Cure for fibromyalgia?: Just received... - Fibromyalgia Acti...

Fibromyalgia Action UK
48,213 members59,842 posts

Cure for fibromyalgia?

Mags69
Mags69

Just received my latest copy of WDDTY ( What Doctors Don't Tell You) , and there is an article about healing yourself from Fibromyalgia.

It uses BioSET therapy, a wholistic way of diagnosing and treating, to repair your immune system. I have only just read it, but I will research later to see if there are any practitioners in this country.

By the way, WDDTY is a brilliant monthly magazine for everyone who is interested in improving their health. 🌹🎶

24 Replies
oldestnewest
desquinn
desquinnAdministrator

reads like full of pseudo science and cites tangential clinical studies to support but says no studies have been done on this therapy. Not what I would spend my money on. Article is click bait material and sensationalist and will definitely increase heir website hits.

"To date there have been no clinical studies supporting the healing effectiveness of BioSET, let alone using BioSET as a healing system for fibromyalgia. But there is plenty of research verifying the effectiveness of acupuncture and acupoint therapies for fibromyalgia and other health conditions."

Mags69
Mags69 in reply to desquinn

Just because there hasn't been clinical trials on this therapy doesn't mean that people have not benefited from this. In fact acupuncture is part of the treatment.

The medical community denounce homeopathy because it can't be 'proved' in clinical trials despite thousands of testimonials from patients to the contrary.

desquinn
desquinnAdministrator in reply to Mags69

"Just because there hasn't been clinical trials on this therapy doesn't mean that people have not benefited from this. In fact acupuncture is part of the treatment."

This is not what I dais but surely clinical trials based evidence is what we want to we can quantify efficacy and risk and long term effects. Anecdotal does not really do this.

"The medical community denounce homeopathy because it can't be 'proved' in clinical trials despite thousands of testimonials from patients to the contrary."

Cause and effect should be provable. At present there are plenty of people using circus tricks, con artist behaviour and behaving like charlatans to advocate "treatments" that simply do not work. Proper evidence base is the method to ensure things work properly and as advertised. Placebo benefits are great and may explain some or there may be some other reason but bottom line is that at present there is no cure for fibro and this is just marketing a therapy that supposedly cures many ills and wants your cash.

Frustrating as fibro is to get treatment, I do not like the approach where we are demonising the health professionals and being asked to put our faith in people out for a profit. Un regulated areas like this are prone to risk. Just look at the recent articles about supplements having fake ingredients, misleading claims or no where near as much of what you are asking for.

Mags69
Mags69 in reply to desquinn

I'm sure there are charlatans, as there are everywhere, but we have to use our common sense and research whatever we intend to use.

As far as profit is concerned, the people making the money are the big drug companies using patients as guinea pigs. You seem to be ignoring the fact that some of these drugs are responsible for untold damage while denouncing anything 'alternative' as quackery.

Why would farmers and vets use homeopathy ( an 'unproven' therapy) on their animals if it didn't didn't work? Animals are not susceptible to the placebo effect.

desquinn
desquinnAdministrator in reply to Mags69

I am not saying the current system is perfect as it is far from it but our imperfect system does not mean we should reach out for a worse replacement. When you mentioned cure I was obviously biased when reading it as I already knew it was wrong but then it mentioned a lot of pseudoscience.

It also mentioned Applied Kinesiology and we had a charlatan come to the local group I attended and performed his circus tricks to get clients. You can see these tricks explained here as they are done in shopping centres and elsewhere to entice people in. youtube.com/watch?v=Piu75P8...

Whenever there is an article like this you should read it with a prove to me it is right attitude rather than it needs to be proved to be wrong.

Mags69
Mags69 in reply to desquinn

I mentioned' cure' in my post title as that is what the lady feels she has had. Of course, what works for one will not necessarily work for another but we should be more open minded to other therapies. After all, even acupuncture was greeted with scepticism at one time. Not everything can be explained by science.

As there is no cure-all yet for such a complex disease, we should be doing what we can to help ourselves regain health without dulling the symptoms with potentially harmful chemicals.

bobbybobb
bobbybobb in reply to Mags69

I recently read some research indicating that small fibre neuropathy could be the potential cause of Fibromyalga. So how do we dull the symptoms of such a complex pain system. I think its very naive for anyone to think it can be self managed.

RayB
RayB in reply to Mags69

Mags, I am always expounding the fact that their is three forms of stress Mental, Systemic and Phisical. They all have the same effect on the body. I believe if you remove the stress,, and they earlier the better,,, which is what they did here, the body can recover from literaly anything..

This would account for much over the years in the way of people getting better from alsorts of "incurable conditions" by changing their diet and lifestyle,, the classic being the work of Professor Arnold Ehret. I believe the body heals it's self but it certaintly will not heal it's self if it is still reacting and being bombarded with all the assults that caused the reaction/ilness in the first place.

Mags69
Mags69 in reply to RayB

Hi RayB, you are so right! It is such a vicious circle of stress, pain, causing more stress causing more pain!!

There are so many reasons why we are sick, and finding and eliminating them is part of the puzzle. 💮

RayB
RayB in reply to Mags69

Mags,, I think the depth of meaning behind my words was perhaps lost in translation.

The best way of expalining it is, various alternative diets and protocals have had amazing results over the years. The thing that they all have in common is a very "simple" and chemical free and likely raw diet,, getting fresh air,, not overdoing things and getting rest, also some form of feeling better about yourself it could be in forgivness or looking at life differently. All these things are about removing stress,, Mental Phisical and Systemic,, I believe these are the true keys to healing ANYTHING !

To be honest I am really skeptical of about 90% of what is called medcine,, today,, I think the drugs just put more stress on the body (systemic) trying to deal with the chemical load and at the end of the day make things worse while perhaps just masking a few symptoms,,,,,, and at what cost!

Ray

Mags69
Mags69 in reply to RayB

Hi RayB, I totally agree with that, although it is really difficult at times to be able to achieve what we know is good for us!🌹

RayB
RayB in reply to Mags69

Mags,, have a look at Ehret's work,, you can download his book for free,, it should take you down the road of many following his theories today.

My view is that it is all about relieving your body of stress,, what goes in,, what goes out,, I do not believe you need special herbs or supplements.

Really it's all less is more sort of thing.

I've been doing it for about 6 mths now for a condition quite a bit more serious than fibro, one which I think alopathic treatment is horrific and I walked away from the Dr's and their wares, I am using nothing more than a very limited and simple diet. It all seems to be going well and I am hopefull that the fibro will at least improve at the same time. I view it all as a work in progress,, I am doing it,, I accept whatever,, I am not frightend to death with worry about tomorrow treatment or what is happening,, I see it simpily as my decision and it's going well I am relaxed and confidant about it at this stage. If fact I think Dr's have lost there minds within and to and education of chemicals belief and throry they rather mistakingly call science and with it have lost any resoning they ever had toward the nature of man.

I worked for many years with an old vet from whom I learned alot,, it was the mans outlook, cynicisim and readyness voice his views from experiance of 60 odd years in practice.

Ray

Mags69
Mags69 in reply to RayB

Yes, will definitely do that. Having a horrible flare which has sent me to bed, hoping to feel okay enough to leave for a week's family reunion later. I usually get one just before holidays etc. so maybe stress?😢

RayB
RayB in reply to Mags69

Mags, The thought of spending a week with some of my extended family would probably send me into a flare.

I walked away from all their unnecessaraly complicated and toxic lives for the good of my own health along time ago and I have never looked back.

They have no way of contacting me,, it's wonderfull !

99.999% of chatter is just not important!

Good morning Mags,

I'm not sure what BioSET is, I'll have to google it. My two cents..."healing" fibromyalgia is not just about the immune system, I am convinced that it is in part a sleep disorder. I would recommend those of us suffering with fibromyalgia spend their time and money having a sleep study done, you may find, as I did, that you skip the restorative stages of sleep and go directly to REM [the deepest sleep state]. After a few hours my brain tells my body I am well-rested and I wake up...exhausted. When you do this repeatedly day after da, year after year, sometimes decade after decade[as I have] you end up with many health issues, fibromyalgia being one of them.

Have a beautiful, lovely, relaxing, pain-free [as much as you can manage] day.

~Sha

I googled BioSET and got many links for the same stuff:::: "BioSET and NAET are two non-invasive, drug-free approaches of eliminating food intolerances and environmental sensitivities."

Hi Sharon, I'm guessing that you live in the States and it seems that there are quite a few practitioners there, but not so in the U.K. which is a shame. I agree that not achieving deep sleep is one of the contributing factors of our many debilitating symptoms, but there must be a fundamental reason, or reasons, why we can't achieve it. We will have to try and figure it out

ourselves! 😃x

Mags,

It's not about the deep sleep, it's the lack of the restorative sleep stages prior to deep sleep. Here are the 5 stages of sleep;

Stage 1

Stage one of sleep, also known as the transitional phase, occurs when one finds themselves floating in and out of consciousness. During this NREM stage, you may be partially awake while your mind begins to drift off.

This period of drowsiness eventually leads to a light sleep. This is also the time when the muscles jerk, followed by a falling sensation that jolts you back into consciousness. This experience is known as hypnic myoclonia. After winding down in stage one, your sleep cycle will slip you into stage two.

Stage 2

Almost 50% of the time spent asleep over the course of the night is spent in stage two. Stage two is also a non-REM phase and is one of the lighter stages of sleep. Even though it is a light stage, the heart rate begins to slow and the core body temperature decreases.

During stage two, eye movement stops and brain waves slow with the occasional burst of waves called sleep spindles. Stage two can also be characterized by the unstructured periods that alternate between muscle tone and muscle relaxation.

Stages 3 & 4

Stages three and four are characterized as the deep stages of sleep, and are often the hardest to wake up from. If you try to wake someone up when they are in stages three or four, they will most likely be disoriented and groggy for minutes after they awake. Stages three and four are often grouped together because they are the periods of slow wave sleep (SWS).

Slow wave sleep is a NREM phase of sleep, and is the deepest sleep that your body enters throughout the night. It is called slow wave sleep because the brain waves slow to what are known as delta waves with the occasional faster wave. As the body moves from stage three to stage four, the number of delta waves increase and the faster waves decrease.

In addition to the deep sleep caused by the delta waves, blood pressure drops even further, and breathing becomes deeper, slower, and more rhythmic. During slow wave sleep there is no eye movement, and the body becomes immobile.

However, even though there is no muscle movement, the muscles still have the ability to function. These are the stages when children sometimes experience nightmares, bedwetting and sleepwalking.

Stages three and four of sleep are extremely rejuvenating to the body. During slow wave sleep, hormones are released that aid in both growth and appetite control. The growth hormones help to replenish muscles and tissues that were exerted over the course of the day, and the appetite controlling hormones help limit feelings of excessive hunger the following day.

These hormones are essential to the development of a strong body and help control unnecessary over-eating. In addition to the release of critical hormones, the blood flow to the muscles increases, providing restorative oxygen and nutrients.

Stage 5

Stage five is the only stage of rapid eye movement (REM), and is unlike any other sleep phase because the brain is bursting with activity. Most adults spend about 20% of sleep in REM, while infants spend almost 50%. During non-REM sleep, the mind rests while the body heals, but in REM sleep the mind energizes itself while the body is immobile.

REM sleep is called as such because the eyes dart in various directions while the limbs and muscles are temporarily paralyzed. Breathing becomes shallower and irregular while the heart rate and blood pressure rise from the levels they were in previous stages.

Most dreaming takes place in stage five as a result of heightened, desynchronized brain waves, almost similar to being awake. This stage of sleep revitalizes the brain, supporting sharp and alert daytime function.

Individuals begin waking up at the end of stage 5. Upon waking up, an individual’s core body temperature begins to rise in order to prepare the body for the activity of the day ahead.

Wow, Sharon, you have certainly researched this subject!

I had meant to put restorative sleep, not deep sleep, but was in a bit of a rush at the time.

I imagine there must be some malfunction causing the brain to not produce the necessary sleep hormones. Thanks for the information - there is so much that we don't understand.

I take a herbal remedy based on Valerian , which gives me a better night's sleep, but also make sure that my bedroom is dark to produce the melatonin/serotonin.

Wishing you lots of zzzzz's tonight!😴

skit
skit in reply to Cape_Cod_Sharon

great post Sharon . you could re-post called sleep what is it for those not following original maybe to help forum?

Hi could you tell me what benefits you found of getting a sleep study done and how you could get one done thanks? It sounds really interesting and something that I think would really benefit myself.

Hazel_Angelstar
Hazel_AngelstarAdministrator

Ok, I'm coming to this post as someone who regularly uses various therapies including acupuncture, homeopathy, massage, reiki, crystal therapy and more to help manage my symptoms..... However, I would still be very wary and cautious regarding spending money on any therapy which did not have some sort of evidence to back up their claims. Anecdotal evidence and testimonials on a website can be false.

Hi Hazel, I think I have opened a can of worms here! I wasn't suggesting that this will help everyone, just mentioning the article.

As you will know from using some of these therapies, e.g. homeopathy and acupuncture, they are a means of clearing the energy blockages in our systems so everything can function normally again.

On the other hand, I'm not sure that reiki and crystal therapy have any evidence apart from anecdotal, but I wouldn't discount them if they helped manage symptoms.💮

Firstly, I just want to acknowledge everyone who has shared their thinking. There will be a whole mix of us out here from people who have just been diagnosed to those who have battled on for years. I think there is a distinction between how fibro is resolved (I haven't found that resolution yet and neither has the NHS) and the many treatments which help alleviate the many different symptoms. As far as successful management goes, I use everything from pacing, to pain meds, to magnesium oil and right nutrition. Exercise can help or hinder depending on my symptom load. There are reported cures, I know, but I have spent money trying to recover for years and I am still not out of the woods yet.

You may also like...