Mindfulness for Sjogrens pain - The Australian Sj...

The Australian Sjögren's Syndrome Association

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Mindfulness for Sjogrens pain

DBillings profile image
5 Replies

Has anyone tried a Mindfulness workshop for Sjogrens pain? I am in week 3 of an 8 week course in Auckland NZ and believe it will be helpful for my neuropathy and anxiety. Anyone else gone down that path?

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DBillings profile image
DBillings
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5 Replies
weathervane profile image
weathervane

A physio i seen highly recommended mindfulness as relaxation can help to reduce the inflammation. I hope it continues to work for you xx

Megansheart profile image
Megansheart

Hello DBillings!

A Rheumatologist I first saw after I became ill in 2007 was a significant meditation guru. The feeling I got from him was that he believed it was the only thing that would help people with these undiagnosable and undifferentiated conditions. He didn't actually diagnose me with S.S., as to be fair, I was seronegative for several years. At the time it was felt I had Fibromyalgia.

One wonderful thing I gained from that Rheumatologist was he did seminars and one day he showed us an image of two cars.....one was a Toyota Corolla and one like an Aston Martin. He said a Toyota Corolla just goes and goes and goes and needs minimal maintenance but an Aston Martin needs constant vigilance with its care. He likened us to the Aston Martin as we cannot go long without needing a tune-up. That has stayed with me and it correlates with a lecture I recently tuned into online by Dr Daniel Clauw who said that a certain percentage of the population are born with heightened pain receptors and have pain and other complaints from childhood and throughout life.

However I digress and have not addressed your question at all! Interesting nonetheless.

DBillings profile image
DBillings in reply to Megansheart

Yes I like the positive take on it. I am having my amalgam fillings replaced as a blood test showed high mercury levels. Another interesting possibility 😋

I agree with Meganheart's guru's perspective to a great extent - who wouldn't if compared to an Aston Martin?! But I'm very resistant to the idea of Fibromyalgia and overresponsive pain receptors. In my case I trust my pain receptors to the enth degree - they have saved my life on a couple of occasions and are never to be disregarded.

My vascular doctor who specialises in Raynauds & Scleroderma - explained to me that having high systemic inflammation means our bodies and minds are battling inflammation 24/7 - hence awful fatigue. He then said rather meaningfully, that being so fatigued heightens our sensitivity to pain. I refuted this strongly because, if I report pain, I want it taken seriously always. I just think it's far too easy to land chronic pain labels on us.

I gave birth the natural way to three sons, two of whom were born the wrong way round and very large - with only the odd sup of entenox. And I'm an Autoimmune babe - my pain threshold is the same as it always has been since accidental trauma during infancy. I'm an Aston Martin who has learned to trust my rusty undercarriage to convey correctly to me and others when it's in trouble!

jemozne profile image
jemozne

I read the book of an australian medical doctor who was himself diagnosed with Multiple sclerosis (MS), called `Overcoming multiple sclerosis`. He also has a website: overcomingms.org . There he emphasizes the importance of improving the life of patients with MS through a combination of diet (vegan + fish), meditation and exercise. He has been gathering data of the people who have followed his recommendations, and they seem promising. The book is of course adressed to people with MS, but MS is also an autoimmune chronic inflammatory condition, just like Sjögren´s Syndrome. I have not tried meditation or mindfulness, but would like to give it a try. Every little thing that can help us a bit and has no side-effects matters.

Please keep us updated on your results.

Cheers,

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