Exercising and Horse riding with lupu... - Hughes Syndrome A...

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Exercising and Horse riding with lupus anticoagulant

Kittybaker profile image
22 Replies

Can anybody tell me if they still exercise daily and in particular Horse ride. My surgeon and consultant last year told me my lifestyle would be different( I had 5 operations to remove a large clot that run from my knee to under my rib cage) I was told dur to the Internal damage caused I would walk with a limp and a possible aid. Since last year I have exercised and feel fine with no physical symptoms showing. I am now on riveroxaban and relieved to no to be injecting daily!

Does anybody else on here exercise and horseride? I have always rode and wish to go back to my hobby.

Thanks for reading this

:)

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Kittybaker profile image
Kittybaker
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22 Replies
MaryF profile image
MaryFAdministrator

Hi, obviously you have to take into account what your medical team suggest and say, but you are not the only one on here with that diagnosis that still rides... I have just the person to answer you. I am sure they will come back and talk to you. MaryF

healthunlocked.com/hughes-s...!

Kittybaker profile image
Kittybaker in reply to MaryF

Thank you for responding

Manofmendip profile image
Manofmendip

Hi

I try to keep cycling, which has been my lifelong sport.

Dave

Kittybaker profile image
Kittybaker in reply to Manofmendip

Myself I see fitness as aiding my recovery with this illness. Thank you for responding

Manofmendip profile image
Manofmendip in reply to Kittybaker

I Agree

MaryF profile image
MaryFAdministrator in reply to Kittybaker

I try and do daily exercise and one well days get out on a bike.. I do not take Warfarin but still face a number of challenges. I feel worse the days I do not, and it keeps my weight down! MaryF

Hi (thanks MaryF for geeing me up to answer this one!)

I can answer this no problems. I was diagnosed 15 years ago at the age of 19 and my doctors told me that I should give up all sports that could be considered contact - including falling off horses, snowboarding and football!

I said no.

I still ride, i have a horse - i try to stick to show jumping and dressage rather than x-country but I still fall sometimes. While I was on warfarin, I did have a few compilcations; my horse was attacked by a dog and i had a nasty fall then, and my horse stepped on my back... but really I could not give up the horses. Without that felt that my life would be half-lived!

I am on Clexane injections now everyday and I am much happier as my INR was never very stable but I don't worry about any injuries.

my doctors have been very supportive since the day I said no and now I often talk to people about the importance of living your life and that includes the sports / activities you love.

Obviously be careful - I wouldn't back a new horse to me, but I am always pushing myself to do more.

Take care but have fun - perhaps look into getting an airjacket / back protector?

Tx

Manofmendip profile image
Manofmendip in reply to

Hi Tasch

When I was on Warfarin I had a bad crash whilst cycling and had horrendous bruising.

Like you, I'm now on Heparin (Fragmin in my case) and I feel much better and I am not worried about falls/crashes now.

Dave x

in reply to Manofmendip

I've got so many photos of massive bruises, but that's all they've ever been! I have had a bleed into a ruptured muscle too, that was sore but nothing has done any lasting damage and even with a broken back, I was back riding within 6 weeks. You just have to know that injuries can happen... Tx

MaryF profile image
MaryFAdministrator in reply to

I promise only to tell you off if you suggest doing steeplechase! or enter The Grand National! youtube.com/watch?v=D4WtxKo...

MaryFxx

in reply to MaryF

Mary - how did you get this video - I thought it was in my private collection.... how embarrassing! :)

MaryF profile image
MaryFAdministrator in reply to

Yes.. I have my ways.. I am Miss Marple's sister etc. MaryFx

Samjanestock profile image
Samjanestock in reply to

I am newly diagnosed with APS. I also have CFS but have horses & hope to get back into dressage though will obviously be very careful. Possibly concentrate on walk work first with a bit of lateral work. And see how that goes.

Manofmendip profile image
Manofmendip

I totally agree Tasch. Also, the body has a natural reflex to protect the head if you fall. The crash I had ws into my son's bike as he had stopped to talk to someone and hadn't shouted 'stopping' and I wasn't looking where I was going I saw him with a second to react and I went flying over him but I didn't hit my head, my hands came up instinctively and I landed on them. My legs got all the bruises and haematomas! D x

Kittybaker profile image
Kittybaker

Thank you all for the responses:)

I decided a few months ago I missed horses too much. I have found a very good stable near me that are so helpful. I shall not be jumping anymore but concentrating on dressage As it is something I never mastered when younger.

since coming off fragmin I have very little bruising. That makes a huge difference. Thanks once again

cami profile image
cami

Hi, I still ride and have 2 horses, also ride racehorses and polo ponies.....would not, could not give up....they are my life...I have aps and Sjogren's plus metal in my neck and replacement knee!.....you only live once! x

Jomack profile image
Jomack

Hi all, been so worried about doing exercise since being diognoised with Hughes... You all seem to continue to a normal life as possible which is fantastic! I've been started on warfarin only a few days ago and the heamotolagist and friends and family keep telling I can't go back to my job as a Police community support officer which I love. I know I will need some changes like reducing my hours but why should I let this condition distroy my life! I have had two heart attacks because of Hughes and I also have AFib so there are other eliments but I'm determined to live a full life as poss!!! :0) Jo

Lure2 profile image
Lure2 in reply to Jomack

Hi Jo, That is the right spirit!. You just started warfarin and must get used to it. It can take some time. But you will be safe with warfarin and feel a lot better when diagnosed. Perhaps reduce some hours in the beginning. Of course you must have your job as a police officer even if you have got APS..

Best wishes to you from Kerstin in Stockholm

danaja profile image
danaja

Hi. Well here's one for you. I grew up on a farm and have ridden a few times thru out the years. Just went on a trail ride which is unusual given that I have avoided potentially dangerous activities since my diagnoses in 2003. Got thrown. Broke 12 bones. In the middle of Nowhere. Very traumatic injury. But APS didn't factor in as much as I thought it would. Sure they had to wait 12 hrs to do surgery while waiting for my Inr to drop. I don't know why they didn't do plasmapheresis.. And I have had a stable Inr for a long time, which I know is not the case with many out there, but still, it kind of seemed like I was tougher than I thought. It was the second emergency this year requiring surgery and that one went ok too. I mean, I am hyper vigilant at the hospitals, asking a lot of questions of the doctors and nurses, asking for heparin when they forgot and such. But it just seems to me that if there are things you have to do or want to do that have some risks involved that you should still do them. Assess the risks for sure and have a plan but..I don't know, am I making any sense. Just been afraid for so long and now I'm not anymore. Bad things happened but I'm still here and I'm ok. So I say if you really love riding, ride.just be careful.

in reply to danaja

Since my diagnosis, I have broken my back (stepped on by a horse), hip (fell off on steroids and broke the socket), pelvis (genuinely thrown by a racehorse), dislocated fingers, ruptured a tendon (that was jumping in a river in South Africa), I have competed in the Brits snowboarding comps twice, walked up mountains, sailed the Bay of Naples.... (I am very lucky) ...the point is, these injuries and experiences are pretty extreme but the APS / Lupus / kidney transplant has rarely made a difference to my recovery. I do tend to be a bit more careful these days but the risks I take are for my quality of life... please remember that we only get one life and it's important that you enjoy it!! Tx

Suzypawz profile image
Suzypawz

We all need to try & still do what we love & keep positive. At times there will be complications or question marks over if we should?!

But we all have to make our own decisions in the end & decide whats best for us.

I know I'm at risk everytime I go on my boyfriends motorbike...I now have my own....but we could also be at risk in cars, crossing the road....etc etc.....

Are you willing to wrap yourself up in bubble wrap for the rest of your life & not attempt to enjoy life? I know I wont!

There's limits, there's being sensible, there's being careful, there's compromising, just don't push the luck card out too much & I believe in my opinion we can still do many things....within limits :)

We are all different & I know I've not got a lot of complications as of yet compared to others but am fully aware of the dangers of being on warfarin & having an accident...yes it scares me...but not enjoying life scares me more.

I also believe exercise is a very good thing to do mentally & physically.....I go to the gym twice a week & have at least one small walk daily....good for the circulation. I know for some it can be difficult / painful, but something is better than nothing.

Please be careful & take everything into consideration before attempting anything x

purdy30 profile image
purdy30

I had this dilemma myself a year ago, having suffered a stroke and diagnosed with APS. After diagnosis I was prescribed plaquinel and warfarin and told by the Dr.that riding was a serious risk. This was a huge shock as I have two highland ponies, who are my life. Its taken me a year to feel properly better and to get my head around it all, but I've decided to carry on riding - I think my health would suffer more if I had to give the ponies up. Also, since I've been on the medication I've felt so much better, more energised and want to ride.

Anyway, thanks to Tasch, who helped inspire me, I am back riding regularly, am entering competitions again and even taken up side saddle. I think you just have to do wants right for you - you may have this illness, but you must still live your life. Also, do not take risks and take all precautions you can. I went out and bought a top of the range helmet. It makes me feel better and as we all know who ride, the more confident you feel, the less likely you are to transfer nerves down the reins which could lead to problems.

Good luck with your recovery and I hope you make it back in the saddle.

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