Sport and Sjögrens/ advice, tips please
Posted , 6 users are following.
Is there anyone sporty out there? I used to do triathlon etc and wanted to get back to it. Unfortunately its been one thing after another and now I've added Sjogrens to the list. My main problems are exhaustion ( fine one week - almost horizontal the next) I have difficulty working out when I will be exhausted, muscle pain and lack of recovery. I'm loosing fitness, putting on weight, get demoralised and then the throat, eyes etc get more of a nuisance. Im waiting for hand and feet scans to see if there is further arthritis. Bloods are all good except ANA.
Any help would be much aprectiated.
0 likes, 23 replies
dryguy gonnabewell
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For me not possible anymore due to sicca if my breathing rate goes up at all or if I breathe through my mouth I dry totally lungs dry and throat dries so I have to stop. Only thing I can do is golf (just about) if I walk slowly and don't get breathless I was a tennis pro and top rower and also loved miuntain biking now nothing
gonnabewell dryguy
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zeet gonnabewell
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zeet gonnabewell
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My main problem is also Sjögren's with a spoonful of bladder cancer and CAD stirred into the mix. However, I force myself to go to the gym every alternate day for a one hour high intensity workout. Most times this resets my system regardless of having an ANA of 1:5120 and an elevated creatinine level. I simply get on with it knowing full well that I will have this condition for life. What I have discovered is when I can feel a flare up is on its way, I take an antidepressant for 28 days to attempt to break the cycle. I Most times it works. In addition I go to the Lupus Clinic in London Bridge Hospital for regular check-ups. I hope this gives you some solace.
gonnabewell zeet
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Oh I'm very interested to hear more about your work outs ....My partner thinks I should do intense one day and then two days off, repeat. I feel I should do a bit every day that I feel well and some thing hard when I feel like it since it seems to be about 2 weeks till I'm bouncy again. Any thoughts?
Ps no solace at all! I think I was shocked by the responses to my original post . I think subconsciosly I was hoping for a "3 bananas, an avacardo and some esoteric herb" and I will be fine type of messages. Not the "you might get worse" ......although having said that now Ive slept on it I am trying to think of ways to alleviate symptoms in a fairly positive way.
zeet gonnabewell
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I have found my regime of every alternate day was the ideal solution for me. But if I'm really feeling flat I will slacken the pace of my workout.
gonnabewell zeet
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I guess it will take a while to figure it all out. I see from the news that one of the Williams sisters ( as in tennis stars ) Venus I think, Has Sjogrens. I wonder how she keeps that fit ? Or does she not have it ?- one of those urban myths you can't correct....Personally I think retiring to Spain sooner rather than later is the best option. So far, I'm much improved when I'm there. Hmmm maybe a business oportunity there....
lynn15111 gonnabewell
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I've had issues with drier eyes to the point of infection, when I'd eat spicey meat, hotdog, sausage, pizza, (real bummer) and especially sweets. Diet changes/omissions help. After a certain length of time the restasis started to show signs of improvement and I also had some roscasia that involved my eyes on top of the Sjorgrens, so minocyclene helped. One autoimmune sometimes mean you will develop another. Have your thyroid level checked.
gonnabewell lynn15111
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jennifer09136 gonnabewell
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gonnabewell jennifer09136
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zeet gonnabewell
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I forgot something very important. Alongside the workout I do 20 minutes of Kundalini meditative yoga. That helps my mind and body to relax.
gonnabewell zeet
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Noted ... how does Kundalini differ from other types?
zeet gonnabewell
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gonnabewell zeet
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Ah thanks, I guess the better we breath the longer out dessicated lungs and pipes will last! Sounds like I need both. I'm going to phone the teacher now!
aitarg35939 gonnabewell
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At an in-person support group meeting last year the program was exercise and the speaker was a semi-retired fitness trainer/dancer/physical therapist. She now only works with folks with autoimmune diseases. One of the most important things she mentioned was starting from where we are, not from where we used to be or wish we were. She urged us to acquire the mindset that everything counts, so on those days when you've got nothing you count it if you can walk in place for a minute or two several times in the day. Yes, I used to walk 4.3 miles/hour and swim forever, ride my bike or walk to work. Be thankful for all those wonderful experiences and let that yardstick go in order to be thankful for what we can do today ... And this summer I got up to walking 2.5 miles/hour with my dog ... Until my COPD lungs got pneumonia. But I'll get back.
She also brought the ubiquitous strips of colored rubber, handed them out to all of us and had us all doing sitting strength exercises of all sorts. It was a great lesson in going forward from here, wherever "here" is for each of us on each day. I doubt I'll ever get up past 20 minutes on my stationary bike again, but after 9 years of not being able to ride it at all I'm damn thankful even if all I can do only 5 minutes.
If you can afford it, find and hire an adaptive trainer like this woman. One of our members goes twice weekly no matter whether she feels like it or not, and the trainer changes things up to suit where the woman's body is that day. If I could afford it I'd do this.
Good luck.
gonnabewell aitarg35939
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That's very helpful. Thanks. It is an easy trap to fall into - the " I used to be able to do this or that " your right much more helpful to start from where I am now..... Where do I find out about such meetings?
aitarg35939 gonnabewell
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I'm in the States and found out a out it by calling the Sjogren's Foundation.
gonnabewell aitarg35939
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Ah, yes, I've seen the foundation refered to in the States. I wonder if there is such a thing in UK, if so I havent found it yet . Anyone any ideas ?
aitarg35939 gonnabewell
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Hmm ,,, I've seen another reply and yes, I know what a useless pillock is. Anyone can start a support group for anything, so maybe you'll have to start your own. The US Sjogren's Foundation provides some literature and guidelines. IF the UK group doesn't do the same, you could always contact the US one & ask for suggestions on starting your group.
Our group alternates having speaker programs and having member programs where we each talk about how we're doing. No one dominates, which is very nice & the exact opposite of previous support groups I've visited on other topics. Some folks come from 200 miles away.
Speakers are often docs from specialties we favor, eye docs, dentists etc. Some come from nearby medical and dental schools. But of course you would start by finding other interested folks near you.