Why I toot the benefits of meditation, exercise a... - LUPUS UK

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Why I toot the benefits of meditation, exercise and diet and why I think it might help to reduce autoimmune inflammation

Roarah profile image
10 Replies

Those of you who know me here know I often, probably too often, toot the benefits of my anxiety therapy, daily walks, high fiber and mindfulness as having not only improved my quality of life but coorolated with all my previously positive blood serum and ANA disappearing.

It has long been seen that ptsd and high stress often are precursors to autoimmune disease but it was not understood how or why for anxiety in the short term is seen as an anti inflammatory response. Well part of my team of specialists( my rhuemie) just published a review of his study that shows how high stress might be linked to increased il6 and inflammation. Here is a simple article about his study's results. newatlas.com/science/stress...

Full study is here, cell.com/cell/fulltext/S009...

Another of my specialists, Dr Lee, (hematology ) had a paper published in the lancet this week as the senior researcher on a covid discovery as well.

thelancet.com/journals/lanh...

I am so lucky to have great doctors who provide both great treatment and reasearch!

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Roarah profile image
Roarah
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10 Replies
KayHimm profile image
KayHimm

Great information. It is so positive that researchers are better able to document the effects of lowered anxiety and fitness on health, particularly inflammation. Although you should continue to meditate, eat properly and exercise, I question whether you can deduce that the disappearance of your positive ANA and anti-phospholipid antibodies are a reflection of decreased inflammation. The ANA is known to be episodic as are the aPL. I think the only reliable measure would be one of lupus disease activity scales.

I once read a study done on Puerto Rican women with lupus. The most significant association regarding degree of kidney disease was with use of sunscreen. We would need this type of study using reliable measures of anxiety and disease activity.

In no way do I mean to doubt your approaches but I do think you are not a good case study.

😘k

Roarah profile image
Roarah in reply toKayHimm

Oh no that is why I said coorolated to not caused by. I have pharma( statins, warfarin and antiplatelets) to account for much of this too. I do believe my life style changed my quality of life though. My sedate dropped aswell as my crp in a years time. My crp went from 5 to 1 and my sed rate went from 13 to 2

To be clear, Dr wang is researching how il6 blockers, not life style changes, could be useful for many inflammation diseases.

KayHimm profile image
KayHimm in reply toRoarah

The quality of life aspect is huge! Whether it brings down the anti-DNA antibodies or not, it is better for all of us to feel calmer.

😍k

Horsewhisper profile image
Horsewhisper

Very interesting reads, thanks for posting!

Bobbydoodle profile image
Bobbydoodle

Hi thank you for sharing. I’m quite new on this forum so haven’t read any of your other posts. Im 48 and I have APS (diagnosed 2018 after a TIA had never been ill before) and Lupus SLE diagnosed this year.

I’d be interested to hear more specifically what you do to help reduce your symptoms in your daily life if you wouldn’t mind sharing?

Thank you 😊

Roarah profile image
Roarah in reply toBobbydoodle

My story is some what similar but a bit reverse. I was diagnosed when I was 27 with SLE after a gp found protien in my urine and positive serum clues. I felt fine but was put on a steroid for the better part of a year. Kidney issues resolved and I remained followed for years by rheumatology but all my serum stayed negative for 20 years. I did have three miscarages after my first child but I was in my late 30s and early 40s so they did not test for APS.

Fast forward to a year and a half ago I had a case of shingles and that same week had a massive stroke at 49 while on vacation in orlando, fl. I was lucky to get immediate care and a dose of Tpa so damage was somewhat maintained. But I also had another large stroke while in the icu even on a therapeutic dose of heparin and days after the TPA I also showed some kidney issues and my ANA was positive again and beta2glycoprotien were above 150 (severely high.)

Three months later they went down to 35 ( borderline/low but still positive ) so diagnosed with APS.

I am on warfarin, 2 to 3 inr, plus originally plavix now on aspirin instead for bruising issues and aspirin with warfarin lowers my bleeding list. I also take 40 mg lipator. I was going to start HCQ last December but upon serum testing I returned to negative in all previously positive tests.

In january 2019 when i was still highly positive for aps and lupus serum I was having high anxiety after my strokes and started therapy for ptsd. Antianxiety and antidepressants for the most part pose extra bleeding risks so I opted for ACT, a form of CBT, and EMDR, eye movement desensitization reprossing, and mindful based therapy. And I still see my therapist weekly. Part of my therapy is to walk at least 30 minutes every day, consistant sleep hours, and to meditate regularily to reduce my stress levels.

Early last year a rheumatologist, Martin Kriegel, in my treating hospital was making headlines in his research linking gut bacteria and lupus and Aps. He relocated to Switzerland so I do not see him. High resistance starch in mice models was showing some promise so I decided to add 40 grams of fiber to my daily diet with the consent of my hematologist so it meant more frequent inr testing in the beginning.

So after a year of therapy, meditation, daily walking, good sleep hygiene and high fiber inaddition to drugs known to aid in lowering cpr and inflammation I seem to be in a remission again. I did so many different things between my positive serum and now, and I have not been retested yet in 5 months so who knows what one thing worked or if the results are just transient. I have a full lupus panel, d dimer, cbt, metabolic, esr and cpr blood test at the end of this month so I will update in a few weeks.

Regardless of remission or not I feel great and enjoy life more than ever even during a pandemic. I no longer focus solely on my health like I did after the strokes. I am calmer than ever and for the first time in my life I no longer have daily butterflies in my stomach after a live long history of Generalized anxiety and later a ptsd diagnosis.

I truly believe my life long anxiety caused my health crisis and hopefully treating that can help keep me in a long term remission but I will continue on the anticoagulation and statin treatments and if my disease progresses I will be put on HCQ or any other DMARDS because lifestyle changes can only make slight and slow significant changes along with quality of life improvement where as pharma had proven efficiency and is a faster problem solver.

Good luck on your journey and I hope you stay clot and symptom free.

Xo

EOLHPC profile image
EOLHPC

🤩👏👏👏👏👏Many thanks! Am sharing these articles with all my AID & PID buddies! Am DELIGHTED the science on this is becoming better understood

Even here in the UK all my consultants & care professionals agree there’s V Little doubt I coulda survived my 66 years of DES Syndrome + lupus + antibody deficiency disease + hEDS as relatively ok as I have without practicing self help in the form of diet, excercise & meditation from my earliest years.

What’s more, 5 months of daily inutero physical injury & distress wrought on me by DES inevitablly imbued me with an extra degree of predisposition to anxiety, and then the infant onset lupus etc etc... + my parents were mostly at war as I grew up...the whole package set me up to be diagnosed with severe anxiety/insecurity in the 1960s by univ of Pennsylvania psych Dept by 13 (my family covered this up & I did not receive the prescribed professional care...but I eventually found the long report in my father’s files...maybe I was better off without that type of care, way back then... )

But I think all these lifestyle techniques are the main things that kept me functional enough to get through my studies & career etc despite all the immune dysfunction & connective tissue disorder illness going mainly inadequately understood + WAY WAY under medicated

Even at 66 and finally more fully + convincingly diagnosed & adequately medicated, I keep all this up....even though I’m now in AID/CTD/PID-related Intestinal Failure unable to take nutrition by mouth, there are still aspects of dietary practice I stick to: good hydration etc. One things for sure: all those decades of self-help have given me an invaluable rapport with my own bod + a depth of understanding re what it’s trying to tell me that have helped me A LOT to help my medics give me the care I am now benefitting hugely from

Hoping you’ll keep sharing this solid quality current science with us roarah....am so glad you’re here

❤️🍀❤️🍀❤️ Coco

rarediseases.info.nih.gov/d...

Roarah profile image
Roarah in reply toEOLHPC

Thanks and you are one of my heroes and a great role model to many! Xo

EOLHPC profile image
EOLHPC in reply toRoarah

🤗 feelings mutual ❣️🤝✊✌️🤞

Princerogers777 profile image
Princerogers777

Thank you

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