Cure for Fibro!?!

Hi All,

Has anyone read the e-book 'Fibromyalgia Gone Forever' by Marcus Bloom?

I'm keen to hear from anybody whose heard of it or read it. The author's allegedly discovered a cure that doesn't involve any lotions, potions or medications at all!

Anyway, thought I'd get the post in before going to bed - I'm sure I'd have forgotten in the morning. It's just after midnight and I feel like I've still got two spoons left - been a good day!

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  • Hi Reykua

    I haven't read the book but I've heard of it like you, but I tend to think that if he has found a cure the Medical Profession would have known about it by now, don't you think . Call me a synic as I've had FMS and ME for 32yrs and they still haven't come up with anything yet. Sorry about that I'm not feeling good at the minute just having a moan. I'm glad you have had a good day.

    Take Care night night, Pat xx

  • Thank you for responding Tiluca, I completely understand where you're coming from and don't worry about feeling grouchy or having a rant, we all feel like that at times - especially when the Fibro or other health conditions are getting us down.

    I'm a bit of a cynic myself because I'm convinced that the medical profession have got us tied into this cycle of meds to help us feel better - which most don't, then other meds to deal with the side effects of the original meds and on and on it goes. Every time I go to the doctors, I'm offered some sort of pill to pop or injection to alleviate my suffering and having tried most of them, I'm keen to find a way off this particular hamster wheel.

    Wishing you a full set of spoons.

  • Hi I feel the same as you, re meds, at present my GP is weaning me off pregabalin (liycra ) and amitritilyne I feel so crap just now and I am being offered injections and alternative meds. I am confused as the above meds , I was prescribed by my pain consultant, and was damping the pain, I too feel as if I am on that hamster wheel , and O what is this about spoons ?

  • I too would like to know about spoons, can someone please tell us.xx

  • Hi iluvcatsuk,

    It's always nice to hear from a fellow animal lover. My first pet was a cat so I luv cats tooooo!

    Check out the website - butyoudontlooksick.com

    Everything you want to know about The Spoons Theory is there plus some additional inspirational quotes as well. Enjoy.

    Wishing you a lovely pain free, fluffly and purry day and loads of spoons to use as you wish.

  • Hi enirehtac17,

    Thank you so much for contributing to this discussion, It's lovely to know that I'm not on my own and there are actually many of us disillusioned 'enforced junkies' out there.

    Information about The Spoons Theory can be found at the website - butyoudontlooksick.com Have a look and let us know what you think.

    Wishing you a lovely bank holiday, less pain and an extra handful of spoons for the rest of the week.

  • Hi and how are you today ? I did read about the spoons, and found this to be a great way of explaining, say how my day may be. I could relate to this article. Also , looking at me , without my walking stick people think I do not look ill, tonight or I should say morning, "I am hurting from head to foot, so it is not worth going to bed, I am thinking , do I borrow a spoon for later today ? I have decided to think positive, ha that's until I try and get put of this chair, and why am I having this flare up ? its because, I took no notice of my pain and over did it. Why did I over do things you may say ? well that is because I visited my daughter, and played with my grandchildren, used up all my spoons. I took no notice, then went shopping with my husband, then spent all evening hurting. I will keep in mind the spoons, and pace myself, many thanks for sharing this. I send a big hug and handful of spoons.

  • Just for once I'll keep it short.

    Yup. If there was one for everybody the NHS would have snapped it up years ago.

  • you might find some useful ideas in it, but if there was a cure for fibro, I'd be the first in the queue to buy it! we have some useful info on our parent site fibroaction.org

    I've never heard of him or the book, maybe they could get it at your library for you.

    regards,

    hamble.

  • Sorry hamble, I think I will be at the front of the queue because age comes first and I'm 90, he he

  • If you feel like 101 would that put you ahead in the queue :p

  • No, because my 93 yr old dad is fitter than me so that makes me about 120!

  • Its sad when your parent can beat you in a race, so we should cheat and disadvantage them hehe :)

  • Thank you so much for responding. I've been with the forum for a while so I'm very familiar with all the sites - I think I've clicked on virtually every item on the right hand side at least once or twice but it's always good to have a reminder.

    I'm really feeling like my life is stuck at the moment with al my health issues. I'm just going round in circles trying to find a way to cope better, some sort of magic bullet I guess. I know I'm not the only one that's felt this way from time to time so I'm sure you can appreciate how excited I got when I saw this e-book being advertised. Fortunately, not so excited that I'd part with any coins before checking it out with the experts on this site.

    Unfortunately, it's not at any of my local libraries so I'm assuming you can only download it online.

    Wishing you many, many good days ahead

  • Hi my opinion and experience - I think that there are people who control their fibro really well by their lifestyle, and some people who have an underlying condition that aggravates the fibro and makes it intrude into your life, such as posture therapy and other treatment for for positional cervical cord compression (PC3) or candidas which is treated by diet and lifestyle choices, and there is also evidence that increased anaerobic exercise always has a positive benefit - and I don't find that surprising because stage 4 sleep is achieved better if you take anaerobic exercise. For me, I was an exercise freak before I became ill, and even at the beginning - when I did spend one week in bed - I struggled to get to the gym every day except Saturday, and I think it has really helped to keep my pain etc in check, though sometimes it really needed a will of iron, but my body was already toned up so it was able to do it, and I think it has really helped with keeping my symptoms manageable. But my way is for me, and other people have to find their own route. I also think that when people find a solution that works reasonably well without the use of expensive medications, the drug companies that are developing new wonder drugs for fibro use their power to stop that information getting through to sufferers, and they influence the medical profession to be very sceptical - our health service is a disease service rather than a health service and doctors are tuned in by the system to think of tests and medicines, and its hard to crack that way of thinking. I think that there are many things that actually cause the body to develop fibro - each individual is an individual - but I am convinced by research that whatever the initial cause it develops into a form of dysautonomia, or a disorder of the autonomic nervous system, which is why it affects the whole body in unpredictable ways. I also think that getting to know fibro and almost welcoming it into your life in some way defeats it and makes the symptoms improve - really feeling the stress of living with it then creates a cycle which makes it worse. I think reading about other people's experiences is really useful because it might put you on to that track. Good for you that you are learning more about this life changing condition, and keep us informed if you improve. My opinion! Love and hugs x

  • I do agree with you, it's hard sometimes, but keep moving is my way, I'm doing race for life again next week, I hope I make it, but it's worth the effort xxx

  • Good Luck!

  • Well done lefraorchard, hopefully next year I'll be joining you at the start line and God-willing, at the finish line! xxx

  • Thank you so much Jjudith, I really enjoyed reading your response and feel a great deal calmer and more knowledgeable as a result.

    I think you've actually hit the nail on the head with the expression 'getting to know fibro and almost welcoming it into your life in some way defeats it and make the symptoms improve - really feeling the stress of living with it then creates a cycle which makes it worse!' It almost sounded prophetic or clairvoyant because it is exactly how I've been feeling for the last three years. I've just not been prepared to almost welcome Fibro into my life.

    Now that I've cottoned on to your 'see far' qualities, I shall definitely call on you from time to time for more advice. Many, many thanks again. I shall try to adjust myself, my thinking and my life accordingly.

    Wishing you many more good days filled with wisdom and optimism.

  • I think you've hit a nail on the head too. As I look around it seems stress aggravates anything, and some of us even make our own and are unable not to. So lets take control of our stress where we can and the fibro/cancer/whatever might seem more liveable with.

  • You're so right fenbadger - looks like I've been internalising my stress for so very long that I don't even know how not to anymore.

    I really need to retrain my mind and my thinking - start looking at things from new perspectives. My daughter has even suggested I take up meditation - not good at sitting still and just letting my thoughts wander but if I don't give it a go, I may regret it later. As you say, controlling and managing Stress may indeed be the key.

    Wishing loads of positive energy vibes and a handful of extra spoons today.

  • I don't know about the Key but a tactic or strategy in the arsenal of dealing with a long term condition.

    Spoons to you too. It's a good way of looking at it. I like Mayrose's dodgy battery with a dodgy charger too.

    How about progressive muscle relaxation? There's plenty of audio on online vendors. I have a CD produced by the NHS and it's ok. They all seem much the same, just minor details.

    You've taken the first step - taking the decision. It can be a long road though. Took me 10 years and I still blow up sometimes - that's when I get a headache and a flare. A rather trite but true saying is "this is the first day of the rest of your life." I'm sure stress control is as much a part of my treatment as the medication. I think PMR works in 2 ways. It does get your muscles to relax by making your mind relax. When you empty it and breathe slowly it seems to come naturally.

    People around me get annoyed because I'm so laid back but I don't let that worry me either. It's noticeable the world keeps turning. People still have fun or kill each other whether or not I get wound up. I save that for things that are worth getting wound up about. Lavender scented hugs

    Oh, and that acupressure thing. Tai Chi talks about the "triple heaters". Without trying to sell it. Tai chi may be part of the treatment by being gentle exercise without power training, and focussed on particular parts of the body, rather like yoga.

  • Thank you so much fenbadger, will definitely check out the PMR stuff online although my daughter seems to be referring more to Mindfulness.

    Strangely I've never tried Tai Chi so maybe that's the route for me to go next especially as this triple heater stuff makes quite a bit of sense to me.

    Lavender scented hugs gratefully accepted and a gentle squeeze for you too.

  • Good. But dont forget it's horses for courses. What works well for one may not work for another as well or in the same way. Be prepared to try several options and don't give up.

    BECAUSE YOU'RE WORTH IT

  • I do meditation, I have done two courses, I find the book from the charity Breathworks and the CD that goes with it is really useful, its called something like Living Well with Pain and Illness and the author is Vidyamala Burch (or something like that!). It isn't a panacae but it does help you to accept things as they are, I think the best thing if you are going in for meditation is to just think, well I'll see how it goes, rather than thinking that it is going to make you better, don't have any expectations when you start. As for concentration, everyone's mind wanders and you just have to keep bringing it back to the task from time to time, some days it is easy and some days it isn't. If I have a part of me that is really painful, I start concentrating on that bit to start with, and then the pain is still there but it starts to feel like a sensation rather than an intrusion, then I move my concentration away from that bit to other things like respiration.

  • Isn't it good that we have this forum to share our experiences love x

  • Yes. It's a very good forum. I don't want to say the best for fear of getting a smack from one of the others.

    I like the anonymity and the fact you can dip in and out.

    Best of all I like playtime when I can forget and have a bit of fun.

    I was in Al-Anon (not AA) some time ago and while the caring was still there I felt forced to speak and it was in the end counterproductive. I didn't really learn anything nor did I feel any better afterwards. And with a couple of members it was a moanfest you could not ignore because you'd have to rudely leave the room.

  • Good luck Reykua, it sounds as if you have found where your path starts and you just have to keep on it. Love x

  • just been trying to find this book and only find adverts and no sustenance to what he did. Trouble with an e-book is that you can not have a look before you buy. I think we all hope that a cure will be found and it may not come from your doctors.

  • Hi Betty67, that's exactly what I was thinking. I have The Most Brilliant, thoughtful and wonderful GP but I still feel like there's something I'm missing. I keep trying all the different homeopathic suggestions but feel I'm coming up short.

    As Jjudith said, it may be a case of making my mind over to almost Welcome Fibro into my life but even with the most welcome people in my life, I always find that at some point, I'm looking for the exit or a polite way to ask them to leave so I think I've still got a long way to go!

    Wishing you an extra two spoons today!

  • Judith there is a lot of real wisdom in your answer - after 20 years I too would have to say that your best weapon against it is learning what works for YOU, and always pacing yourself. I try to cultivate a positive mental attitude - half full not half empty - which focuses on what I CAN do rather than what I can't. It does help, but it isn't easy and takes real effort to sustain.

    Forgive me if I also sound cynical, but although this book may well help some people (and I have others on my shelf which make similar claims) it probably isn't going to be a universal answer. The very unpredictably and variability of the symptoms we experience means that a "one size fits all" solution seems unlikely. I've been working with the pain clinic and a specialist physio on the programme of graded exercise which seems to help a lot of people, but after 9 months have had to give up on it because I'm so much worse, but I know it has worked for many. I suspect that it works best for those who are not yet severely affected, but thats just a hunch.

  • Yes, you are right, you have to find your own way but I can see that if someone finds a way they may be tempted to think this is it! But it is only 'it' for them, and others have to keep looking. Yes, I think your are right with your hunch, with the exercise you need to start on it as soon as you first get the symptoms, as if you start later your muscles are not toned and the effort is just too much to do sufficient exercise to improve. x

  • Hello Artyrosie,

    Thank you so much for your response. It's always good to hear words of wisdom and experience.

    I've also attended the Pain Management and Graded Exercise programmes locally and although useful, find that I've not benefitted as from them as I'd hoped for partly because I have always been a fan of Callanetics and Pilates so I found them a little 'trite'.

    Of course, that's me being overly critical and judgemental as usual so I'm going to start with a making my mind over approach and keep in mind your sensible reminder that there is never likely to be a 'one size fits all' solution to this awful condition. Will call on you when I'm feeling more 'mellow'.

    Wishing you an amazingly creative day with loads of ideas and energy.

  • Hi,

    while this book may help some people, I don't think there is a cure for Fibro. There are just ways of managing it that help some and not others. Educating ourselves about FMS is the best way I think.

    Hugs

    Jillyxx

  • Hi jillylin, Thank you so much for responding, have you read the book? I wasn't sure if you had from reading your post.

    My concern with the information out there is the fact that, despite everything I've read - trust me, I've tried to read everything I can get my hands on over the last three years, I STILL feel like we don't have the full story or even two thirds of the whole picture.

    Simple questions like 'How did I get it', 'Is my daughter likely to get it as well' or 'what tablet can I take to make it go away?' simply haven't been answered. I know the medical profession, pharmaceuticals and other scientists are doing what they can to get us answers but I'm still struggling to get over the feeling that we may be missing something somewhere.

    Wishing you abundant energy and many more optimistic days

  • Hi,

    I have had Fibro for 28 years and exercised the first 20 years daily at gym with weights and aerobic exercises, but had a bad car accident which sent my strees hormones sky high and really do not want to waste my little bit of energy on exercises these days. I however work full days (office work) and cope very well. I do find any form of stress causes my pain to increase substantially - so I try and avoid it. I take a lot of supplements and eat very healthy. So I don't think there is a cure, but LDN has helped me a lot.

  • Hi there Naturegirl,

    I posted you a response earlier but for some reason, it's not showing up on the timeline.

    I'd like to take this opportunity to thank you for responding to my post and to say how impressed I am that you are continuing to work full time despite this awful condition (not to mention your accident). As someone with multiple chronic health concerns, I think the ability to work even part time is brilliant, let alone full time so well done for overcoming the odds and Kudos to all those on the forum who are also working and in some cases, providing us with essential services.

    Would it be possible to tell me what LDN is - please pm/inbox me if it's not something that can be shared on the forum.

    Really looking forward to hearing back from you.

    Wishing you continued determination and success with loads of spoons for good measure.

  • Hi Reykua,

    LDN stands for low dose naltrexone - Naltrexone in high doses (300 - 600mg I think) are used for drug addiction and blocks the receptors that make you feel high - so no high and that is how they slowly become un-addicted. Low dose naltrexone is betweem 1mg - 4.5mg and it is taken at night. A complete different chemical process. Around 2.00 o clock in the night it blocks certain "feel good" receptors and the brain/body rushes in to produce more receptors, which in turn stimulates the immune system and reduces pain, improves sleep and much more for many auto-immune diseases. To get the factual, correct process just key in "low dose naltrexone" into google and you will find all the information. For me so far it has made it possible to sleep deeply, it has taken my neuropathic pain in my hands and fingers away, I no longer take pain medication and hope to loose this frustrating brain fog . These tablets are compounded by a compounding pharmacy and a doctor has to prescribe it for you. You will find a list of doctors on LDN Research website which might be in your area. Remember I am in Africa Namibia and had to find a doctor in South Africa and we only just have started to have a few compounding pharmacies in South Africa. I personally can highly recommend LDN. The first week has a few side effects like not sleeping at all and having vivid dreams, but once you know about it you can push through until the benefits kick in.

    I have just joined this forum so I am still learning how to navigate here. Wishing you the best success with LDN. Blessings :)

    Blessing

  • So good to hear back from you Naturegirl, I'm going to check the www right away and have good read. I truly appreciate your input and will definitely let you know how I get on.

    I gratefully accept your blessings and send my thanks and blessing back to you together with a handful of extra energy spoons and lavender hugs for good measure.

  • Hi,

    I've had fibro for 8 years and currently in a bad flare. When I'm not in a flare I am active and do plenty of exercise so my muscles aren't soft or weak, but when I flare up any exercise makes it worse not better so I don't fit in with any of the hunches haha, just goes to further prove how individualistic fibro is. I wish I could exercise to make it better, I'd love nothing more, as I feel so broken when I can't move but even going for a short and gentle ten minute walk knackers me for the rest of the day. I just do my best not the let the negative swamp me.

  • Hello Tollaidh,

    Thank you for your response. It's brilliant that you feel able on good days to be active and even go for short walks when you have a flare.

    For the last three years, I've felt like I've been in one long permanent FLARE and like you, trying not to let the negative swamp me which is why I've been scouring the world wide web for any hints, suggestions or pointers to assist me to come up with my own 'cure' if you know what I mean.

    I've had some very helpful responses - including your's and although I'll keep up my search, I'll also try to be a bit more welcoming of my Fibro and try to be less stressed out with it.

    Wishing you more good days than challenges.

  • Hello Reykua,

    As I leave with Fibro too and volunteer for FibroAction I personally like to know that resources about Fibro are evidence based and/or have a seal of approval so to speak so you know you can trust the content.

    FibroAction has the Information Standard Certificate as do the NHS and many others.The Information Standard is a certification programme for all organisations producing evidence-based health and care information for the public. Any organisation achieving The Information Standard has undergone a rigorous assessment to check that the information they produce is clear, accurate, balanced, evidence-based and up-to-date

    theinformationstandard.org/...

    There is currently no cure for Fibro but Fibro can be controlled in some cases by a combined approach using medications, pacing, complementary therapies, relaxation, gentle exercise etc. However complications sometimes arise when people have other conditions which may cause other issues.

    Please see our website for information;

    All about Fibro factsheets

    fibroaction.org/Pages/About...

    Expert Patient Range

    fibroaction.org/Articles/Be...

    Complementary Therapies Factsheet

    fibroaction.org/News/New-Co...

    So, conclude I always look at any resource for these certificates, or if they've cited any research etc. I personally think if paying X amount of $ for this book had helped in such a dramatic way that the Fibro community would be talking about this!

    Obviously some books may be helpful for information about Fibro as some people may have found that they've become more informed by some. However I think books that have been recommended or have book reviews by charities or trusted sources may be the best resources for Fibro.

    I hope this helps

    Emma :)

    FibroAction Administrator

  • Thank you for your response Emma. It's always good to be reminded of how useful this site is especially in relation to keeping up with all the research and knowledge available regarding Fibro which is why I always endeavour to read everything I can on this site as well as investigate what others are saying out there in the www.

    I know for certain that my condition is exacerbate by other health issues I'm having to contend with and to be honest, I sometimes can't tell which new symptom is attributable to which condition.

    However, by far the most vexing at the moment is this Fibro as prior to being diagnosed with this, I was managing my other health issues fairly well and actually feeling like I was in some ways 'winning'. Fibro has crept into my life and reduced me to what I consider to be a 'shadow' of my former self and even more heinous is the fact that I can seem to find Any effective ways to manage it.

    I'm also grateful to everyone who has responded, especially Jjudith and Betty67 have encouraged me to look at it from a different perspective and develop a better mental attitude and coping strategies - one of which will be to continue with my search and trials. If I find anything useful or helpful, I'll definitely share it with the forum. For that matter, If anything untowards is unearthed, I'll be quick to flag it up and hopefully, protect others from falling prey to it.

    Thank you again for taking the time to respond and the really useful links you provided.

    Wishing you continued vigilance and powers of analysis together with a few extra spoons for good measure to help you carry on your invaluable support as a forum volunteer

  • Hiya my opinion is ...... the book ( not having heard of it or read it) probably is a kind of "self help" manual that explains how to pace your life in order to keep symptoms to a minimum, not a "CURE" but a way of learning how to manage or alter your lifestyle to keep stress to a minimum and not overdoing things.

    There are other fibromyalgia books, similar to this which explain "how to live with fibromyalgia" without actually curing it.... pacing, relaxation, gentle exercise, healthy eating.... not an "instant" cure, but a new lifestyle which enables you to live with the limitations of fibromyalgia.

    This is the way which I manage my symptoms. It involves learning to be very strong and say "no" when others ask or expect too much of you and only taking part in activities you are confident with. When things get too much, having the strength to stop and take a break.

    And as others have correctly said, what helps one person does not necessarily help another. It is all about working out what works for you!! And of course "counting your spoons!" :)

  • Hi Phlebo123.

    Thank you for responding and I actually think you may be right but I've followed the thread of the book and it's led me to something called 'yourenergymedicinecabinet.com' so will check it out and get back to you.

    Wishing you a wonderful and eventful day with lots of energy and extra spoons.

  • Being ill for over 25 years and in the past running a support group have met many people with Fibro symptoms and the main thing that we have in common is that we are all different. Very pleased for Mr. Bloom that he feels better but we have to work on our own disease, and that one size does not fit all.

  • Hi Betty67,

    Just following up on some linked sources online and will get back to you when I've completed my investigations and found the source.

    Thanks for your usual insightful input. Will get back to you in due course.

  • Thanks for that Reykua.

    Just had a cross email with someone who thinks that my fibro is caused by wi-fi. As I first became ill before I even had a computer I disagreed but I do think I have a leaky gut and very low levels of ADP . Also know that much worse when stress and when it is windy. I have found that Dr Sarah Myhill has a useful web site.

  • Oh yes, I've seen Dr. Myhill's website.

    It's very good with some interesting insights. I think I may have also discovered what I think is the source of Mr. Bloom's excitement. I think it's Accupressure focusing on the 'Triple Warmer Meridien'.

    I've had both accupuncture and accupressure so I know they both work to some degree for those of us with Chronic Pain. Will continue to check it out and get back to you.

  • Agree found acupressure gave some relief but I found acupuncture made me worse. After being ill for 25+ years I have tried a lot.

  • Hi Betty Well said that sums it up short but sweet if only reading a book could cure us we would save NHS millions and we could all have a pain free active life I wish hope you have a lovely day

  • ditto

  • Hi fibro10,

    I think you're absolutely right regarding the need for the NHS to save money and actually, my determination to find something that will help me reduce my reliance on medication is key to doing my bit. I'm also tired of the feeling that I'm walking around like 'maracas' and the composite side effects of all those drugs.

    My scepticism is not regarding the NHS, it's actually targeted at the way the medical professionals are trained to address illness and their propensity for usually (often automatically) writing out a script for an ailment without really addressing the condition holistically.

    Perhaps as someone who has only recently started to dig more deeply into natural remedies, I'm overwhelmed with the lack of insight (or perhaps understanding) some medics are displaying in terms of taking a 'whole body' approach to illness.

    I actually come from a family trained in the application of 'western' medicine so I'm completely in awe of what they do but they have confirmed that the holistic approach is something they have only recently started to incorporate into their training (spurred on by the likes of Prince Charles) but the emphasis is still on the 'traditional approach'.

    A recent Daily Mail article stated that we are all so conditioned to accept the status quo that we sometimes struggle or are too fearful to 'look outside the box' and instead, commit out energies to improving our situations 'inside the box' as we see it. In reality (or the way I see it) the only sector benefiting from most of us on this forum and others around the world who actually have to fork out their hard earned money for their medication at market prices is the Pharmaceutical Companies.

    If I can even cut my intake to half of what I have to imbibe now, I'll be a great deal happier and hopefully would have saved the NHS a few shillings as well in the process and if a book, video, cd, dvd, therapist, clairvoyant, guru or medium is the potential answer, I'm prepared to investigate it further to achieve my aim and hopefully feel significantly better. We all know of stories where it was evident that scientists and medics Don't Always Get it Right! So, as they say, Each to his own and To thyself be True!

    Wishing you and your's the very best health possible.

  • What have you considered so far?

  • Hi Reykua

    I sincerely hope that you are feeling as well as you possibly can be today? I do not think that I can add anything that Mdaisy has not already written!

    I want to wish you all the best with controlling your Fibro, and I genuinely hope that you can live a fairly pain free life.

    Ken x

  • Thank you Ken, it's always nice to be acknowledged by you (and your lovely wife)

    I hope you're also continuing to cope. I'm always impressed with your serene approach to issues so one day, you're going to need to share with us what your Zen secret is.

    Wishing you the same. Keep up the good work.

  • Thank you Reyuka, that is such a beautiful thing to say, and genuinely appreciated. Ken x

  • totally agree with Reyuka and wish I had thought of saying it myself.

  • Thank you Betty67, I genuinely appreciate that it is such a beautiful thing to say, thank you. Ken x

  • No but I'm also curious!

  • I was diagnosed 11 years ago

    and was also in much better

    shape! The problem is the older

    I've gotten the worse it's gotten!

    I really wish there was a cure

    What I don't understand is how there is so many others with this

    Illness! xxxooox

  • You are so right bwaite, good to hear from you and thank you for responding. Why indeed, why are so many more people being diagnosed with fibro recently? Is it a case of just giving a name to a catch all clutch of symptoms?

    Perhaps it's just a form of 'lazy diagnosing' because they can't, won't or don't know what they're dealing with and feel powerless at this point to put much time, money and effort into researching it because they're still trying to figure out what causes the common cold and we're way back in the line behind ME and CFS which have been given more official recognition thus far than Fibro.

    I'm so flabbergasted by this illness that my curiosity is keenly piqued and I'm determined to uncover everything I can about it - you never know, I may just stumble upon something that will get the medics and pharmys thinking differently about it - I'm not pretending to be clever or more capable than anyone else on this forum or indeed the qualified scientists and medics but sometimes, it takes a desperate person to look at things from another angle that may have been overlooked.

    Will continue to plug away and will keep you informed. Thanks for your good wishes and wishing you good health management in return together with the wonders of childlike curiosity.

  • Hello Reykua,

    Without my FibroAction hat on , I went looking for the book you mentioned on the internet and stumbled across a 61 page PDF sample (downloaded to ibooks) Whilst the first section has some evidence based discussion, I personally found other parts to be talking about the psychosomatic conclusion (of some) and argument often I felt implying this could be the case (of which I disagree). I do acknowledge aspects of stress and emotional distress can impact on the physical condition which it most certainly does frequently.

    The next section talks about cutting out 'milk' and we have often discussed diet,dairy, gluten, MSG and many have tried various diets. As much as these things help the second passage seems glorified 'doing this will heal you' !

    I would argue that if this is the depth of his secrets to cure Fibro forever then the claims are over exaggerated and nothing of what many living with Fibro either know about, heard about, discussed or tried before from other sources. Obviously, I haven'tread the full book but the 61 page preview made me decide NOT to buy !

    Hope this helps

    Emma :)

    FibroAction Administrator

  • Wow Emma,

    That's fantastic. Thank you so much for following this up.

    Is there any chance you can pm me to show me where to go to find this downloadable pdf, I'd still be interested in reading the first 61 pages as I'm trying to collate things together from a variety of sources and there may be something in there that I could link to information gleaned from other sources and so called 'experts'.

    I couldn't agree with you more, even reading the 'psychosomatic' thing in your feedback immediately made my heckles rise! I'm also a little fed up with the whole 'change your diet thing' as I've tried eliminating so many different things that I have to eat completely different food from the rest of my family not to mention the supplements I've bought at great expense and now include in my 'diet'.

    It's got so bad that my French speaking in-law asked over the recent holiday period if 'I was still on my Regime?' About sums up my life recently and I'm more than ready for a change.

    Thank you so very much for persevering. Do pm me if you get a chance and I'll definitely come back to you when things start to get a little clearer or indeed more complicated and unintelligible than I can handle by myself. Thank goodness for this forum and for sensible analytical people like yourself and the ongoing support you provide to all of us.

    Wishing you the best possible health with two handfuls of spoons thrown in for good measure. Thank you for your wisdom. Will definitely be picking your brains sooner than you think.

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