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Hughes Syndrome APS Forum

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Are there any restrictions or concerns with exercising with APS?

iwantsimple profile image
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I finally received a diagnosis 2 months ago, and now that I'm on Coumadin, I feel so much better! For the past 2 years, though, I have done next to nothing physically. I am able to walk and cook and take care of myself now, but I am weak and need to get my strength and endurance back. I'm ready to start going to a gym and exercising (in a pool, first, to build strength). Are there any restrictions, worries, etc. that I need to watch for when doing this? How have you all gotten back in shape after being diagnosed (assuming you had a period of chronic illness)?

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iwantsimple
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olleberj profile image
olleberj

I find that regular exercise helps me to feel a lot better than I would otherwise. I stick to movements that don't tend to often cause bruising like cycling, swimming and walking. I find that I bruise very easily due to years of taking blood thinner.

ratbert profile image
ratbert

After a severe PE which took about 9 months to recover from (and after which I was diagnosed with APS), my blood pressure started getting out of control (again) so my GP encouraged me to get fit and lose some of the weight I had regained during recovery. Basically, if I was fit, I'd be in a better shape to deal with any future events that did occur.

I'd taken up mountain-biking a few years previously so returned to that. I also bought a rowing machine for when the weather is miserable or I just couldn't be bothered getting kitted out to go riding.

I started out with light effort for short periods - even 10 mins at a time. My heart rate initially would rocket to 140bpm and I'd have to ease off to the point I felt like I was barely exerting myself. But that eased surprisingly quickly and within a few months I could manage 30-40mins of fairly vigorous exercise.

After getting another large DVT a few months back I once again struggled to be able to exert myself at all, and now I'm back to being hopelessly unfit, and starting again. I'm back to 10mins of light exercise at a time.

I'd suggest it's well worth the effort to do what you're able to, and enjoy doing. I'm not a mad mountain-biker and stick to somewhat sensible tracks, but injuries happen - that's how it goes. I would probably be a bit more cautious if I bruised really easily, but I doubt that alone would stop me altogether. Listen to what you're body is telling you, but otherwise get stuck in.

There's lots of folk in this community who are genuinely limited in what they can do. I'm going to do what I can as long as I'm able, and appreciate that it may not always be that way.

pete

If you take warfarin it may lower you INR as your body's metabolism changes, so watch closely at first. If allowed,exersise is great for the brain as it helps increase bloodflow. Changes is exersise may also effect how some of your other medication works, such as insulin.

Manofmendip profile image
Manofmendip

Hi Iwantsimple

I've been diagnosed with APS since 2002 and I've continued to be a keen cyclist; I used to race bikes but I now just ride for pleasure and health & fitness.

Exercise is good an increases blood flow.

Best wishes.

Dave

I try to take regular excercise (I have been told it will affect my INR hence the regular) and do as much as I possibly can until the fatigue kicks in as I sleep better and am a lot happier when active.

iwantsimple profile image
iwantsimple

Wow! Thanks everyone! I appreciate all the positive feedback. I really want to start exercising and get my strength back!

When I went to the Physical Therapist, they acted like I was fragile and might have a stroke on them. I'm sure they were worried about lawsuits. It was clear that they knew nothing about APS, so I spent 30 minutes educating them.

I just want to make sure that exercising doesn't increase the likelihood of a clot and there are no other APS related risks to watch out for. I'm ready to get my "self" back!

:)Michelle

Karen, an APS patient and also a researcher at University of Kent is actually doing a study now on Exercise and APS for patients all over the world. Her hopes are to turn this into research into finding what is best for APS paitents and breaking down barriers to being fit and healthy.

You can participate by going here..... survey.kent.ac.uk/exercisea...

Before I was diagnosed I ran the London marathon and since diagnosis I ride 100km a week and walk 40 mins each day. I honestly believe staying fit and keeping my weight down has minimised the symptoms I suffer from. Like others I intend to be as active as I can while I still can. The only concession I make is to wear a medic alert bracelet in case I'm knocked off my bike. Goodluck!

iwantsimple profile image
iwantsimple

I am heading over to the survey right now. I am not overweight, but I am severely under-fit (if that's a word??) from being off my feet for the past 2 years. I plan to fix that ASAP!

GinaD profile image
GinaD

I have one caution to share with you: backpacking. For me I find that a heavy pack constricts the flow in the brachial arteries and contributed to a TIA/migraine I had on a backpacking trip. And no doubt the prescribing doctor lectured you about avoiding extreme sports where the risk of head injury is increased. Other then that--go for it! And enjoy!

Gina

iwantsimple profile image
iwantsimple

Oh, yes. I have never been a risk taker, so any kind of extreme sport is out of the question for me. I'm thinking of things that can be done inside a gymnasium. :) I leave the crazy stuff to the rest of my family!

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