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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

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  • dryguy
    dryguy gonnabewell

    Posted

    BSSA comlete and utter waste of space time and money. #0 years out of date run by pillocks and useless at getting any support for Sjigrens from the NHS or government - and you can quote me!

     

    • gonnabewell
      gonnabewell dryguy

      Posted

      Oh dear, sounds standard "British"! . In a previous life I would have started a group but at the mo I am trying to prioritise my own well being , starting with a daytime nap - might even change jobs to accomodate this. I really havn't the energy, What we need tis the energetic, savvy  partner of a sufferer......

    • aitarg35939
      aitarg35939 gonnabewell

      Posted

      I think it's just standard everywhere. I wouldn't have the energy to start one either, nor even the energy to help find speakers. So you're right: someone's savvy & caring partner, spouse/child is how these things often get started. I've no idea how the union with Johns Hopkins came about for the US foundation, but it's brilliant. My guess is that some extremely wealthy family of an ss sufferer left a massive pile of dedicated money for both as research and the foundation. I've not come across other illness-specific foundations & support groups allied with a huge med school-research-treating hospital.

      I do know that I find both kinds of support groups helpful. Good luck.

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