Fearing exercise: I know this is my own... - Hughes Syndrome A...

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Fearing exercise

mylafont profile image
9 Replies

I know this is my own fear, but I don't exercise for fear of causing a clot to move and cause damage if ingot my heart rate up too much.

My form of APS is only in my brain and when my INR get low, I'm afraid I'll get a clot.

It's suspected that my seizures were caused by a clot that got loose and caused damage and or some scarring one of the times my INR was too low.

Is this fear real, or all in my own mind?

Happy holidays.

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mylafont profile image
mylafont
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9 Replies
tassie profile image
tassie

Its hard not to worry about things like that but probably the best thing is to discuss this with your medical team as they are the best ones to ask and I suspect they will put your mind at ease.

Good4u profile image
Good4u

Hello, my APS was misdiagnosed a mulitude of times over a period of about 9 years. Suffered over a 100 Tia's, silent stroke & numerous other symptoms. I did 4 return flights from Australia to the UK so 20 hours each time. All this time I was not on any blood thinners. One thing I always did though was exercise and I have no doubt this is what saved me from a massive stroke and any permanent damage today. Exercise is one of the best "medications" you can take. Discuss with your doc though and good luck! :-)

MaryF profile image
MaryFAdministrator

Hi, there, do have a check in with your main medical consultant who will probably be keen for you to take some sort of exercise, I think many worry about this, so best to have a chat with them. MaryF

Lure2 profile image
Lure2

Hi again Mylafont,

I agree with the others that exersice is the best drug. So keep moving unless your heart húrts or you get breathless of course.

Try to cheque your INR and see to it that it is in range also.

Best wishes to you and Happy Holidays to you too.

Kerstin

Fra22-57 profile image
Fra22-57

I have APS and also told it is the brain

GinaD profile image
GinaD

By the time I was diagnosed -after 10 years of symptoms --MRIs showed a lot of stroke damage. But, as others have suggested, exercise actually improves circulation. I am an avid hiker/walker so I believe that walking is the best exercise. Check with your GP, and if approved, go find your favorite walks. Wear comfortable shoes, gloves if the weather is nippy, and enjoy. I keep a record of how many miles per day. Those numbers motivate me.

mylafont profile image
mylafont

I never could understand the logic of it being only in my brain either. Like you thinking blood flows throughout my body how could it be only in my brain? but it was explained that it affects either arteries or veins. At least that's what my Rheumy tells me and that's why I am only at risk for issues in my brain and not my hear or lungs? I still don't fully under stand it. But I did go walking with my hubby this morning and am going to do more to get moving around more.

mylafont profile image
mylafont

Thanks for all your replies. This helps relieve a lot of my fears. I had started a program with a gym, before the seizure meds and when I exerted myself, I'd get dizzy and off balance. Now that the meds are regulated, I am much better and ready to get into better shape.

Sal0712 profile image
Sal0712

I like you have a problem with my brain through bloodclots and a bleed 5 years ago I go to the gym 3 times a week and find that I am ok so long as I don't let my heart rate go above 170, and that I don't lift weights that are too heavy. Like yourself I was frightened at first, but am now realising that it can be done so long as you don't push yourself too much! I am on warfarin and find that of my INR is low it impacts on my ability to train, but I just adjust the machines to a lower level and I'm fine. Hope this helps. Gentle hugs, Sally xx

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