After being totally disabled with fibromyalgia, I have been out of pain and off meds for 13 years. I didn't happen over night, but it did happen.
I have been studying and working the past 13 years to help others in their recoveries. I want people to get well.
When I regained my health, I started putting my hand back in to help others. I work as a nutritional consultant in Georgia trying to pull people out of the hole.
Don’t accept the word "incurable." Keep fighting for restored health. If I can get well, why can't others. I believe something better is out there with your name on it.
I want to encourage each of you with fibromyalgia. I understand what you are going through. I have been there.
Here is what I have done to get well.
1. Identify and correct hormonal imbalances using plant-based replacement.
2. Initially corrected brain chemical imbalances, particularly improving a naturally occurring brain chemical called dopamine.
3. Cleaned up my diet and eliminated milk, a food that was causing trouble for me.
4. Cleaned up some toxins.
Rheumatologists and patients typically don't understand the symptoms of hormonal imbalance. I want to help change that. The technology is in the here and now to identify and correct hormonal imbalance.
Do a little research to see if you have symptoms of hormonal imbalance. If you have many of these symptoms, study to find out how to identify and correct imbalances.
Here is a hug to each of you. I want you to feel well again.
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I agree that people can help to overcome this disease, maybe not all but quite a lot of people, but I think everyone has to find their own way and it might not be nutrition, it might be something else for another person. I think it requires (a) complete acceptance that you have the disease (b) not fighting the disease as that causes too much stress which can then have the opposite effect (c) working with the disease to find out how you can live together to get a better quality of life.
In your case, it is nutrition and hormones. I don't think that is so in everyone's solution. And I don't think that telling someone what his/her solution is helps either; somehow it is imperative that people search for their own solution that is tailor made for them, by learning to understand their bodies and listening to what their body and the disease is saying to them. It's growing an awareness of your body that is somehow part of the solution.
Have you brought your findings to the attention of any medical institution? I do hope so, and would be very pleased to see any statistics/double-blind trials/ citations/learned articles, etc. about your research and results.
Sometimes people don't have the time or inclination or finances to wait for double blind results. Many people read and do their own research and try to find their own solution. We are all different. What works for one may not work for another. That does not mean that the outcome is invalid.
I also think part of it is down to wanting to help yourself, as a fibro sufferer myself who has turned my life around through positive thinking, a healthy diet (most of the time) and exercise. This didn't happen over night, I had got trapped from the grief of losing my old self, expecting there to be a magic tablet or for it just not to be true and ashamedly not wanting or feeling I couldn't put the work in to reduce my symptoms.
I think grief plays a major part in chronic pain conditions and it traps us by encouraging depression and a false state of facts that this is how it is, which is not helped by the lack of knowledge by most medical professionals, my colleagues included. This is something you have to realise for yourself and get yourself out of as no counselling is offered as I don't think it's an accepted issue.
Also we all suffer from different symptoms, we are all very different people, there are lots of fibro sufferers who went through the same process as me and did better or worse after treatment. Nothing 100% cures someone because we are all individual and what works for one may not work for others.
What I am concerned with is there are lots of gimmicks and books for people to read bug hardly any either free or at cost price, I will never understand why when people really suffer with something does it cost so much to get better. It frustrates me but maybe I'm being a little utopian when it comes to healthcare and in lala land as even the NHS can't rid itself of the postcode lottery.
Keep working on improving your health through personal study. Here is a good website on one of my favorite ways to help FMS, and that is magnesium supplementation. westonaprice.org. Search for information on magnesium. Also, learn more about hormonal imbalance. zrtlab.com or diagnostechs.com
Be your own advocate for health.
patriciacnc.
Well said mofy it wouldbe good if this was made publicin the hezlth world some timez fibrolooks as a working solution.
Sometimes fibro looks kike other illnesses and sometimes other illnesses look like fibro .......just saying
My fibro actually started while I was fit from regular exercise, healthy from a nutritionally balanced diet (gluten free too) and thin and trim. I'm not so sure that my diet at the time wasn't part of the problem of the onset. I have an idea that the super healthy me was what brought it all on. Yes, I was also a BIT stressed at the time, but nothing like a loss, accident, or other major stressor which brought it on.
Each of our fibro stories are different and if there were a "blanket treatment" we would all be sharing that on these posts.
We appreciate any helpful suggestions, and your tips may help some, but I fear may be harmful to others.
As a recovered patient who suffered with intense chronic pain and low energy, I understand what it feels like to fear new therapies and ideas. But when I put my back to that thought, I was ready to roll up my sleeves and look for answers. In the very early days, I caused some fibromyalgia flares for myself, but I could accept the low quality life I had without a fight. I spent more time on my knees than in the books. Eventually, the answers came. I know all of us with FMS are unique; but if I can get well, why can't others? The reason I am spending my time answering these letters is, I believe there are ways to get better or well. Keep fighting.
I find such claims terribly arrogant and upsetting and I am sure I am not alone. In my experience of this condition. ........and it is a condition. ...not a disease as people will keep saying......every instance is different and every individual's symptoms, abilities and tolerances are different. I personally have no comprehension of people being unable to work but my job has adapted to allow me to work from home, even so there are days I truly despair. Every other person has their own theory on miracle cures for me yet none of them has a clue how I feel.......and thats because no one CAN know how I feel because this condition is so different or is experienced so differently by every individual. I am happy that you found something that worked for you but please dont tell me you have a miracle cure for me......you have a cure FOR YOU..... for me..... well I would need the causes of this to be reversed.....don't suppose you do raising from the dead too??
Jo61 I so agree with what you said in fact I agree with everything that has been said, except for the person who has a miracle cure, that cost a fortune , been there done that bought the very expensive t shirt. I have had this damn fibro for 15 yrs and tried all kinds of things, I have given up on the miracle cure, there isn't one . So good luck everyone lets hope we all get well
Maggimay16 I had to reply to you. Because I feel I am the biggest fool. You see I have had Fibro for about 20 years, but only got it diagnosed 7 years ago. I have spent thousands of pounds on credit card believing that the products and therapy they sell will cure me or at least ease my pain, some have eased my pain for a short time, then it comes back, yet I still do it pay more for relief, sometimes I think I know ti won't work, but unfortunately at the back of my mind there is always the thought that this might be the one. I am finding hard to stop buying these things. but now I am targeted with all sorts. I know a few things that ease my pain, but they are so expensive and Iv'e already maxed my credit card out. Certain massages helped me but I needed them close to home in order to feel the full benefits, Sunbeds small and often again need to be close to home,as I also suffer from CFS, bowel problems and digestive problems. The one thing that did really help was a local chiropractor, I felt in total agony as he was alighning my spine, but it felt absolutely great afterwards. The problem again, being the cost it was £45 for the first consultation and treatment, £45 for the xrays and next treatment, there after £32 per treatment I could only afford to go for three weeks, 3 treatments per week. He told me I would at least have to have 12 weeks of 3 treatments per week, well if you count it up that's aheafty sum. I could pay £800 pounds and I could go anytime for life, but I did'nt have that kind of money, nor could I justify paying it as I am heavily in debt. I feel so angry that I found something that I felt was relieving my pain ,but it was so expensive I could not continue it. And now I am just as bad with pain and extremely worried as I have to get an Atos exam in May and like everyone else I am so sick and tired of appeals and tribunals trying to prove to them that you really are ill, they make you feel like a criminal, a liar a cheat as they twist your words round and leave your brain aching. I am so sorry that I have ranted on so long and I don't mean to be so deppressing, quite simply I am just SCARED of everything at the moment. I've stopped watching the news or buying news papers because that's all that's in them, that they will make us work for our benefits or cut or stop them. I can't even do my housework let alone anything else. Am I the only fool to have spent so much money on private alternatives to get relief.
Agree with you too, Jo61. The comment that 'I've managed this and it worked for me' implies an element of blame and others not trying hard enough. People with fibro have enough to put up with without people laying on the guilt.
I also find your e-mail exceptionally arrogant and rather judgemental, which none of us need. How do you know it is a 'condition' and not a 'disease'? What is the difference? There is so much not known yet about Fibro that none of us should claim to have the answers.
I also cannot understand why you 'have no comprehension of people being unable to work........' just because you still can. You know this condition manifests and varies greatly; why make this statement which feels judgemental, especially in the current climate, and is not helpful.
No offence or judgement is or was intended. I am hugely frustrated by not being recognised for the constant pain - and therefore having to continue working with no way out...........
I was totally disabled with fibromyalgia. I left teaching because I could no longer stand the pain, couldn't think or sleep well enough to function in the classroom. I do understand what you are talking about.
When I regained my health, I wanted to go back to work and have been working for almost 14 years trying to help others get well.
Sounds like you are pretty discouraged. If I had read her post 2 years ago, I'd have said the same thing. I have recovered as well. I have gotten off Cymvalta, Fletil, Tridural.. My daughter recovered at the age of four. There is hope! We did it on the Guaifenesin protocol. My cousin feels mostly recovered on natural Thyroid and adrenal treatment, AFTER treating the gut. I have heard many have gotten well on organic fruits and vegetables. The point being.. When we get well, we feel guilty if we don't share with others who are still suffering. They have a right to know there are ways to get well. It's sad how many people think (and believe from their doctors) that they won't. It doesn't hurt to try these safe healthy methods.
I am sharing a truthful account of my recovery. When I got well, I had a choice to make. Should I keep quiet because I got well doing things that did not come through conventional thinking, or should I try to step up to help others? My story is true. I care that others feel well.
Thanks for this, it's always good to read to keep you motivated into trying the next thing. I totally agree about the hormonal inbalance otherwise why was I not ill at all before I had a child and then became ill after I had a child, must be something to do with hormones!,
I agree with Jo61. Yous seem to imply that we could all get better if we made an effort. I believe all fibro sufferes want to be well, but like so many others I have fallen into the trap of trying various things at high expense and with no better outcome. I haven't given up on myself, but I needed to accept what I have and look to relieve my symptoms, rather than constantly grasping at straws.
I am sure this has worked for you, but am always a little sceptical when someone goes on a crusade of this kind. I don't mean to be unkind, but I am sure you now make a living from trying to help others - and we don't all have the resources to throw at the intried and untested cures.
Please don't raise false hope in people who are in some cases already at the end of their tether.
As a former FMS sufferer, and after trying a lot of things that did not work; I had to decide if I was going to give in to the FMS or fight for health. I truly have recovered, and have been off medications for over 13 years. You and others may not believe it, but it is true. I then had to decide if I should keep quiet or share.
I work as a nutritional consultant trying to help others fight their way back to health. I don't accept Internet clients, but I do spend time trying to encourage others who are sick. I am sorry if I have offended you.
are you 100% sure it was fibromyalgia you had and not something else similar, and if you do now try to help people do you do it without making money off people on the back of it,sorry to be cynical but a lot of people who have claimed they have been cured, all want to help others with the condition but I notice that they don't do it for free , if I found a "cure" as it were then I would help people free of charge
I know this is why most people don't believe I am well. I had FM all right. Even my daughter was diagnosed at 4 years old and she got well. My mother has it, her brother had it, and I have many cousins with it (some cousins won't admit it's Fibro, but I know). It took me a year to recover, and it took my daughter a month because she had so little of it in her body. But her behaviour and symptoms vanished in weeks. She's been free of symptoms from FM for over a year. I'm getting better and better month by month. I used to have trouble standing, and am now working out hard 3X a week with a personal trainer. I'm off my FM pharmaceuticals. I don't sell anything. I just want others to realize they can get well too. I feel guilty getting my life back knowing how the rest if you feel. I have been there! By the way, I saw Dr St. Amand and read his book. You can do the protocol independently. I have all the instructions and I don't charge a dime. My husband makes very decent money, so I've decided this is what I'm doing with my life. Helping others for free.
I have to say I'm on the fence with this one, I recently came off all my meds other than co-codamol, I take them when I really need them. I've changed my diet, stopped smoking and take regular exercise I walk daily 15 to 20 mins, twice a day most days now, I started slow and built up... And I have to say, over the past 4 to 5 weeks I have noticed a massive difference so maybe with positive thinking and many changes and a positive attitude you can do it or I'm just in remission, time will tell. But I'm all for trying, after all we've nothing to loose only to gain....
Agreed...took the words right out of my mouth.....if this person is " cured " they must know how we suffer.. Share.....for compassions sake..not financial...
I agree, if I found a "cure" I would give it away for free and I struggle to understand someone who has suffered with this or any chronic condition who would charge for giving everyone else with it a cure. I'm also struggling to believe there is one cure for us all, our symptoms are all so different although I have a good idea what another fibro sufferer is/has been through none of us knows exactly. All I can say is something helped me, it certainly didn't cure me though and there are others who have done different things who have got it to a similar point and come of meds completely. I've never heard a single one of these people charging for their advice to even help another person, because for us (and I remember exactly the dispare, pain and fatigue I felt at my worst) even help could have a hefty price tag and when absolutely desperate and out of your mind with the whole experience you would pay anything to have help, some do and are in debt because of it.
I think I may have lost the thread of what I was saying there, sorry.
My fibromyalgia was confirmed by two doctors locally, at Mayo Clinic, and from a team of FMS researchers in Birmingham, AL. They confirmed it with a SPECT scan done on blood flow to the brain. You might google this is don't know what it is. I believe I did have FMS. But my FMS pain has been gone for over 13 years.
What I am using now to keep symptoms at bay, I don't sell. I use bio-identical estradiol and progesterone and magnesium. (There is a lot to know about balancing hormones, check zrtlab.com or diagnostechs.com (i am not connected to these labs.) I don't spend much to maintain my health. I do eat healthy, or for the most part.
Magnesium is a huge deficiency for most with FMS. See westonaprice.org. Type in magnesium.
Fibro/CFS is a very personal thing and I think each of us has to find our own solution. What works for one person doesn't necessarily work for another and eventually we all become mini experts in this field. Adding to our 'tool kit' as we go along by picking up hints and tips is how we here in the UK have to deal with it. Thank you for sharing your success with us patricia.
i totally agree with you were all different and have different branches from the illness like cfs depression ms me or lupus or arthis list is endless ............ x
There are so many theories out there and what works for one, is wrong for another....however, I do believe nutrition and hormonal imbalances play a huge part in every condition. My Grandson who has CFS started seeing a Kiniesiologist about 10 weeks ago. She has altered his diet dramatically by testing him to see what worked for his body and what worked against. He can no longer eat chicken for example, garlic, lemon. His hormonal system was totally out of sync and this is being rectified too. Then there is the emotional side that's also being dealt with. Within this time he has gone from just reading in his room, hiding from the world, to meeting up with a friend and going out, having driving lessons, planning to do his 'A' levels in college come September. I would put him into the convalescence stage now. It's been a vast improvement. He is getting his life back. My friends who have seen him maybe three times in total have all remarked on how much better he is. So give Kiniesiology a go. It's targeted to your own body. Yes it costs, but find a student and you only pay a donation., plus whatever the supplements cost. In his case about £100. Worth every penny to get him his life and future back. Even his GP was amazed at the difference........but when told what we were doing his comment was 'Will it do any good? No. Will it do any harm? No' but the proof was right before his eyes. Told him to open his mind re complementary practises.
I have gone from being a super fit, extremely healthy ballet dancer to what I am now. I had a very careful diet, etc. I am delighted you have had a cure for yourself though.
If there were a quick, simple and universal solution to our problems I have no doubt that it would have been identified by now, so yes I too find it a little arrogant that you seem to be claiming to have all the answers. Like many of us I simply don't have the money to go in for extensive nutritional or allergy testing .... so please be sensitive to that fact before you broadcast blanket solutions.
On the other hand I am genuinely delighted to hear that somebody has got well and wish you all the best. As far as I can see there is some genuine evidence that a very gentle programme of graduated exercise helps a number of people, so via a specialist physio who works with our pain clinic that's my next step. I do watch my diet and have also identified sugars as a problem for me.
Likewise I have gone from being super slim and healthy to now so ill I can barely move and working hard to loose about 6 stone no less !!! I'm going to sit and write a list of things it might be hormone inbalance etc currently waiting some blood tests that might show vit D deficiency if that is present - had mine since major op in 1990 and MRSA gradually got worse with the years and 4 births the last of which left me with strange blood antibody with a car crash thrown inbetween so who knows what actually is the cause - good nutritian helps but I follow slimmers world which is uber healthy but no difference - thinking of going down the route of allergy test as I have horrific IBS which doesn't settle till lunchtime if at all ........I note all these people with so called “cures” work privately with a cost somehow this gets this people at their all time low when they will try anything .............
After serving as a nutritional consultant for over 13 years, I see great power The power in supplements.I see magnesium is a strong deficiency is most FMS patients. Getting the dosage right and in proper balance to calcium is critical to success.
Best to you and your health.
This is a support forum a shoulder to cry on forum...... It is not a blatant advert forum..... I typed in your link at the bottom and it took me straight to your website to ... Oh surprise surprise .... Buy my book ... Isn't it selling well enough that you have to pop into sites like this and advertise it ..... Believe me if everything you claim was true this site wouldn't be here cos no one would have fibro and I would be out doing a hundred other things than be sitting at home in pain
VG x
in reply to
Sorry this has offended you. I truly have recovered and am trying to help.
I find it hard to take in she is 13 years free of FM ( lucky you)
Are you from the USA ?
I dont believe here in the UK it was truly recognized as fibromyalgia 13 years ago.
There were only a few chronic pain specialist and rheumatologists in the early 2000's here in the uk who had even heard of it !!!! it was discussed at chronic pain seminars @2004 - as my specialist went to one and came back saying "hey i dont think you have allodynia I've just been to a seminar and heard about a syndrome and I think thats what you have" etc
I strongly agree with the above statements - the umbrella of FM symptoms is so huge.
We all tick some/all boxes with varying degrees of pain and discomfort.
Lots of us have tried every new gimmick or diet - To find relief (or a cure) over the years
I believe we all have good days and bad - some can be bad weeks and bad months.
We are all individuals but are labelled under the same name
Pain is a personal perception. NO ONE can live or feel an individuals pain - just empathize
Thoroughly agree with you. I am not cynical about your comments at all. This is what we were taught in Homeopathic College and the route alternative medical doctors take. I do not rely on my GP as their knowledge is limited. I balance my health using the process you mentioned. I have an open mind I want improved health and more energy. The additives in wheat make it more addictive than crack. Read Wheat Belly (written by an eminent Heart Specialist. You can order it through the library. Its pointless taking painkillers and masking my symptoms I work at relieving the problem another way. I also follow Dr John Lee's (gynae specialist's) teaching and buy his natural HRT products and that helps. Also we need to look at the narrowing of the spine and try to alleviate that where patients are affected and have symptoms because of this. There is a lot to take on board. No disrespect to anyone. This works for me.
We are trying to do something about it now ..... Believe me if there was a cure many of us on here wouldn't be there are a few of us who have had fibro 20 plus years and if there was a cure we would have found it .....I had a lovely fibro. GP when I was diagnosed 23 years ago and he helped me manage it but certainly it was not a cure
i just knew the poster wouldnt reply to any of our posts or questions! as is the normal way of a forum! seems out to make a fast buck out of our suffering!
I too am glad some of you have found relief,I don't agree with the blatant advertising on a support forum though. I have spent a lot of money trying to get better I feel like I've been conned in all honesty as I got a lot lot worse. I've decided I'm not going to keep stressing myself out and try and find a cure,I eat healthily,I exercise when I feel up to it,I am a single of mum of two,I do what I can to make the best of things. I also have a thyroid problem and so many people are running around spending vast amounts of money trying to cure themselves. It's just too much stress for me so I'm accepting things as they are.
Can I ask, the lucky people who have manged to get well, how long you had fibro ? And did you have other illnesses and did these get better at all ? Thanks
I was diagnosed a couple of years ago, but had been going to GP for over 10 years with symptoms but ignored and put down to depression, I had depression as a teenager I knew the difference but of course patient knows nothing. About 3 years ago I finally got diagnosed with endometriosis, I've also had IBS since I was 13 I am now 32. Although I learnt how to control the fibro during pain management group I was also undergoing forced menopause treatment, this I later discovered was probably my biggest help as my periods were incredibly painful and at that point could put me out of action for a couple of weeks making fibro flare ups more possible and more frequent. When I finally came of treatment for endo I triggered quite a bad flare up and periods knocked me out of action for 3 weeks with a pretty crap 4th week, this continued to happen until I went back on menopause treatment. I have now been forced by the combination of fibromyalgia and endometriosis (symptom of both is painful period) to have a hysterectomy, I can now control my flare ups with what I learnt in pain management and feel much more confident about having a flare up reduced and hopefully eliminated life. I'm not sure if you can ever cure fibro maybe just put it in periods of remission, but I was desperate and I was on loads of analgesia and off sick loads, I felt I had no choice to accept that the endo affects the fibro because I knew eventually I would cut the thing out myself it was that bad. I would also like to point out I have no kids, never will now but although I learnt how to stop my fibro flare ups, the two diseases together I could never control.
I blame the fibro for my essays also as I lose my thread and go all over the place lol.
I had subtle symptoms as a child but of course didn't realize anything was wrong with me, until I look back now. When I was on the birth control pill as a teen, I was ill for 2 years not knowing what it was. I know now. When I got pregnant with my first at age 31 my symptoms began again (I past it off as hormonal), although it hit me super hard when my second was 6 months old (the pain began). This would be at age 34 (2008). I got worse and worse as time went by. At my worst, I couldn't stand for more than a few seconds and the pain would be so bad my kids coulnd't touch me. I spent many days in bed with someone else mothering my kids. Having a shower would wipe me out for the entire day. Needless to say I wasn't very clean.
I began the Guaifenesin protocol in 11/11. Within 2 months my fibrofog was gone... all of my symptoms began to disappear in reverse order, but it certainly didn't happen over night. I now know why many people have tried this protocol and it failed to work. There are many things (from plants) that have salicylates. When Guaifenesin is used as a uricosuric medication, you must not get salicylates on your skin, just as one example. Salicylates enter the body and travel to the kidneys where they block the receptor site for Guaifenesin. Salicylates are hiding in things like mint toothpaste, gum, aloe lotion, lavender shampoo, castor oil in your deodorant. If you are careful enough and FULLY informed, this protocol works for most of us. I now because I am helping many people through my facebook page (for free, by the way). I don't charge a dime. If I did, I would lose credibility. I know why this treatment is not prescribed by doctors. It doesn't have a successful double-blind study to back it up because in the study in the 90's, patients were using salicylates!
Even today, many patients try the protocol and fail to recover because they are not completely aware of what Guaifenesin to purchase (it must be dye-free, long acting Guaifenesin with no additional medications added like decongestants or dextromethorphan, and must have NO fast-actin layer when you begin). There are only 2 places that make Guaifenesin suitable for our purposes. I order mine from Marina Del Rey Pharmacy. Others use Mucinex, but it has a fast-acting layer which can cause problems in the beginning determining your clearing dosage. Guaifenesin has been marketed as a mucus expectorant since its FDA approval in 1952. However, it is also a very gentle uricosuric agent which has no side effects or drug interactions (although it will not work if your other drugs have salicylates). It helps the kidneys eliminate "something" that is causing our symptoms. I KNOW this, otherwise why would it literally reverse our condition and all of our symptoms in those who are successful??
For the record, I was a patient of Dr. St. Amand and therefore had his support and the guidance of Claudia Marek. I KNOW I would have failed had I not learned from them how to do this right. I even blocked several times, and almost became one of those people that said "It doesn't work!" But I kept asking Claudia what I was doing wrong and asking about ingredients in my products and I eventually learned how to scan products within seconds for salicylates.
Kids clear very quickly because they have less to clear. My daughter, at the age of four, went from a whiny irritable cry-baby who was glued to the couch and TV - to a happy, smiling energetic little Miss Sunshine in 2 weeks, who wanted to play constantly, and was completely well after 6 weeks. I am now trying to help raise awareness of "Fibromyalgia in Kids" on Facebook. You can email me there if you'd like some FREE guidance.
Good luck to you all in whatever you choose to recover. My cousin recovered on Natural thyroid treatment after treating the gut.
I do believe it's something, possibly in our diet (Monsanto doesn't help!), that is causing something to build-up in our system. I can see why a healthy organic diet can be the answer for many.
Hugs to you all,
Sabrina
FibroCanada is at gmail if you'd like some help. I don't sell a thing!
Teddys mum, I agree with you , I too have tried for 15 yrs to get well, I am a single mum of two and also have an under a rive thyroid, I too try as much as I'm able , I spent lots of money on so called cures that did not work but left me out of pocket, you take care and good luck
I don't like what this woman has done, suggesting that it's all "in your own hands"! I'm on a very low income, I just get my ESA (support group), so I have no money at all to buy wonder cures, self-help books, or whatever! Just recently I was approached by somebody who was swearing blind that aloe vera is a cure for fibro, she was very friendly & we chatted for quite a while, then she directed me to her website. When I told her that I have no spare money, I've not heard from her since! It's immoral to suggest I could be "cured" if only I had the money! I'll stick with my pain clinic, thank you very much, they provide an excellent service & it doesn't cost me a penny!
Oh yes I have had similar.......aparently aloe vera or some other green mush is what we have all been waiting for....sprinkled of course with a little faiy dust and served on a bed of fifty pound notes............I will one day invent some amazing sounding illness and see how they managed to cure it!!!! They all go to the same school of "rip em off and fleece em"
OH I WISH!! I find your self-serving/self promotion arrogant and insensitive. I do not believe that you have found a magic cure, or that you have had FM because you would not be so insulting to people who actually do! Dont you think we have tried everything possible, including nutrition and hormonal issues? Many of us have these problems as part of the condition, and whilst there can be periods of remission, it's not permanent. Something always sets things off again.
I am so sorry I have offended you. I truly have recovered from fibromyalgia. I can tell from some of these responses that it would be easier not to try to help others.
Think about it. If you got well, would you keep quiet? Who would you tell? How would you tell them? I struggle to tell people because I know it is hard to believe, but true.
Apology accepted. I'm sure you had good intentions. Every one of us is on a constant search for answers. We have a wide variety of life changing problems and I'm pretty sure there aren't 2 of us suffering exactly the same. What works for one, wont work for another. My endocrine system is complete out of whack. Balancing all of it, because it takes nothing for one part to slip and everything else follows like a domino effect. Just not stable enough. Nothing is the same 2 days running. A site like this offers so much 'cause it provides a safe environment to vent and know they TOTALLY get it! May or may not have the same symptoms, but experience the same enforced frustrating lifestyle difficulties.!
So you can understand that the biggest problem I have with this, is that many people on here have experienced very hurtful comments from family, friends, and even medicals.
If you truly believe you have found this magic cure perhaps you should approach people in a position to prove/disprove in a scientific program, or find one already in progress, see what they have to say!
If you can do this, and the right answers are proven, then I'm sure many people will be wanting to shake your hand and apologise for doubting you!!!
I agree with all the comments on this forum today.We all know there is "no cure" for this Fibro and yes why does everyone who does have "a cure" charge such huge sums of money.We do not have the resources to finance every so called "cure".We know we have to help ourselves, and boy oh boy do we.We have to stay positive otherwise we get stressed and then we relapse.We have to live with ourselves and families through this terrible nightmare.If you break a limb you have pain, get it fixed and move on.With Fibro there is always something hurting or fibrofog.Its made worse because most of us physically look ok but its what is happening inside mentally and physically and how we have to cope with our changed lives.Some of also cannot get benefits; apart from the stress of trying to get through the system.We would all physically walk to the end of this earth if such a cure was found.We are open-minded BUT we are not stupid.This maybe some sort of help but certainly not a cure.We are fighters not sherkers.We have lives to live and children and families to care for.I strongly agree with Mofy Very Grumpy and tulips123.
Could I propose that you don't waste your time and energy replying to this, VG has taken the appropriate action and what one person says is not applicable to all, especially as it was just advertising for her own benefit. Peace and calm be with everyone.
I think everyone can find a few things in their life to make things easier, ie diet and lifestyle, and I am sure most have tried, but there are some of us who are exhausted through the effort of trying, and have tried sooo many things, to no avail, a lot which cost the earth.
Patriciacnc, was it really fibromyalgia that you had, or was it just a hormonal imbalance that responded well to your hard work?.
I think looking at hormones and good nutrition (I read some of Patrick Holford's books)would help a lot of people, but in the UK it can expensive to get advise, and GPs aren't that receptive (from my experience) to have it done as routine on the NHS.
It will be great if the medical profession could agree on that one something that would help everyone, but until then I think it's a task of gently trying things out one by one, trial and error, rather than using all our energy up looking for that "one thing" and making that the be all and end all, and getting dispondant and poor.
Diet can be a cheap alternative, and everyone - ill or not - would benefit from it, but is it the total cure? There are a lot of us who have tried it and would say not. It helps and underneath gives a good healthy foundation to make the other symptoms a bit more bearable.
GPs don't help as they are in the most caring but ignorant, and seem to think that if they attribute all our ailments to Fibro, it will make things easier for us (ie "go away and stop worrying about it"), and save their practice a lot of money (in the UK, at least). A lot of them still think it's psychological or rheumatologic at the moment still....
Sorry about my rant, but I can see why Patriciacnc wants to help, but it's not that simple.
If I could get better by doing things suggested by others I would. We would all like to feel better and be without pain and be able to do normal every day things, dont assume none of us have tried to get better, I try all the time to improve but as yet have not found the magic item that will make me feel better.
Some on here know that for the last 2 years I have been doing phyiso to walk again and have now managed 209 meters with crutches but this took me 40 mins , with the right help this has managed me to do this as well as having the determination but it does not stop my head aches the fatigue nor the pain I suffer every second of every day, I have seen videos of people doing ddp yoga and in a matter of months improve, but here in uk there are dr who believe in fibro and those who dismiss it , you might of had a mild case of fibro I don't know as every one suffers differently from it as one person put it "what works for one may not work for another".
But I always see that cures or help are not free .
I agree, its just not that simple to tell folks what they should do to get well. Many people including myself have good spells and spend money on supplements and massage, change our diet etc,etc but there is no one fits all cure and its distressing for people to be made to feel if only they could afford this or that it might make them well. You just have to be kind to yourself and listen to your body. To be honest I think if we British didn't have to put up with this rubbish weather and got a 6 month spring/summer period that in itself would make us all feel a lot better! Being stuck indoors when you could be outside more and on these light nights is a pain in itself...............bring me sunshine!!
I think if this was the case we would all be 'cured' !! Lucky old patriciacnc eh?!? I think sometimes people think we choose to have fibro!! Nothing is further from the truth. This is something we have been struck with, for whatever reason, and I feel support is what we need, not patronising!! XXXX
Have you really worked to have your hormones assessed? Replacement is tricky when one has low levels? Magnesium is often low in FMS, and replacement can help. Best to you and your health.
Just a short post picking up on a few points .. I have had fibro 24 yrs it was recognised in the uk then . Unbalanced hormones following birth my body was 21 when I first felt ill . Working because you have no choice .. I had no choice but to stop work following a year of sick spending most of that time in bed . Now after saying all that I agree that fibro. Present differently to all people. Due to genes personality etc ect. I have worked really hard at getting to ..my best .... And I believe thats all we can do try try and try again until we find .. Our best
I hope everyone of us can achieve that and have a good life .
Yes and I would love to work but I can no longer, and therefore have no choice. Having 'lived' with this illness for probably 30 years (from the age of 18), and for most of that time continuing to live a fulfilling life (despite the chronic pain and other symptoms), for the past 14 years I have been unable to 'work'. I resent it when someone suggests that a choice exists within this. Particularly when we are being bombarded by an ignorant Government accusing us of being scroungers and work-shy, whilst many politicians abuse their expenses and so on (a sackable offence when I was working!).
I agree that there are many charlatans who prey on us when we are desperate, take our money and worst of all abuse our hope. But until the medical profession take this illness as seriously as other chronic illnesses and do the research, we will continue to be vunerable.
I believe Fibro does fit in to the definition of 'disease', maybe the 'pathology' just isn't being given enough priority. We are also told that it is not progressive, and yet many of us are experiencing a worsening of our illness as the years go by.
Each day is a battle to stay positive, but to let the Fibro consume me, is pointless.
Whoever told you that is misinformed. Dr. St. Amand knows this leads to osteoarthritis. I know it's progressive because everytime there was a stress on my body (infection) my FM symptoms would proliferate. For me it was the Guaifenesin protocol that reversed my FM. It took severAl months, but it worked. I work out hard 3 times a week with a personal trainer. Last year I had days where I couldn't stand for 10 seconds. I'm off all my drugs. I'm well!!
I think Fibro is like MS - they have too much in common. We know that MS has relapse-remit, secondary progressive and primary progressive forms. My theory is that it's the same for Fibro.
I agree with you too, Jodie on the not being able to work issue. When you can't work it's because you have n choice and nobody should make anyone else feel guilty.
I have seen both ends of the spectrum with FM, which is a very broad one from mild to extreme.
When I was first diagnosed I was in such a state I was in a wheelchair but by learning to adjust to my condition I finally managed to get out of the chair over a 3 year period. I started walking everyday and I seemed to be reasonably well again. I started volunteering and doing a lot more things I used to do all with in reason knowing I still tired easily and the pain was always in the background like a droning noise threatening.
I realized even though the pain was still there I was doing a lot better and thought I was better BUT and this is an extremely big BUT after nearly 7 years of seemingly reasonable ability a MAJOR flare kicked in and set me back a very long way. For the last 2 years I've been trying to regain some of the lost ground.
Like most with this condition I've tried everything, from the exclusion diets, high protein diets to hormone therapy and vitamins. You name it I've tried it over the last 13 years.
Comment like this don't help anyone, it makes it sound like we all enjoy being poorly. Well I don't and if I could find a way to remove the pain, fatigue, sleepless nights etc I would.
I also wonder if maybe you were given the wrong diagnosis in the first instance.
All we can do is find out path that helps us each individually to make the best life possible while coping with this horrible disability.
Technically, Fibromyalgia is a symptom. How can they misdiagnose something that they don't even know anything about? They don't know what causes or cures this. Fibromyalgia means abnormal pain in the fibrous tissues.
We may all have different causes to our symptoms. It doesn't mean it's not a disease. I don't know many people that have been sucker than I was. I'm calling it a disease! Is it a condition too? Sure! Call it what you want.
But never give up hope!!! If you do, you will turn down people that are trying to tell you they got well. Why listen to the nay-Sayers ? Listen to those if us who are recovering!!!
Yes, Patricia, I really enjoy being poorly and downing 20 pills every day just to keep moving without screaming. I mean no disrespect but everyone brings a variety of symptoms to the table. One size does not fit all. Many of us have tried many ways to lessen the pain. I certainly have in the 16yrs of having this thing.
..In the Bible it says that Jesus placed his hands on the disabled man and made him walk again ,it did not say anything about buying his book at x amount of $$$$!! or ££££ then you would be healed !!! if it seems to be too good to be true then it usually is, I worry about people who are new to the forum and have just been diagnosed with fibro and will try anything ,I have tried all sorts of weird and not weird so called cures ,there is so much out there claiming to cure you and I believed all this hype in the beginning 13 years ago ,there are a lot of unscrupulous people out there so beware!! if I found a cure for fibro and indeed felt I wanted to share it with the world I would broadcast it or write a book for FREE!!!! I would get enough gratification knowing that when I died my legacy would be that I was able to free other from this awful illness.. that would be enough for me .......
I do plan to make my book available for free later this summer. Then because of some publishing changes. The reason is I really care that people get well. I spent 4 years writing it to help others. I also serve as a nutritional consultant to help others.
Let me ask you with the greatest kindness; if you got well, what would you do? If you told people and they didn't believe you, would you quit?
God that was a lot to take in lol but i do agree ladys ive had fibro for 3 years now and i wouldnt wish it on my worst enemy , if anyone who was suffering like we are we would share our findings with each other . i wish i could heal us all from this horared pain sorry about the spelling not that good with it xxxxxxxxxxxxxxxxxxxxxxxxxx
I've tried all the diets, pills, exercises and lifestyle changes - I'm still suffering
Do you honestly think , I like being "on the scrap heap" at 54 ?
I'm a mum and a grandma I would love to be able to do more with my family... Shove your comment where the sun doesn't shine ...... We can't all "get better" !!!!!!!!!!
This is true we cannot all get better but unfortunately there are people out there who do not want to get better or say they have fibro to stay on the social so they can watch day time tv and not have to work (shameful) and that is the main cause of the government always changing the goal posts , they do not see fms as a disablitly because they do not recognise it as a diease only a syndrome .... shame on the people who use this illness to there own ends
Sat here and read all the nice polite and politically correct answers, your answer is perfect for me, I feel like I am on the scrap heap at 56, I take a shopping trip with my Mother, I drop something and she picks it up, she is 77 years old, I really enjoy living my life this way, so I second your comment, " Shove your comment where the sun don't shine" (SOFT WARM HUGS)
Hi Patricia and everyone else, it's very interesting that you should post this, as last week I had posted over getting myself better,Last year I took steps to get myself up and out there,after years basically sleeping on the sofa,I have removed aspartame changed my food as have joined slimming world to combat the weight gain,started excersising and given up smoking 10wks ago and changed to soya milk as doesn't give me instant stomach pain and on gluton free diet,I take vit d tabs,vit c drink every morning,iron tabs and omega 3.sounds a lot but soon got into routine with all this,and since starting slimming world 5wks ago I been so much more inclined to try and be active,I have a great support in the women and men at the group too the point we are doing race for life and i mentioned my dad had cancer so I wanted to do it for him,the girls have said they'll help and support me and have given me a real boost as they said I'd been more active and upbeat than people who don't have f.m. My husband has always said I am in denial about being ill and disable as i still have my boom n bust days but not so often,and guess in my head struggle to give in too fm taking over,I only turned 40 in feb and my youngest daughter can't remember seeing Mummy well and I went swimming with her last week first time i been in years as found a hot pool and can't be a victim as too easy to get into a rutt with this and trust me I have been really low at times and hid from everyone,hard for my eldest daughter to see as when she was small we were always out doing things,I don't have any answers but I am of the opinion that whatever it takes to make me better I will do and try,I joined in on a facebook thread last week over an article about aspartame poisoning where i had said that f.m. has a lot of symptoms of aspartame poisoning hence why I had cut it out and had been feeling better just to be questioned as to whether I had f.m. at all and did i know what it was like,
1 i wish i didn't have it
2 I wouldn't wish it on anyone
2 like i said ,wouldn't giving up certain things be worth a go if it could make you better
anyway I wish everyone well,big hugs and although hard do keep positive,trust me there is another side xxxx
If no one minds me saying this, this woman seems dangerous to me. She says quote " if I can be cured, why can't others be cured." Hold the front page!!
I am so incensed, that I am thinking did this woman really have fibro? Is she a genuine case?
Because if she did, she hardly helping the vulnerable amongst us.
If fibro sufferers took her advice by doing this,that and another and it all went pear shape. What happens then? I hope they don't spiral and think " she got cured but I didn't why?"
See what I mean by dangerous.
Don't get me wrong I think that every last one of us is constantly looking for a cure.
But if you do decide to follow "how she got cured do so with extreme caution.
I was diagnosed with FMS by 4 different doctors. One was a fibromyalgia researcher in Alabama (USA). I have been out of pain for over 13 years.
If I am telling the truth about my recovery, and I am, maybe I would be wise for me not to tell anyone. I am just trying to honestly inspire and help instead of deceiving. Keep looking for answers with an open mind. Otherwise, you will be stuck in your present state. Because you are close-minded to my input, just ignore it; but keep looking.
Great another person claiming to have found a cure.
Do you think we all sit around crying all day ?
I want to type more but every thing keeps coming out hostile.
GO Girl you are my hero \o/
Let me say to all of you, my information is genuine. It is coming from one woman who got well and can't take her miracle and go home!
I have been serving as a certified nutritional consultant specializing in hormonal imbalances using plant-based replacement for over 13 years. I have also done a lot of training and have serviced hundreds of clients. (I am not trying to sell anyone my services on this site.)
HORMONAL IMBALANCE. I believe this is a huge problem for FMS patients. Most doctors, including ob/gyns, don't always test patient's hormones.
For years, as I was studying, I kept seeing symptoms of hormonal imbalance. My blood tests looked "fine." But I attended a pivotal seminar on saliva testing years ago that helped transform my health. What I didn't know is saliva tests measure the free or active hormone. This measures what is in the cell instead not what is in the blood. Testing hormones in the blood generally looks at the bound level, which is the potential hormone instead of the active one in the cell. There can be a big difference here. Do some research at zrtlab.com and diagnostechs.com
After using saliva tests for 7 years on myself and others, I am convinced this is the best way to check hormones. Not just estradiol and progesterone, but also the stress-handling hormones cortisol and DHEA. Cortisol dances throughout the day, and the best way to check it is the 4 sample test in the morning, noon, late afternoon, and bedtime. That way you see the pattern and the pattern matters.
I believe most FMS patients have cortisol imbalances. (Go to google and type fibromyalgia and cortisol.) There are good plant-replacements that I have seen work again and again.
NOTE; Some hormonal replacement works better for some than others. A key to the lock.
BRAIN CHEMISTRY IMBALANCES. All of you with FMS know about this one. One of the first things doctors do is put us on antidepressants. I tried so many of them early on, but without success. Most affect serotonin and some affect serotonin and norepinephrine, two naturally occurring brain chemicals. But what really gave me great pain relief in the early days was adding another naturally occurring brain chemical called DOPAMINE. Drugs like Wellbutrin and ADHD medications (Ritalin, Adderall, etc) improve dopamine. Dopamine meds completely cleared out the pain. But for me, they needed to be balanced with a LOW dose serotonin med for smoothness.
In fact, I believe there is a connection between ADHD and FMS. I am not the only one who believes so. (See Patricia Quinn, MD, Medical Director of the National Center for Girls and Women with ADHD and author of Understanding Women with ADHD has a whole chapter on subject.) (Also, cross ADHD and fibromyalgia on google.)
DIET- I found I was sensitive to dairy. I took it out and felt better. There are great replacements. I eat very healthfully, but not perfect. Sugar is extremely limited in my diet. I use honey and stevia for sweetness, and am very satisfied with them. Many, many are sensitive to gluten. I see many with FMS, when they take gluten out, they stop hurting. Good wheat free options in the stores. (I am not sensitive to gluten, but I leave it out because I gain weight on it.)
TOXINS- I believe I had a lot of toxins in my system, maybe most of my life. Think about it. When are detoxifying equipment works better, we feel better. Some of us have better detoxification equipment than others.
The right amount and type of fiber, probiotics and greens help ride the body of toxins. Also, magnesium, a mineral that is low in most FMS patients, helps move out toxins. Magnesium really helps me.
When I had a set back or a flare years ago, I would rest a day, and then get back up swinging. It helped my mental health to try, even if I failed. It was empowering. The happy news is my body has survived all the failed attempts I have made to get well!
My heart's desire is for you all to be well. I really believe you can reclaim your health. Keep working on it. Don't give up. If I can get well, I believe those of you with grit can also get well. Reach down deep and pull out the warrior inside of you!
Think of this information as a tool box of ideas to help you feel your best.
I HAVE actually had hormonal tests, which all came back OK. I now take supplements of Magnesium, Omega 3 and garlic. I have NO sugar whatsoever in my diet; I have T2 diabetes, I eat NO starchy carbs - bread, pasta, rice or potatoes, I am wheat intolerant so none of that either, I have no dairy only soya, I just eat proteins and veg, a little fruit. So how come I STILL have fibromyalgia, osteoarthritis, lymphoedema, T2 diabetes, vasculitis, severe depression and familial essential tremor??
No disrespect intended, Patricia,, but if went to my GP asking for saliva tests or even asking for a kit to test my saliva myself, she would probably say "what saliva?!" She would say this because one of my fibro symptoms is an extremely dry mouth and I have been prescribed artificial saliva to combat this! So, unfortunately, this would not work for me! Just saying! Also, your comments regarding Ritalin & Adderall etc. are worrying, they do indeed increase dopamine but at a price (and not a financial one!). Both of these drugs are addictive & can have major side-effects! I have never heard of either of these drugs being prescribed for fibro, but that's just me, other people may know of these drugs being prescribed. I know I wouldn't touch them, though, as the side-effects far outweigh the benefits in my opinion. By the way, I have plenty of 'grit' I have to rely on it to get through each day! This condition can not be cured by 'mind over matter',as if it could be, forums like this one would not exist because we would all 'will ourselves' better!
Good luck in the future & may your 'cure' prevent further Ill-health for you.
A lot of recent research has focussed on the autonomic nervous system dysfunctioning, and I knew as soon as I heard a lecture by Prof. Andrew Holman of Seattle that I had positional cervical cord compression (PC3) it was very difficult to get tests done in UK, but when I was in Dubai I had MRI of my neck, which showed that I did have it - as do 71% of people with fibromyalgia in the Seattle study, versus 0% of people with other connective tissue disease such as Rheumatoid Arthritis. This causes stroking of the cervical cord during movement and this in animal studies has been demonstrated to cause dysautonomia, and the symptoms of fibromyalgia. Certainly when the most powerful system in your body is dysfunctioning, it may cause other dysfunctions, such as hormone imbalance and nutritional imbalance, that needs to be corrected, but I am sure the basic problem in fibromyalgia is linked to a dysfunction of the autonomic nervous system. What can also be seen from studies is that a proportion of people with fibromyalgia do get better, usually in the first three years, and I am inclined to think this is often linked in some way to attitude towards the disease and lifestyle.
From my own point of view, I have always had an extremely healthy life - lots of exercise, growing most of our own food, very fulfilled coping with a demanding job, taking advantage of every educational opportunity (finished by PhD at the age of 60), not taking any medications at all, and remained amazingly well until the age of 64 when I developed Myofascial Pain Syndrome, symptoms of dysautonomia/fibro and later Interstitial Cystitis (IC). I have managed to control my symptoms very well by learning trigger point therapy, holistic massage, Alexander Technique, meditation, yoga, pilates, cycling, and a diet specific for Interstitial Cystitis. I used to take supplements for fibro but since having IC I have now changed to supplements for IC. I have also developed a paradoxical effect to most medications and severe and bizarre side effects to most others, so I avoid medication except for Diazepam, which I have been taking recently for bladder spasm with good effect. I am just going to start a course of Acupuncture from a specialist who mainly deals with IC patients and has statistics that show that 81% of her clients have an improvement, so fingers crossed. But by finding my own way I have managed to cope with most of my symptoms, to rid myself of most of the symptoms of fibro/dysautonomia, and have a reasonable quality fo life, although the IC is the most difficult disease to manage.
What I do feel is that many people with fibro are younge than I am, they have lots of commitments and dependents, financial and family-wise, and do not have a good financial position as I had because I was able to enjoy a full life. It is much more difficult for them to put effort into improving or regaining their health.
I certainly know of one friend in Dubai who took the same actions as you having had fibro for 15 years, but she eventually had to stop the supplements as they caused her to develop GERD. She is now doing a course in Chinese medicine which she seems to think is working for her. So the issue is complex and certainly not a one size fits all.
Girls come on now its hard enough without us losing it with each other .I once wrote an email to this woman who had had fibro and so say had cured it and the knowledge could be mine.So I said to her if you had suffered the miseries of fibro you would not be charging people for a e book .I told her I was disgusted but if she could live with herself and not share with all of us then live with it .I have been ill since I was 12 I am now 61 and things get worse
Everyone keep your chins up this too will pass xx
Well my theory is she is an ATOs assessor and seeing who would take a cure if there was one or those who just want to stay on the social .... hmmmm this could happen you know they are that devious. Lets face it alot of the comments on here are about how much money can i get and how long do i get it for and what do i have to do to get it .... watch out peeps they are here lol .................... sorry just wanted to lighten the mood
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OMG!!!!!!!! I CAN'T BELIVE IT !!!!!!!!!
You look well nourished so you can't have Fibromyalgia...
getting over to others what i want to say !!
Why do I only feel well at one in the morning?
