Thought this could interest some of you:
medpagetoday.com/Rheumatolo...
"These findings suggest that insufficient physical activity could impose a greater deterioration on physiological reserve and health-related quality of life in SLE patients than controls," and reinforce the need for physical activity recommendations for this patient group, they stated."
Due to my infant onset version of lupus, I'm especially impressed that this study includes children with SLE...
😉🤔🍀 coco
Another interesting find from you.
It is good to see that research is on going with Lupus including mild,inactive and that as you say in children and young people.
It is of course hard to see exercise as the thing to do when feeling totally rubbish but as you and I both know with eds that lack of activity can cause more pain and deterioration of condition.Not sure I'd be up for digging out some Lycra and becoming some aerobic goddess but a specialised Lupus and associated exercise plan would be nice .
At my hospital check up yesterday I was asking for confirmation as to when Ill as to whether to continue taking immunesupressants or not as Gp and consultants had conflicting ideas.The Lupus specialist told me to remember that Lupus is still very rare so few medical professionals would know and that Imuran is a very strong drug so if need antibiotics then to stop taking the Imuran until antibiotics course is finished and infection gone.Good to now have a definite answer but the whole answer did make me stop and think.Knowing and communicating with all on here and a few Lupies I know from clinic I forget how rare?Lupus is and after taking meds for so long it becomes the norm and easy to forget how strong they actually are.That might be just me but did wonder if any other long term Lupus and other autoimmune /connective tissue sufferers get to feel the same? Our daily routine of meds,appointments and compromise becomes so usual to us that we forget how different things are for us or again maybe that's just me,my madness and being off with the unicorns and magical shiny things?
Not really post related but it was reading it made me think a little (well thinking a lot is beyond my blondeness) and wondered if it is more understood,researched and appreciated in other countries.
Thanks again coco for a thought provoking post
Effie xx
Great reaply🌟👏🤗
to your initial point: YES 👍👍👍👍. This was my first thought on reading this: how flipping HARD I've had to work on myself in order to be as physically active as I've been all my life....I tend to live alongside v physically active family, friends & colleagues...because my lupus went unrecognised for decades, I let myself feel I had no good reason not to be v active...but boy oh boy did I surrender to the power of lupus at times...which of course made me feel guilty (that's a convent education for you). As the years passed, good complementary therapists did begin to acknowledge I did have significant health issues which meant I needed to respect my pain and scale down frequency & intensity of physical activity in response to pain & fatigue...their buzz words were: go gently. That reprieve probably kept me from doing something v rash (the whole situation had become so depressing. Now that my daily lupus meds mean I can enjoy a greater level of physical & mental activity than I've enjoyed since my early 20s, I find myself under the care of a Lupus Clinic which urges all patients to do tai chi & generally get as much excercises as poss....and I listen v sympathetically to any lupus patient whose treatment plan isn't yet helping them as much as mine does for the mo
To your next point: YES 👍👍👍👍. One thing I do to help me remember our life of lupus IS unusual, + our conditions relatively rare and hard for anyone to understand or relate to is this: I ask people (medics, health care workers, family, friends, whoever): do you know anyone living with lupus? Invariably the answer is NO. There are no other lupus patients at my GP surgery...my family know no one else with lupus...none of my friends & colleagues know anyone with lupus other than me (so, I feel the luckiest woman: knowing you, my dear forum friends).
One 😝 irony now is that my chronic lupus-related inner ear condition means any physical activity involving fluctuating movements sets off flaring persistent vertigo...so although I gave tai chi a second good go once my lupus meds started to help a lot, Tai chi movements still made me dizzy ☹️🙃
What about cutting & pasting your para into a post here on forum: I think you'd get a grrrreat discussion going...which would help a lot of us
😘🍀😘🍀😘🍀
PS as i understand it, lupus is not well known by your average person anywhere in the world. family & friends in the USA, NZ, france, holland etc have never heard of lupus
Oh coco I have tried until my blondeness is blinding but can't for the life of me manage to cut and paste into a post.
Felt like trying to do a jigsaw with it picture side down.It sounded a good idea but is beyond me.
The latest news re my youngest is that bloods are negative for lupus but rash looks so like lupus that dermatology will see him and do skin biopsy but rheumatologist says there is no way he can have lupus as he is
1 a child
2 male
3 white skinned so from the wrong ethnic background!
Wish he was old enough to see my good rheumy instead of paediatric one.
Re your hero lad's Ped rheumy: am blowing a LARGE 🍓(closest I could find)...but 👍👍👍👍 glad he'll be biopsied! How long before he graduates from paeds?
Ok, buddy: if cut & paste is no go...do a straight post when you've got the umph...am sure this'll make for an interesting thread!
😘🍀😘🍀😘🍀
He's just 13 so a few years yet.
Will do post next couple of days,.
Got my abdo scan tomorrow which is great except it's late afternoon and its a fat free tea tonight(dry rice Crispies aaarrgghh no?!)and nothing to have but water until after scan.
Hi little Effie
Your not off with the unicorns just yet because I agree with you about what has become our 'norm'!. I have so integrated my limitations into everyday life that I think everyone else is living the same way!. It is also easy to forget how serious our medication is , particulually if we've taken it for years with no problems. Info like you gleaned on Fri can pull us up short!. I also forget that lupus is still regarded as rare when awareness of it has improved greatly and More people are being diagnosed with it thanks to Lupus Uk's great work!. I've also met more people saying they have a relative or friend with it.
Ok maybe I too am away with the fairies , one huge thing I've learn't over many years is the need for a sense of humour. !.
Hope your recovery is progressing well. X
Leslie Taylor Brinson
You dig up some really interesting research, Barnclown. Thank you, you are inspiring!
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