Deep Vein Thrombosis (DVT) Support Group

Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.

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Heart, Blood & Circulation
/ Deep Vein Thrombosis (DVT) Support Group

New DVT and anxious.....

legolady5
legolady5

Hi - I'm new to the group.  I was just diagnosed with an unprovoked nononclusive DVT in my popliteal vein.  I've been taking Xarelto for one week now.  I've met with a hematoligist who has yet to determine why this happened.  I've very active and healthy.... this summer I ran a marathon, biked 100 miles, and hiked 100 miles (not all at once lol ) .  I do have some varicose veins that have given me pain over the years.  The plan is to stay on the meds for 3 months and re-evaluate at that time.  Like a lot of the posts I've read on here, I too am experiencing a lot of anxiety and becoming hyper-aware of every ache and pain.  I know that in the grand scheme of life this is not as bad as it can get - waiting in the the hematoligist / oncologist office made me all to aware of that. But while I'm a relatively healthy person (up until now) I am prone to bouts of depression and anxiety.  Exercise has always helped with that and a glass of wine ... lol.  But now, no more wine while taking Xarelto and I'm worried about biking, hiking, and running again.  Just thought that discussing fears here might relieve some of my worry.  Any insights and reassuring thoughts are welcome.  : )

fitnessaddict
fitnessaddict
Hi Legolady5,

I have recently gone through almost the exact same thing. I don't think it's discussed often but I've heard from a lot of people that active women, even young active women, get blood clots. I have a feeling more athletes get them than get diagnosed as it is often shrugged off as something less serious (I'm wondering if dehydration plays a huge role in that?).

For me, talking to a psychologist has helped immensely and my doctors (family and hematologist) agreed that I should begin taking something to help with the anxiety and depression. Talk to your doctor but mine told me as soon as I wasn't in pain I could begin exercising again and have been doing fine for the last month and a half since my DVT was diagnosed. I have also pushed myself (and had others push me as well) to get out and do things, especially when I don't feel up to it. Try doing something you haven't done before like visit an art museum or go to a paint night class. The distraction helps a lot and little by little you'll get there. Hope this helps!
legolady5
legolady5
fitnessaddict - thank you so much for your reply. I too believe that dehydration plays a role in DVT. I drink a lot of water but sweat a lot. My marathon was in June and a very warm day. It's been a week now and the pain has pretty much subsided. I think I'm comfortable going back to walking and lifting weights - not ready to run yet. While I'm not that young (49) I am very active - but young enough to not want to take a medication for the rest of my life. Currently not taking any anti-depressants but have in the past - will probably be something to explore and talking to a psychologist as suggested. Thank you again so much for the advice - means a lot to know I'm not the only one feeling like this.
rmb
rmb
I take xarelto and drink. I don't drink to excess, but I do have a drink or two on the weekend. Ask your doc if that would be ok, once you've been on it a bit. A glass of wine once in a while is probably not going to be a big deal. I'm not a doctor so you can take that for what it's worth. My doc had no issue with me drinking in moderation. I make it sound like I condone drinking to deal with stress, ha ha! I guess I sort of do!

Start slowly trying to walk regularly, even starting for a few minutes if that's all you can stand initially. Then just work up. I think it'll do you some good to get your circulation going and it will help you mentally. Most docs want you walking fairly soon after diagnosis.
fitnessaddict
fitnessaddict
I'm also on xarelto and have a drink or two at a time. Essentially alcohol is a blood thinner in it's own right so you just don't want to drink a lot but I agree with rmb, just ask your doctor or even pharmacist.
rmb
rmb
I think too some of the concern is related to getting impaired, falling down, hitting your head, hurting yourself, etc, and bleeding from that, more than just a risk for a spontaneous bleed. But everyone's body reacts differently so it may be more an issue for some people but not others.
legolady5
legolady5
Thanks to both of you for your replies. I really really appreciate it! As far as the alcohol, I was just wanting to have an occasional cocktail or glass of wine. I asked the pharmacist today and she said she wouldn't. drink at all. Doctor said the same thing ... but I'm kinda thinking that I'm going to be okay with a half glass of wine or beer when wanted. I'm going on vacation in January and would sure love to have a fruity umbrella drink. : )
TossNTurn
TossNTurn
There are a number of interesting articles on the internet about athletes and blood clots. Between dehydration, a lower resting heart rate, and the tendency to "push though" pain, I think athletes can be more susceptible than they think.

Here's one article from the National Blood Clot Alliance that might be interesting:

https://www.stoptheclot.org/news/athletes-and-blood-clots.htm
legolady5
legolady5
TossNTurn - very good info! Thank you!
lupaola
lupaola
Hi Legolady! How is everything going? I also have a dvt just change from warfarine to xarelto due to in these 2 months that I have been diagnosed with dvt I couldnt get the right dosis from warfarine and the INR seré 5.38 INE week then 1,27 and so... Some weeks INR was high and the next week was low so just my third day on xarelto.. How is it working for you? My dvt is chronic now.. :(
legolady5
legolady5
I was still having leg pain about a month ago. The hematologist was concerned that maybe Xarelto was doing it's job (very rare I guess). My leg was re-scanned and they were unable to find original blood clot nor could they find any new ones. That's good - yay! The leg pain has now subsided but still feels slightly swollen - will deal with that when I stop taking the blood thinner. However, now I seem to be having increased joint pain. Hard to know whether this is just old age and the weather getting to me or if the medication is to blame. Anybody else experience increased joint pain while on Xarelto?
msuspartax
msuspartax
It's probably not the xeralto. You're describing post thrombotic syndrome.

The DVT trashed your veneous return valves, and now your circulation in that leg is permanently messed up. It causes the swelling, tenderness, and potentially the joint pain.
legolady5
legolady5
I would understand that if it were in my leg. But the new joint pain is occurring in my fingers, elbows, and ankles.
rmb
rmb
It's too soon after the DVT to diagnose PTS. Most doctors don't diagnose PTS until at least a year out, since it's completely normal to still have some swelling and discomfort up until then that is not necessarily PTS.

I would think if the joint pain was from the xarelto, you would have experienced that soon after starting it. Maybe you are a little vitamin d deficient, maybe a little dehydrated, maybe it's age. Hard to say..
stefan014
stefan014
Hi legolady5
Not sure if you are follwoing this thread anymore, but could you describe the joint pain. is it just joint pain or does the joint swell up as well?
Could be effects of xarelto, but the link between xarelto and joint pain has not been demonstrated.

With respect to the DVT, it seems that it seems that the original clot is gone in less than 2 months, so the risk of vein damage to the popliteal vein should be minor (especially as it as not occlusive) and the risk of PTS should be minor as well.
stefan014
stefan014
One more question. Considering your joint pain, has arthtitis been ruled out? The risk of DVT is much higher among arthritis patients. Surely your doctors must have looked into this possibility?
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