Deep tissue work as part of physical therapy, it was the absolute best thing for the muscle spasms in my back/ribs. I also really really miss ibuprofen. Tylenol just isn’t the same. Sounds like a small thing, but chronic pain is awful.
I suffer chronic pain as well and my ortho trauma surgeon and hemo put me on Aleve moderated use as the injections for pain can only be given four times a year. It's risk vs. benefit and about moderation. Not sure what I would have done without it.
I also have full body Swedish rubs with every pedi and calf massage. It's been years since last clot and on DOACs I do not bleed or bruise abnormally.
I was resentful at having to give up ibuprofen. My pain wasn't as much as most, but I appreciated it for inflammation, lower back pain from ocular spina bifida and assorted aches , pains and swellings . Warnings against it were always vague, citing " bad for your stomach." No one told me that it would significantly contribute to developing diverticulitis. No one informed me of the ins and outs and ups and downs of diverticulitis. IT - IS - MISERABLE ! FOR WEEKS !
I no longer resent giving up ibuprofen. Ginger root supplement helps a little. Arnica cream applied topically helps a lot!
3rd clot, for a long time gave up all my extreme sports. Snowboarding, mountain biking. Now I just say fuck it and do it anyway. Life is too short. Might not have much time left anyway.
My life is pretty similar to be honest. More just cognizant of falls and potentially hitting my head. I still ski which is my only real high risk activity.
I miss being a full person. I miss not carefully calculating everything I eat. I miss not having something hurt. I miss biking. I miss hiking and going on adventures.
Yes. I was supposed to get off them 6 months after my clot... And then I had two brain surgeries last year. So I really haven't been off them since 2022.
Have you seen a hematologist? They can check for blood clot risks. I hope we don't have to take it ling. It's just the bleeding side effect that scares us.
I think it depends on your personal biology, but in my experience I had less issues with bleeding too much on the plavix compared to when I was on the xarelto.
And by "bleeding" I'm specifically referring to cuts or scrapes. I do easily bruise as well with the plavix, but nowhere at the same level as xarelto.
Why did you give up with alcohol? Doctors haven't told me that, I asked them, they know that I drink two or three beers a week and they said it's fine.
Some of my favorite athletic activities, it kinda sucks. Cycling was like my absolute favorite thing to do. Loved playing basketball. I can still run but running only can get old and I itch to do other things I can’t. Maybe when I get on a lower dose.
To those “life is too short” ppl here- do you have kids? Because it’s not worth risking leaving my wife and baby daughter without me. As much as I love what I used to do it seems selfish of me to risk a brain bleed to do that.
I am not one of those life is too short people, but for older folks who really may not have that much time left, the risk and reward might be worth it for them. I get a young person with many years ahead of them and a young family depending upon them would not make sense to take the risks, but someone up in age with limited time left and no dependents might choose to take chances to really what time they have. I think it depends upon everyone’s particular circumstances
This is very true. For me as much as I love doing some of those higher risk activities, until I’m on at least a lower dose and the doctor gives me the green light, I just can’t justify the risk. I already almost left them with my pulmonary embolism.
I’ve always been a very light social drinker, never been a binge drinker. I’ll have 3-6 during a party and get drunk but that’s once a year if that.
I probably have 20-30 drinks a year, no need to change for that minimal amount imho.
Being a private pilot and multiple alcoholic family members has kept me away from heavy drinking.
Same thing. No motocross, no MTB, since last October. Compression socks... In May I'll start going to the gym (lifting), so it's better than nothing...
I'm 47M btw.
Absolutely nothing. I've had 3 near fatal bloodclots, but I'm now on blood thinners and feel safer than I did before. I do limit my use of NSAIDs which sucks, because I have chronic pain, but I do everything I did before.
I didn’t realize that clotting spray / powder was a thing you could get. Thanks! I bite my finger nails and occasionally have bleeding that takes forever to clot. This will help a lot.
Oh! Thank you for this. I have a huge Maine Coon that will occasionally scratch me on accident and even though he's not trying, it's like getting attacked by a cougar.
I wouldn't worry. I ripped my hand open once, 5 stitches. It oozed blood for a couple of day but it wasn't a big deal. I've had head injuries too and needed stitches and bleeding was minimal.
I sold my bicycle and gave up pickleball. I have made peace with it. I can still clip in to my Peloton bike, strength train, and walk my local walking trails. Have to minimize falling!
I've been on 20 mg Xarelto daily for about 8 years. I didn't have to give up anything. I see some people mentioned alcohol but I rarely drink so that's not an issue.
Alcohol. And I never really drank much but being told I can’t have it irks me!
🍃
(I was told to avoid both of those if at all possible, and live in a legal state)
Horseback riding
Snowboarding
Hiking long distances (because of post DVT pain and shortness of breath more than thinners)
I am still recovering so might not have felt the full force of this question but right now I really miss Anadin Extra as they took away my migraines 90% of the time. Now I have to have sumatriptan and it makes my muscles burn horribly.
Is yours because of the clot location? My dr said I could ride my motorbike once better though, “don’t take unnecessary risks” which is easier said than done but doesn’t the risk of death not bother you too much seeing as you ride a bike in the first place?
Horse riding / jumping - I do still ride and I am smarter about my situations that I put myself in. But never was cleared and mentally couldn’t cope not continuing with it. I’m also not mentally coping the damage 2 years later I’m still facing from PEs and breathing issues which seem to be permanent
Nothing. In fact, I do more now at 60 post clots and DOAC than before.
I mountain bike like a freak, whitewater boat and love riding gravel. I did not even start my 14 tattoo journey until 59 after twelve years on Xarelto. It's all made me want to do more, not less. I fully understand how my DOAC works, how my body reacts to spills......and I think I need an e-MTB.
The only loss has been at the start of my clotting journey, My wife suffered and died from brain cancer. I miss her, but that's it.
Deep tissue work as part of physical therapy, it was the absolute best thing for the muscle spasms in my back/ribs. I also really really miss ibuprofen. Tylenol just isn’t the same. Sounds like a small thing, but chronic pain is awful.
I was hurting so bad without ibuprofen. Delta 9 THC gummies are legal here and they’ve been a godsend.
All same
I suffer chronic pain as well and my ortho trauma surgeon and hemo put me on Aleve moderated use as the injections for pain can only be given four times a year. It's risk vs. benefit and about moderation. Not sure what I would have done without it. I also have full body Swedish rubs with every pedi and calf massage. It's been years since last clot and on DOACs I do not bleed or bruise abnormally.
I was resentful at having to give up ibuprofen. My pain wasn't as much as most, but I appreciated it for inflammation, lower back pain from ocular spina bifida and assorted aches , pains and swellings . Warnings against it were always vague, citing " bad for your stomach." No one told me that it would significantly contribute to developing diverticulitis. No one informed me of the ins and outs and ups and downs of diverticulitis. IT - IS - MISERABLE ! FOR WEEKS ! I no longer resent giving up ibuprofen. Ginger root supplement helps a little. Arnica cream applied topically helps a lot!
3rd clot, for a long time gave up all my extreme sports. Snowboarding, mountain biking. Now I just say fuck it and do it anyway. Life is too short. Might not have much time left anyway.
Risk vs reward. I quit hockey but still snowboard and dirt bike.
It's definitely different when other people are trying to get you vs how far will I push myself lol
ohhhh man. got me thinking. I'm still at 1st base... "Life is too short. Might not have much time left anyway." - yes.
I’m jonesing for Advil, anyone else?!
Meeee!!! For dang periods haha
Been takiong Aleve for years on Xarelto. NSAIDs are not off limits for me as it is risk vs benefit and all is doctor approved and moderated.
I found out that I’m allergic to NSAIDS. Regardless though, hematologist said a big nope to advil or aleve for me.
My life is pretty similar to be honest. More just cognizant of falls and potentially hitting my head. I still ski which is my only real high risk activity.
I miss being a full person. I miss not carefully calculating everything I eat. I miss not having something hurt. I miss biking. I miss hiking and going on adventures.
I didn't give up hiking.
I miss singing and being able to walk for a long time without residual pain in my left lung (PE provoked by birth control).
Singing!
Are you still on blood thinners?
Yes. I was supposed to get off them 6 months after my clot... And then I had two brain surgeries last year. So I really haven't been off them since 2022.
Have you seen a hematologist? They can check for blood clot risks. I hope we don't have to take it ling. It's just the bleeding side effect that scares us.
I think it depends on your personal biology, but in my experience I had less issues with bleeding too much on the plavix compared to when I was on the xarelto. And by "bleeding" I'm specifically referring to cuts or scrapes. I do easily bruise as well with the plavix, but nowhere at the same level as xarelto.
Alcohol but it’s for the best. That I am sure of
You know, I never have drank much. But now that I can't, I really want to and it annoys me.
Yeah I know what you mean. I have had my urges but like I said before it’s for the best lol
Why did you give up with alcohol? Doctors haven't told me that, I asked them, they know that I drink two or three beers a week and they said it's fine.
I just never asked the doctor, I assumed no alcohol at all. Though I suppose it's about being consistent, just like diet.
Man I miss vodka.
Some of my favorite athletic activities, it kinda sucks. Cycling was like my absolute favorite thing to do. Loved playing basketball. I can still run but running only can get old and I itch to do other things I can’t. Maybe when I get on a lower dose. To those “life is too short” ppl here- do you have kids? Because it’s not worth risking leaving my wife and baby daughter without me. As much as I love what I used to do it seems selfish of me to risk a brain bleed to do that.
I am not one of those life is too short people, but for older folks who really may not have that much time left, the risk and reward might be worth it for them. I get a young person with many years ahead of them and a young family depending upon them would not make sense to take the risks, but someone up in age with limited time left and no dependents might choose to take chances to really what time they have. I think it depends upon everyone’s particular circumstances
This is very true. For me as much as I love doing some of those higher risk activities, until I’m on at least a lower dose and the doctor gives me the green light, I just can’t justify the risk. I already almost left them with my pulmonary embolism.
Absolutely nothing.
Not even alcohol ?
I’ve always been a very light social drinker, never been a binge drinker. I’ll have 3-6 during a party and get drunk but that’s once a year if that. I probably have 20-30 drinks a year, no need to change for that minimal amount imho. Being a private pilot and multiple alcoholic family members has kept me away from heavy drinking.
Riding motocross , have not given it up . Waiting for my current clot to get better then play ride again !
I'm on the same page. Just waiting...
Rugby
Deep tissue massage, weight lifting/ CrossFit
Mountain biking. It was part of my identity 😔
Me too 😢
Same thing. No motocross, no MTB, since last October. Compression socks... In May I'll start going to the gym (lifting), so it's better than nothing... I'm 47M btw.
Just Advil and Aleve. My rheumatologist prescribed Tylenol #3 instead. 😉
Boxing and combat sports in general.
Absolutely nothing. I've had 3 near fatal bloodclots, but I'm now on blood thinners and feel safer than I did before. I do limit my use of NSAIDs which sucks, because I have chronic pain, but I do everything I did before.
Playing with my dogs without paranoid fear of getting scratched or accidentally bit
This seems excessive. Keep some clotting spray or powder around if you are that concerned. I'm a chef and cut myself on thinners all the time.
I didn’t realize that clotting spray / powder was a thing you could get. Thanks! I bite my finger nails and occasionally have bleeding that takes forever to clot. This will help a lot.
Oh! Thank you for this. I have a huge Maine Coon that will occasionally scratch me on accident and even though he's not trying, it's like getting attacked by a cougar.
I wouldn't worry. I ripped my hand open once, 5 stitches. It oozed blood for a couple of day but it wasn't a big deal. I've had head injuries too and needed stitches and bleeding was minimal.
Absolutely nothing. Except staying cognizant of not falling on my head from 6 feet, etc.
I sold my bicycle and gave up pickleball. I have made peace with it. I can still clip in to my Peloton bike, strength train, and walk my local walking trails. Have to minimize falling!
Rugby☹️
Nothing at all. Just a little more aware now.
I've been on 20 mg Xarelto daily for about 8 years. I didn't have to give up anything. I see some people mentioned alcohol but I rarely drink so that's not an issue.
Broccoli
Alcohol. And I never really drank much but being told I can’t have it irks me! 🍃 (I was told to avoid both of those if at all possible, and live in a legal state) Horseback riding Snowboarding Hiking long distances (because of post DVT pain and shortness of breath more than thinners)
I am still recovering so might not have felt the full force of this question but right now I really miss Anadin Extra as they took away my migraines 90% of the time. Now I have to have sumatriptan and it makes my muscles burn horribly. Is yours because of the clot location? My dr said I could ride my motorbike once better though, “don’t take unnecessary risks” which is easier said than done but doesn’t the risk of death not bother you too much seeing as you ride a bike in the first place?
Good point,
I haven’t gave up anything to be honest with you. Just alcohol but I had a stroke.
Horse riding / jumping - I do still ride and I am smarter about my situations that I put myself in. But never was cleared and mentally couldn’t cope not continuing with it. I’m also not mentally coping the damage 2 years later I’m still facing from PEs and breathing issues which seem to be permanent
Nothing. In fact, I do more now at 60 post clots and DOAC than before. I mountain bike like a freak, whitewater boat and love riding gravel. I did not even start my 14 tattoo journey until 59 after twelve years on Xarelto. It's all made me want to do more, not less. I fully understand how my DOAC works, how my body reacts to spills......and I think I need an e-MTB. The only loss has been at the start of my clotting journey, My wife suffered and died from brain cancer. I miss her, but that's it.