I have suffered with Fibro for many years, but i have still managed to keep working as a fitness instructor and personal trainer. I am now a massage therapist and I specialise in injurys, rehabilitation and pain management.
I live a pretty pain free normal life now, I sleep really well and have loads of energy! Im on some meds but I generally treat the condition holisticly.
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AmandaRalph
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I'd be very interested to hear more about how you cope and what you take. Have you had to deal with other conditions alongside such as CFS, IBS etc. ?
I can't take the meds they suggest and use a more holistic treatment, but I'm still no where near reliable enough to be able to work. You're very lucky to have managed to keep your job.
Stepper
WOW, Help help help,
Any advice you can you can give would be great.
I know I have intolerances to STUFF, but never had the opportunity to take things any further, my IBS is shocking as is my sleeping pattern.
I follow a diet now so I don't get IBS as long as I stick to it. Dairy is a huge trigger for me too. Potato also drains my energy, but I crave it. I'm ok with gluten but wheat and yeast are triggers. Caffiene, msg sugar and sweetners are triggers. Its hard to stay toxin free though.
I agree with your leaky gut theory.... I do think though that many have other issues too.
Much of my issues are now around sleep and maintaining energy. I take Q10 and magnesium which helps. (as well as some other suppliments)
I have acupuncture, bio-resonance and homeopathic drops. I've just started using a bio mat. Dr myhill says far infrared is having some success.
I believe the clinic I go to once a month is the only one in the uk that provides the combination of treatments I'm having. (Rosedale Clinic)
I haven't looked at kienesiology though... I'm not sure I can afford to do more than I'm doing.
My symptoms CAN be ok as long as I do absolutely nothing in the mornings and give myself some complete days off occasionally.
Doing too much brings on vision shimmers and migraines. I become breathless and brain fog sets in. Sleep is a major issue. Memory is bad and of course major pain with any relapase.
Its wonderful to hear how someone has managed to see themselves as recovered x Well done.
I just wish I could afford non-NHS treatments - I'd love to see Sara Myhill. But no one can guarantee a cure as far as I know and I don't want to accumulate a debt I can't pay off! I'll have to keep on doing the lottery I think
Julie xx
well done .but i wish i could get better so quick.i hate being like this...nice to talk to you.
I do not mean any offence at all. if amanda has recovered that is fantastic. i am sceptical. i spend a lot of time researching fm on legitimate medical journals across the globe and worry about these stories if you saw this as an ad on the web the likely response would be either yeah right or desperation would lead to buying into the product and eventually end up skint and no better off. had admin not needed to edit the thread i would perhaps believe it more. i would suggest that if this is true that perhaps there is an element of misdiagnosis in the first place. i honestly do not wish to cause offence but i urge you all to be very cautious.
I have to agree with you Sapphire, please be cautious of claims for miracle cures and recovery that read like advertisements. Whilst there is no cure for Fibro, it is possible to manage the symptoms. Please do not reveal personal info folks and be cautious about claims like the above. Be careful and keep safe.
Well come on, don't keep it to yourself. How did you do it? You could make yourself very rich if you come up with a solution to this terrible illness and from which we are all suffering. Show us the evidence please.
Yes you have caused up a stir on here and offended a lot of people. Please do not make these claims if you cannot provide us with the evidence at the same time. We only have your word to take for it. I must admit you have really annoyed me.
Can I ask which food types you have left out of your diet which seem to help as I have noticed I know drinking lots of water instead of the usual drinks makes a difference as water hydrates the body and therefore helps the muscle pain as it makes the body less acidic and more alkaline instead.
My main problem is fatigue and bad muscle weakness I get depleted far to quickly some days for instance I went swimming for about half an hour went home watched tv for 20 minutes then just had to go to bed and I slept for 3 hours .... in this life you must do what u can to help yourself im glad you have worked to help heal yourself and i'm sorry to hear people have been angered by your post ...I do believe the amount of fear put into people lives plays a part in illness to stress and fear I believe manifests illnesss in the body to also they way people claming benefits are under constant stress even why u pass the medical there is no real break as u just worring how long before the next one
I can see that you have understanding Doctors, that is truly refreshing. Having your knowledge and experience has helped you to manage your Fibro. Well done. From all the research that I have done, I can see there is NO Cure, but management is the key, All factors of life are involved. It would be good if we could all be like this, we are all individuals and what we think is impossible can be possible with a lot of self control and determination. Thanks again for your experience you may help a number of people.
Ok Amanda i'm intriged and am open to anything that could work, so please how are you going to help, assist, support us ???? I have lost a carer I worked very hard for due to Fibro so if there is a way for me to get that back i'm all ears, asap hugs and smiles xxx
ADMIN MESSAGE - Please be careful when obtaining information from someone who advertises their services. There are no miracle cures with Fibro, so please don't take these claims seriously. It is possible however to manage Fibro with suitable pain relief etc.
The information contained at the top of this thread is a personal experience, not evidence based. Please do not make personal contact with people you don't know or reveal personal information and contact info. Please keep safe folks.
This is the only post archived for this user. LibertyZ, can this be looked into? We are vulnerable people who are so desperate to be better. I am worried that people are being sucked in, understandably.
PEOPLE PLEASE NOTE THAT THE AUTHOR HAS NOT RESPONDED TO YOUR QUETIONS. I AM SERIOUSLY CONCERNED ABOUT THE AUTHENTICITY OF THIS POST AND THE CLAIM OF A CURE.
N.B. I would rather get in strife from moderators by voicing this concern should I cause offence than see a single legit member of this community taken in by a scam feeding on our seaech for a fibro-free life.
We are sadly stuck with these cards folks. we can play our hand to our own stregnths.... triggers and relievers will be different for each and everyone of us. what works for one may infact harm another. DON'T GET HUSTLED.
Ooo this is a real quandry isnt it????? It would be fantasic if this person has the key to curing fibro and m.s. resulting in a return to total health & well being and a chance to grasp life with both hands and live pain and exhaustion free.
So why are the alarm bells ringing loudly????? From reading the comments and post it seems this indiviual has no previous history of archived blogs, has refused to defend their position by offering any verified evidence other than antidotal, she has infringed the site rules on advertising and or solicitating for contacts, prompting admin to edit and censor the post.
I know that some people will be angry and dissapointed at what could be viewed as censorship but I agree with the poster that states that people with long-term physical and mental health conditions are vulnerable. Please dont think that vulnerable means stupid this is not meant as a personal insult!!! But it must be pointed out that the very nature of a dehabilitating health condition which robs us of a decent quality of life instills in us a craving for a return to normality & the person we once were.
It is this craving that leaves us open to claims of a 'cure' all of which usually come at an inflated price both in monetary terms and in terms of dissapointment and dispair.
Please tread carefully and do your homework on all unsubstansiated claims !! Remember however unpopular admins 'interference' or intercession (depending on your view) in this matter might be they are charged with ensuring that everyone on this site are kept safe and I for one am glad that they have responded swiftly and in a responsible & professional manner.
I've googled her - I can find no trace ............... speaks volumes doesn't it?
Julie xx
We have restricted AmandaRalph's account, so there is no need to worry. Always be very careful about claims of being cured with no profile details or no other quantified information and potentially false claims. Also if people say they will contact you, or you them, be very aware that your personal details are at risk.
Admins' sole aim is to keep the forum safe for everyone and if that means stepping in and taking action sometimes that is how it has to be. We don't take any action lightly I assure you. We are all vulnerable here because we have Fibro, some members are very very ill right now and are desperate for their miracle cure - if there were one, we would all have it. Being vulnerable also makes us prey, this is why Admin have to be vigilant at all times to protect everyone.
I don't think it's fair either, for someone to use a site for their own business pretending they have cured their illness that we are all suffering so much with, I'm glad the admin were on the ball xxx
It is not only detrimental to us regarding giving us false hope or fleecing us financially. Think longer term. If people go around advertising that there is a cure it is another stick for the bureaucrats (& the doubters) to beat us with. We will get told that if we want to be well we should follow this plan or pay for this course of treatment etc. When we don't, or can't, it will be 'proof', in their eyes, that we don't want to get well or are making it up etc.
It is horrible that people use others suffering to try to profit from & only my belief that karma will rebound on them keeps me going. However, saying that, I wouldn't wish this on my worst enemy. My children & their spouses have become so used to me falling asleep mid-sentence because I am so exhausted that they just carry on as normal. Even my grandkids take it as normal behaviour from me lol.
Keep strong everyone - we all want there to be a miracle cure. My rheumatologist asked me what I wanted the other day - if there was one outcome I could have what would it be. I think he thought that I would want to be free of the pain. He was quite shocked when I informed him that I could cope with the pain, it is a choice of the fatigue or the brain fog that I really want rid of. One affects my life to an unacceptable degree & the other annoys & embarasses me. Both stop me from enjoying being a grandparent because I do not trust myself to be alone with my grandchildren. Fibro is stealing this time from me. I'm a youngish grandmother (47) & aways thought I'd get to do the things with my grandchildren that work etc stopped me, most of the time, from doing with my children. It breaks my heart to hear one of my grandsons explaining to his toddler sister that nana isn't well enough to play with her today or that I do love her but I didn't get her name right because I've got a frog in my brain (& yes he did say frog bless him lol). :' (
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I have quit all meds now for almost 40 days!
Morning all I have a tale from yesterday of caution to you all
Hello everyone sorry I have not been around
Hello All
Hello fellow sufferers, I can say that as I now know I am not mad after 35 yrs of not knowing I have FM but experiencing all the symptoms.
