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Sport and Sjögrens/ advice, tips please

Posted , 6 users are following.

gonnabewell
gonnabewell

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

23 Replies

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  • dryguy
    dryguy gonnabewell

    Posted

    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 sad I was a tennis pro and top rower and also loved miuntain biking now nothing

    • gonnabewell
      gonnabewell dryguy

      Posted

      Yes this is becoming an issue for me too but mild so far. Is there any thing we can breath through at home to moisten the lungs and pipes? some sort of watery inhaler?
    • zeet
      zeet gonnabewell

      Posted

      I have yet to find a solution to that problem. Sorry.
  • zeet
    zeet gonnabewell

    Posted

    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
      gonnabewell zeet

      Posted

      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
      zeet gonnabewell

      Posted

      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
      gonnabewell zeet

      Posted

      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
    lynn15111 gonnabewell

    Posted

    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
      gonnabewell lynn15111

      Posted

      Thanks lynn, Been on thyroxine since 2005, also coeliac so off quite a few damaging foods which has presumably helped up to now. Just seem to be in a bit of a slump at the moment.
  • jennifer09136
    jennifer09136 gonnabewell

    Posted

    I have never had lofty ambitions like triathlon but do like to be fit and active. Yoga has been a saving. Resisted all my life but when i let it in I found a great way to get fit, strong, flexible and improved balance. Its great for meditation and bresathing and mindfullness too. Good teachers allow you to do it at your own level,so if you need to take a break and so lose some fitness you just build back up. You can do it every day, and you can do it at home. Worth a try. Once fit you might find you can do more of the more active sports.
    • gonnabewell
      gonnabewell jennifer09136

      Posted

      Thanks jennifer, I have been thinking about  Yoga but what you say will make me pursue it with more vigour ! 
  • zeet
    zeet gonnabewell

    Posted

    Hi gonnabewell

    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
      gonnabewell zeet

      Posted

      Noted smile... how does Kundalini differ from other types?

    • zeet
      zeet gonnabewell

      Posted

      Kundalini yoga differs from other yogas by concentrating on breathing as a means of achieving a meditative state. Far less energetic than other types of yogas.
    • gonnabewell
      gonnabewell zeet

      Posted

      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
      aitarg35939 gonnabewell

      Posted

      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
      gonnabewell aitarg35939

      Posted

      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
      aitarg35939 gonnabewell

      Posted

      I'm in the States and found out a out it by calling the Sjogren's Foundation.

    • gonnabewell
      gonnabewell aitarg35939

      Posted

      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
      aitarg35939 gonnabewell

      Posted

      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.

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