Fibromyalgia Action UK

Light at the end of the tunnel :)

I saw the new consultant this morning and he said fibromyalgia is curable. He said there are no drugs that work but that pain-clinic, CBT & graduated exercise combined can get rid of it and give me my life back :) I'm just waiting now for him to sort it all out. I'm feeling positive for the first time in ages :)

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I truly hope it works for you and good luck. Keep us posted - a cure would be a miracle.

Im skeptical. Have had fibro/cfs for 10 yrs. Pain killers help me a lot. Pacing help me a lot. Exercise when I am able.

Fibro hugs

Mirei

P.S.: will forward yr improvements to my sister as both her daughters hv fibro/cfs.

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So far it's all theory. He's going to sort out all of the referrals etc. I'm trying to remain positive although I did have a little doubt when he said 'its cureable if you want it to be' why on earth would anyone not want it to be cured...I'll keep everyone updated

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Sorry hun if you want it to be smacks of physcology and its not in our heads but i hope he cures you we will all be waiting to line up hugs

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hi thats great news for you

i have to admit i am too skeptical only because iwth other conditions added its difficult to know whats doing what.

you be the great guinee pig though to tell us about it all and how it goes.

i was skeptical with clairvoyants as much as i like them but its not all as it seems .

fingers crossed for you

lots of love

caroline xxxx

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ps i was in your shoes!! i forget foggy lol

i was refered to a Brain specialist by Neurolgist and i was told the same thing .

makes me wander as i said Migraines how you suffer and asked him if he suffered the answer was yes and i said when its there its there you cannot get shut until either medication helps or it relieves itself!!

Migraines too can be disabling as affects vision (i get it) usually a shock in life sets it off though for me.

this condition i do not believe is like that because i am pretty positive independant person and no way would i allow anything to stop me and i still dont i carry on the best i can so why can it be cured?

there are many who had it for a lot of years and nothings helped.

yes got to think positive and i am going back to the Brain specialist (clinical physcologist) as i stopped avouter a couple of sessions.

i was laid up and then never made another appointment, i wanted to do it merely for the experience and because i was given the opportunity because i could not afford it !

and then i could say if it does help..

but its like anything we do in life or take ..we all take things in different ways some it can cure some it cannot ... i will sign off with that lol xxx so i guess we both will be seeing ahha

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I have MCTD as well but he seems to think the current issues are due to the fibro not my MCTD. He's even talked of taking me off my methotrexate which will be great.

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I saw a consultant last October, it may have been the same one as he told me exactly the same. I have received my invitation to attend the course today. On the information sheet, it quotes that "the aims of the pain management programme is to improve quality of life, not cure their pain. It helps:

- Understand what causes them to be in pain.

- Learn different ways of managing daily activities.

- Reduce effects of stress and relax

- Deal with diffucult thoughts. And feelings of pain.

- Become fitter, more active without making pain worse.

- Feel more in control of their pain.

Anyway I have first meeting on 24th, so will let you know how I go.

Jo

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I think the theory of it works... if you can rest when you feel like it, take a little exercise when you feel like it...and take the right amount of medication without suffering from the side effects, then I guess that would work! But real life gets in the way for pretty much all of us, and the luxury of pacing properly and not overdoing things is simply not possible. So if I feel like I've overdone it just by getting up and dressed in the morning, I can't then have a nice rest and do some relaxation exercises when the clock's ticking and I've got to get to work! I guess the same can be said for anyone with children - they need taking to school and feeding and looking after when the day demands it, not when our body feels like it, unfortunately for us.

But good luck anyway, and I live as always in constant hope that someone will be cured :)

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Was it prof Wordsworth? If so please let me know how you get on.

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I hope it doesn't depend on complete attention as I'm still trying to hang on to my job

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hi SuzyB how wonderful to be given HOPE :) , i think thats why we despair as it seems this condition is never ending , warm hugs xx

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Suzy what you have been told is slightly misleading unfortunately because at present there is no known "cure" for Fibromyalgia. Without effective treatment Fibromyalgia does tend to get worse over time, however with effective treatment it is possible for it to improve and some people can even go into remission and be symptom free.

Fibro is not a medically progressive condition where it would get worse no matter what and you can also improve, no matter how severe the Fibro is. A comprehensive and accurate diagnosis and getting effective treatment are key. To get these, most people with Fibro in the UK need to educate themselves and become expert patients.

(((hug))) xxx

Libs

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Oh. This consultant said anyone could be cured if they wanted it bad enough. He said there aren't any drugs that help but that I needed to go to this pain rehab clinic and for CBT & be taught a graduated exercise programme. As this is my 3rd rheumatologist; the first with the diagnosis of MCTD was private & being private they won't cover chronic conditions, the 2nd was NHS and after 3 years she said I just had to live on painkillers and put up with the fibro I said to my GP I wasn't happy with that so he referred me on, so hence at no 3 in 5 years but this consultant had a go and said I needed to stop seeing so many drs about it as it doesn't help.

I want to stay positive for these treatments though as otherwise I have nothing...

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By all means remain positive because that really helps with Fibromyalgia, but the comments made are misleading. It is possible with effective treatment for you to improve which will affect your quality of life and general well being. As mentioned before, the more information you have and the more you understand will also help you to manage your Fibromyalgia better.

To say "anyone could be cured" is not correct, but it is possible to improve and even go into remission with no symptoms. There is no guarantee of either unfortunately. It is all dependent on effective treatment (treatments and meds) and understanding and management of symptoms. It is also incorrect to say that there aren't drugs that help because there are many medications that help people with Fibromyalgia.

It seems you have seen a variety of Doctors and Consultants and they do tend to vary in their opinions and treatments. I personally saw two Rheumatologists, one wouldn't even recognise Fibro as existing which is why I transferred my care to another Consultant, the second gave me a diagnosis along with meds that have made a tremendous difference to me and my life. Unfortunately it is all very variable and so is the information we tend to be given sometimes.

Keeping positive can help you enormously with how you manage your Fibromyalgia. :)

xxx

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How do you become an expert patient with so much conflicting information on the Internet? I've said I'd just be happy if I could walk to the pub with my husband once a week. I miss going out with him so much but it's too far for me these days

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It isn't easy I admit, but if you look at the info taken from our main site at FibroAction there is a wealth of info about Fibromyalgia there -

fibroaction.org/Pages/About...

There is conflicting information out there but if you choose reputable medical sites the information tends to be consistent. NHS sites, Patient.co.uk to name but two.

Any queries or concerns you may have, please feel free to ask and we will do our level best to reassure you or at least point you in the right direction.

Hope this helps.

I understand completely about you wishing you could go to the pub with your hubby. I am so reliant on my dear hubby but I yearn to be independent and do things myself like I used to. I honestly understand how you feel. xxx

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What Libs has said is true. Fibro isn't curable. I have learnt to manage mine with supraphysiological doses Cynomel (T3) but my endo is trialling me on Erfa (natual desiccated thyroid) at the moment as I also have thyroid disease. I have found that when my free T3 is low, my fibro is unbearable. I can feel the fibro returning while on Erfa but maybe my dose isn't high enough. He did prescribe enough for me to raise my dose when necessary but I prefer to take it slowly and listen to my body.

Remaining positive and being stress(if possible) free does help does help so do stay positive and good luck with the treatment. x

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Thank you Silky for your comments. :) xxx

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Hi I went to a lecture by Prof Holman of Seattle who has found that 71% of people with fibromyalgia have problems with compression of their cervical cord and they are in effect curing people by dealing with that, by either surgery to fuse the cervical cord, or neck manipulation, or exercises which are Alexander Technique plus. I couldn't get the MRI in UK from either private or NHS doctors but I came to Dubai and had an MRI - and would you believe I have cervical cord compression. I am having physio here at the moment, its early days yet but (a) this shows a physical reason for the disese because 'stroking' of the cervical cord as you move your neck causes dysautonomia and fibromyalgia is a form of dysautonomia, ie., your autonomic nervous system goes into chaos instead of working properly and it controls everything in your body. Apart from being somethting that can be helped, it also is a real problem that can be viewed in black and white on a MRI scan - even I can see it, so it shuts up the doubters. The problem is that if you know more about the disease than your doctor in UK they just don't like it, and the drug companies don't want it to get out because they are all developing expensive wonder drugs for fibromyalgia, so getting the word around is really difficult. But we need to really spell out the message so that people know about it. I think this is the only chance of a cure, although some people do have a spontaneous recovery but only in the first year or so after they get the symptoms.

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Very true Jjudith I live in UK and eventually paid to have MRI done privately. Yep I have degeneration of the spine. Plus Fibro. Have to use mobility scooter - stairlift. My son commented last time I saw him and said 'Mum you might as well have a 'tag' on your ankle seeing as you are limited - cheeky monkey - of course I TOOK IT as it was meant. Althought not far from the truth other than mobility scooter taking me into town I cannot go elsewhere unless someone gives me transport and able to take a wheelchair in the boot. Times I get rock bottom but I do realise there are some fairly good days and that is what i look forward to. It sadly is a case that we have it and can only do what our body lets us do on a daily basis.

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"The problem is that if you know more about the disease than your doctor in UK they just don't like it, and the drug companies don't want it to get out because they are all developing expensive wonder drugs for fibromyalgia, so getting the word around is really difficult. But we need to really spell out the message so that people know about it"

Jjudith - this is soooo true!

The last GP I talked to about this basically laughed me out of the surgery! It takes a lot of energy to get it into your head how to ask a doctor about a referal only for her to say that there is nothing neurologically wrong with you. I felt like saying "if fibro is neurological and you think this, then DO I have fibromyalgia after all...answer that.....or should you send me for a second opinion?". MMM maybe that would work? I have found out that our health authority ticks the "other" box with fibro diagnosis, so actually believes there is no call for support services for this condition. I believe I could have this compression.

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Thank you all. Don't worry I'll keep you posted

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Take care Suzy and please know that we all understand and we are all here for you as we are for each other. xxx

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If I do find anything that helps I'll be sure to share it as well. And I'm not leaving or anything I mean this is the NHS it could take months to sort out appts etc

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Hello everyone,

This is my first time posting on this very valuable site. Ive had fibro for 43 years. I got up one morning for school aged 14 with really bad pain in my neck, shoulders, arms and wrists. My mother took me to the doctors and he referred me to the hospital. Top and bottom of it was I was diagnosed as having arthritis.

Over the years it got worse and spread but i got on with things (and a few aspirin!) because being so young i refused to let it get me down.

I held down a job when I left school until age 19 when i got married and had my first child.

Two more children followed, then a divorce, a re-marriage and another baby.

My second husband was chronically ill with long term diabetis, heart failure, renal failure (on dialysis) and other related problems and it was while we were at the docs for his problems that he mentioned mine to the GP.

By this time I was about 37.

The doc sent me to see a specialist who diagnosed fibromyalgia. At the time he told me not many doctors in the UK had heard of it but that there was a consultant in Canada who was studying it.

I was told that i could have a cocktail of drugs that would probably knock me out for most of the time but that was the best he could offer.

I had a sick husband, a young baby and 3 other children so could not afford to be 'out of it' on medication so I declined and carried on as before gritting my teeth and muddling through!

What I would like to offer after having had fibro for all these years (and I have every symptom going) is that its imperative to stay positive and try to avoid stress as much as possible.

I know thats easy for me to say but stress makes fibro much worse.

When my husband was dying I practically crawled on my hands and knees as the stress caused so much pain. Sometimes I know stress cannot be avoided but fibro reacts to stress by creating more pain and so it can be a vicious circle.

A positive attitude is also imperative. If one focuses on the pain then its at the forefront of everything that we do...it becomes magnified which in turn creates more stress.One has to learn to try and put the pain on the back burner and get on with life regardless. Get shirty with fibro and tell it to clear off. It wont magically go away but it does help if you can try and be in charge of it rather than it be in charge of you.

Dont give in to it as that in turn causes depression.

I'm now taking medication for the first time since being diagnosed which is Zapain (paracetamol and codeine) and it helps take the edge off. I wished I had discovered it sooner!

But please, take it from a veteran, a positive attitude is a must to maintaining some sort of quality of life. That...and a healthy sense of humour!

Sorry this post is so long.

with love

moonsong

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Yes I agree, staying stress free is a big thing in helping to keep the disease at bay. The trouble with fibromyalgia is that it has lots of nasty friends and if you have it you are likely to get something else as well and each one is a new hurdle - it seems as if I just start feeling better and some new disease kicks me in the teeth - myofascial pain syndrome, dysautonomia, interstitial cystitis, and each time you are hit with a new set of symptoms and struggle to get doctors to understand that you really do have symptoms are you are not imagining it before you finally get a diagnosis, you roll to the bottom mentally and then you have to pick yourself up somehow and start clawing your way back. I know I am not alone with this. But on the other hand, I have had to give more of my life to me and less to others, and do what I enjoy more because unless I do I am so ill. That is ok for me with no money worries and a lovely husband and grown up children, but it is more difficult for others who are younger and the disease itself often forces them to live in poverty and isolation. I can see in that situation it is difficult to see anything positive in disability. I really feel for people trapped in that situation and I just would like to think that the medical profession and the world in general could understand more how this condition affects your physical, emotional, psychological, social, sexual, and financial part of your life, it affects your identity as you have to give up your notions of what you are and accept a new you that you really didn't want to be, and you have to give up your dreams and map out an entirely new life. And others around you might find that change just as difficult (or even more difficult) so it affects relationships too.

I do admire so many of the friends I have made with this devastating disease for carrying on in spite of everything, managing to get by financially and to cope with the demands of thier families. Just to say here that I really, really think that to do that takes such courage and you are all wonderful to keep going, so be proud and realise what you are doing is so amazing, and that will help you to stay positive.

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hi i have done the pain managment courses sent to tai chi classes tried varries meds they all helped to a degree and i was told no cure just help for a better quality of life and at times it works

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While i hope your positivity is justified and you regain crucial elements of your life please please please be very cautious. I do not mean to be the voice of doom i am concerned that your dr is in one of two dangerous camps either he is a non believer or he has been negligent by giving you false hope. That is not to say that you should not hope for improvement and management of your symptoms. Postivity is vital however so is a sense of reality. Please do not believe you are cured if you bevome symptom free, as you will be in a state of optimum management of the condition and it does not mean that it will not come back if triggered.

I speak from experience. I have been there and have also been bedridden as a result of a fm specialist physio attempting this "cure".

Take care and be aware of your limits.

Fingers crossed for you

SAPPH

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Many thanks for all of your comments. I am going to take his words with a pinch of salt as he is the first dr to speak of a cure and his comments about if you want it badly enough seems to suggest he thinks fibro is something that the patient can control through determination and even though I was only diagnosed a year ago I know that's not true. I just hope I can find some relief or way of managing it more effectively

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There are so many variables regarding Fibromyalgia Suzy even the medical experts can't seem to agree. It is possible though through being positive within ourselves, getting sufficient rest, adapting our lives, the correct meds to help manage our pain and other symptoms etc to increase our well being and our general quality of life.

We can still leave good lives having Fibromyalgia, it's all a question of ensuring we have effective meds and treatment, get support where it's needed and ensure we have the knowledge to manage having Fibro etc.

Hope this helps, I know it's a minefield. We are always here to help and support where we can Suzy, so any queries you have we will try our best to help you or at least point you in the right direction.

(((hug))) xxx

Libs

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When I was first diagnosed with this, dispite having the symptoms disrupting my employment for 17 years at that point, my manager said he had been told by the occi health doctor that it was curable. I had to educate him, bless....

To this point, reducing my hours to part time has helped, but then when my attendance improved, he asked if I would be able to work at keeping my attendance up, I had to educate him AGAIN..... but at least I am still in a job I can cope with and which was made for me. But he is leaving soon, so it will be interesting to see what the NEW management will be like. The manager BEFORE this chap was was atrocious, and I feel the trauma HE caused actally caused the fibro. I feel for anyone actally going through troubles at work through this. I had it really bad for around 7 years trying to even understand what was going on with my health along with a really really bad boss before my diagnosis, so at least this manager is better.

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It is doctors like this that are listened to by already sceptical doctors who then end up telling us we should be over it by now.......I think it can be "managed" - I don't think there is a "cure"

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Hi SuzyB -- I am not trying to "lower your spirits" but I don't believe there is a "definitive miracle cure" for fibro (I think we would all of heard of it by now if there was and your consultant would be very rich and famous!!)-- I think what your consultant is meaning is "there is a way of learning to adapt your lifestyle so that you can live with fibro by reducing your symptoms to a minimal level -- on a good day having no symptoms at all" This is why he is suggesting these therapies so that you can learn to live your life in a new way (hope this makes sense to you!) I have been learning to do this for several years and I believe the "cure" involves:

1) Acceptance --- learning to accept that you can no longer do all the the things that you used to do.

2) Pacing -- going for 20 min walks, instead of an hour or ironing for 20mins instead of an hour

3) Learning to say "NO" -- when others are asking too much of you or expecting you to do too much.

4) Learning to ask for HELP from others when you cannot manage to do something by yourself.

5) Educating your family and friends so they can understand

6) Learning to handle stressful situations in a different way

7) Learn to be very organised and plan things very carefully -- not doing things on the spur of the moment!

The list is probably endless -- but this is the starting point for me.

Good luck with all your therapies, :) xx

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Hi Phlebo, does that mean that I need to change my job? Almost all of my stress comes from my job. I work four days a week and have a 90mile round trip to/from work. I know it makes my fibro worse but can't do anything about it. I had hoped that this 'cure' would get rid of it enough to allow me to continue to work

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Hi SuzyB --Not necessarily -- I manage to work 1 full-day and 2 half-days a week and have a 20 mile drive each way. Do you enjoy your job (apart from the stress)? Can you maybe work less hours? Or are you doing a job where you can maybe work at home one day a week? Or are you able to find a similar job that is nearer to home and involves less travelling? Do you drive to work? Could you maybe take the train/bus on a couple of days to reduce the driving?It is all about finding ways to make things easier (and hence less stressful for you) and that is the hardest part of learning to "manage " this condition. Do your work colleagues know about your fibro -- keep them well informed and if things are getting too stressful are you able to delegate some of your workload? It is all about adapting your lifestyle to make things as stress-free as possible and learning how to deal with stressful situations in the best way possible --- it will involve a lot of careful thought from you and making difficult decisions. Hope this helps -- xx

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I work in a high stress IT environment and don't particularly enjoy it as much as I once did. I hate all of the politics and the games that goes with working in finance IT. Because of where it is public transport is a no no I'm afraid. I've cut down to working from home one day a week which I call my pj working day but so far it's not made a huge difference. I am retraining at the moment but of course it takes time.

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There are lots of facets of this illness. Plus we're all different and have different needs.

I wonder how many fibro patients your GP has cured, because to my knowledge they haven't published any cure yet....

Its good your Gp has given you hope....and a drug free one, which I know IS possible. I don't take any medication apart from some supplements.

For me. the side effects of medications are more toxic than their possible benefits.

CBT and graded exercise are what the NHS offer as recommended by the NICE people. Trouble is their evidence isn't based on fact. Its based on psychiatrist recommendations and works REALLY well for depression patients....although they also have anti depressants.

However there is no doubt that CBT can help us grieve the healthy life we leave behind, and to cope with having a chronic illness.

Exercise can help us to stop muscle wastage and can lessen pain.....but without pacing it can also bring about a big crash.

Pacing is REALLY important.

I've also found that recognising our own toxic triggers is REALLY important.

Theres a lot we can do for ourselves to help us get our lives back....but we will always have this illness....The damage is already done unfortunately. The level of our suffering however CAN be lessened.

9 Diet Commandments for Pain Patients

Although the research on diet and chronic pain is limited, experts suggest the following may help:

1. Cut back on carbohydrates. This will help stabilize your Omega-6 to Omega-3 ratio. Additionally, according to Kent Holtorf, MD, the founding medical director of the Fibromyalgia and Fatigue Centers, about 90 percent of fibromyalgia patients have low adrenal function, which affects the metabolism of carbohydrates and may lead to hypoglycemia. Tip: If you eat carbs, it is best to eat them with protein and fat.

2. Consume plenty of Omega-3 fatty acids. Omega-3 fatty acids, found in salmon and a variety of other fish, are said to reduce inflammation. Fibromyalgia and arthritis patients have reported feeling much better once they increased their consumption of Omega-3s.

3. Avoid aspartame and other artificial sweeteners. Aspartame is an artificial sweetener found in diet sodas and many sugar-free sweets is part of a chemical group called excitotoxins, which activate neurons that can increase sensitivity to pain.

4. Avoid MSG and other additives. MSG is a high-sodium flavor enhancer often added to fast food, Chinese food, and processed packaged foods. It is an excitatory neurotransmitter that has been linked to stimulating pain receptors.

5. Avoid or limit caffeine. Fibromyalgia patients often suffer from unrestful sleep and fatigue, and often try to remedy their fatigue with caffeine. This only perpetuates the cycle of unrestful sleep. Try cutting back, and then eliminating caffeine completely (this includes coffee, certain teas, and chocolate) to see if it makes a difference for you.

6. Avoid or limit intake of nightshade vegetables. This includes tomatoes, potatoes, and eggplant. Some fibro and arthritis patients have reported feeling worse after eating these vegetables. Others have reported feeling dramatically better after cutting these out.

7. Avoid or limit your intake of yeast and gluten. Celiac disease (allergy to gluten) has been found in some fibromyalgia patients.

8. Avoid or limit your intake of dairy products. Fibromyalgia patients on vegan (no dairy) diets have reported improvement in their condition. About 70 percent of adults worldwide have some degree of lactose intolerance, so it is not surprising that some fibromyalgia patients do too.

9. Eat more fresh foods, and in particular, organic foods. This means foods without additives or preservatives. Patients have reported feeling better eating fresh foods, and in particular foods without pesticides and chemicals. Roughly half of fibromyalgia patients also suffer from irritable bowel syndrome (IBS). Foods that irritate the bowel trigger the brain to send a message that signals fibromyalgia symptoms and perpetuates pain.

Experiment with cutting out the suggested foods (either one at a time or all at once) for a couple of weeks to determine if they have an effect on your pain. At the same time, begin to add the suggested foods to see if in fact there is a correlation between your diet and your pain.

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From experience, ide say he knows what hes about. I kicked the fibro for 10 months by a carefull keep well plan that included no drugs. Excercise, sunshine, laughter, love and trying to keep stress free with relaxation therapies. It wasnt cheap as none of it was funded but it worked until health specialist insisted to barrister I gave up wellness plan in preperation for court case which took 5 years. 2 months after I stopped I had a neurological collapse and have never been well since then (2011). I am working my way through the same steps, but its very hard and it is taking so much longer with the added neurology issues brought about by being forced to listen to lego medical "advice" and contracting shingles in the process.

Listen to him and push to get the help you need, I hope it works as well for you as it originally did for me.

:) NN

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I can't afford to pay for it all

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Most of the help you need doesn't cost anything Suzy, pacing is the most valuable tool when managing Fibromyalgia and that doesn't cost anything. Your GP can refer you to a CFS Clinic (Chronic Fatigue Syndrome) if you have one locally and you would be taught usually by an Occupational Therapist, Pacing Therapy. I went to a CFS Clinic and now use pacing as part of my everyday life, it has been invaluable to managing my Fibro and CFS.

There is a wealth of useful info on this thread, many thanks to all for taking the time to comment, it is much appreciated and I am sure it will be most helpful. :) xxx

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Thank you I will see what the consultant comes up with

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Bless you Suzy, take care. Please let us know how you get on. We are always here for you and we will do whatever we can to help and support you along the way. :)

xxx

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I will do.

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I will do.

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:) xxx

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HI, it's very important to keep in mind that Fibro can be cured. I have ME/Fibro and a friend has fibro. She was told by a nurse at Leeds Hospital in a unit which is supposed to specialise in ME& Fibro that "there is no cure...it can only be managed". She was offered very little in the way of help and won't be going back. She has used relaxation techniques such as mindfulness using the Breathworks course ( a not-for-profit course I can highly recommend - breathworks-mindfulness.org... Neuro Linguistic Programming, yoga, Emotional Freedom Technique, healthy eating, pacing and now seems to be on the road to recovery.She also improved after coming off amytriptaline. There is hope for us all. x

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See this is why it's confusing some on this thread say it is cureable and others say its not

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sorry to burst your bubble i am nearly a year down the line at the pain clinic going over stuff i did ten years ago a ended up breaking my foot and the pain was unbearable still going through the process then no one can say i havent tried but no change at all. sorry

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