I did some research hope it helps xxxxx - Fibromyalgia Acti...

Fibromyalgia Action UK

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I did some research hope it helps xxxxx

51 Replies

Hi people so I'm 9 stone just under 5foot 2 so normal weight however my bloods came back high risk diabetes but I don't eat sugar and low vitamin d turns out people with fibromyalgia have insulin resistance and low vit d not all some so if you get bloods back and u don't have diabetes in your family or you a healthy weight it's possibly due to insulin resistance,my doc left me in limbo I would of loved him to of rang me and said look it is pointing to fibro because your bloods came back high risk diabetes but he Diddnt I read up on it myself we must educate our selves or we can become quite hopeless and afraid nearly a year ago today I honestly felt like death but due to diet change and educating myself I can live more in peace I honestly would not wish this on any one and I hope one day there is a cure xxxxx

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51 Replies
honeybug profile image
honeybug

Thank you Lauren 😊🌿🌸🦋

My autoimmune disease killed off my thyroid gland over a year ago and I was almost totally bedridden for 6 months. It caused me to double my normal weight and now diabetes is setting in.

Thank you for your research. It’s good to know what’s going on even if you can’t change things like in my case due to dozens of other comorbidties on board.

I hope and pray things will be for the better for you and abundant blessings for caring and sharing.

EJ 😊🙏🤗💗😘🌿🌸🦋🕊

in reply to honeybug

Thank you so much bless you xxxx I hope your be well and diet really does help bring sugar levels down xxxx

Roselil profile image
Roselil in reply to honeybug

Dear Honeybug, so very sorry to hear all this. I tried to send an email to you, but it came back undelivered. Remembering you in prayer. Love from Roselil

honeybug profile image
honeybug in reply to Roselil

Morning my precious sister Roselil. 😊🌿🌸🦋

How I’ve missed you.

Kept you in my thoughts and prayers sweetie.

Thank you for your loving words of support.

Like you I have so many (dozens) of conditions that play up multiples at times so I’m always flaring with something. I’ve learned to accept it and the He always helps me endure this. I use my empathy to aid others through their sufferings with hopes it helps them at least a little.

How are you my dear sister?

I love you so much sweetie.

I hope your hubby is doing better.

EvaJo 😊🙏🤗♥️🥰👼🕊

Roselil profile image
Roselil in reply to honeybug

Dear Honeybug, I am so pleased to hear from you, but oh so very sorry to know you are suffering so. I am much the same, and felt this morning as if I had been hit by a truck! But yes, like you, I am happy to endure knowing that in all our sufferings, He uses us to help others who are suffering and need help and comfort. All so limited, but all so yet blessed. Love and prayers, from Roselil (English Rose)

honeybug profile image
honeybug in reply to Roselil

I’m so sorry sweetie about your being hit by that ole truck hun.

Can you take anything for it.

Ohhh if I only had a healing wand you wouldn’t suffer this anymore. Best I can do is keep you in prayer 🙏.

I just said a special prayer for you and your hubby too.

Sending you gentle fluffy hugs and kisses.

Love ♥️ and prayers 🙏

EvaJo 😊🌿🌸🦋👼🕊

in reply to Roselil

Are you a Christian x

Roselil profile image
Roselil in reply to

Yes, dear.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

The diabetes link had been tenuous at best but further to that the original PLOS article that started all the conversations had been retracted.

in reply to desquinn

Sorry I don't understand?

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

The original study that suggested a link between fibro and diabetes has been retracted.

in reply to desquinn

oh ok I see x

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

The last responses I did were short as I was on the phone and I wanted to add the retracted link which is here: journals.plos.org/plosone/a...

When this study came out in May last year there were so many articles on tabloids and the web about the possible connection and the articles were also even more distant from the original study. The study itself had some limitations and was at the point that it needed to be confirmed and replicated. However, the papers were saying that there was a path to follow and this generated hope.

Maybe more research will find something that connects the conditions and perhaps the study design will be fixed and rerun. But when there are articles it is always best to go to the study and check it out or look at authoritative sites that will tell the truth even when it reduces hope. Charities, government and NHS sites are all following protocols like the Information Standard that means people like me try and check our facts, sources and evidence before writing an article or stating an opinion that has weight.

The tabloids and even websites that are less fussy are interested in clicks only. Then there are the sites that are just clickbait to get you on while they regurgitate someone else's content.

If you are looking for info on type 2 diabetes then please got to diabetes UK as their guides are excellent and they have plenty of support.

in reply to desquinn

Thank u I apreciate your information however I do believe there is a link as people who have diabetes develop fibromyalgia not all some and some people with fibromyalgia have insulin resistance it's been proven medically I don't want to research diabetes type to as i believe I have fibromyalgia and want to keep my mind focused on this condition as there's so many Symtoms I can't bear to search up other illnesses ,thanks for your reply tho I don't have diabetes I'm hight risk xx

in reply to

I won't post any thing else on diabetes as I can see your insinuating you don't want me to discuss links between fibro and diabetes

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

No what I am saying is at present is that there is no good evidence that says there is a link and there are no treatment options available that come out of this lack of a link. If you are okay to think there is a link that is fine but at present there is not one that comes from research papers, clinical trials etc. Happy if someone else will point towards it and continue the discussion. Also if this study is improved and does get replicated on another setting by other researchers then we at FMA UK will report on it and look for more research to be done.

I can understand that what I am saying is not what you may want to here but research gets to the truth and this leads to better treatments and manageability. Sometimes this truth is that there is nowhere to go with a theory. But please base your decisions on sources of good evidence.

And if you have links to good sources of evidence please post or PM them and I will be happy to check them out or run them by our Medical Advisory Board.

in reply to desquinn

Thank you I really hope we get awnswers soon to join dots it's so frustrating x

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

So do I. I have been diagnosed with fibro for about 15 years and have been involved with FMA UK for pretty much all of that time as well. I have heard and seen many theories but I am not too jaded by them coming and going :)

There is good research going on and things have improved over the years in terms of awareness, management and treatments. It could be better of course.

in reply to desquinn

15 years is a long time I don't suppose there was hardly any research back then how did u feel when u finally got a name for it I'm so scared as I get so many Symtoms xx

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

On the contrary I have seen the first drugs approved specifically for fibromyalgia as well as other research. Lyrica was approved on June 21st 2007. The research in the 70s and 80s helped to define the condition and give it the name it has today but work has been ongoing since then to further refine the condition and learn more about it.

in reply to desquinn

Any advise for my Rhumatologist appointment what's to be expected etc xx?

bobbybobb profile image
bobbybobb

Hi Lauren, There is a national drive for people at risk of developing type 2 diabetes. Has your GP referred you for this. If you have had a couple of blood test that have shown your at risk, you should be referred. You will go along once a month to a center in your area. xx

in reply to bobbybobb

Hi hun yes I have to go on a diabetes awareness course xxx were I learn what foods to eat ec xx

bobbybobb profile image
bobbybobb in reply to

I had gestational diabetes with all my children. There is a big family history. Now I have glucose intolerance. Like you I eat healthy, diet low in sugar, but I tell you, those bannoffe bombs from Asda, irresistible. xx

Mmmmmmm sounds delicious I can't have no sugar I'm a cake lover but after eatting sugar the next day I have awful flares x

Instead of a hot chocolate large fudge brownie and 3 scoops of vanilla ice cream il have a banana and low fat youhurt 😕😕😕😕

bobbybobb profile image
bobbybobb in reply to

Luckily for me I never liked Ice cream but I do like fresh fruit with low fat yogurt, it'a always a favorite. xx

Apple crumble is amazing sharp and sweet with hot custard or ice cream I can not tell u the last time I enjoyed sugar I've not had it in about 11 months only good treat is youhurt coverd raisins x

bobbybobb profile image
bobbybobb

I think, you have to have a treat now and then. xx

bobbybobb profile image
bobbybobb

Tiramisu was my favorite until I had a bannoffe bomb, in fact I'm just nipping to the Asda. lol x

bobbybobb profile image
bobbybobb

My OH, that's his favorite Turkish Delight, he's always eating them. He's at risk of diabetes but he wont listen to anyone. He eats tons of chocolate. I keep telling him. His doctor keeps telling him. I've started getting him to eat a few healthy snacks. Which he is trying at the moment. I do worry about his health a bit. xx

Fra22-57 profile image
Fra22-57

Well done with your healthy eating.my husband is type 2 but slim.he was only one in the diabetic class who was and the lecturer kept harping on about being overweight. I had to speak up and say it doesn't always be that way.his bloods are ok now .he takes medication metformin

in reply to Fra22-57

Glad he's on meds and its so true people stereotype and assume diabetics are over weight but far from the case at times xxxx

sueshepy profile image
sueshepy

I am of the same height and weight I became diabetic type 2 in early 40's. My sugar was over 30 and at any time I could have gone into a coma. My Dad and 2 of his sisters were diabetic so my GP has put it down as hereditary.

Im now on insulin and tablets for diabetes. Normally high blood pressure and cholesterol go hand in hand with diabetes but not with me. My cholesterol was very low and blood pressure was fine.

Ten years on I suffer with Tendonpathy of the shoulders, osteoarthritis, fibromyalgia, flexor tendon nodules, bursitis from my neck down to my toes and now signs of Macular eye disease. I am 54 and have been give ill health retirement from work which was a relief as I worked in a very fast, high targeted, stressful job for 34 years and in my opinion the job brought it all on.

But I am happy as I now don't have to worry about getting up for work when I feel so ill.

in reply to sueshepy

Bless ya Hun atleast u now no wats wrong Hun and its controlled as best as can be was lucky u found out when u did x

margaretpaloma profile image
margaretpaloma

I am in your situation, except that I am overweight and have to be very careful what I eat or I put on weight. I too don't eat sugar, it makes me nauseous. I am prescribed metformin for insulin resistance, since taking it my glucose levels are good and my weight problems not quite as bad. Metformin has some side effects, don't they all, but to my mind taking it is better than developing diabetes, I have enough problems without that.

Have you actually been tested for IR (insulin resistance), its just a simple blood test?

BTW I am under the care of an excellent endocrin, I eat a very healthy diet and he tells me there is nothing I can do with diet for my IR, or high cholesterol, in my case (and it is specific to each person) it is not a dietary problem. He also says it should have been picked up years ago.

I understand Desquins point about the articles on the IR/diabetes fibro link, I've read the articles, but for me there is something linking my list of problems and I just wish I knew what it was! BTW I am also told my symptoms and medical history indicate PCOS, but no test now as I am post menopause.

Love & hugs xxx

in reply to margaretpaloma

Thanks for your reply Hun I do definitely believe there's a link I'm evidence of that link the night sweats are horrible my diet consists of fruit veg lean meat and spinach lots of smoothies and lots of water there is a link I no it that's why I'm so passionate about this illness im joining dots also the low vitamin d was a sign as most not all most people with fibromyalgia are vit d deficient x

margaretpaloma profile image
margaretpaloma in reply to

Not vit d deficient - then again I live in sunny Spain! Cook almost everything from scratch, lots of veg. and salad, a little fruit, too much fructose doesn't agree with me either. I really think much of mine goes back to the (undiagnosed) PCOS. Very well until my thirties when I stopped taking the pill, then improved if not fully recovered on HRT until my fifties.

When I was first told I was insulin resistant I started researching and gradually everything started to fit together. I think the fibro is one of the last pieces, but there are still a couple missing! xx

Al10 profile image
Al10

Kudos to a fellow researcher. 🤔Glad you found answers to help 👍

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

When I was trying to follow a sugar free diet I would buy medjoul dates and have them as an alternative to sugary sweets

2Sleeping profile image
2Sleeping

Dont know if this help it's not sugar cause diabetes its carbohydrates went on diabetic awareness courses I am sorry here about your results hope your diet goes good mine is disgrace but I am working on it I love my sweet things to much lately I feel it gives me a sugar boost for couple mins lol x

in reply to 2Sleeping

Before I got gmfobro I'd have midnight cake cravings for a year o was wakkingbip all ours craving sugar so I changed my whole diet very odd x

2Sleeping profile image
2Sleeping in reply to

This what I've been doing having cake craving it used be fizzy sweets i find hard cos I ent got know energy I am finding things to keep my energy going I had cake tonight and yesterday only small cup cake lmao I need to stop I only used have a treat once a month now it like every day x

Mine was mad sugar cravings every night was odd id wake up and be like omg I need sugar I've knocked it on the head now tho xxxx

Julia10 profile image
Julia10

Hi Lauren

Thanks for this, I’m dealing with exact same situation but they say it’s gallstones but none seen on ultrasound. Blood sugar has spiked over 3 month period but it was me that noticed not GP!!

Still trying to get to the bottom of it & see GP again on wed. Meanwhile can’t eat without feeling sooo poorly & bloated. I will mention fibro insulin resistance thankyou

in reply to Julia10

Good luck don't let the doctor fob u off I get gas bloating as well I believe I have ibs with this fibro so many nasty Symtoms try cutting out sugar for now do u get night sweats ?x

Julia10 profile image
Julia10 in reply to

Yes I sleep nakey wrapped in towels cos I can sleep for longer & sheets just don’t cut it lol

Julia10 profile image
Julia10 in reply to

The only thing I had left to enjoy was my cuppa with 1 sugar but now it’s water 🤨🤭

in reply to Julia10

Exactly the same here it's awful then I have to do school run with heart palpitations lol xx message me when ever u want I hope you get on ok at docs xxxx

bear4ble profile image
bear4ble

Suggest read PubMed; use NCBI as search term, and enter insulin/diabetes etc etc to look for studies relating to the search term.. could be useful.

rosewine profile image
rosewine

Hidden that used to be our great treat at Christmas the beautiful dates with a walnut. The taste is so yummy. I would never have thought the two flavours would mix until I saw them in the shops and was tempted.x

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