anyone who has managed to get their fibro under control with lifestyle changes. My pain and fatigue has been getting progressively worse. I still haven’t mastered pacing properly although I have had to slow down considerably because of this condition. I spend several days on the couch with no energy and racked in pain. Then I get a bit better and start functioning semi normally then I obviously do too much and wham! Cycle starts all over again ! I would really like to hear from people who have been in my position and are managing their symptoms through life style
changes.
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I am in your position but rarely have many days where I feel like doing anything but if I do exert myself, I suffer. so frustrating. feel not like 79 not 49. x
I also think it depends on the medication you are taking🤔 I stopped taking anti depressants and reduced tramadol by half! I am so much better in myself and feel more alert and in control most of the time! I still have bad days, and times when I'm totally overwhelmed by the illness. I don't think we'll ever be 100% better, but it's going to be a long process. I wish you the best of luck my friend. Much love..... Ninja!😍😍
The anti depressants were easy, I'd already made my mind up, and after reading up on natural remedies and CBD OIL, (which I take daily) I managed to get off them within weeks. Tramadol was a little harder and I didn't want to crash and burn.... so I missed lunch time dose for a few weeks and then the night dose! So I'm on 4 instead of 8 per DAY! That's all I take, apart from a very high dose of Vit D3 and Vit B complex. Good luck!😍😍
I was taking CBD Oil but found that it made little difference and there's not much research to suggest that it can. Have you found that it helps? I don't take any medications and don't want to, so my go to is physical therapy, yoga (which I find painful) and increasing my exercise through swim therapy classes. Have the vitamins made a difference, as well?
Thank you so much for your reply, Ninja . I agree that medication can define affect the way that you feel. I’m so happy to hear that you are feeling much better in yourself and hope that you have very many good days. ❤️xx
Thank you for your helpful reply. I will ask my go about these courses next time I go. I know what I should be doing but definitely need some support in order to carry it out. It makes so much sense when talking about pacing but putting it into practice is so hard! Have you had success with managing your sleep, stress levels , pacing etc. ? Xx
Really appreciate your detailed reply . You’ve given me lots to think about and some things I could give a go with. - your sleeping tips and keeping a daily diary. I’m like you and find relaxation really difficult to deliberately focus on. Anyway, sounds as if you are really trying to be proactive in managing your symptoms and your text has really helped. Hope you have a good weekend and keep being positive in your approach to this horrible condition. 😘xx
Im a massage therapist and have a few clients inc friends that regularly come for aromatherapy massage
The slow, deep yet gentle rhythmical movements help with their relaxation, anxiety, stress, chronic pain & fatigue and im often told it helps them to actually sleep restfully that night. My treatment room is dark with an orange salt lamp glow and mix that with aroma oil helps aid relaxation - maybe this is something you could try in your bedroom too!
Warm baths can help soothe & relieve some people’s symptoms
Ive heard SLEEPY from LUSH is also very good for helping sleep too - i believe this is a Lavender moisturiser you pop on before sleep
I think that you need to find what works for you & were all different so different things will work for different people. I like the idea mentioned earlier about keeping a diary as that may show a pattern of when youre most fatigued and that info will equip you to handle your pacing better.
I am also waiting on repeat blood tests myself for a diagnosis of Polymyalgia and or Fibro - i began by taking a multi vitamin to up my D intake. The GP said i was severely low & levels have increased into the expected range. I also have CBD oil and find it helps a little but i admit i do often forget to take that!
I hope you figure out the best way of managing the symptoms for yourself xxxxxxxx
Thanks for your detailed reply. I must say that I found the aromatherapy very relaxing and had been the only massage that had not left me in extreme pain. During the time that I was getting this on a regular basis my symptoms did improve so you have got me thinking that I should have some more sessions as it was quite a long time ago that I had aromatherapy. Your tips and what is working for you are really useful so thanks again for taking time to reply. I hope that you get some helpful results from your blood texts. Xx
You can do a Postal VitD Home Test for 28 pounds from City Assays in Birmingham - website of the same name - a Birmingham Hospital. Sometimes GP's and Labs are slow to test vitD - but you could try. Your result needs to be in excess of 100. When taking high doses of VitD it is advisable to take important co-factors - magnesium and vitK2-MK7. Magnesium works with VitD in the body and K2 directs the improved calcium levels away from the arteries and into the bones and teeth.
I live in Crete and tested insufficient after several years of being in the sun ! I take 5000 IU's in summer and double it for the winter. It is an anti-inflammatory steroidal pro-hormone - so much more than a vitamin ! Many people are low in D and it is not just our bones that need good levels - every cell in the body has a receptor for VitD3
As there are many causes linked to fibro it may be worth checking out other things that may cause fatigue. Low iron or anaemia for example. Checking B12 - Folate - Ferritn - VitD would be helpful and are not routinely tested with your GP - they need to be requested.
B12 is good over 500 to prevent cognitive decline - Folate and Ferritin around mid-range and VitD over 100. So many GP's say Normal/OK/Fine - when they mean - in range - but it is where you are in the range that is important for wellness. Also you are legally entitled to have copies of all test results and ranges - so you can monitor your health and check what has been missed ! Surgeries should now have records/results on-line - but not all have managed this. You could check with yours
Finally the number one symptom of low thyroid is fatigue - and again the NHS rarely do all the correct tests. Testing the TSH - Thyroid Stimulating Hormone - is not adequate and tells you VERY little about the Thyroid as it is a Pituitary Hormone. Important to have the FT4 and FT3 tested along with the anti-bodies TPO & Tg. T3 and the second anti-body rarely tested in the NHS and so people are missed. Also results are poorly understood.
Thank you for your informative detailed text. I am under a consultant at hospital so will ask about my thyroid . I am also underweight because of the way I feel . Am wondering now if this could be a contributing factor to my fatigue? I eat bug only because I have to not because I am hungry. The fatigue makes me nauseous and just generally unwell.
As mentioned above you are legally entiiled to have copies of all your blood test results. There are websites that help you understand your results - and also there will be people here to help if you have a problem, Sadly Docs say things are negative/normal when they mean in range - but as I said above it is where you are in the range. eg, If your B12 result is 195 - they will declare you normal/negative - but you need to be over 500 to prevent cognitive decline and neurological symptoms. Ranges are too wide for poorly people ...
Have you been tested for PA - or Pernicious Anaemia - it can be a cause of weight loss due to lack of stomach acid. Symptoms for low stomach acid are similar to raised stomach acid. From reading the link I have posted for you below you can see it is very poorly understood in mainstream medicine ...
I haven't really managed the fatigue but I have managed to reducd the pain side of it to the point I don't take daily pain relief. It took a year or so to get to this point.
I suspected the cause was my body over reacting to some irritant. I had awful IBS so I needed to do something about that. A dietician advised me to swallow a tablespoon of golden linseeds every day as they protect your gut from irritants. At the same time I switched to the lactose free milk by Orla and i avoided bread for 6 months.
I still eat hard cheese because it has little lactose and I don't avoid other products if they have lactose in them. For my body it was enough to just change the milk.
I avoided bread because I believe some breads have extra yeast in which then goes on to ferment in the gut and bloat me. I now only eat the more solid rustic type rolls and loaves but only a couple of times a week.
This worked for me. I can't weight bear on my hands and I if I strain my muscles in an exercise class I pay for it but I otherwise I can do normal walking stuff and be fine.
Thank you for your tips on diet to help pain. What you have done sounds manageable and worth a go . I’m glad that you have reduced your pain and hope that you can do the same with the fatigue. Please let me know any successes. I’ll do the same! Xx
Hi I am fairly new to all this having only been diagnosed last year and I am still trying to get to grips with pacing and avoiding the boom & bust scenarios. I like Ajay sent my alarm much earlier than I actually need to get up, although I need to get up at 6.45 for work, so usually set it about 6am and then I read and stretch out some of my muscles in bed. I work full time and commute into London all of which I find an immense struggle and it leaves me little energy to do anything outside of work. Luckily work allow me to take additional breaks if I need to so I can go and sit / lie down and it does help.
I now do less ironing, I also got a lightweight cordless stick hoover and a long handled feather duster for housework, but I only do housework a bit at a time instead of going mad and I take time to sit down when I can, I have a reclining chair which is great as it maintains a good posture but lets me relax. Thankfully my OH is a great support and does a lot round the house / garden, including most of the cooking.
I take a low does of nortriptyline at night which helps me sleep and I ensure I take it 12 hours before my alarm goes off to reduce feelings of grogginess. I also take etoricoxib for OA pain and slow release tramadol for fibro, but just on days when i really can't manage. Supplement wise I take magnesium, vit D and glucosamine.
I have found that walking really helps my pain levels, on days when I don't walk my pain is much worse, so I walk if I can, even if just for 5 mins with my walking poles. I also have a rebounder (like a mini trampoline) which I use on days when I have a bit more energy, I use it whilst watching tv and just walk on the spot on it and some little bounces where my feet don't leave the mat.
Thanks so much for your detailed text. You are doing so well managing to work full time. I was a teacher . Luckily I wasn’t struck with fibro till I retired. I would find it so difficult to work now . Your tips for less ironing, housework and recliner chair are similar to my situation. I like the idea of 12 hours between meds and alarm going off. I take pregabalin at night and a low dose tramadol morning and evening for pain . I love walking and find that when I am walking I am not so sore but when I stop I seize up . Maybe I have to cut back how long I am on my feet? ( boom and bust ) ! The rebounder sounds a good idea. Where did you get it from? I hope that you can get lots of rest in between work and keep managing your conditions . Xx
Thank you, I use scholl orthaheel inserts in my shoes & they do help prevent the the tired achy feelings in my feet & ankles after walking. I've had to accept that I need to walk slower & the walking poles really make a difference.
I got my rebounder from a company called Rebound Fitness & it's called a bounce & burn! Don't be tempted by the cheaper ones you can find they just don't last.
Hiya, I have been embarking on my symptoms self improvement plan which includes diet changes.
Firstly I weaned myself off the pain meds as they weren't helping and just made my fatigue worse. I found stretching exercises really helped even though in the beginning it was an incredible slog. just getting five mins of fresh air made all the difference and if you can walk a dog that's even better as they will force you to walk them!
I have given up meat which was awful to begin with and now just eat quorn and all types of fish and lots of veg, salad and berries. green tea is great infused with honey.Takeaways went so did ready meals. Now have a strict diet from the moment I get up to the moment I go to bed supplemented by a high protein vitamin low fat shake each day. I now make up a bowl of salad with spinach which I found really helped and a herb salad mix, cucumbers,onions are ok and add seeds and extra virgin olive oil, tomatoes and peppers definitely are a symptom trigger so had to reduce this. I buy spelt and the bread or make my own rosemary bread which once made can be frozen. Cous cous, potatoes with skins and rice are now my friends. I know it can be expensive but do buy organic veg with things you can't peel. almond milk I found the most palletable.Eat little and often and get rest when you need and don't fight it. I found little craft projects and setting goals however small keep me motivated. I am not cured but where I was and where I am now is world's apart. I now can work part time, yes there are days when it's too hot or about to rain just too painful and confusing to get out of bed but those days are very far between now, I found that a relaxed, chilled attitude with a good sense of humour goes a long way to achieving a bit of escape from this awful condition
Your text definitely is a great help, thanks . It is great that so many people have shared their ideas for managing fibro . I’m sure that a lot of people on this site will benefit from these ideas . I like the idea of eating little and often, rest when needed and don’t fight it. This should not be too hard to do! At the moment I don’t really want to experiment with diet as I find eating quite difficult at times and therefore just eat what I fancy . However, I think what you have done is great and when I get over the nausea I would like to try some of your tips . 🙏. Glad to hear that you are handling our condition so well . Xx
Diet affects everyone differently. I eat the Paleo way.I have done for several years. Recently I've modified it so I've reduced the animal fats and eat more veg and use veg oil like Avocado and coconut.. BTW reading some other dietary advice. I try to eat natural foods, Not man made adulterated ones. Quorn is a man made by product of Mushrooms.Its chemically treated and isnt even classed as food by the rest of the world.Only the UK have quorn. Just my opinion!
That's interesting about quorn. I don't eat it often but have recently made a few meals for the freezer with it. Will definitely do a bit more research in it now!
Thanks for telling me about your diet. So many people recommend quorn that it is interesting to hear something negative about it. All the diet ideas that I am reading about here have really got me thinking! Xx
Maybe bugs 🐜 would build us up! 😂 I have started drinking whole milk and eating yogurts , ice cream 🍦 and things that are easy to eat but have calories. I don’t think people who want to lose weight realise the battle that some of us have to maintain a healthy weight. You sound very much like me . I have a bath every night to ease my sore muscles and a shower in the morning to warm them up . I try to do some stretches in the shower . Maybe I’m washing myself away! Anyway thank you for your reply and I hope that you have a good spell with not too much nausea and fatigue. I have been given anti nausea tablets from the doctor that help when it gets too much. Take care. Xx
For me I feel that you just have to do as little as you can when your able to . But don't over do it . Then the cycle starts again .... so just do as little as you can when you feel up
To it and rest when your body tells it to rest .... xx
You're welcome ... having been there and done that i can only say from my experience ... but my stroke recently has made my fibro even worse and I find I'm tired all the time .... but I'm still not giving into an afternoon nap as much as I need it some days xx
Its really difficult to pace as when you feel good you want to cram in everything you couldnt when you were ill. I pace much better these days as I cant do much so if I know I'm going out one day I rest for 2 days before and usually 2 days after. I space my calendar accordingly and if I'm asked out and its too clost together I say no to one of them.
I went on a course when my M.E was diagnosed as I was in a boom or bust cycle and I learnt to rest more. Even if its 5 minutes every hour, or whatever. I also learnt not to be on the computer and have the TV or music on at the same time as its wearing on the brain and if I overload my brain I conk out and have to sleep in a dark ,quiet room.
As far as Fibro pain and flares go,I have been so much better since I've been taking CBD oil. Personally I'd prescribe it for every single Fibro patient! Have a read around.
Thanks for your helpful reply. I have CBD oil. I was full of hope but then I went through such an ill phase that I couldn’t bear to put anything unknown into my mouth . I still have a variety of oils so think I will try again. Xx
I think I've found away to stay pretty level BUT this week stress has got to me ( out of my control, suspect I've been conned but trying to prove it....v complicated) apart from that I do this:
Can't take prescription meds due to side effects so I follow Dr Mylands main recommendations---4 vitamins. I also take hemp oil daily, turmeric, selenium and folic acid.
I've found certain foods trigger fibro pain so I eat a very plain diet with nothing that affects me adversely---- lots of fruit, veg, quorn, eggs and cheese for protein. No gluten and minimal potatoes and gluten free bread. Boring but keeps the pain at bay.
I try to do no more than 2 "big" things a day----- vacuuming ( lightweight cordless vacuum) and steaming over the floors ( I have no carpets) is one job. On a good day I might add in a third thing but pacing is the one thing that's helped me get back some control over the fibro.
Anything that'll save work--- a dishwasher, online grocery delivery, getting rid of any clutter that needs sorting/dusting is worth it.
My next ambition is to get rid of the stress in my life ( created by others!) and move to a quieter, less populated area.
Your text is so helpful-thank you. Your diet sounds quite easy to follow and I am s very plain eater so this might be worth a go. I am having such a bad flare just now. Pain out the roof, feel nauseous and sleep disrupted! I’ve had so many positive replies . It is so encouraging to hear that it is possible to manage this horrible condition. I hope that you manage to remove the unnecessary stress from your life and eventually manage the move that you crave. Take care and thank you again for all your great ideas. Xx
I have changed my lifestyle and reduced my pain levels by around 70% and vastly improved my flexibility and got rid of brain fog and have most of my energy back, sleeping is the most difficult but I can now get up to 6 hours without waking. It has taken a while to get here but has been worth it. I don´t take any drugs but I do take a lot of supplements for inflammation and energy and do a lot of stretching and excercise and eat a particular way, and go to a hyperbaric chamber to breath oxygen under pressure, also use chinese herbs. I am retired so I have time to do all these things, and have been able to search for cures or at least learn how to lessen the effects of this syndrome. the details are quite long if you would like to know I will post them for you.
I would really like to know how you have achieved so much success. I too am retired and have more time to work on managing this condition. Unfortunately I’m not doing too well and will gratefully receive any ideas , successes that people are happy to share with me. Thank you and it is so lovely to hear that you are doing so well. Xx
Excercise. I go to a gym every 2 days and do aerobic excercise for 30 mins and slow stretching for 30 - 60 mins, based on pilates stretches and strengthening, as these are more gentle than yoga or anything else, I cannot do weights as it causes flare ups. Obviously I did not start at this level, but built up to it. At first it was agony and I did not want to carry on, but the more I stretched the more mobile I became, and i had to start from the beginning again quite a few times. I also found a good physiotherapist who teaches pilates and go for an hour a week to work on the muscle stiffness and knots, and mobility.
I go to see a chinese herbal doctor who gives me accupuncture, and herbs to help, in particular some detox herbs that I take at night and definitely help me sleep better.
I read a study from an israeli university about treating fibro using a hyperbaric chamber breathing pure oxygen under twice normal atmospheric pressure, for one and a half hours a day for 2 months and doing this cured 75% of the participants, so I joined the local M.S. charity which has it’s own chamber, (there are 60 odd centers around the country) and had 80 one hour sessions, to see what would happen, so the result was that it cured my brain fog in the morning and most of my fatigue (at 70 it’s not possible to know how much is age and how much is fibro) but it did not get rid of my pain. I still go once a week and it seems to improve my cognitive abilities and keep my head clear. So I started looking at supplements and diet. My take on this next bit is to cut out anything inflammatory and look for any deficiencies in the diet, and take supplements and eat things for energy.
So, I cut out sugar, caffeine, dairy (mostly), cut alcohol down to the odd glass of wine and was prepared to feel worse if I strayed, wheat based products, and started eating organic in order to cut out the toxic chemicals from the pesticides and fungicides that are sprayed on most fruit and veg. Carbohydrates need to be cut down as well as they turn into sugar in your system and I definitely feel better if I eat mainly organic vegetables and proteins with small amounts of carbs.
There is a woman doctor called Dr Terry Wahls who has written several books on how to cure autoimmune diseases using diet, and I recommend reading her stuff as she has managed to put her M.S. into remission using diet, and she recommends the same protocol for fibro.
Supplements.
I think each person has to experiment with these over a period of time as each of us is different, this has taken me 5 years to get to and I am still experimenting and learning, there is a wealth of knowledge out there on the internet, and I have been searching for a while.
I use:-all organic and have to take for at least 2-3 months to see if they work for you
Magnesium malate 1000-1500 mg in the morning
Magnesium bis glycinate 500-800 mg in the evening
This helps the muscles relax and aids sleep
Curcumin extract with piperine 200 mg twice a day for inflammation
Ginger 500 mg per day inflammation
Vitamin D3 3000-9000iu/day inflammation and energy
Vit K2 2500 mcg per day clearing arteries and should be taken with D3
Hyaluronic acid 300 mg per day.
( this is for arthritis and needs to be taken for at least 3-4 months before it will have an effect, if it is going to work for you, it did for me and now I take it every day and have no pain or swelling)
Coenzyme Q10 for energy ( there are many different strengths on the market, I use basic Mitoq brand which is expensive but I like the science behind the product and I definitely noticed a difference in my energy levels after about 6 weeks)
PQQ pyrroloquinolinequinone 20 mg per day again for energy ( both of these last two products act at a cellular mitochondrial level to help give energy and as antioxidants)
Quercetin up to 500 mg per day anti-inflammatory
Zinc piccolinate 15mg per day anti inflammatory like magnesium most diets are short of zinc.
Astragalus 700 mg per day
Rhodiola 500 mg per day these are adaptogenic herbs that both are anti inflammatory and give energy.
Cordyceps sinensis 500 mg per day, this is a chinese mushroon powder that boosts the immune system, which I have been using for 10 years and as a result very seldom get colds or viruses.
Omega 3 oil Anti inflammatory. this can be fish oil or flax seed oil , you need to read up about which one would suit you as there are many differing opinions,
I take scandinavian rainbow trout oil as it has no heavy metals
Vitamin B complex . generally helpfull for fibro. I use high strength 5000 mcg patches as they are supposed to assimilate more into your bloodstream than taking it orally, I notice an immediate effect on my mental clarity.
Probiotics high strength 50 billion organisms per capsule enteric coating a must. There is a school of thought that suggests that all auto immune system problems come from the gut. Which can be disrupted by chemicals in food, so to combat this eating organically where possible and using probiotics to help heal the gut can help the symptoms of leaky gut etc, so I take a high strength probiotic every morning on an empty stomach and in my morning nutribullit mix of fruit and veg I add l Glutamine and Macca root, both of which help to heal the gut, and I no longer suffer from irritable bowel.
Most of these products can be found online at Amazon or from individual producers, of which there are many, and as I go along I tend to try different ones to see if there is any change in my reaction to them, they tend to be cheaper on line, but I only buy from reliable sources, and it is necessary to do a bit of research.
That’s about it for the time being, hope this is helpfull.
Hi Chrisbel. Thank you so much for taking the time to explain in detail how you have managed to help yourself with fibro. You’ve given me so much information. I will try to digest it and then experiment with one or two ideas at a time. I can’t get over how kind and helpful people are on this site. Thank you again for sharing. Xx
I’m 70 and although I was not diagnosed until 9 months ago I believe I have had this condition for 10 years or more. I take tramadol fir the pain but have recently found that vitamin B12 complex is helping me a lot. I am never without pain but at least I can function now most if the time. Please try it. I got mine from Holland & Barrett and have recently progressed to two a day to combat tiredness. Hope this helps.
Thank you for your kind helpful reply. Great to hear that you are doing better. Will give B12 a try as lots of people have recommended it. Did your bloods come back normal? Xx
Have you heard of the Fibro guy? Lots of positive journeys back to wellness on his website/blog, Facebook and he has just written a book which is fab and well worth a read!
His approach may be regarded as unconventional to some however I find it refreshing and his programme has me back doing far more than I ever thought was possible, I may even get to ditch the Fibro label in the not too distant future and start once again living life to the full!
I haven’t heard of fibro guy but have just googled and sounds really interesting. Think it’s the sort of thing that I would like to follow up so thank you so much for telling me about him. What is the book called? So glad that you are doing well and it is so nice that you are helping others ( me included) . Xx
Sharing is caring! The book is called No Pain, No Pain written by Adam Foster (aka the Fibro guy) alongside Dr Mairi Harper and in my opinion is a good read for anyone who experiences chronic pain. 📖 💪 😊
Thanks . I’m going to investigate the pain guy first but will note reiki. We have to keep trying to get something that suits us as individuals. Really appreciate your help. 😊
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I would love to know your thoughts on 2 questions that buzz around my head
More pain than I can handle
I need help with painkillers please!
Pain appears to have ensured I turn to insanity.
