Some things that have helped relieve my symptoms

[MaCoBu]

Hello all,

I wanted to post and let you know about some things which have really helped relieve my Lupus symptoms over the past few months.

For years, I was doing 30 minutes of yoga every morning. But as I got sicker, the pain and exhaustion prevented me getting on the mat. I just couldn’t do it.

In August, I spoke to a Rheumatologist with a large practice in California which specialises in Lupus. (I’m in the UK; he is an old friend.)

He told me to do three things:

1) Get back to daily yoga – even when it’s painful, to do what I can.

2) Break a sweat every day.

3) Do the Whole30 diet with the autoimmune protocol. whole30.com

I really, really didn’t want to do any of those things. But he is an expert and he is someone I trust, so I did.

I got an exercise bike off Gumtree. Got out my yoga mat and I started the Whole30 diet. (The diet is a real pain in the arse. It’s no grains, no dairy, no alcohol, no pulses, no added sugar, and no soy. The Autoimmune protocol also disallows eggs, nuts, seeds and nightshade vegetables.)

It’s been eight weeks since I started daily yoga again. It’s been seven weeks since I started doing two miles on the bike, as fast as I can to get my heart rate up, and I finished 30 days of the diet this week.

I cannot believe how much better I feel. Previously, I was taking daily naps. I had a lot of trouble concentrating on my work. I had near-constant of pain across my back and shoulders.

Now, I haven’t had a nap in weeks. My pain is mostly gone. My brain fog has mostly dissipated. It’s recommended to stay on the diet programme for 60 days for autoimmune illnesses, so that’s what I plan to do.

I know I am fortunate. The only medicine I take is hydroxychloroquine, so my Lupus is not terribly advanced. I know everyone has a different path, and I am not saying these ideas are for everyone. I just wanted to let you know, in case my doctor friend’s good advice could be helpful to some of you.

[ProbablyMeningitis]

Thanks MaCoBu!!!

[EOLHPC]

👍👍👍👍👏👏👏👏🌟🌟🌟🌟🌟GREAT NEWS...every detail can be inspiring useful to some of us here!

wishing you every best wish 🍀🍀🍀🍀, Coco

[MaCoBu in reply to EOLHPC]

Thank you Coco -- I hope so!

[Lupiknits]

I'm really glad this has helped you.

[Ingerfoot]

I’m gonna try it 👍

[Ingerfoot]

Could you put some more of what you can eat and can’t on I don’t want to buy the book thanks

[MaCoBu in reply to Ingerfoot]

Hello Ingerfoot,

This is an autoimmune shopping list on the Whole30 website here, which shows all the things you can have: whole30.com/downloads/whole...

There is lots more information about the diet on that website. And there are lots of sites with recipes for Whole30 and for other autoimmune diets. If you google whole30 and a couple of ingredients, you will likely find some recipes.

I found one of the books for £2 on Amazon, secondhand. The books are a help, but you could probably do without one. Also, there are lots of very supportive facebook groups.

[overnighthearingloss]

I agree with you totally re the dietary stuff. It seems to bring great rewards if you can stick to it.

Grains contain phytic acid? Which inhibits the absorption of nutrients from other sources. Many legumes have this as well. So even if you don't get an immediate reaction they may stop you absorbing nutrients elsewhere. And you need a well nourished body to prevent big inflammatory flares.

Grains make up a huge proportion, of most western diets, especially when you start reading ingredient lists. So reactions from grain based foods is very likely if they are your Achilles heel.

Dairy is often inflammatory.

I haven't checked out the link personally. I have found I can eat many of the suspect foods now in moderation. But if I am ill it's better to follow it more closely.

[MaCoBu in reply to overnighthearingloss]

Yes, at the end of the 60 days, I will try reintroductions and, hopefully, figure out a diet that works me. (And, if I'm lucky it will include gin.

[overnighthearingloss in reply to MaCoBu]

You may be ok. I don't think there is any wheat in it. And if you have it with lemon it will be alkalinising. 😀

[MaCoBu in reply to overnighthearingloss]

I like the way you're thinking!

[overnighthearingloss in reply to MaCoBu]

I can't join you though. Dodgy liver....

[Foggyme]

Hi MaCoBu. Thanks very much for posting this...very heartening...your success has inspired me to try it.

Worryingly, I asked my rheumatologist if there any benefits to be had from following an autoimmune diet...he replied that diet made no difference whatsoever! I didn't believe him then and I don't now.

So thank you for sharing your experience and the knowledge of your 'old rheumatologist friend'. Wish mine was more like him 😉😀.

[MaCoBu in reply to Foggyme]

Yes, my own rheumatologist didn't think much of the idea. My GP was interested but not terribly encouraging.

But my friend in the US has spent his career looking at more holistic approaches to medicine. And he has ended up at the top of his field in Lupus treatment. (CNN calls him when they need an expert; he has just become a committee chair on the board of the American College of Rheumatologists.) So I trust his recommendations completely.

[Foggyme in reply to MaCoBu]

Yep... more and more research appearing about the importance of diet, gut health etc...and wondering how long it will take this to reach front line medical services and be incorporated into medical practice.

I sometimes wonder if 'evidence based practice' is killing us...or at least those of us who can't tick all the 'right' boxes when it comes to test results. Or those that do, and still have multiple symptoms. And at what stage doctors stopped looking at symptoms and patients 😉.

Really pleased that this is working for you. Hope it continues. Hope even more that I'll be able to follow in your (pain free) footsteps 😉😀.

[slaithwaite]

Thanks for posting - I'm going to check out that diet

[Shorthouse]

Going back to basics has got to help ?let food be thy healer

[overnighthearingloss]

Just seen this. You might find it interesting

nutritionfacts.org/video/fi...

[MaCoBu in reply to overnighthearingloss]

Yes, that is interesting. Thank you! I take a turmeric capsule every morning -- have done since before my diagnosis. So far, my kidneys are OK.

Perhaps I will increase it.