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Sjogrens and the martial arts

Posted , 3 users are following.

kitkatninja
kitkatninja

Hi All,

Just wondering, those with SS, do you do the martial arts?  And if so, which art do you do?  What modifications have you & your instructor done to support you?  And what supportive equipment do you use?

I've done the Martial arts since 1998 (I started when I was 20) and have been practicing ever since.  However before I was diagnosed I had to take breaks every so often from training and even had to change arts several times.  Now a days (post diagnoses), my instructor has had to adapt some of the movements for me (kicks, kneeling, stretches, etc) as well as having to wear supports (when needed) like tubagrips, wrist splints and knee braces.

What's your experience(s) like?

-Ken 

2 likes, 10 replies

10 Replies

  • jean34329
    jean34329 kitkatninja

    Posted

    Dear Ken

    I do not do martial arts but was interested in your posting.

    May I ask you what treatment you are on for SS and if you have to or are following a special diet.

    Do you get joint pains anf do these ever ese up only to flare up. If so how often does this happen?

    If so what tif anything riggers them off in your case.

    I would be grateful for any information because my signs and symptoms are particularly bad today and I am trying to cope.

    Do you get backache at all?

     

    • kitkatninja
      kitkatninja jean34329

      Posted

      Hi Jean,

      I'm on 400mg of Hydroxy for my SS, Codiene when required (as I can't take Naproxen), 50mg of Losartan for hypertension and Seretide for Asthma.

      I also have the occasional acupuncture and next month I'm having my second bout of physio (both for my joints).  I was told to exercise when I can, it's taken over 6 months now, but I now go to the gym 2x a week, swimming 2x a week and Tang Soo Do (karate) 2x a week.  It's very tiring, but I believe it's worth it, overall I feel much better for it...

      Flare ups...  Yes I still get them, the last "major" one I had was around Christmas 2014 - I had body pain, etc for about 3 months...  Lately though the longest I've had a flare-up has been about a week.  My glands still swell up, but not has large (hamster with food in them - with the feeling of my face will explode), however they still swell up every now and again.

      Sometime it flares up when I'm stressed out/under alot of pressure, other times it comes along and I don't know why...

      Back ache, yes - to be honest, anything with a joint, haha sad

      When I take my son to football practice (which lasts an hour), my whole body hurts from just standing there...  

      I do hope that your flare up doesn't last too long, it's not a great place to be - in pain...

      What treatment are you on?  What do you do?

    • kitkatninja
      kitkatninja jean34329

      Posted

      I forgot to add about diet, no, I'm not on any special diet, apart from little to no cow's milk as I'm lactose intolerant.  I have sheep's & goats cheese instead.  Until I'm told to change my diet by a dietition, consultant, GP or find a good enough reason to change, I'll just take food (or levels/types of food) in moderation... smile
    • jean34329
      jean34329 kitkatninja

      Posted

      HI ken

      No treatent yet but have been diagnosed with sub clinical hyperthyroidism and 20 nodules on the thyroid plus thyroid eye.

      Ken have you got peripheral neuropathy> The ACE inhibitors can cause peripheral neuropathy etc.

      So can antibiotics and PPIS as well as the statins.

      all these drugs have damaged me.

      I had an e mail this am from a physio advising against acupuncture.

      Feel fed up due to all this.

      Jean 

       

    • kitkatninja
      kitkatninja jean34329

      Posted

      No haven't got peripheral neuropathy, well I haven't been diagnosed with it...

      There are different types of acupuncture; Chinese, Japanese, etc...  As well as different types of alternative/Eastern treatment, some respond well, some don't.  For me, it works.  Can't guarantee that it'll work for another...

      I do feel for you, if it's not one thing, it's another.  I would talk to your GP/consultant about what other alternative treatments you could try.

      -Ken 

    • kitkatninja
      kitkatninja

      Posted

      Just letting you know that the acupunture that I had was electro-acupuncture.
  • Sunsetstuff
    Sunsetstuff kitkatninja

    Posted

    Hi Ken. No martial arts but used to be a runner. Ran 22 races in 2013, then in 2014, like you, started getting tired, 'worn out', had to stop running - got diagnosed with Sjogrens. Now I can only walk which I may throw a couple of jogs into , on my good days. I am only disappointed now- I already have been through my poor me, pity party! HaHaHa- first time I've admitted that! It sounds like you have a terrific teacher who is willing to work with you on adjustments to your new challenges!! Every Sjogrens sufferer has such unique symptoms and abilities, you really have to find your own way... You have to search yourself to find which art is best for YOU....and rest on bad days and put as much as you can out there on good Good luck and keep on!!
    • kitkatninja
      kitkatninja Sunsetstuff

      Posted

      Exactly, not only is the diagnoses different from person to person, but the effects and triggers are different person to person...

      The first step is to accept, then you can move on...  smile 

    • jean34329
      jean34329 kitkatninja

      Posted

      Hi Ken

      How did you go about acceptng this condition?

      I don't think I can.

      Jean

    • kitkatninja
      kitkatninja jean34329

      Posted

      ***The following is my own opinion based on my experience so far with sjogrens...***

      With great difficulty...  Education is a key aspect, along with:

      1. Modifying alot of things (for example I had to go thru about 10 different martial arts and clubs before I found one that suited me and my condition - which was a very hard thing to do as I was already a black belt in two of them).

      2. Managing my expectations

      3. Try not to dwell on what I can't do or use to be able to do.  And start working on what I can do.

      4. Join a support group (formal or informal, eg friends, family, etc).

      5. Exercise.  When I'm not experiencing a flare up, I go to the gym twice a week, do the martial arts twice a week and swim twice a week.  With regular exercise, it helps the body release endorphins which is great for stress and depression.  Added to that the exercise does help alot with the joint & muscular pain of Sjogrens.  It has taken me 2 years to get to this point (it's not a quick fix or the be all and end all, as I still have flare ups) 

      It's not easy...  And I still have off days, bad days, days when I really can't be bother and feel depressed - but its balances out (hopefully).

      I'm not saying that I have it perfect, I don't - it's still a working progress...

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