Have you participated in the Exercise & APS survey?

survey.kent.ac.uk/exercisea...

Karen is an APS patient as well as a researcher at Univeristy of Kent (she has a PhD in Physiotherapy and is a senior lecturer).

This study is avail for all APS patients everywhere in the world and it is hoped lead to further research in the field of APS.

I am so proud of Karen for all the hard work she has put into this and for all her dedication!

13 Replies

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  • Thanks for reposting let's hope Karen gets the people filling in the survey come on people the more people fill it in the more info we can get

  • Hi! I couldn't find the exercise survey. A women I know, and myself, both with APS, have the same thing happen to us when we exercise. Most people have more energy afterwards, but for some reason we seem to end up exhausted - I mean end up taking a nap!! I was told it was because of the way the oxygen was carried in my blood. Also it affected us in the heat .( we both live in Florida) In the heat I feel like I am walking in quicksand or the way you feel trying to walk thru water that is up to your shoulders. It takes an effort.

    debi in FL w APS

  • Debi,

    Here it is

    survey.kent.ac.uk/exercisea...

    was in the post above but I don't think you saw it. I think I do better when I properly anticoagulated for sure but still exercise can be hard at times.

  • Just done this, it doesn't take too long so good luck to Karen and her research x x

  • Hi -I just wanted to mention that there are many ways of taking regular exercise without ‘working up a sweat’ or ‘becoming breathless’. Regular walking, swimming, Pilates and yoga all keep the body fit and well without doing either of these things. Also there are many people with high levels of anticardiolipin antibodies who live very active lives.

  • So true. If you google lupus and exercise there are some great ideas to slowly incorporate exercise into your lives in a way as to not overstress or overwork the body. I know mine at times tends to overexxagerate the workout- my body's response is like that of a workout 20 times what I actually did. That can make it difficult at times. BUT I have found that buiding up to a level works very well.

  • I just finished the survey :) although I feel I am a bit of a wild card because for exactly a month I have been trying new things. I feel great, I've lost weight and dispute my body grumbling about it I've been very active. I have avoided my dr, been seeing a naturopath like consultant, and I've been having hypnosis therapy to reduce stress, increase physical activity and loose weight. I have been eating 2 meal replacements a day to ensure proper nutrition.

  • Oh wow it sounds like you are doing something right for sure! I am very interested in hearing your progress- I am sure it will inspire me to lose this recent weight I gained from steroid use/inactivity due to pain and not being able to keep my mouth shut when sweets and chocolate are nearby!!

  • Thanks everyone for taking the time to take the survey. We will be posting an overview of the results on the HSF website and we will add a link on the forum when it is complete in a few months time.

  • I did this the other week! :)

  • all filled in for you karen hope it all goes well

  • I completed!

  • Thanks everyone!! And THANK YOU Kaz!! You are such an inspiration to me!!

    We need to connect soon, too- I will be away for a week or so, then if I am right you will be here in the USA?

    -Kx

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