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Sjogren's and exercises?

Posted , 10 users are following.

EvaPingoy
EvaPingoy

I have sjogren's and systemic sclerodermatitis. I have been told to do some exercises as these may help stretch connective tissues and alleviate some stiffness in scleroderma. With sjogren's, i just feel exhausted most of the time and I wonder if doing some exercises could help or aggravate my exhaustion. Is there anyone out there who could point out to me what exercises best suit me? Thank you and hope to hear back from you...

3 likes, 18 replies

18 Replies

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  • christine26761
    christine26761 EvaPingoy

    Posted

    Have had  Srogrens for 23 years and Fibromyalgia for 22 yrs...many of the symptoms are the same.  The only excercising I can do is warm swimming pool walking etc...I also have a sauna with infrared lights and ionic...would love to get in the spa but I just can't bathe or spa..only showers......can't get in...the pool is very different..I use the local resorts pool..very easy to get into..hope you find out what you need Eva..be blessed and have a lovely day..:-) xxx
    • EvaPingoy
      EvaPingoy christine26761

      Posted

      Hi Christine, definitely swimming!!! thanks! I'd go back to it regularly from now on. I'm also thinking about hiring a private physiotherapist next year so I can do the appropriate core exercieses etc. as my posture is sort of affected recently being so tired all the time. Thank you thank you for your encouraging note. God bless you! xxx
    • christine26761
      christine26761 EvaPingoy

      Posted

      I also had some physio to learn what I needed to do in the pool...it was

      really good...it was there hydrotherapy pool...like a big stainless steel bath with a chair lift to get you In and out.....I was lowered into the hospitals pool and showed my excersises...one day a week for a  about a month..then viola I knew what I had to do...They actually gave me a copy of the excercises onlaminated so I could take them with me until I got to know them...hope you enjoy,,be blessed..:-) xx

  • Roadcan
    Roadcan EvaPingoy

    Posted

    Hello,

    I highly recommend something low impact like cycling.

    • EvaPingoy
      EvaPingoy Roadcan

      Posted

      Hi Roadcan, I tried cycling for about a couple of minutes and I felt beat up, perhaps the tropical weather didn't help at all. But also my knees were hurting afterwards. But thanks anyway...wink
  • mandy95
    mandy95 EvaPingoy

    Posted

    Hi EvaPingoy,

    I have the same and I feel really tired all the time, but I have been told to start going swimming again and light excersie like walking etc.  I tried going back to my Zumba but it left me really dry in the mouth and I struggled to keep up.  Hope this helps.

    Regards,

    Mandy

    • EvaPingoy
      EvaPingoy mandy95

      Posted

      Yeah, activities such as martial arts and cycling which I used to do are put on a stop because I'd end up feeling beat up the rest of the week. But swimming is definitely going to help. I live in the Philippines so walking isn't a very good idea here as it can be really really hot. Thanks Mandy!
  • sally83545
    sally83545 EvaPingoy

    Posted

    Hi Eva!

    My husband coaxed me in to trying to take a 30 to 20 min. walk each day. He and I both noticed I seem to have more energy and feel better overall. I noticed hills cause pain so I try to stay on a level area. I also try to breathe deep and enjoy my surroundings doing this seems to add to my sense of well being. I walk at a comfortable pace and try to relax. I also try to go when the weather is cool so I don't get overheated then have a piece of fruit and glass of water when I'm done to recharge a little.

    Feel better,

    Sally

    • EvaPingoy
      EvaPingoy sally83545

      Posted

      Hi Sally, I live in the Philippines so walking is quite an ardous task given the hot weather we have here. However, I love swimming so might try going back to it regularly. I remember feeling extremely relaxed being in the pool and doing a freestyle the whole time felt like a wonderful breather. I was a martial artist and a cyclist before but all these things I can't do anymore...so I get so depressed for feeling useless and everything but I suppose it's a stage that everybody who has sjogren's can get to at one point in time. 
  • Rider
    Rider EvaPingoy

    Posted

    Hello. I have Sjogrens and have been referred to a physiotherapist at the local hospital. On finishing with them have visited  a private physiotherapist and carry out exercises. Many are isometric and easy to do. I have found much pain reduction, increased flexibility well worth the cost and effort involved. I also think that walking is a good exercise. Wish you well Howard
    • EvaPingoy
      EvaPingoy Rider

      Posted

      Thanks Rider. I have been thinking about hiring a private physio as well. Just couldn't afford just yet but I'm working on it so I could have one next year. I just feel that my posture has also been affected with me being so tired all the time...motivation is another thing to get me to do some core exercises but I believe that once I have a private physio, things can get better.
  • Rider
    Rider EvaPingoy

    Posted

    Hello again. The NHS. Rheumatologist referred me to a NHS. Physiotherapist I think this was to deal with painful joints, lack of mobility, loss of strength. I lost a lot of weight before diagnosis, much of the weight loss was muscle. The exercises and manipulation increased the muscle, helping with the weight. Some of the problems related to ligaments and tendons, again the exercises helped. The physiotherapy also helped with the psychological side of Sjogrens. I also had a posture problem, once again the physiotherapy helped. Best wishes
  • kitkatninja
    kitkatninja EvaPingoy

    Posted

    I don't have systemic sclerodermatitis, but I do have SS, asthma, high blood pressure and dodgy knees (damaged cartilage).  I was told my both my consultant and GP to exercise when I can and don't when I can't (eg in pain).  I current do Tang Soo Do (Karate), swimming and light weights.  I also do the exercises that the physio gave me a couple of years ago for my knees.

    I will say that when I'm not experiencing a flareup the exercises that I do really help me, I have so much more energy.  However during a flareup period, I really do not do anything.

    As for which exercises best suits you, really only you and your medical personal can advise smile

  • amanda67362
    amanda67362 EvaPingoy

    Posted

    I have Sjogren's, fibromayalgia, POTS, anxiety, hashimoto's thyroiditis (and hypothyroidism), and asthma, some days my muscles feel weak, some days they do not, but what helps me the most is exercise. Nearly everyday I get out and do something even if it is a mild work out. I run because I enjoy it and it keeps my body strong in all aspects (I love to run with my dogs) I truly believe it has been the staple keeping me healthy and keeping away many of my symptoms. My doctors are amazed that I have been running for years with POTS alone and I am proud to say I can ran hard, fast and my muscles are in good shape. I also enjoy Yoga (though i am not very good at it) and I like to lift weights. My advice would be to listen to your body (I can't exercise in the morning b/c of POTS but i can push myself to do it in the evening after work so that is when I set aside time) and find exercise that makes you feel good and will strengthen your body. If you can do that you might be surprised how well and empowered you feel. I also took hydroxchloroquine prescribed by my doctor and it helped with fatigue but I went off of it after a month because I feel good enough that I do not need meds. Despite these illnesses I am on very few medications.
  • maureen42261
    maureen42261 EvaPingoy

    Posted

    I'm afraid I have no advice, but if anyone knows of anything I would welcome it also, this feeling tired is very draining and I'm feeling a bit grumpy at times, so any advice please ? 
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