Self help : Hi I’m new to the group... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hennalls profile image

Hi I’m new to the group….. looking for some help and advice, I’ve been diagnosed with fibro for a few years, just lately it’s got a lot worse, I’m in pain constantly, could fall asleep standing up, angry all the time, no appetite. The doctor has prescribed codeine phosphate which don’t do much, all the other painkillers they’ve given me don’t work either, waiting for a referral to a specialist…….I’ve read a few things about changing diet, can anyone suggest anything that’s worked for them……xx

14 Replies
Yassytina profile image
YassytinaFMA UK Volunteer

Hello and welcome, I hope your appointment wait is not too long, I have only ever seen my doctor for Fibro , I try and eat healthy but I am prone to treats , I’ve found to try and paste myself through my days is key, if I feel achy and over tired I just ease right up , harder for people that work something I had to stop few years back. Take one day at a time as some differently seem better and if there are days you cannot be so productive go with what your body is telling you . The forum is a good place to read posts and chat with others . What does your doctor say about the lack of appetite? , I do think we get angry sometimes , with me it’s frustration when I realise I cannot do as much , eventually I talk myself round that it will not get me anywhere, but it’s normal to let our feelings out. Xx

Hi. I avoid dairy, wheat, caffeine, alcohol (most of the time 😊) and sulphites. I cook from scratch almost every day and always use lots of fresh vegetables. I also use lean meat, fish, wholegrain rice etc. But if you are cutting out wheat or dairy, you definitely need to speak to a doctor first as they are quite important for people that can tolerate them. However, if you do need to cut them out, there are loads of alternatives in the well known supermarkets these days which makes it much easier. (I get very excited when I see new free from items on the shelves!!) I also got prescribed low dose anti depressants which really help me every day. I hope that helps.

saluhouse profile image
saluhouse in reply to Sally444

Hello Sally. I was interested to read your comment about sulphites. I’ve been doing a few experiments on myself (sort of food challenges) and I am sure I have a real problem with sulphites.

Apparently it can’t be classed as an ‘allergy’ - it’s an intolerance. Trouble is - they are everywhere! Mostly alcohol/packaged foods/baked goods. So it’s difficult to avoid them.

On all the sites I’ve read, it always says that asthma is the main symptom of sulphite sensitivity. But I don’t have asthma. My main symptoms are a flare up in my fibro symptoms, stomach ache and diarrhoea. And brain fog - that always happens when I eat even a small amount of food containing sulphites.

So I urge fellow sufferers to read up on ‘sulphites’. I really do feel they are at the root of my health problems.

Best wishes xxx

Sally444 profile image
Sally444 in reply to saluhouse

Hi. I only found it out when I was having a flare up and somebody in this group mentioned sulphites so I went and checked and sure enough, there were sulphites in my Asti!!! Very disappointing! 😂😂

saluhouse profile image
saluhouse in reply to Sally444

Hi Sally. From my investigations I have discovered there are ‘sulphite free’ wines. It doesn’t matter much to me as I don’t drink alcohol - but it might help others.

I’m now trying to source ‘sulphite free’ goji berries. I know it sounds daft - but I always use them on my porridge and the supermarket ones are giving me real problems. I’ve discovered (by trial and error) that dried fruit and apricots are sulphite laden. So I guess my breakfast goji berries must be the same.

This has all been a revelation to me. I only found out by accident (gourmet eating visitor stayed with me) and I ate very different food to usual. Had huge flare up. Most of it contained sulphites. I have discovered that if I can eliminate them pretty much from my diet - I actually feel almost normal!

Xxx

Sally444 profile image
Sally444 in reply to saluhouse

HI. I find the same. My diet has a huge impact on how I feel. It can take days to get back to normal after I've eaten or drunk the wrong thing. I had a few cocktails at the weekend and I was ok (ish) the day after but today, I'm really struggling. Joint aches, stomach pain, indigestion, blurred vision etc. I feel horrible. Whish is annoying as I love cocktails and only drink alcohol very occasionally as I know it does me no favours. I think a well known high street health food shop (I don't know if I'm allowed to say the name but the fist part of the name is another word for the Netherlands!) sell organic goji berries. I've looked online and can't see any warning of sulphites but as I mentioned, my eyes are really bad today so I can't read the whole packet. I guess they would have to warn in the details though if they did contain it! I find organic stuff is best although can often be expensive.

saluhouse profile image
saluhouse in reply to Sally444

Hello Sally. Thanks for the info on goji berries - I’ll have a look next time I go there. Like you - I do try to buy organic if I can.

Thank you so much for replying. I really did think - am I the only person who reacts so badly to a seemingly bog-standard food additive? Seemingly it is routinely used to stop food spoiling and give a longer shelf life. Also it is used as a disinfectant.

I think trying g to avoid it is going to prove very difficult!

Xxx

Sally444 profile image
Sally444 in reply to saluhouse

Hi. I'm used to avoiding wheat and dairy but the sulphites are new to me as well. I think I'll be checking all the labels but also finding that trial and error will be the main thing! Like you said, its amazing how many things it is in!! Good luck with it. 😊

saluhouse profile image
saluhouse in reply to Sally444

Hello Sally. Please keep in touch - we can swap hints on how to avoid the dodgy stuff!

Xxx

Sally444 profile image
Sally444 in reply to saluhouse

Of course. 😊 If I make an 'error' I'll let you know. 😂😂

saluhouse profile image
saluhouse in reply to Sally444

Hello Sally. Same here. Together I’m sure we can crack this sulphite problem.

Best wishes Dianne xxx

saluhouse profile image
saluhouse in reply to Sally444

Hello Sally. I’ve think I’ve discovered the reason why I react so badly to dental injections, anaesthetics and turmeric. They all contain high levels sulphites. Who knew?

I’ll swap over to PM from now on. Don’t want to hijack this thread. Apologies to Hennalls.

Best wishes to everybody. Xxx

Hello,

I did some research on nutrition and fibro and decided to gradually change things to see if it helped. Over the last year my symptoms were worse and I gained weight so I decided to start by joining WW because I had no concept of nutrition and how much I should be eating. As I adjusted I would try to change some things I was eating like stopping processed foods and being mindful of how I felt after what I ate. I learned I've got a slight allergy to tomatoes and eating greasy foods leaves me really bloated and feeling sick so it shows each person is different and sometimes it's trial and error.

Losing weight also helped a little with my energy. I can go for slightly longer walks.

I've read online things recommended to cut out/reduce are like caffeine and aspartame, which is a sweetener in things like coke zero and MSG which is a flavour enhancer in a lot of takeaways. For me personally I didn't notice a huge difference cutting those out.

Gosh, you sound just like me !

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