& loads of food apparently it turns into a substance found in a fireants sting which is poisonus!a lot of people had been diagnosed with m.s & other things like fibro etc but when they stopped using this there was a huge improvement to their health.sorry if ive got bits mixed up but im tired lol i just been out for a family meal & im shattered.so theyre saying its poisoning ppl what do you all think.oh another thing they said was that the sweetener in diet stuff makes u crave carbs.thing is tho i dont really eat junky stuff much or have fizzy drinks so ??
has anyone seen that article about as... - Fibromyalgia Acti...
has anyone seen that article about aspartam? i think that's what it's called anyway it's an artificial sweetner that is found in diet drinks
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Aspartame. .... I read an article in about 1974, saying that this is a carcinogenic substance. I stopped using it then! I have noticed that there have been a lot of articles again recently.
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oh really! i didn't know about that,i had only just read about it
I've been told about this, it's banned in Sweden and its a big problem as I can't find any drink or food that does not contain it, even dilate juice has it , it's something that I think should be investigated . Thanks take carexx
Hello Bluebell10.
Aspartame has come up in the community a lot and if you wish to search you can do using the search facility.
This is what the Food Standards Agency say;
food.gov.uk/policy-advice/a...
There has also been talk of a hoax, urban legends and various other theories, please see Wikipedia Controversy of Aspartame.
However, saying this my personal opinion (not FibroAction) it that I avoid it also as I think the jury is not completely 100% certain about it's effects or not.
I think the decision therefore comes down to your own personal choice as to whether you use diet drinks or products containing this or not. Interestingly enough it is to be avoided in pregnancy ! I think you need to make you own judgement from what you read.
If you want to further read up upon Aspartame and research which may have been done to draw your own conclusions, then here is some information which may help about research itself;
healthunlocked.com/fibroact...
senseaboutscience.org/resou...
It can be difficult to know what is best sometimes but these links above could make it a little easier
Best Wishes
Emma
FibroAction Administrator
it is a problem and i now tend to drink tea or water being diabetic when i do manage to go out for a meal or a drink those seem to be my only choices i do have the occasonal diet coke but only because there isnt much else i can have
lin
I use coconut water, even if I go to a pub I take my own carton and ask if they have it, and then explain that I am on a special diet (for Interstitial Cystitis) with very limited drink opions (no carbonated drinks, no tea, no coffee, no alcohol, no fruit juice, no artificial sweetners and colouring) so I ask do they mind if I drink my own as I can't drink anything they have on offer. They always say ok.
yeah coconut milk is good.
. I think you will find that Coconut milk isnt the same as coconut water. One is the juice from inside a coconut, the other is made from pressing fresh coconut. Creamed coconut is just more concentrated than coconut milk.. Wasnt trying to correct you, just didnt want to confuse. Xx
i know i just like the taste of coconut milk.have you tried sugar cane juice thats quite nicex
hi,ribbonpink, no i havn't tried either im not keen on coconut & have never heard of sugarcane milk,im going to try to go out on thursday so il have a look thanx for that xx ps i don't like normal milk either x
No, not tried that. I have tried some you get in oriental supermarkets. These days i only drink, black coffee, water, hot choclate or the ocassional fruit tea. I very rarely have fruit juice, but have to water it down, or very weak non sugar free squash. Maily though its just black coffee or water. If i come across that sugar cane juice i will try it. Its good to try things xxx
I am afraid you have to be religious in not taking aspartamen. It has been found to be extremely harmful so check the labels and dont take saccharine you dont need it the taste of things will improve and so will your health. xgins
thanx for that i will read labels as much as possible now.so is it any sweeteners & low calorie stuff? i think i owe my bro in law an apology,he's a health freak & said about chemicals in food being damaging. x
I have been trying to avoid it in my diet for years and MSG - E621 basically that one is like artificial salt. Its a flavour enhancer, but all it does is dehydrate you. Chinese cooking and flavoured crisps are the worst. I have to say my health doesnt seem any better, but i feel better in knowing I'm not adding them to my body!
Hello Fibro,
I wanted to further mention MSG which is Mono Sodium Glutamate, as it is interesting you brought it up.
Personally I know (no FibroAction hat on ) there have been reports that people living with Fibromyalgia have a higher than normal level of Glutamate in their Cerebrospinal fluid (CSF).Therefore, many people believe that avoiding MSG in Fibro is important due to these findings.
Does anyone else avoid MSG ?
Emma
FibroAction Administrator
I'm glad im not the only one who tries to avoid them. I have. No idea if im intollerant to either but i know the next day if i have had any of either, although i think my body is more able to tollerate the artificial sweeteners more so than MSG..... Sorry. I should have spelt it out in full above. its surprisin how many foods this can be found in. The main culprit is in chinese cooking and restuarants/takeaways do not measure it. Hence the reason you iften feel awful and dehydrayted.
As for drinks when out, i only ever have water. I tend to drink sparking as most bottled waters are naturally carbonated, however from the pumps in pubs etc or value bottles from the supermarket, the fiz has been added, so not always tollersted by everyone.
Did you know that many toothpastes contain aspartame or othervartifucial sweeteners too???
Thats interesting,is it on the label?xx
hi,no i didn't know about msg or that it was in toothpaste...interesting the thing is what are we supposed to do,i suppose just eat veg,fruit,fish & meat & only drink water,its really awkward,don't you think or is it just a matter of getting used to it,its worth doing tho if it helps..i do wonder tho what started fibro off in the 1st place....x
Apart from Chinese takeaways where else do you find this?as I wouldn't mind trying it myself xxx
MSG is in all sorts of things, many instant gravy graduals, ready meals, flavoured crisps, its often labeled as E621 or Flavour enhancer, some do put the full name of Monosodium glutamate. I try to avoid it if i can because the meds i take dehydrate me as it is, so I always know if i have eaten something with it in. The only way i can describe how my tongue feels afterwards.....like if you pour salt onto a slug to kill it ....eeeek!! Sorry if that made anyone feel ill! Xxx
Hello Fibro & all members,
Ready Meals are a culprit I'm afraid and this can create problems. I personally think a fresh healthy balanced diet is probably the best for Fibro. However, due to our symptoms and fatigue especially most people use ready meals.All understandable Care Agencies also seem to only have time to heat up a ready meal and not cook food from fresh nowadays too.
In 1996-2001, when I was a Home Carer we cleaned and cooked meals from scratch ...this lead me on to my nursing qualified 2003. The only way I suppose is on a good day cook and mash all fresh potato & veg , freeze it in portion to take out the night before to be reheated and find a meat that can be easily cooked to add to it.
Or the other option, if you have a kind family member can plate up a dinner every night when they have their evening meal that can be heated up the next day.
We seem to be going back to the old saying 'Meat & 2 Veg' aren't we?
We did do the poll on Nutrition which may be of interest to all, here's the link;
healthunlocked.com/fibroact...
It features MSG and Low Oxalate which had some press lately , but like you say once you've avoided it all. What is left you can eat !!!
I personally think avoiding a few things and eating others in moderation might be the key. One chinese every month might have very little increase in symptoms. However if you are eating one a week (if you can afford that, that is ! !!!) then this might not be so good for Fibro.
Interesting post Bluebell10 and Thank You for your input Fibro,
Best Wishes
Emma
FibroAction Administrator
When my OH has time we cook a large joint and then slice it, bag it in portions and freeze. I have taken to buying frozen mash or roasties. Own brand is too expensive. I try to get him to buy some fresh veg but we have to time it right with his shifts, otherwise we end up throwing it away! I hate waste. You are right Emma, we are tending to go back to meat and two veg style of food again. We try to eat out once a week, we are limited as we live in rural area and have to travel 20-30 miles for anywhere decent, but we go somewhere where everything is prepared fresh. At least that way if we have had to have ready meals we get at least one proper meal a week and i at least go out once a week.
I cant believe how much i used to love cooking but now i struggle so much. This year is going to be a slow one for me as i'm waiting to have my second hip replacement. Recovery is going to longer due to congenital hip problems and several other ops. Its un-cemented too. My other is 10 years old now and im worried thats going to wear out. I am so keen to eat healthily to make sure i heal well, but if my husband is working full time its not easy.
I used to love chinese food until i realised the food was making me ill the next day. Indian food is fine but i do try to stick to the basics now though. Xxx
fibro,im really sorry to hear about yr hips,you must have so much pain on top of fibro too! i really do hope you don't have to wait too long xxxx
Thats ok, thanks tho for your kind thoughts. I was born like it so know no different! After six major ops on one hip i had a replacement one and i were 20 yrs too young to really to have it done, but bone had worn out, so it had to be done, but since i have put on a lot of weight, not eating properly! So im on a drastic reducing diet and have lost just under two stone since september. My consultant is a paediatric consultant, so every time he puts an urgent kiddie on the list i slip back a little further, but its not urgent. At least i can't feel bone on bone like last time. I'm not complaining as i only want him to do it. I have to be awake too during the op as they think a general anaesthetic may be too dangerous for me. I shouldn't have morphine either all due to Obstructive Sleep Apnoea! Im just a disaster lol i guess thats why i dont focus on fibro so much. For about 15 yrs prior to being diagnosed, they would put all these 'other' pains down to my hips, my spine had been put out of alignment due to having different leg lengths, so it was never fully investigated!! Its my birthday soon...the best present i could have is to get a date to go in
Sorry i deviated away from the topic of the thread, but the diet is still relevant.
Take care, night night xxx
o fibro you poor luv,you have been thru the mill haven't you,& still going thru it! so what date's yr birthday then a very well done u for losing so much weight.take care xxx
Hi bluebell, ive just surfaced lol sorry for taking the thread off topic, but as it was you that started it, i thought no one woukd mind.
I believe that being born with a disability, although i'm not strong physically, i feel its made me a more compasionate person, i dont see it as being through the mill. Thanks so much for congratuating me on losing weight. I remember years ago i had lost weight, got den to the weight i shoulsh be and everyone said hw awful i looked! I wasnt that thin but i did get down to a size 10, sadly over 20 years have gone past now so i doubt i will ever get back to that weight. I'd need a. Whole new wardrobe and i couldnt aford it!
Speaking of weight and the main topic of this thread, this is just my thoughts, i havent read it, but i wonder if there ihas been any research done as to whether it is all these additives that is making it so much harder to lose weight. Things like preservatives that never used to be in our food. It does make you wonder!! Xxx
hi fibro,that's ok, lol,i couldn't sleep,i havn't been up long either. it could have something to do with preservatives it's worth a thought,but i think with me it's due to a lot of things,up until 5yrs ago i was tiny a bit underweight actually,i had a job where yr always on feet & running about i never really ate properly this fibro kind of seemed to creep up on me so in the end i was going to work on over counter pills & freeze gels i had also given up smoking,was going thru menopause too,i had been feeling extra aching &tired for some time but put it down to overdoing things then 1 day i felt as tho an electric shock had gone right thru my whole body!it was awful,that was it i could barely walk i had to give up my job to cut it short i had a crap gp who really didn't give a damn,1 day i saw a locum who refered me to a specialist & im going off the subject a bit now but i had colon ca,& it was only thru a follow up a yr after that i was asked why i was still in so much pain with my back & legs,tired etc,the consultant asked my gp to refer me to reumatologist it was only last april that i was told i had fibro so with loads of pills not being able to do anything active i have gained 4 stone! i mean i know i needed to gain some weight but not that much! xx
Oohhh i hope no one thinks I have taken over your thread, but its been good to chat. Since i got up this morning im now back in bed as my legs are killing me, even after they replace my hip they know they aurent going to get rid of all the pain as its not just coming from the bone.
I was so sorry to read what you have been through, but you are here and thats a good thing.(((hugs)))
It must be hard finding the right things to eat that suit you best.
Im not suggesting this to anyone as it is rather drastic, but im not able to exercise hardly at all, with weight loss you need to eat less and exercise more, although i was actually six stone over weight they still agreed to do my hip, where as know many people wouldnt even be put on the list before losing x amount of weight, this was why i was really keen to try and do it. Im never going to get to my proper weight, but anything is a bonus. I was told the only way I could lose it was to stop eating! He didn't mean litterally, as we have to eat something, but to eat no more than my body can burn. The amount of dinner for example for me to start shedding pounds was approx two or three tablespoons of food. If you imagine a small sugar bowl, thats the amount. Or imagine you have a gastric band! It sounds like it isnt possible but it is, it just takes time. I guess i will have to be on a permanent diet which is something i dont look forward to, but i know i will put it back on.
They say to aim for a pound or pound and a half a week, any more and it will go back on quicker.
My diet isnt anything special, although i am not eating anything fried or battered. We go out for an indian and they make me a tikka salad or i just eat a very small amount of whatever my husband is having. If im peckish i will snack on dried fruit, or i do allow myself some sweets.... Wine gums or jellybeams. Just a hand full. Its still possible to lose weight! The hardest thing is sticking with it. Take care Xxx
lol,no i don't think you,ve taken over at all as you say it's good to chat i only really have my oh to talk to all day & my kids & their partners but i can't talk to them about me stuff.yes it's gotta be real hard for you,but as they all say to me at least your here.i just ordered some detox patches which you put on your feet & some to put on yr belly off ebay,il give them a try,i don't really want to lose all they weight i gained as i think i did look better with some of it,i was a bit scrawny for me age so maybe a stone or so lol.take care & rest up,xxx
Oh yes! I read about aspartame being bad news fro IBS sufferers so cut it out and not only did my IBS improve dramatically but my fibro symptoms lessened as well. I used to be very careful about avoiding products containing it when my kids were little as I'd read years ago that it was contraindicated for pregnant women in the USA so figured it probably wasn't something I should give my babies. I only really started eating and drinking it regularly when I decided to lose weight a few years back. Whether it contributed to me getting fibro I shall never know but I avoid it wherever I can now and opt for sugar or one of the natural alternatives like stevia.
It is banned in many countries but not in UK. I know it makes my Interstitial Cystitis flare. They even put it into children's medicine would you believe.
In my opinion I think that so many people read the net to much an maybe a lot of people believe in what they read as it like reading something about spiders or something like that then a lot of people would start to feel spiders crawling on them.......
I know everyone is different in there illness but as for me I have been drinking diet coke for well over 35yrs and before that it was a can of Tab which I would have drank roughly 10-15 cans a day as I don't like or drink Tea or Coffe never have done but like others I was told about Aspartame....... And like a lot others we would try anything to try an ease any pain or take that tiredness away.........
But as yet I've found not 1 bit of difference in my health or body and I've been not drinking it for about 6-7mths ago........
But as I say a lot of people work in different.............
YES ASPATAME IS NOT GOOD FOR ANY ONE REALLY OR FIZZY DRINKS ESPECIALLY FIBRO SUFFERERS.DRINKING MORE WATER HELPS US MORE .
Well as I've said that not everyone is the same..... Also so sorry to state that others suffer more than others and I'm happy to hear that drinking water seems to help you more and if only it was that easy to find something that helps anyone that's so great to hear as I'm sure a lot of fibro suffers are happy to hear that to..........
Aspartame can also be found in such a lot of different foods.
just seen a programme and featured this app it is safe and its in natural foods as well
Yes! There have been a couple of TV programmes on Channel 4 this last couple of days where it has been mentioned and they say it is carcinogenic so don't think I will be having any more of it.
Thanks for the post though and bringing it to other peoples attention.
Ken x
Hi all ,
I read about this soon after my diagnosis and decided to give up diet coke - hugely difficult for me as I was drinking at least a can a day.... Addiction methinks. I also try to avoid anything with artificial sweeteners now ( which does involve reading a lot of labels) as I found a big improvement in my pain symptoms after a couple of weeks.
I guess it can affect some people more than others but I won't be going back to it.
Moo x
I also believe that it is bad news so have tried to cut it out and only have the occasional diet Pepsi now.For three months I went back to eating rubbish and drinking Pepsi again and it has affected my health so Iam back on the slimming world diet but have to avoid the artificial sweetener though.I use stevia instead.I must say that my pain has never improved that much from it but I shall continue with it as I've read loads that it is bad for your health xxx
Hi,
I have not seen the recent studies on aspartame, but I did work on a study of aspartame in 1990, and the findings were not good, but only for certain people, and I would warn that with research findings, a lot is down to the statistics, and indeed the bias of the topic - suggestions and findings are made, but need to be validated through further research - for example:
The study I was working on with aspartame was of the effects of aspartame as it relates to people with PKU Phenylketonuria - people without the ability to properly break down an amino acid called phenylalanine), and during that study the side effects of high levels of phenylalanine on the body were examined.
The study found that even in people without PKU, the levels of phenylalanine increased in the body when taken in the form of aspartame ( also known as accesulfame K or nutrisweet)
The study found that 72% of violent male prisoners had high levels of phenylalanine in their body and that thier levels increased more than females when given the same amount of aspartame.
The interim conclusion of the study was that due to the higher testosterone levels in males than females the amino receptors bind more readily with the phenylalanine.
In short the idea was that not only is aspartame and other sources of phenylalanine not good for patients with PKU, but that "statistically" there may be an increased risk of violence in males. -
This is just one of those things where the statistics add up, but I am not sure if any further research had been done into the link with violence.
Ideally we would avoid artificial substances that do nto benefit us, i.e. unless we had a medical need to remove sucrose from our diet, there would be no need to ingest aspartame - however the reality is - it is a cheap, very sweet, easily manufactured substance and if you check your full fat soft drinks and any number of prepared foods, they will contain artificial sweetener as well as sugar - so like MSG it is hard to avoid, unless you can press your own juice and cook from scratch.