Wish Me Luck! Update #5

[xdbx]

(Following on from my previous posts: Wish Me Luck! and Wish Me Luck! Updates #1 to #4)

I’ve been following the Autoimmune Protocol (AIP) lifestyle, including the full elimination diet, for the last six months.

I never set out thinking of AIP as a cure for PMR but purely as a way to support my general health and hopefully limit inflammation as much as possible.

I’m still on Pred and will be until I no longer have PMR symptoms, however long that will be…PMR will decide that!

Since April I’ve tapered my Pred dose in 0.5mg steps, via DSNS, from 9.5mg to 7mg with no ill effects apart from a little tiredness on the first day of each taper. Previously every taper, even DSNS, was fraught with symptoms like pain and fatigue and for longer than just a day.

I’ve learned that sleep is even more essential for those of us with AI conditions than the other four lifestyle factors (diet, exercise, stress management, and support network). I’m very happy with my bedtime routine now and my sleep is back on track - 7.5 to 8hrs. Yay! I think it went out of whack with the unusually hot weather here.

I’ve stuck to the restrictive and very nutrient dense elimination diet and am really pleased that in the last few weeks I’ve successfully re-introduced eggs (both yolks and whites), ghee, grass-fed butter, and almond milk. Today I’m starting fresh legumes and will take a week to test them.

I’m really looking forward to trying coffee. I’ve always been a coffee lover and I do miss it but there’s a little way to go before I can test that. I want to be sure my adrenals are working ok first and give them a fighting chance!

The AIP diet is second nature now. I really enjoy it and I feel so well on it that I’m not in any hurry to reintroduce anything that could potentially increase inflammation and undo all the good work, no matter how tasty or tempting I used to find it. I’m thinking of the usual culprits, especially those pesky fast white carbs as well as alcohol, and sugar.

Weight loss isn't the only benefit by a long way, but the 2 stones I put on with Pred have simply fallen off!

As for exercise, most days I’m doing an moderate strengthening routine designed for people with AI and/or chronic pain, and walking outdoors in nature or indoors on a treadmill if the weather’s bad. I feel so much stronger and a lot less vulnerable. I’m thinking more creatively too and I definitely feel happier.

For stress management I now have a regular meditation practice, morning and evening, and I really look forward to it. I also lie down with my legs up the wall (sometimes on the bed!) which is a wonderful stress reduction technique as it immediately activates the parasympathetic nervous system and the more tranquil functions of the body, all of which helps to combat adrenal fatigue too.

I’ve built a good support network now, obviously including this absolutely wonderful forum! I talk about PMR with people who understand and I don’t stress about trying to explain how I am to people who aren’t interested in understanding. If they don’t get it when I do my best to tell them then it’s not my business what they think. I’ve got bigger fish to fry!

So that’s it for now other than to say how incredibly grateful and glad I am that I found both AIP and this fabulous forum.

Onwards and upwards!

Thank you all SO much

[scats]

I am so pleased this is working for you.

After your first post I looked up the AIP system and knew that it wasn't for me at the time. I had managed to reduce my carb intake drastically and that helped me a lot, water retention is reduced especially. I have become used to avoiding sugar and no longer crave it like I used to. I am feeling much better than I was earlier in the year but I still don't think I need the extra pressure of this regime.

You have my greatest respect that you managed to stick with it. Now you have prooved it is possible perhaps others will follow, good luck to you.

[xdbx in reply to scats]

Thank you.

We're all different and it sounds like you're doing what works for you and having great success with it which is wonderful!

Wishing you well

[scats in reply to xdbx]

Thanks but lets qualify this, success I will allow but it's not great it's slow and only just decernable but it is there so I'll take what I can get!

[xdbx in reply to scats]

OK so slow it may be but reduced water retention, no longer craving sugar and feeling better than earlier in the year are all worth celebrating in my book.

[scats in reply to xdbx]

Mine too.

Got my jeans on today - double celebration!

[xdbx in reply to scats]

Yay! 👏

[MhairiP]

Thank you for your latest update. I really enjoy reading about your progress - well done! I'm glad the AIP programme is going so well for you.

What is the 'moderate strengthening routine' that you mentioned when talking about exercise? Exercise is the one area I've neglected since PMR; I try to have a good walk most days, but feel I should be doing a bit more. I have great intentions to start swimming again, but never quite get round to it!

[xdbx in reply to MhairiP]

Thank you.

It's an online video programme that I do at home called Autoimmune Strong. It focuses on building core strength and balance to promote good posture and alleviate tension and pain as well as building general strength and increasing bone density etc.

I like that I don't have to get to a gym or a pool or mess about in those changing rooms!

[JGBH in reply to xdbx]

Again well done you! You’re amazing.

Is there a specific website for the online exercises you’re doing? It sounds really helpful.

Will have a seriously look at the AIP diet and explore whether it would be suitable for me as it would be wonderful reducing inflammation from RA, Sjögren, etc.

Thanks again for sharing your journey.

[xdbx in reply to JGBH]

Thank you!

Yes it's here: getautoimmunestrong.com

[JGBH in reply to xdbx]

Thank you so much. Will check it straight away and happy work out! x

[xdbx in reply to JGBH]

It’s not free but cheaper and easier to access than joining a gym. Definitely worth it to me anyway. I’ve been doing it for about four months and it’s made such a difference xo

[JGBH in reply to xdbx]

Thanks x

[Rose54]

So pleased things are working out for you

Will look forward to your next update

[fmkkm]

Hi,

I walk a lot and listen to several different podcasts for entertainment. One you might enjoy is called Phoenix Helix. She is pro AIP but I listen because she is a wonderful interviewer and has many guests who just help with various ways we all are dealing with autoimmune illness.

Best

[xdbx in reply to fmkkm]

Hello, yes I follow her too - Eileen Laird. Her reintroduction guide is excellent and she also has some good recipes. I find it so helpful to get all these different perspectives and tips. I feel so lucky that there’s so much available now thanks to these wonderful pioneering people. There didn’t used to be!

[Hidden]

I am so very happy for you in and still in awe of your perseverance and tenacity!!!! keep going... you are an inspiration to all of us!!!!

[xdbx in reply to Hidden]

Thank you! xx

[PMRCanada]

I too enjoy reading your updates as I am intrigued by the AIP lifestyle although I must admit my diet changes that I've implemented have not included complete elimination of any food groups (rather a low carb/sugar/salt diet). Your specific plan of self-care obviously is working for you and your determination is now paying off.

I loved what you said about sleep/rest being most essential for those of us with AU conditions (more so that the other four lifestyle factors (diet, exercise, stress management and support network). I'm learning this as I taper down to 10mgs......yesterday I slept from 4:30pm - 8:30pm). Woke up feeling rested and rejuvenated. I am very fortunate to have retired last year at age 55 as I'm not sure how I would have ever been able to work with PMR. Also grateful to my husband who picks up the slack at home (feeding pets, doing housework, etc) when I have to "crash".

I wish you all the best moving forward, and can't wait to read your next update. You are an inspiration.

[xdbx in reply to PMRCanada]

Thank you.

I know the low/carb/sugar/salt makes a difference. Anything we can do like this helps and we each do what feels right for us.

It's true about sleep and I've been learning about it a lot recently. I think its value is seriously underestimated in our culture to the detriment of our health in general.

I like to think of good health/wellbeing as the roof of a building held up by four pillars - diet, exercise, stress management and support network - and the base that supports the pillars is SLEEP!

I also feel blessed to have a very supportive and understanding husband. Lucky us!

[karools16]

YOU ARE 1 INCREDIBLE LADY. WELL DONE!!

[xdbx in reply to karools16]

Thank you!

[xdbx]

It’s not free but cheaper and easier to access than joining a gym. Definitely worth it to me anyway. I’ve been doing it for about four months and I t’s made such a difference.

[SheffieldJane]

Again! Flabbergasted at your taking the steering wheel of your disease. In my view your are unusually disciplined and motivated. The only way I could achieve your diet is if I moved in with you.

[Rimmy in reply to SheffieldJane]

Ha ha ha !! SJ- let's ALL 'move in' with her...

😲😲😲

[bunnymom in reply to SheffieldJane]

Me too!

[xdbx in reply to SheffieldJane]

Yes OK, come on then...the more the merrier and all that! 🤣

[SheffieldJane in reply to xdbx]

🤗

[kate1978]

How do I find your previous posts please ?

[xdbx in reply to kate1978]

If you type Wish Me Luck! into the Search bar at the top right of this window (where it says Search PMRCGAuk in grey) it will take you to a page with a list of my previous posts. They all start with Wish Me Luck! and then they're numbered Update #1, Update #2 etc

[Telian]

Well done you, such discipline and pleased it is working for you, continued good luck!

[xdbx in reply to Telian]

Thank you

[Pirnilla]

Thank you for sharing your inspiring story!

[xdbx in reply to Pirnilla]

😊