assessment to convince the GP that I should be referred to a Rheumatologist for further assessment . For pain control I was initially on Tramadol 50mg in morning and 50mg at night only & Pregabalin but much of the time I didn't know what day it was and when I became tired I couldn't walk a straight line so I reduced tramadol to night time only with co-codamol during the day, then after 6mths I stopped the Tramadol altogether.
I also had 2 cervical nerve root blocks and physiotherapy then when I tried to return to work at start of June there had been a lot of changes with a few new practices implemented and even though I had a reduced workload at first I could not keep up with the stressful workload and was getting forgetful making stupid mistakes and so only lasted 2 months and had to go off sick again as I didn't feel I could work safely, then by Jan 2017 my health got so bad I had to accept I would not be able to get back to work so with recommendation of the Occupational Health doctor I was offered early retirement and receive a small NHS pension (a far cry from a full salary) plus I qualified for ESA benefit. Because I was not coping well on Pregabalin my GP switched me to Gabapentin 300mg morning and 600mg night, some days I could barely drag myself out of bed but I was determined not to be beaten. then because my neck was getting worse I was prescribed Duloxetine 40mg twice a day and it works well with Gabapentin and Co Codamol.
Initially when I finished work I spent a couple of years trying various supplements to see what worked, I tried probiotics to help heal my gut as many medications are absorbed in the gut including Levothyroxine, I even went vegan for about 14mths. but couldn't stick it out then I then started taking vit B12 (Methylcobalamin) 1000mg twice a week, Magnesium along with A-Z multivit/mineral (alternate days) then turmeric /black pepper plus I am now on lifelong Ferrous fumerate and Colecaliferol
So far I can manage light housework a little bit shopping which my hubby takes me out for but this all depends on the weather and the air pressure/humidity (I have an app on my phone to alert me), I find I have to be wrapped up when I go out to stop my neck muscles contracting which then causes pain. At night I have to have several blankets on top of duvet to provide weight otherwise it feels like my nerves are tingling and I can't sleep.
Everyone is different and if you have multiple conditions it may require different interventions than one condition alone so its all trial and error to see what works for you.
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