Has anyone chosen a holistic approach... - Fibromyalgia Acti...

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Has anyone chosen a holistic approach to fibro?

Epea profile image
Epea
68 Replies

12 years ago I was diagnosed with fibromyalgia. visits to the doctor had them getting out a book, which gave me no confidence they had answers so I've done my own research from people who suffer and books about it soooooo much information.I've also tried many recommended meds. Yes medication relieves pain but often had side effects tiredness itching no energy....so I tried eating certain foods and eliminating some too the difference was massive. There is no cure just the ability to reverse effects the only pills i take now are vitamins.its hard to keep healthy but if I slip i pay the price and have to reign it in again but I was in a wheelchair now I 'm not and I'm able to do gentle exercise at the gym and on bad days home no more horrific cramp no more stabbing pains skin hives and I can open a bottle of water myself, turn key in my front door, get out of the bath by myself best of all can take my autistic son out to the park on my own! quality of life will never be as it was pre fibro but the difference im so so grateful for and the reason I tell other suffers I'm not against meds they just don't help me

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Epea
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68 Replies
AllthatGlitters profile image
AllthatGlitters

Hello can I ask what foods you eliminated that helped you? 😀

Epea profile image
Epea in reply to AllthatGlitters

Hi I use principles as a marker for eliminating foods which is easier to tell than lists of specifics -So trillions of cells breakdown daily in our bodies for everyone so what you replenish that with matters! So no processed foods as of litte nutrious value and often contain many chemicals and preservatives so they last longer on shelves sadly. Fresh non frozen food I eat simply because the enzymes are more powerful and organic with fruit and veg where possible and I know with polluted rain not truly organic but the stuff that isn't organic can get sprayed 30 times from ground to shop with different sets of chemicals which can penetrate despite washing them they are designed to kill off living organisms which we are too! and over a period of time will no doubt affect the person eating them. Anyway I eat porridge with honey and full fat unpasteurised milk as b12 super good but milk substitutes are necessary for some and I eat a lot of raw mixes slaw and juices both with olive oil as acidity levels would be too high I also do not use directly out of the fridge I leave to go room temperature as bad for your spleen and therefore your immune system. Slow release carbs calm your system and heart pulses beans nuts seeds fantastic and cheap as a meal, Balance and variety key so you will stick to plan. Nutri bullet juices have been fibro lifeline for me the mint stopped hives and anti inflammatory and parsley great painkiller and and any veg with that orange and olive oil (tsp) all organic. I eat small amounts of meat, blue cheese, pate and bread. Fish is great but expensive alongside the cost of fresh food so I encourage pulses beans nuts as so much cheaper and full of vitamins.

AllthatGlitters profile image
AllthatGlitters in reply to Epea

Thank you 😊

JayCeon profile image
JayCeon

Hi Peamy - my docs didn't quite get out books, but they had little more than meds & other things that harmed me pretty severely, so I also had no other choice. Diet (starting pre-fibro) eliminated my IBS-triggers, see youtu.be/7ENMwTB4LlA) and a Mediterranean diet for my lipids is also recommended by some researchers as a healthy diet that also reduces FODMAP and fructose/fructans for FM. Didn't help my FM tho. Normal supps like B12 (s.c.), D3 (now with K2-MK7) and magnesium (malate & (bis)glycinate) didn't help, but I take them cos my levels always get low.

So what helped? .... after 50 docs/therapists & 15 physios in my 2 years of severe fibro to try to get a handle on and understand every single symptom; tracking and analyzing every single symptom, hunting and finding many triggers, pacing pretty perfectly now, trying 30 physiotherapy types, "20" diets, 5 essential oils, 35 vitamins & minerals, 10 herbs and some pretty crazy stuff like hyaluronic acid injections in my spine, a lot of which harmed rather than helped....

Only 'holistic' things: osteopathy first, then cryotherapy, then (expert) acupressure got all my pains down, now all kinds of short stretching regularly throughout the day keeps them down. Passiflora is the only supp (together with the amino acid GABA) which improves my sleep (melatonin, 5-HTP, L-trytophan, CBD-oil and ashwagandha harmed me considerably, even with extremely low dose). GABA is since April my single best help of all, so I seem to have low serotonin, I balance it out with other amino acids: glutamine and theanine, and NAC also seems to help, which all greatly improves my quality of life. Psychotherapy now helps me keep my spirits up & tackle the smallest of mental things that can be improved.

Whilst I also have tried and am trying many more supps (still taking 20+ at the moment, darn expensive) for a jaw inflammation & lowering lipids without meds, none of these aside from GABA are having further effect on my fibro Ache, energy, fatigue and stiffness. The list aside from the above: B2, B6 as P-5-P, carnitine (no longer ALC), ginkgo, no longer mumijo, NADH occasionally, Omega 3 microalgae, PQQ, CoQ10 as ubiquinol (first ubiquinone), quercetin, resveratrol, rhodiola, SAM-e, no longer selenium, serrapeptase and zinc, next up ALA and OPC. All have a little evidence from studies, which I look at closely, before looking at the quality of products closely. Often these supps are for FM-type problems as well as also anti-inflammatory, antioxidant, and for CVD too, e.g. stuff that is relaxing (for sleep, stress and/or pain) also reduces blood pressure.

Extreme jab-side effects for 4 weeks and no improvement are making me increase some things like ubiquinol & quercetin and start up vit. C, and next ALA (see Nancy Klimas' recommendations), but also question all the supps, so I'm experimenting by reducing stuff at the moment - as there's nothing else new I can add, I'm thru.

(My jab-sfx are similar to fibro, but more severe than I've ever had fibro - I can not only not work any more, I can move much less for fatigue, sometimes nausea & feverishness. I'm disappointed that all these supps haven't managed to keep the sfx down more. But at least: no hospital!!)

Gigiruth profile image
Gigiruth in reply to JayCeon

Thank you for sharing. Such a though journey. I will re-read and carefully consider all you have shared.

JayCeon profile image
JayCeon in reply to Gigiruth

Thanks :-) Like you ("I was ill from being a child so did not go though grieving my health.") I started early in my teens with skin, GI, back, & nerve itchiness due to all those. Later focal seizures & social phobia; but got a handle on most of this. FM made me want & manage to get that & more all under control even more. Then chance findings of a probably harmless spinal tumour and genetically high lipids. Hence the many docs to make sure. Altho what I've accomplished is my own credit, spawned by trigger hunting and the help of friends' and forum suggestions, along with my acupressurist for local pains.

Epea profile image
Epea in reply to JayCeon

Wow that is an extraordinary amount of vitamins! I only take vitamin d iron and starflower and primrose oil the rest I get from raw foods i did listen to nutrition lectures and if you can absorb vitamins through food ideal as some synthetic ones will just be passed through urine with little effect . You've done so well with fighting it by trying many things

JayCeon profile image
JayCeon in reply to Epea

Yup, I'd always had exactly your stance of not needing supps as I've had a healthy diet for decades, without processed foods etc. And my dad was a supp nut which so got on my nerves (esp. as he wasn't using diet much, I think). Two arguments are of course: With my GI problems my system is probably not taking up as much as it should be; and not being healthy despite a very healthy diet calls for supplementing. But my first bout of supps in my first year according to a regime I tried for FM by a functional doc didn't do a thing (5 phases of 2-3 weeks each, mainly: 1. vitamin B12 injections / 2. potassium, zinc, selene / 3. vitamins B1 + B2, C, all 8 sorts of E / 4. omega 3/flaxseed oil / 5. CoQ10. I also repeated that just to be sure). So I was wary, didn't think anything of supps & herbs. Only finding amino acids changed that, lead me to start experimenting with dosages, which helped me find that an "overdose" of passiflora was the only thing that helps me sleep.

Epea profile image
Epea in reply to JayCeon

Thank you sharing information is great

Skylover profile image
Skylover in reply to JayCeon

Wow that’s some serious research using you as the scientific subject! Thank you so much for all of that information - I really appreciate your insights 👍 I’m only just beginning my fibro journey of self exploration, but I know everyone is different & we’ll all have our own ‘triggers’ so I’m going to try to use some of your knowledge to see what works for me. Thank you once again 🙏

Epea profile image
Epea in reply to Skylover

Thanks i think living proof is the best evidence I heard a lot of opinions

I tried medications

And experienced many different

Symptoms whilst trying lots of remedies like a lab rat over nearly 13 years. Til finally I found a good quality of life through eating well and not taking recommended medicication

And managing my stress levels

From wheelchair to treadmill (10 minutes) and no walking aids. I know I'll never be how I used to be and every active day has to be followed by a rest day but wouldn't change a thing now so happy.

JayCeon profile image
JayCeon in reply to Epea

Hehe - Skylover was reacting to me, but I'm sure meant you too! ;-P

A team of guinea pigs we are.... 😅

Epea profile image
Epea in reply to JayCeon

I thought so having looked at the feed but didn't want to not reply ha and I never worry about explaining my solutions to fibro management if it helps anyone never a waste of time 😁😁😁

Ellymoon profile image
Ellymoon

Yes I have.

I have had a mixture of homeopathy The Bowen technique in the past and now on occasion when I feel I need it.

I take vit c, vit B complex, probiotics, gentle iron and magnesium. I also meditate a lot. I have also got an earthing mat in my bed and sleep on a more natural mattress that contains no metal springs.

For me this has helped massively

I no longer spend lots of time resting and my aches and pains are almost non existent and I sleep well 80% of the time. I also eat A diet that is free of gluten and low in refined sugar.

Don’t get me wrong I still have tired and aches from time to time but both are a lot more manageable now. Definitely all worth it for me

I think it’s a matter of trial and error. Everyone’s symptoms are different and so it’s finding out what works for you.

Gigiruth profile image
Gigiruth in reply to Ellymoon

Thank you for sharing

Epea profile image
Epea in reply to Ellymoon

It is horses for courses but if I tried lots and suffered and found breakthroughs that gave me a quality of life and independence I will urge people to try it safely if possible for them :) sleep so important for fibro glad you have that sorted! I often struggle when sleep in hotels because got i have certain pillow and mattress that is perfect for me. So many areas have to maintain but worth it

Gigiruth profile image
Gigiruth

Thank you for your post.12 years ago my pain meds were causing as much damage as good.

I had a diagnosis of Fibro and Sjorens and a non specific auto immune condition which I understand is genetic (family history)

I was ill from being a child so did not go though grieving my health.

I was in lots of pain despite the meds

I began to explore other options. Devils claw. (Occasionally) selenium supplements and bath salts along with structured exercise. I had low vit D so took that too.

I use a physio DVD from a guy who works with hypomobility. Stretch bands for gentle pressure.

I found the pain was the same level without the pain meds.

I quit stronger pain meds 10 years ago.

I have an identical twin who has the same issues so we get to try and work out what helps and always have someone who understands. ( like you folks)

There is much interesting stuff to be read on mind body connection. Mindfulness.Meditation.. Acceptance and Self compassion.

Personal therapy after a loss helped.

I have random foods that make me worse. Tomato seeds. And sometimes it is a stacking affect of sinning. Such as coffee,alcohol, not enough fibre. My gut is important in condition management and exercise (gentle walking) is essential for my gut.pain meds upset my gut.

I have reasonable adjustments at work for chronic fatigue. I have had to use this only 4 times in about 8 years but having the option to go home helps manage stress. I changed my working pattern to every other day to help fatigue. Occupation health Service report was helpful.

Thank you Peamy for posting

It can be so hard to explore holistic and practical adjustments with little information available via NHS and so many options.

I now live with and manage these complex conditions rather than be controled by them.

I still sometimes have to roll out of bed and get stuck in the bath.

Take care folks

Epea profile image
Epea in reply to Gigiruth

How cool being a twin! sounds like youve had a lot to deal with I wish you well in your continued battle and your sister thank you for sharing

Yassytina profile image
YassytinaFMA UK Volunteer

It’s good when we get too enjoy things like a short walk to the park, we cannot always climb mountains but achieving things at a different level is always positive, and yes taking vitamins, a soak in the bath, eating healthy can be helpful for our fibro then that’s a positive way forward too. Take care .

Epea profile image
Epea in reply to Yassytina

Yes definitely not climbing mountains ha but grateful for the tasks I can do that I took for granted when I was a fit healthy person. I think I was bitter at first and full of self pity because never smoked or took drugs or led a wild life ha so was indignant that I became ill but my perspective has changed now although occasionally like all fibro suffers I get frustrated think this is too much but its short lived these days ha

saluhouse profile image
saluhouse in reply to Epea

Hello Peamy. This has been a very interesting thread - lots of good advice from fellow sufferers. Always helpful to know what other people are doing.

I’m not an expert and have no medical or chemistry qualifications - but here is what I have discovered regarding treating my awful fibromyalgia symptoms. It is totally anecdotal and I have not managed to see a Doctor to get any diagnosis or advice.

BUT I am totally convinced my fibromyalgia is caused by a sulfite/sulfate intolerance which I have had all my life (but only recently realised). It is not an allergy - it is an intolerance. That means it affects you when you reach a level that your body cannot tolerate. Apparently an allergy is something your body reacts to immediately. With an intolerance your body tries to eliminate the substance by whatever means it can. Sulfite is in food - sulfate is in toiletries and medicine.

Sulfites are a chemical preservative and shelf-life enhancer. They are sprayed liberally on a variety of foodstuffs to prevent deterioration. So the worse offenders are wine/frozen potato products/grapes/shellfish (frozen prawns are lethal!). But any pre packaged/baked/frozen food can be saturated with the chemical. Meat should be sulfite free - except that the little bit of white soggy paper under the packaged meat does contain sulfites.

After hours of reading and research I have managed to eliminate sulfites from my diet. Basically you have to cook everything from scratch using really basic ingredients. And I do feel much better. So far so good.

But occasionally I slip up - eat our at a restaurant or go to family or friend for a meal. So inadvertently I eat something containing sulfites. The reaction is pretty horrible and rapid. Stomach ache/diarrhea/headache/aching limbs. In fact all the symptoms I used to attribute to fibromyalgia.

I have discovered a tablet called Molybdenum which helps to eliminate toxins from the body. I can only tolerate in a very low dose - it doesn’t stop the reactions but I think it does minimise the length of time they last.

I have had a lot of help from the Sulphite/Sulphate Sensitivities Group. It is based in the USA and Canada - so lots of products they recommend can’t be found here - but their advice is invaluable. I have realised so many sulfite sufferers have fibromyalgia. Please consider it as a possible cause and effect. It has helped me a lot - it might help you.

Best wishes Dianne xxx

Epea profile image
Epea in reply to saluhouse

That's really interesting mass production of food has some dirty secrets no wonder so many ailments but its too vast to find out all the details to protect yourself so you have the right idea cook from scratch where possible and save reading those ridiculous ingredients that you can't pronounce half the time I prepare for 2-3 days worth of food because its a drag doing it every day plus you need a life just breakfast and nutribullet juice I make fresh and when I'm abroad its brilliant all salad and vegetables chopped daily for you + sun yay. Its also intriguing that sulphate intolerance could have been your trigger for fibro and some say in families some genes are more likely than others lots to think about thanks :)

softblanket profile image
softblanket in reply to saluhouse

Hi dianne I believe that I have a reaction to sulphites. I've been diagnosed with chronic insomnia but I believe I need to look Into my diet in so much more depth. If I so much smell alcohol I cannot even get any relaxation rest.

I would like to know more about this chemical and also about the group you are involved with.

Where do I find out about the medication you mention molybdenum- this is very exciting for me. It was son who first mentioned I may an intolerance for sulphites - especially not being able to sleep after having just a small glass of alcohol especially wine. I have not drank alcohol for about 2 years now and I gave up meat 6 years ago. I was shocked to read that prawns contain sulphites - I feel so deflated by it all and I only started eating prawns in my diet when I gave up meat to give myself a diet variation of foods. I really need to find a way to get some sleep into my life - I've tried every supplement there to help with sleep - some have even given me adverse reactions even causing severe hair loss. Thank you for sharing you're post, with you're experiences - its a comfort to know that we are not alone with our conditions. I often feel so much despair when I find a supplement that may be the answer (never mind about the cost) to yet again be so disappointed when it doesn't work. Bless you 🙏🏽 soft blanket xx

saluhouse profile image
saluhouse in reply to softblanket

Hello Peamy and soft blanket. Thanks for your reply - I’m very happy to share the knowledge I have gained about sulfite/sulfate intolerance being implicated in fibromyalgia.

The Sulfite/Sulfate Sensitivities Group is on the internet - you do have to go through Facebook. My clever internet savvy daughter negotiated that for me. But once you are registered they contact you through the computer. They are an amazing group of very knowledgeable sufferers - always happy to give advice. So many of them do have fibromyalgia. It made me think - if people with sulfite intolerance have fibromyalgia - then logically people with fibromyalgia probably have sulfite intolerance.

Also I located a website called The Sulphite Connection: A Hidden Pandemic run by Paul Barrett-Hasnett. Again on the internet. He is Australian. Says he has cured his lifelong fibromyalgia with a sulphite-free diet. He has written a book which you can download for about £20 - but does offer the first two chapters for free. Again I needed help from my daughter. But I have found it an eye-opening read giving an in-depth resume of the whole commercial reasons the chemical is so widely sprayed on so many foodstuffs.

I’ll be honest - it’s not an easy route to take. Sulfites are insidious and turn up in the most unexpected places (who would have guessed that some bottled water is very high in sulfites?) But if you are desperate (and I was) it is doable and it does really work. It has proved itself to me because when I accidentally eat or drink something containing sulfite - the repercussions are swift and very nasty,

I’m always here should you need any more information. Good luck Dianne xxx

Epea profile image
Epea in reply to saluhouse

Valuable insight thanks Dianne 😊

Wobblygirl profile image
Wobblygirl in reply to Epea

My GP does not recommend drugs and despite trying them initially we both realised the side effects and efficacy were negligable...

She is on my side but the pandemic doesn't help our Drs prescribe more healthy practices as time is strained for them... Even when she suggested a Mediterranean diet I had to research what it comprised of!!!

It's amazing how brain washed we are by the food industry???

And I thought I was an intelligent woman???

It's a continuing learning curve isn't it?

Wobblygirl profile image
Wobblygirl in reply to Epea

Yes I feel very sad about my health as all FB progress I had gained seems to have disintegrated because of three viruses. All respiratory but not Covid! Been diagnosed with super cold 3x and it doesn't get any better with the range of symptoms but the fear is less...

The debilitating symptoms affect stamina mostly so food prep is a struggle.

I try and persevere with cooking from scratch and doubling up so there are some nutritious meals in freezer. Walking is my overall exercise to recover painful muscles and it's good to come home to a real sense of tiredness.

I use heat so much to ease over-activity or any soreness! (I received so many helpful heat sources for Christmas gifts where I was able to choose...)

Magnesium helps my fatigue but checking diet is a constant for me to know when to increase certain vitamins...

The sadness of getting so physically ill and shielding for nearly nine weeks now is a real setback and losing faith is a slippery slope... I hope I have not lowered the positivity here but viral illness can be an unwelcome disaster when trying to control so many factors when previous FB progress has been noted...

I'm sure it's a 'normal' post viral malaise now but disabling all the same...

I have been interested in all the contributions but income does dictate what options we can make... Simple changes to diet and being more aware of sulphates/sulphites to avoid processed food is a route we can all adhere to but it is a great pity that opting for a better diet can still be an expensive route for so many of us!

I fear good food choices will increase further in 2022 but maybe eating less or becoming more economical is our fate?

Thank goodness fruit smoothies and veg soups can be made from bargains on the reduced greengrocery shelf. on the same day...

Epea profile image
Epea in reply to Wobblygirl

Aww awful when your immune system takes one hit after another especially with these crazy colds that turn into chest infections these aside fibro loves giving you a variety of ailments it's like hey whats in our fibro bag today! It can be expensive i try to keep it simple on vitamins and bargain shelf as often organic there as people less likely to buy expensive fruit and veg which works in our favour avocados keep well after their date in fridge too and free points due too lots of fresh food bought mounts up for free stuff! This pandemic has cut a lot of extra activities that were helpful for therapies, hopefully they kick back in 🤔 winter, covid, finance much to endure but as weak as we may get we are made of tough stuff by putting up with this condition generally! May you keep strong 🥰

Wobblygirl profile image
Wobblygirl in reply to Epea

Thank you. You have a strong attitude to all this, I admire you...

I'm afraid I am losing spirit with time and poor progress!

So glad you agree with economies where diet is concerned. Whenever I pick up those reduced avocados they're as hard as rock and it really is a waiting game???

Good night to you...

I trust you are rested? Wxx

I am still awake after too much daytime sleep so I'm waiting to feel the heavy eyelids before I ascend the stairs.... Pity I feel so hungry!!!

Epea profile image
Epea in reply to Wobblygirl

Lots of support here for you if you need chat or help and advice (admin removed email address - please pm member to get in touch)

Chunkiedog profile image
Chunkiedog

Hi Peamy thanks for sharing. I have found reiki to be most effective for me alongside my daily spiritual practice of meditation. I’m also a reiki practitioner and teacher so having these tools has helped. I no longer take painkillers unless I have a flare up but it’s rare. Wish you all the best as we are all individual but keep going to find what works for you, it will happen.

Epea profile image
Epea in reply to Chunkiedog

Thank you hope you continue your fight to keep going as some days are better than others Take care 😁😁😁

Farmerboy profile image
Farmerboy

Hello, you have open up a subject that is getting a lot of responses, it great because others are now sharing their own methods of coping and managing their symptoms reading no two are the same what works or help one person may have no effects on others. We all have to read look on line and be prepared to try maybe unconventional methods of diet or treatment methods and by doing this hopefully we can elevate the symptoms and pain .

JayCeon profile image
JayCeon in reply to Farmerboy

Yup, I'd've got nowhere in alleviating symptoms & pain without the web, esp. forums.

Farmerboy profile image
Farmerboy in reply to JayCeon

We must read and and look at many sites and sources of information, myself a MS person R&R at present I have much information on MS but I tend to not read of what could or may or will happen as my conditions worsen, I have the information to read and stay informed as and when I need it. To much knowledge and information can cause anxiety leading to depression ect. So while I can remain upbeat and positive as a person told me that I am so positive I respond with it’s my MS and I deal cope and manage it as best I can among other health issues I have not related to MS. Covid has helped any of us requiring or needing NHS intervention and diagnosis or treatments. A very happy and pain free new year.

JayCeon profile image
JayCeon in reply to Farmerboy

Agreed again! Striking the fine balance is an individual, personal matter, even regarding nocebo when taking new meds, much more when we have a co-morbidity with a risky prognosis. Fortunately my deliberate naiveté trying meds led to considerable, but short and reversible harm. Looking for the balance now (supps & physio) I inform myself roughly first to be able to decide on the least risky ones first, but blend it all out upon starting, and only start researching as soon as new symptoms crop up. Regarding risky prognosis: my tumour and high lipids may be scary for some, but I carry my tumour like a scar / bullet and actually forget about it most of the time, and my lipids are under control. The rest isn't up to me, apart from practicing all kinds of relaxation techniques, mindfulness, being in the Here-and-Now etc. a lot.

Epea profile image
Epea in reply to Farmerboy

Yes so many with different symptoms and other illnesses too nice to know we're not alone with this complex condition family can be supportive but nobody knows the extent until they've got it so I'm grateful to chat to you all :)

Farmerboy profile image
Farmerboy in reply to Epea

It’s good to talk share our thoughts and hopefully get a better understanding of our symptoms and medications we are taking . I can’t take statin’s having tried 4 different ones my GP rang me up and informed me that my body can’t cope so I was on my own. I now take a mixture of nuts with my breakfast and turmeric capsules to help inflammation and since I’ve been on them my persudo gout doesn’t play up much now.

Epea profile image
Epea in reply to Farmerboy

Sounds painful gout! Statins rob your body of Q10 which is an enzyme which when depleted causes much pain :( some have added this supplement by tablets but food is powerful too you've done well to sort the problem this way I will let my friend who suffers with gout know thank you

JayCeon profile image
JayCeon in reply to Epea

I had no pain problems with statins, but got the lipids down with strict Mediterranean diet and various other supps, so they've allowed me to stop the statins. CoQ10 I'm taking as the more bioavailable ubiquinol, however almost all research has been done with the less bioavailable ubiquinone.... The others for lipids are: arginine, carnitin, B3, ginkgo, mumijo, omega 3, pectin, psyllium, quercetin & resveratrol, which I'm taking or have tried. Plus lecithin, CDCA, flaxseed, red yeast rice extract, fibermat, phytosterols, pine bark/OPC and quinoa. However some of the latter (like B3, omega 3 & phytosterols) reduce lipids but not CVD according to studies, others have too many sfx for me. (BTW My lipids are a little different to most, my (much too) highest is called lipoprotein (a).)

Epea profile image
Epea in reply to JayCeon

You are very clued up with lots of information my mind would explode with so much knowledge my life like my mind is simple ha any stress can start symptoms too! You have a big brain and it obviously serves your illness well marvellous

JayCeon profile image
JayCeon in reply to Epea

Yeah, sometimes I wonder if my brain is too big for my own good, but it's my inner energy fuelling it which keeps me doggedly pursue all routes I can find and together that greatly increases my quality of life directly and so also indirectly via the self-efficiency, so I think you're right: It serves my illness well. But there are occasionally times when I do get an information overload, sometimes Oct/Nov gathering all the details about these new supps more for lipids & inflammation & integrating them with the FM-ones, or worst was when starting filling the daily 16 compartments with them, which took 30'-60'. Getting nervous and throwing them over. 🧐😬. Now it's routine in 10', plus when necessary encapsulating for the next few days ...

E3178 profile image
E3178

I spent many years trying all the different holistic treatments on offer. Read many books. Tried different diets etc.,I have had pain all my life so probably accepted it as normal for me having a scoliosis spine.

However at 78 I got tired of the pain, ibs, anxiety, depression itching burning skin and fatigue so saw a rheumatologist privately for quickness.

He easily diagnosed fibro and said that was always the cause of my life long pain.

I gave in and asked my doctor by letter if I could try pregablin.

I started on 25mg three times a day and have increased to taking 125mg over the course of each day.

I am feeling a lot better with much less pain, gut problems and just about everything else.

I have noticed my eyesight sometimes gets a bit blurry when I am tired and hope it goes as I get used to the slightly high dose I have put myself on.

I am now able to expand my horizons.

I have always done yoga, tai chi, walking, using heat and massage, vitamins minerals, various diets etc. I have tried to cope without any prescribed drugs but at my age I just wanted to try and get the best life I could get and am feeling optimistic.

I have shocked myself by joining a dating site and have loads of men of all ages wanting to take me out.

I am seeing two of these at present and have more in the pipeline.

I know medication is against my principles but I am now able to look forward and hopefully enjoy what is left of my life.

Epea profile image
Epea in reply to E3178

Glad you have found a successful path lovely to hear success managing a multi symptom condition hope all continues well :)

Painny profile image
Painny

I’m into unconventional treatment, I usually treat the right food as medicine and through trial and error I have found some of the culprit such as dairy, gluten. Not eating them has a small improvement but occasionally I pay the price when I’m naughty 🙈 and cannot keep my hands off the cheese which I know is good for microbiome!

…And yes…I’m into functional medicine; let’s continue our mission

With best wishes for you and all our fellow sufferers 💐🌺🥀

Epea profile image
Epea in reply to Painny

It is a rollercoaster isn't it we are imperfect humans and socially its hard to keep saying no to food that doesn't help physically but good to know your personal limits :)

Woodhouse16 profile image
Woodhouse16

How correct you are. I cannot tolerate strong meds since fibro hit actually various horrible side effects ect so was referred to a pain management clinic by a rheumatologist that being back in March 2020 which for obvious reasons never happened so being desperate I too started to look and research into what I could do myself . Changed my diet wheat gluten dairy ect took alot of trial and error and still in daily pain fatigue ect but feel a little more in control of it now and would never go back to my old diet ect..

Epea profile image
Epea in reply to Woodhouse16

I was put on prevailing as many who had fibro recommended it and painkillers so tried for a time they were good for pain but side effects meant I was tired and still couldn't do much and swelled up a lot. My friend had a different disorder so got a nutribullet messed around with different combinations, because you have to like what you consume or you won't stick to it she told me to try I was sceptical as I am with everything 😂 but did and so so glad I did I started doing 3 a day but silly trying to maintain that and our bodies not meant to have that much liquid on top of water etc so went to one a day (700ml) And had avocado with mix of raw stuff

Such a variety anything with essential fatty acids incredibly good despite being calorific because they get rid of bad fats vitamins b12 cod liver oil and iron I take too but food has changed everything for me with functionality and mental health.

Sorry for waffle hope you continue to find your way with good nutrition

😊😊😊

JayCeon profile image
JayCeon in reply to Epea

"prevailing": Hehe - nice typo for pregabalin, I guess...? :-)

My wife's getting so frustrated & feeling powerless seeing me suffer (& she's regretting me doing the jab) that she wants me to try ibuprofen, gabapentin, pregabalin... She's seen so much now, but still doesn't understand my body, that I'm not suffering from the Ache primarily, it's my warning signal to keep my activity down. So good reminding me what pregabalin may do. But at least I'm humouring her with ibuprofen now, starting with 2x.3g, see how my skin & GI take it.

Epea profile image
Epea in reply to JayCeon

Ha what am I like should read before sending my phone decided pregabalin should be changed to prevailing sounds profound🤣 clever of you to work that out thank you

Woodhouse16 profile image
Woodhouse16 in reply to JayCeon

Had really bad side effects with pregablin. They made me suicidal and if my sister hadn't have called one day unexpectedly who knows what would have happened as I had all my medications at the side of me ready to take them. I live alone so no one else would have known. I obviously came off them and within a couple of days was more or less back to normal. Should point out I have suffered with depression all my life from childhood but have never been in the suicidal state before or anywhere near that. Also I had only been taking them afew days before this horrible side effect took place . I had to go for scans a week later for something else but nurse had to go through my meds and obviously pregablin was on my most recent she asked if it was helping my fibro symptoms which I had to tell her I'd just recently had to come off it and the reason why to which she said that it is one of the bad side effects of the medication. That's just me personally though. Have to say though I am so pleased I tried different approaches than medications to help deal with my symptoms and diet has been key. Heal and treat the gut is a start..

JayCeon profile image
JayCeon in reply to Woodhouse16

Thanks also... I sometimes wonder how many on the med route switch from gabapentin to pregabalin or vice versa, same as I'd expect switching from amitriptyline to nortriptyline or vice versa, or praps duloxetine, but I spose once we've felt sfx severe enough to stop us using it, the related substance aren't attractive either. At the beginning of my med career I was given celecoxib, then was switched to etoricoxib, but got the same skin sfx from both, without pain relief. Also when my amitriptyline sfx got so much it was clear that anything related would do the same.

Due to wife asking for me to try gabapentin (or pregabalin) I went thru the way they work last night, and remembered that aside from greater sfx they increase serotonin, like the GABA I'm already taking successfully, my best supp of all, and with no sfx at all, except if I increase it too much. So I think that's argument enough. Trying .3g ibuprofen yesterday to humour her gave me a bit of itchy skin, but I also feel better, problem is I've also started up the Wim Hof breathing exercise again, which immediately made me feel better, as well as continuing with ALA, which is recommended for FM-jab-sfx (and pycnogenol), so let's see if it continues & what it is, if it does...

Woodhouse16 profile image
Woodhouse16 in reply to Epea

I don't mind waffle one bit 😋 you have been and are a breath of fresh air.. thank-you for that.

Woodhouse16 profile image
Woodhouse16 in reply to Woodhouse16

I find making my own fresh fruit and so.etimes veg smoothies to be a godsend for me as give me abit more go to energy ect and if I've been out shopping or done something to over tire myself drink a glass of that brings my energy ect back. I have one daily for my breakfast helps set my day off . I tend to make a jug full up then I know it's there in my fridge for anytime I have a dip in my energy levels ect.

Epea profile image
Epea in reply to Woodhouse16

My word its hard enough having fibro without being experimented on like a lab rat so you have done incredibly well to power through! So glad you are still here too! I've suffered with depression and anxiety for years so hard to manage and constantly blaming ourselves for not snapping out of it! As well as power of food personally I keep my distance from people who drain you through negativity or putting on you beyond what you can give. Tv and news can add to it. What I do to help myself is music a silly dance round the living room where nobody can see🤣 a nostalgic movie or food you loved when you were a child , a feel good book and the power to say no .Good friends are rare but will understand when you want to be left alone.I do not advocate clearing your mind it is dangerous the mind is a powerful tool if ever you need a listening ear despite me talking A LOT email me at Paulaedwards40@gmail.com but don't feel obligated to do so there are lovely people on this site they know what you are going through lots to reach out to too 🥰

Woodhouse16 profile image
Woodhouse16 in reply to Epea

Thank-you so much it gives me such a boost to have you say that especially when I'm misunderstood alot by my family and don't really have any friends as retired from work now through ill health ( I am 64 though) couldn't continue my strenuous job but I was self employed as a sole trader too so worked alone which meant I didn't have work friends either my best friend dying some years back and another friend going to live back in Spain so do feel very much alone in having understanding support knowledge ect. I also have problems digesting things in too which has held me back through life and I'm currently waiting to see someone to find out if I have issues of dyspraxia ect but was told even before pandemic it was a long wait so feel in alot of senses I'm stuck in limbo. I don't understand modern technology either and am stuck in the past that way with alot of things I could have been included in virtual pain management clinic appts I was offered them but have no understanding of how to go about being in on them and don't possess a computer laptop tablet or whatever to understand how to even switch them on my mind doesn't digest that in. Basically I've blagged my way through life dealing and coping with things my own way but not understanding many things which have held me back so much it upsets me. Was just beginning to realise there is help out there which in my days of growing up no body understood the difficulties I had just with normal everyday life things back then mental issues ect weren't heard of thought about ect you were just told to try harder or pull yourself together or whatever and it's only of recent I've come to know there is help out there for things I struggle with in everyday life but now pandemic has hit all of these sort of things have been postponed ect. Oh my goodness I am so sorry for my waffle now lol I just feel very much in limbo ect..

Epea profile image
Epea in reply to Woodhouse16

Talk as much as you like if you had a friend going through what you are you would want to help and thats what we're here for! Technology such a pain my son and daughter always shaking their head in derision at me but I'm learning slowly!!!

Woodhouse16 profile image
Woodhouse16 in reply to Epea

Oh bless you I know what you mean my daughter especially is the same my sister is a little that way but has a husband and son to help her out in that way my son and daughter inlaw have very busy lives and split childcare between them too so everybody just doesn't have the time to help me out. My daughter just doesn't have the patience with me and still does to a certain extent think that my fibromyalgia is brought on by myself.

Epea profile image
Epea in reply to Woodhouse16

Shocking when people play fibro down i think insults like 'it's all in your mind' haters are another symptom of fm😂

JayCeon profile image
JayCeon in reply to Epea

No joking - after collecting, adapting, and sensibly categorizing and prioritizing my FM-symptom-list, I put "0. ‘Invisibility’, Chronicity, Flares." as first symptom group, and expand a bit on that. And above that as people to (not) consult...: "Docs that still don’t know, acknowledge, understand fibro"...

Epea profile image
Epea in reply to JayCeon

Ha yes apparently people took fm seriously when doctors started to get it ......how rude😂

Woodhouse16 profile image
Woodhouse16 in reply to Epea

How true!!.👍

Chrisbel profile image
Chrisbel

Hi, I made some notes for a discussion at a fibro gathering, so rather than rewrite, I will copy and paste, hope its helpful.

having been told that I had fibro, I asked what could be done to alleviate the symptoms, the doc said -oh I can give you Gabapentin and amatryptiline and possibly tramadol, and having read up on them, and the possible side effects, decided that I wanted nothing to do with anything that he could offer.

so I was left with trying to find out what could be done with alternative medicine, and as I had been using Chinese medicine and accupuncture since I was 40, I knew that there were different natural medicines that worked, so I hit the internet, and bought books by doctors and started reading and looking at all the trials going on with supplements, and took courses in natural medicine and vitaminology, and then started trying diets and supplements and treatments.

I have the attention span of a gnat, generally, so reading the books, which had lots of preamble before getting to the meat of what I wanted to know, I found I had trouble maintaining concentration, so youtube and articles became my way to learn, and afterwards I found that when I finally looked at the books, they all said more or less the same sort of things as the online stuff anyway.

First of all we need to discuss the effects of diet on the symptoms of fibromyalgia.

all foods are converted into sugar in your body, and it knows the too much sugar in your blood is dangerous, so it converts it into fat for use as energy, however if you are not exercising then the fat is deposited rather than used.

if you eat foods that are high in sugar or are higher in carbohydrates, then the problem is exacerbated,(increased), so a diet that is mainly based on flour,- pasta, rice, bread, biscuits, cake, pastries, potatoes, etc, and sugary drinks and sweets, chocolate and so on will cause insulin problems, diabetes, and weight gain and inflammation, and pain.

also causes metabolic syndrome where the body shifts too much fat to the liver and then the liver can’t do it’s job of breaking down the foods and waste.

I started to observe my eating habits and how my body reacted to the different food groups, was there more discomfort, pain or stiffness, more IBS symptoms, from certain foods, and for me it seemed to be reactive to processed foods, gluten and wheat based foods, sugary foods,( including sugar like products, fructose, glucose,sweeteners, msg, (56 odd names for sugar) some dairy and carbs.

one of the big problems with cutting out wheat and sugar is that they are both addictive, so they are difficult to wean yourself off them, and probably you will have to gradually change the way you eat

so I changed my diet to be more anti inflammatory, which means, cutting out all chemicals in food, filtering all water, kinetic jugs, and if you start reading the back of the packets and looking up what each of the unpronounceable substances are, it doesn’t take long before you want to buy unprocessed food and cook everything from scratch.

avoid ultra processed foods like the plague

all processed foods went, all carbohydrates went, all sugary drinks and foods went (almost) all sugars went, I kept Maple syrup for my coffee and tea, because I still wanted my life to be worth living! then I started observing how I felt, and the symptoms started to reduce in intensity. this is a lengthy process, but pays off in the end.

Then when I understood what I could eat and drink, I started to look at how to heal different aspects of these symptoms, and how to start eating to help heal them.

In general my diet is organic and chemical free where possible, if you can’t get organic, soak the veg and fruit in water and bicarbonate of soda for up to 20 minutes to remove the surface chemicals.

chemical free also applies to the rest of my life as well, so toothpaste, moisturiser, shampoo, conditioner, soap, deodorant, house cleaning stuff, all had to be changed to chemical free, and no candles in the house.

so

Lots of fruit, berries are best as they have the least amount of sugar, even more lots of vegetables, including cruciferous veg like broccoli and cauliflower and asparagus and spinach and cabbage and kale, both raw and cooked, grass fed organic beef, organic chicken and lots of fish, organic or lactose free dairy. eggs and soups.sweet potatoes instead of potatoes.

healthy fats :- organic olive, avocado,coconut, walnut oils and organic grass fed butter, oily fish nuts and seeds.

all other vegetable oils are bad fats, and your brain, being made mostly of fat, wants the good fats, and will continue to tell you you’re hungry if you ingest mainly bad fats, and they cause all sorts of problems in your body as well, like blood pressure and cholesterol, so increasing the risks of diabetes, heart disease, and some cancers.

my diet

To start with I tried to deal with the IBS, so I bought a nutribullet, and for breakfast started whizzing up raw veg, to which i added L glutamine (heals brain gut) and macca root (energy) inulin (prebiotic) flax seeds (Gut Health) and spirulina (energy and nerve function) nuts and pumpkin seeds and filtered water.

this mix is nutrient dense and I found I could take supplements with it easily. and a coffee after.

For lunch I generally eat organic raw veg ( lettuce, carrot, beetroot, avocado, chickory, broccoli, hummus and crackers and coffee

for dinner cooked veg (lots) and some protein, (small) beef chicken or fish, sometimes lamb or pork and sometimes sweet potato and a cup of tea.

so occasionally I would have wine or bacon and eggs or stuff that I fancied and I find that as long as I stick mainly to the diet I can get away with a cheat now and then but if I continue more than once in a while I begin to suffer.

Brain Fog generally improves in a lot of cases, if you cut out wheat and gluten.

I read a study by a university in tel aviv where 60 women were treated with pure oxygen at 2x atmospheric for 1.5 hours ,5 days a week for two months, and 70% experienced significant changes in their brain chemistry, and reduction in their pain levels, and the results were different depending on the perceived cause, ie head trauma or after viral illness etc.

so i decided to try this and joined the grampian ms therapy charity in dyce and went for about 80 treatments of an hour each, and found that my brain fog had all but disappeared, and now go once a week, and help with the tank operation as a volunteer.

Pain and stiffness neuropathy and burning sensations

physiotherapy

aerobics and stretching gently at the gym

gentle pilates

yin yoga

walking

Tai chi

supplements

low glycemic diet

Oxygen

accupuncture, herbs

Fibromyalgia Supplements

I have found that many supplements have more than one purpose, whilst they may be effective mainly for one aspect of fibro symptoms, they may also have other beneficial properties across the board.

So, with that in mind, I have loosely grouped the supplements i have found to be effective for me under headings, — energy, immune system, pain, IBS/ digestion, sleep, fibroids and general. Generally if you Google any of these, e.g. vitamin C and fibro, it will tell you the possible effectiveness and the aspect that it works on, so you can determine which might be effective for you.

Energy

vitamin B1 Thiamine (can help with fatigue and pain, helps with body's myelin production, helps mitochondria generate energy,

vitamin B2 - helps with vision and various eye problems like cataracts and damage to the eye lens. necessary for red blood cell formation, cell respiration and antibody formation. can help relieve migraines, potency is reduced by alcohol, caffeine, and some antibiotics.deficiency can cause trouble sleeping, sore lips and tongue, and sensitivity to light. foods. free range eggs peanuts, lean meats, leafy green veg, whole grain, soy products.

vitamin B3. Boosts good cholesterol,and production of hormones insulin and thyroxine. deficiency can cause digestive problems, irritability, diarrheas, depression, fatigue, insomnia, and ringing in the ears. rda 100mg, foods containing—white meat, oily fish, avocados, nuts peanut sunflower seeds whole grains and prunes

vitamin B5. good for red blood cells, healthy digestive tract and production of anti stress hormones. Deficiency can cause muscle pain, dizziness, IBS, restlessness, fatigue depression and trouble sleeping

Vitamin B6. helps convert fats and proteins into energy and counters stress hormones, accelerates production of serotonin and magnesium metabolism. helps with carpal tunnel syndrome.

vitamin B12. - production of red blood cells, cell repair, has a key role in the normal. functioning of the brain and nervous system.

deficiency can cause depression, anxiety, fibro fog and headaches.. food sources turkey, fish, lean meat, lamb, beef, and poultry.

vitamin B complex.- all of the above and helps production of serotonin, a natural anti depressant and helps sleep.

acetyl-L-carnitine. warning - can adversely react with blood thinning agents(sintrom warfarin coumadin) and can lessen the effects of thyroid hormone meds. Can help with fatigue, (both mental and physical) cognitive impairment, neuropathic pain, celiac disease, helps body convert fat into energy, helps with energy production, fatigue, mops up lactate, which causes pain problems with fibro. may help with brain utilisation of neurotransmitters and serotonin and glutamate, which can be out of balance in folks with cfs and fibro, shuttles fat to mitochondria, which they need to produce energy. protects brain nerve cells and regenerates them. can help with energy in cancer treatment( 2 grams 3times daily) CFS, MS (2 grams daily) Fibro-(1-1.5 grams daily for 10 weeks)

Panax ginseng - acts on the immune and central nervous system, and has been found to, decrease pain boost immunity, improve brain function, liver function, it’s also, anti tumour, anti diabetic, anti fatigue, anti stress, anti ageing, and has anti oxidant effects

zinc - lower levels found in fibro sufferers, correlate to increased pain levels. helps with energy

Genef 20+ - combats ageing, helps with looking and feeling younger, stimulates the body’s production of human growth hormone, which decreases with middle age, causing decreased muscle mass, memory issues, reduced libido, increased body fat, so it stimulates the pituitary gland to produce more HGH hormones naturally, which make you feel physically stronger and more energetic, along with strengthening the immune system effects - smoother skin, increased stamina, increased muscle and decreased fat, improved mental function, memory, focus,moderates glucose levels. can help sleep.caveat - don’t take if pregnant had heart attack, allergic to dairy.

coenzyme Q10 - caveats, careful taking it with other products that lower blood pressure, or with surgery.

can help improve - tender points,pain, depression,fatigue,exercise intolerance, and quality of life, take it with a meal with oil or fat for better absorption, could take up to 2 months to make a difference.

Vitamin C. antioxidant and helps maintain healthy bones, teeth and gums. helps repair damaged cells and absorption of iron, and controls stress hormone production. deficiency can cause bleeding gums , painful and swollen joints, muscle weakness, anaemia , and issues with the digestive system. food sources, citrus fruits,tomatoes, strawberries, broccoli, kiwifruit, brussel sprouts and red and green peppers.

Macca root powder - can help with mood, menopause, fertility, energy, swollen prostate, memory. do not take if you have thyroid issues.

Pain and inflammation

Magnesium Malate - muscle relaxant ( also helps regulate blood sugar and blood pressure and body temperature). also needed for many chemical reactions in your normal body biochemistry

Foods containing magnesium are nuts spinach and dark chocolate. kale, avocado and veg.

ginger - anti inflammatory, eases nausea, and improves digestion, can reduce inflammation and block pain sensations, and help with brain fog.

a lot of people use ginger and turmeric tea.

Curcumin - anti inflammatory and reduces muscle pain

Alpha Lipoic Acid - neuroprotective, protects brain, works on small nerve fibres and so helps with neuropathy pain.

P E A palmitoylethanolomide fatty acid amide that belongs to the endocannabinoid family, and has analgesic and anti inflammatory and neuroprotective effects on chronic pain. only side effects can be stomach upset, but i have not noticed any, and it has significantly helped with the pain levels.

Vitamin D3. sunlight vitamin, aids calcium absorption, maintaining stronger bones, helps with muscle pain, immune system, low mood, insomnia and lack of it can cause all of the above.

vitamin K2 stops migration of calcium from the bones and prevents arterial wall stiffening, helps with blood clotting, prevention of osteoporosis, and heart disease, helps bind calcium to bones, may help with blood sugar regulation, varicose veins, youthful skin, oxidative stress and inflammation in the brain.

omega 3(effective for migraine, low back pain, rheumatoid arthritis and other autoimmune conditions)

note there was some concern that larger doses of vitamin d3 could cause the migration of calcium from bones, but the doses would have to be very l;arge and if vitamin K2 was taken as well that would stop the migration of calcium, so take them both.

vitamin P (P5P) helps reduce blood sugars, and lipids and fights inflammation, strengthens blood vessels and capillaries including muscle fibre, improves energy production process, and reduces impact of free radicals. helps overcome muscle inflammation and muscle weakness. food sources-spinach, apricot, lemon, orange, grapefruit, cherries and paprika.

Immune System

Selenium - supports thyroid and immune system

Zinc- catalyst in around 100 enzymatic reactions

Vitamin C - immune system and energy

Omega 3 - believed to aid brain development and function, reduces inflammation reduces back and neuropathic pain, helps prvent heart disease, lowers blood pressure and risk of cancer diabetes, and alzheimers disease. may help with chronic fatigue.

Cordyceps Sinensis—strongest immune system booster known to Chinese medicine, known for thousands of years, now lab grown in america and uk and available on Amazon!

MSM sulphur - naturally occurring in the body helps with collagen production, transport of oxygen from lungs to body, thereby enhancing energy, helps stop lactic acid production, relieving pain and chronic fatigue, 5g-30g per day, find your own level

Garlic - immune system booster

Iodine - lack of iodine can cause fatigue, muscle pain, weight gain, constipation, cold intolerance. anti fungal, anti parasitic, helps clean out heavy metals from the body, such as aluminium, mercury and arsenic. helps with thyroid, energy, alkalising the body, autoimmune diseases, and many other things.

IBS/Digestion

avoid foods and food additives and artificial sweeteners and ibuprofen, that irritate the gut and also destroy beneficial gut bacteria, i.e. processed foods and treated foods.

dechlorinate your water, regularly eat fermented foods such as yoghurt, kefir , kimchi etc

eat lots of complex carbohydrate vegetables high in fibre to feed the good bacteria in your gut,sweet potato apples berries carrots peas beans celery broccoli bananas onions asparagus nuts and seeds

if you consider that Fibro is an auto immune system problem, then healing that aspect would be of paramount importance, so, if a leaky gut is part of the cause( tears in the membrane lining of the intestines, that allow particle to pass through that should not, thereby alerting the bodies immune defence system to mobilise and attack, but giving it nothing to attack, the net result of which is that the immune system then attacks the body, causing autoimmune issues.

L- Glutamine (an amino acid a primary fuel used by the cells in your gut lining, for repair and regrowth, soothing the intestines and regulating inflammation. Helps reduce and heal leaky gut, slowing down inflammation in your body due to fewer toxins and pathogens circulating in your bloodstream. other benefits are:- reducing sugar cravings by stabilising blood sugar levels, supports removal of waste from the bodily systems, synthesises proteins, protects the gut from injury due to alcohol consumption. reduces lactic acid retention. supports immune system, supports production of HGH which helps with healthy ageing, sleep and metabolism.

Prebiotic (Inulin) )a fibre that feeds the gut flora and fauna, can help the gut bacteria, but can in some cases also aggravate IBS

Probiotic (100 billion CFU)— 70% of your immune system is in your gut, your mood is controlled by serotonin (feel good hormone) and the majority is produced in your gut, research is showing that taking probiotics can help relieve depression and anxiety. Optimal serotonin levels can mitigate the effects of cortisol,(your stress hormone) which can greatly exacerbate your fibro symptoms. reduces food sensitivity, aids digestion providing better nutrition. can reduce seasonal allergies thereby reducing pain fatigue and digestive disorders caused by them. antibiotics kill gut bugs and probiotics help repopulate the good bugs

Flax seeds - contains ALA.omega 3 oil which converts into prostaglandin which helps to relieve inflammation associated with fibro. also contains omega 6 and 9 which are essential for cell membranes. contains lignans antioxidant and boosts energy and strengthens the immune system.

butyrate reduces inflammation in the gut and primary food for repair and maintenance by the cells in the colon wall.

marshmallow root - helps to repair gut lining in a leaky gut, sooth inflammation of the stomach lining, joint pain, IBS, water retention, acid reflux.

liquorice root - helps provide relief from inflammation of the gut, adrenal fatigue, heartburn, IBS, PMS, indigestion.

Fibroids

Raw Broccoli ( contains anti inflammatory chemicals, and along with the following supplements can help to reduce fibroids in the muscles) as do all the cruciferous veg

zinc (shown to shorten duration of colds and reduce inflammation)

Selenium (deficiency of selenium has been linked to skeletal muscle disorders and fatigue)

activated B6 (pyroxidine) anti inflammatory, helps with diabetes, depression, carpal tunnel syndrome, high cholesterol, osteoporosis, PMS, can help with leg cramps if taken with Magnesium, involved in the production of myelin, a protein layer that forms around nerve cells.

N-Acetyl_Cysteine - antioxidant and precursor to body producing glutathione, a major antioxidant can help with Alzheimer's and Parkinson's, muscle performance, asthma. can have side effects.

Note - There was a study that found that 2 cups of raw organic broccoli a week (raw broccoli has a chemical that is destroyed by cooking) along with these supplements every day helps to shrink the fibroids in your muscles.

Sleep

5 HTP improves serotonin levels— low serotonin levels indicated in fibro ( helps improve sleep and reduce pain) must not be taken with anti depressants or mood altering prescription drugs! or st johns wort. can help with decreasing carb cravings.

tart cherry juice, anti inflammatory - can reduce muscle pain, inflammation, and help with muscle repair. 8-12 oz. twice a day can improve sleep as it contains melatonin.

Magnesium (muscle relaxant and responsible for many essential chemical reactions in the body) deficiency in magnesium can lead to reduced ATP levels and increased P levels (pain transmission)also implicated in bone and cardiovascular health, mood and cognitive function, and may help with reduced insulin resistance and metabolic health..

magnesium types -citrate, malate, glycinate, taurate, threonate.

Curcumin ( active ingredient of turmeric, anti inflammatory)

viamin d3 and k2

ginger (anti inflammatory)

inulin - fibre that feeds the bacteria in your gut, aids the growth of beneficial bugs. start small amount and build up.

melotonin, but it gives me nightmares

General —-

sugar cravings

Chromium ( stops sugar cravings)

Cinnamon (blood sugar balance )

acetyl l carnitine (can lower blood sugar levels along with exercise, can help with neuropathic pain in hands and feet)

anti inflammatory

Quercetin ( stabilises mast cells, which are part of the immune system and which fibro can send into overdrive and can cause inflammation and sensitivities to develop.)

Arthritis

Hyaluronic acid ( 300 mg once or twice a day for a minimum of 4 months to see if it is going to work for you.

Chinese herbs

Ge Gen Tang (facilitates blood flow to the upper back area) Zong Fan Zho to work holistically acupuncture and herbs.

diet

avoid:- chemicals in food, caffeine, sweeteners, msg, sugar and sugar like products,fructose, glucose etc. ( see article secret sugars, the 56 different names for sugar;-virtahealth) carbs, wheat based foods, gluten, dairy, these are the most badly tolerated foods generally. observe your body's reaction when you eat these food groups for 24 hours after and see if there is discomfort or worsening of symptoms.

eat :- organic and chemical free where possible, if you can’t get organic, soak the veg and fruit in water and bicarbonate of soda for up to 20 minutes to remove the surface chemicals.

Lots of fruit, berries are best as they have the least amount of sugar, lots of vegetables, including cruciferous veg like broccoli and cauliflower and asparagus and spinach both raw and cooked, grass fed organic beef, organic chicken and lots of fish,

healthy fats :- organic olive, avocado,coconut,oils and organic butter, if you must have potatoes then sweet potatoes are an alternative that is ok.

other treatments

accupuncture

lymph drainage massage

myofacial release massage

physiotherapy

breathing oxygen under pressure

look at wahls protocol for MS and auto immune diseases

I've used a Chinese formula called anmien pien (Amazon), another one called Sleep Tonight by enzymatic therapy (Amazon) and another Chinese formula called suan zao ren tang by plum flower (Amazon). These all worked well for me. I also use an Apollo Neuro and the app chill pill. A progesterone cream at bedtime will really help with sleep if you are female. These creams are also available through Amazon.

Chrisbel profile image
Chrisbel in reply to Chrisbel

somehow someone else's stuff was added at the end of my notes, sorry, the last paragraph is not mine. cheers Chris

JayCeon profile image
JayCeon in reply to Chrisbel

Hi Chris, thanks for this load !- most of it I actually do, apart from those i don't tolerate (e.g. anti-inflammatory spices, garlic/onion-like stuff all pain my stomach, 5-HTP & melatonin), and those that didn't work (acupuncture hurt, ozone injections no effect), but a few new things like raw broccoli - wanted to eat more of it anyway...

Epea profile image
Epea in reply to Chrisbel

I need to lie down in a dark room after reading that 😅 you've done lots of homework! Hope you are well xxx

Chrisbel profile image
Chrisbel

yes thanks, life is quite good, the next thing I am going to do is to sell up and move to the desert region in Spain by the sea, as I always feel much better when I am there. Hope you find some use in my post.xx

Epea profile image
Epea in reply to Chrisbel

Ooh what a lovely place to be well jealous 😍 yes lots of information to refer to thank you

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