Me

[Pippins2]

For Pam x

[Pam34]

Haha - that’s me! Why is it we need to eat when we have an attack? It does help my legs but not my figure 😱

The sun is shining today, hopefully that will help your spirits. The peanut butter got me to sleep xxxx

[LotteM]

So awfully recognizable. I felt stupid when doing it, but somehow it did help. Whether it was the food itself or the distraction, I don’t have a clue. Or simply a response to feeling very low in energy.

And now that I am sleeping better I find it hard to lose the extra kilos again 😬.

[Hidden]

I do the same thing, I assume its a comfort thing. I can easily eat my whole daily calorie intake on a bad night.

[LotteM in reply to Hidden]

Hey Raffs, how are you doing? I wonder, as you benefitted greatly from going vegan last year. Do the benefits still continue?

[Hidden in reply to LotteM]

I would love to say yes but acting like a fool I decided to 'treat' myself by eating normally over Christmas. The result hasn't been good and I am struggling to get my diet back on track.

I have a lot of nausea and difficulty with appetite so am eating meat but avoiding, (mostly except chocolate), dairy and gluten.

You would think since I did have such a good response it would be easy to go back to the vegan diet but when you add in the gluten free too it is very difficult and I know that it has to be for the long haul - I've had to give up so much I am reluctant to give up more stupid I know but that's men for you

[rls_optimist in reply to Hidden]

Hi, Raffs, why gluten-free? I would question that. Gluten seems to have become the devil incarnate. But the research seems to be pointing in the other direction: that very few people (other than those with diagnosed celiac disease) are actually gluten-sensitive. I would recommend looking into it further, and perhaps trying a vegan diet (which has worked well for you in the past) but not gluten free. Might be worth experimenting. Good luck.

[Hidden in reply to rls_optimist]

I was advised to by a specialist in ME, I went from having every joint in my body aching to them being nearly normal in a few days.

If I mistakenly eat gluten I feel sick and restless. The other night I was squirming and complaining to the good lady wife about my woes and she was trying to work out what had happened. I was adamant I hadn't eaten any gluten until she produced the contents of the OAT granola I bought and found it was full of wheat. To me that rules out the placebo effect right there.

I have bowl problems and have been tested for celiac and I am definitely not allergic as such but definitely makes my body react wrong. I think that our bodies are not really meant for large amounts, (any) of gluten and dairy (both know to cause inflammation) or meat even.

arthritis.org/living-with-a...

I am planning to return to the vegan diet only building up the courage I know before I would even try that gluten isn't an option as I have regularly tried to add it back in or say "F**k it all - my life is miserable I am having a big burger and a pack of Hob Knobs and f**k the consequences" - which normally precedes a rotten period of nausea, feeling over full (even though it could be 10 hours since I ate and feel hungry I still have a 'blocked/stuffed feeling in my chest) and restlessness.

Believe me, if I could eat it I would!

Thanks for the advice though.

[rls_optimist in reply to Hidden]

Well, there's no arguing with all that experience! Gluten is certainly off the table for you (literally). I'm sorry to hear of the dietary restrictions you need to live with, but glad to hear that you have carefully figured out what works for you.

By the way, you are a lucky man to have that good lady wife who helps identify the hidden culprits for you. I also am blessed with a loving, patient and understanding wife. It makes a huge difference to have that support.

Thanks for sharing your story. I always enjoy your postings.

[Hidden in reply to rls_optimist]

I am blessed with my wife, just a pity I didn't find out about her opposition to sex before we married.

Yeah the gluten is a b1tch, it is in so many things that you do have to be very vigilant and even then the f***ers still slip it by me. It is very hard to avoid and it really limits your choice.

Lent is coming and I am going back on my Vegan diet - hopefully in a couple of weeks I will be posting about the efficacy of my diet.

[LotteM in reply to Hidden]

So do I raffs!

One question, how do you get enough iron? Last year when I went vegan and gluten-low I ended up anemic. Normally my iron levels are - and always have been - low, but last summer I was truly anemic according to the standard. I suspected after a while when I lost bunches of hair. After a blood test I put myself back on the iron once every other day and added in the patches based on Joolsg’s experience. Do you do somthing similar? Or is your iron well above average?

[Hidden in reply to LotteM]

I have had low iron in the past which resulted in oral iron which had things back to normal in a couple of weeks.

I take Gentle Iron every evening, (for RLS) which I figure covers me. I had been taking a multivitamin some years ago that had iron in it but changed to gentle Iron only after reading about it on here. With Iron from the Dr I had (sorry for this) sticky dark stools which told me I had too much iron so when I stopped it by poo returned to normal, (what's normal for a poo you say?!"!) so I know when taking the gentle iron if the poo thing happens to stop yet it has never happened with it.

I also add in a lot of leafy greens - you can hide an awful lot of spinach in a curry and cabbage in a soup!

[Parminter]

Bananas and milk. And melon.

And dopamine agonists cause compulsive eating.

And pregabalin and gabapentin make you expand.

Sugar rewards opioid centres in the brain.

Opioids make you crave sugar.

Sugar is a true addiction.

Eating in the middle of the night reduces abject misery to tolerable levels -

- for a while, until you take another pill which corrupts your appetite.

Keep nothing in the fridge that is not good for you.

That is the only way I survive.

If friends bring gifts of sweet things I give them away at the first opportunity.

Is there no end to the wondrous enchantments of this condition?

[Hidden in reply to Parminter]

That's what I love about this site - you can always learn more:

ncbi.nlm.nih.gov/pmc/articl...

Oh the blessings and joys of RLS.

[Parminter in reply to Hidden]

Yea truly, we are among the blessed of the earth, oh joy.

Thank you for that link, it is completely fascinating. There are some scary bits, like the mention of hyperglycemia and the fact that newborns are stuffed with sugar to reduce pain, inter alia.

Go back and peruse all the other studies mentioned in the right-hand column. They too are fascinating - and disturbing.

All patients on DAs, alpha2 delta ligands and opioids should clearly receive informed and detailed counselling on diet - but do we, ever? Of course not, don't be silly.

Thanks, Raffs.

[Hidden]

Am i the only one who doesnt stuff her face in the night when up pacing..? And i am up pacing ALOT. I do drown myself drinking tea every time i get up. But i do TRY to eat healthy, low fat foods, grill when i can, never fry, or only then the recipe says so. And i DO have a sweet tooth, or whats left of them in my mouth. And sometimes crave something sweet. i was until recently baking muffins and biscuits, using honey instead of refined sugar and i use whole meal flour. Every little bit helps.! Oh and do you know sleep deprivation can make you put weight on. now there's an excuse. !