Struggling with daily life due to Chronic Pain

frosty

I had muscle and joint pain for years,I was told it was my Graves' disease and because I had my thyroid gland removed.There weres days I couldn't function and painkillers didn't touch it.I noticed that when I had any bread my eyes would water........very strange,then I found out it could be a sign of wheat allergy.So I cut it out and my eyes stopped watering and my muscle and joint pain disappeared,also the acid reflux improved.I tried eating wheat again and all my symptoms reappeared.Three times I have tried reintroducing wheat and the same thing happens......I have now stopped eating it and won't have it ever again.

Have your vitamin D levels checked aswell as low levels can cause muscle pains and low mood.

[Deleted User]

frosty wrote: »

I had muscle and joint pain for years,I was told it was my Graves' disease and because I had my thyroid gland removed.There weres days I couldn't function and painkillers didn't touch it.I noticed that when I had any bread my eyes would water........very strange,then I found out it could be a sign of wheat allergy.So I cut it out and my eyes stopped watering and my muscle and joint pain disappeared,also the acid reflux improved.I tried eating wheat again and all my symptoms reappeared.Three times I have tried reintroducing wheat and the same thing happens......I have now stopped eating it and won't have it ever again.

Id be interested in what you eat instead? It must be difficult to find alternatives that satisfy the appetite?

Mrs_Ryan

I'm interested to see about people cutting out virtually every food and claiming they're totally cured- I must say I'm sceptical about all this. Since being diagnosed with fibromyalgia I've cut out caffeine, alcohol and aspartame and I'm finding that hard enough however it does help. If I cut out all the things some people have I would be living on one lettuce leaf and a cup of water a day I cannot cut out carbs as last time I did it made me incredibly poorly and the doctor told me not to do it again. It's each to their own- it won't work for everyone.

maisie_cat

I would suggest seeing the locum, they may have seen something elsewhere and have suggestions (and a more open mind).
My husband was diagnosed with a congenital condition aged 46 after years of tests and by a locum who ordered a genetic test because he'd seen the results from other tests elsewhere. There is only one other person at the practice with the same condition.

KxMx

I would recommend making use of your Hospitals complaint service.

Specifically about the Rhematology farce and lack of follow up from Pain Management.

I'm afraid waits of months for appointments are all too common and should almost be expected these days.

I know from bitter experience of having chronic, undiagnosed illness, the only alternative to crawling under the duvet and never coming from out is to push, nag, chase and complain in the hopes that one day it actually leads somewhere.

lessonlearned

Mrs_Ryan wrote: »

I'm interested to see about people cutting out virtually every food and claiming they're totally cured- I must say I'm sceptical about all this. Since being diagnosed with fibromyalgia I've cut out caffeine, alcohol and aspartame and I'm finding that hard enough however it does help. If I cut out all the things some people have I would be living on one lettuce leaf and a cup of water a day I cannot cut out carbs as last time I did it made me incredibly poorly and the doctor told me not to do it again. It's each to their own- it won't work for everyone.

Mrs Ryan......you dont need to cut out ALL carbs. That would indeed make you ill. If you eat a diet rich In fruit and veg then you will get all the carbs you need for health. You don't need bread, cakes, biscuits, pasta, pizzas ........

Cutting out grains and starchy carbs is not difficult - it just needs a bit of a rethink, and you will need to cook from scratch and ditch ready meals and most convenience foods.

A few examples......instead of wheat based spaghetti I have courgetti (spiralised courgettes). ZOodles instead of wheat based noodles (zoodles comes from the American term "zuchini" - again what we Brits call courgettes)

Cauliflower "rice". Mashed cauli or celeriac instead of white potato mash. Parsnip mash, carrot mash......

I am ok with quinoa so I use that instead of cous cous.

There are lots of paleo bloggers, lots of ideas and recipes.

As I said earlier, it does no harm to try. If it doesn't work then nothing is lost.

I have been eating paleo for around a year, no more IBS or GERD, fibromyalgia gone, no more migraines. No longer type 2 diabetic, blood sugars have been normal for at least 6 months. I've never felt better.

i found the best thing was to keep a food diary and monitor which foods seem to cause symptoms.

Like Frosty I try it 3 times, if I get the same reaction 3 times then I know I have got a problem.

I now find I can eat a bit of bread - good quality home made or artisan bread - just not every day. I can manage the occasional bit of pizza but not on a regular basis. I still can't manage white rice.

It's trial and error but if you keep a food diary you will soon spot the patterns and learn which trigger foods to avoid.

lessonlearned

Deleted_User wrote: »

Id be interested in what you eat instead? It must be difficult to find alternatives that satisfy the appetite?

See my last post. And google paleo or FODMAP. There's loads of information out there.

One thing I did learn is that if I eat a diet based on plants, meat, fish, eggs and just a little dairy then I feel perfectly satiated. If I eat a carb heavy diet then not only do I feel ill I am constantly ravenous.

Protein keeps you feeling fuller for longer.

Pop_Up_Pirate

Mrs_Ryan wrote: »

I'm interested to see about people cutting out virtually every food and claiming they're totally cured- I must say I'm sceptical about all this. Since being diagnosed with fibromyalgia I've cut out caffeine, alcohol and aspartame and I'm finding that hard enough however it does help. If I cut out all the things some people have I would be living on one lettuce leaf and a cup of water a day I cannot cut out carbs as last time I did it made me incredibly poorly and the doctor told me not to do it again. It's each to their own- it won't work for everyone.

I am completely pain free after altering my diet.
Years and years I went to the docs who only cared about easing symptoms and prescribed meds left, right and centre.
But, all the meds were actually making the problem worse, by further damaging my digestive system.

I could barely walk, was in constant pain on strong painkillers, thought about ending it all many times and then hubby was told he had RA. He was worse than me, crippled in 2 months with "No Cure" according to the doctors. I thought it was time to take matters into my own hands and stop with the doctors.

I changed mine and my husbands diet drastically. Did it mean I couldn't eat some of the things I loved?
Yes it did. But being pain free, walking unaided and alive was far more important because the way things were, I was heading towards more difficulties later in life along with others such as alzheimers.

Cut out for 3 months:
All refined carbs (bread, pasta, cakes, pastries etc)
Sugar
Grains
Dairy (except butter)
Plants from the nightshade family
No legumes
All processed foods, including tinned food
All sweeteners
All cooking oils (sunflower, vegetable etc)
All soy
Anything with any additives
No fruit juice

During the 3 months, build your system back up with masses of vegetables and some fruit, organic as best you can and organic meat and wild caught fish and lots of natural FAT. Fat is very important, and most of us do not get enough for our bodies to work correctly.
Take very good quality probiotics, omega 3, vitamin D3 (with K2), magnesium and zinc. Once you're on the new diet and established, you can stop the supplements if they are too expensive.

Doing this does seem hard, but once you get going it becomes easier once you find a few recipes you like and find meals your enjoy.
After a couple of weeks, all sugar cravings and carb cravings will go away. The better diet and extra fat will make you feel full all the time and you won;t feel the need to snack or miss meals.

If you want to reintroduce foods one at a time and monitor your reactions, no problem. We have chosen not to.

It does really work. I am so annoyed with the doctors I have met because not one of them told me to cut all these foods out of my diet but having done so, I am now in remission with virtually no pain, no brain fog, I can walk, I've lost weight without trying, I feel happier than I have for over 20 years and I wish I;d done it sooner.

Pop_Up_Pirate

Deleted_User wrote: »

Id be interested in what you eat instead? It must be difficult to find alternatives that satisfy the appetite?

When you adjust the diet to feed your body the nutrients it actually needs and can use, the appetite takes care of itself, hungriness and cravings go away.

Here's what I will eat today
B- Bacon fried in lard, eggs fried in lard, spinach and mushrooms in butter

L- HM Chicken soup made with bones of an organic chicken, celery, carrotts, onions, leeks, parsley. Butter and olive oil also in the soup.

D- Roasted then fried belly pork, spring greens, garlic fried sweet potato,
Dessert - a few cherries and HM Chocolate Mousse (no sugar, no dairy)

In the afternoon, we have a green smoothie made with kale, spinach, banana, blueberries, carrot, parsley, corriander, ginger, tumeric, and anything else thats not too high in carbs.

We are finding now that we don't need to eat as much as above as we are fairly full feeling all the time, so will arrange the diet into fewer meals.
I am also finding that I no longer want the dessert ( we don;t have it often) and that's surprising to me as I love chocolate.

Mrs_Ryan

Pop_Up_Pirate wrote: »

I am completely pain free after altering my diet.
Years and years I went to the docs who only cared about easing symptoms and prescribed meds left, right and centre.
But, all the meds were actually making the problem worse, by further damaging my digestive system.

I could barely walk, was in constant pain on strong painkillers, thought about ending it all many times and then hubby was told he had RA. He was worse than me, crippled in 2 months with "No Cure" according to the doctors. I thought it was time to take matters into my own hands and stop with the doctors.

I changed mine and my husbands diet drastically. Did it mean I couldn't eat some of the things I loved?
Yes it did. But being pain free, walking unaided and alive was far more important because the way things were, I was heading towards more difficulties later in life along with others such as alzheimers.

Cut out for 3 months:
All refined carbs (bread, pasta, cakes, pastries etc)
Sugar
Grains
Dairy (except butter)
Plants from the nightshade family
No legumes
All processed foods, including tinned food
All sweeteners
All cooking oils (sunflower, vegetable etc)
All soy
Anything with any additives
No fruit juice

During the 3 months, build your system back up with masses of vegetables and some fruit, organic as best you can and organic meat and wild caught fish and lots of natural FAT. Fat is very important, and most of us do not get enough for our bodies to work correctly.
Take very good quality probiotics, omega 3, vitamin D3 (with K2), magnesium and zinc. Once you're on the new diet and established, you can stop the supplements if they are too expensive.

Doing this does seem hard, but once you get going it becomes easier once you find a few recipes you like and find meals your enjoy.
After a couple of weeks, all sugar cravings and carb cravings will go away. The better diet and extra fat will make you feel full all the time and you won;t feel the need to snack or miss meals.

If you want to reintroduce foods one at a time and monitor your reactions, no problem. We have chosen not to.

It does really work. I am so annoyed with the doctors I have met because not one of them told me to cut all these foods out of my diet but having done so, I am now in remission with virtually no pain, no brain fog, I can walk, I've lost weight without trying, I feel happier than I have for over 20 years and I wish I;d done it sooner.

It would be nice if I could do that but unfortunately I can't. We're on a very limited budget and can't afford organic veg,meat or wild caught fish. I don't eat bread, cakes or pastries anyway. I don't eat a lot of sugar or drink any fruit juice. I cannot cook from scratch so I couldn't give up processed foods. It wasn't just cravings I had for carbs- I was really ill. Like I say what works for some doesn't work for others- I don't take any meds for my pain, I just get on with it- most of my pain comes from my spinal tumours, not my fibro and no diet in the world is going to cure em.