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.
At the end of Oct, I had 3 DVT clots which broke apart and caused many clots on both sides of my lungs. I'm a runner, and my breathing felt strange so I went to the ER. I was on birth control pills.
I came home 2 days later with Xaralto and have been taking it since. My hemo did bloodwork a couple weeks in and found lupus anticoagulant, but said I would need to be tested again in Feb and go off the Xarelto for 2 days prior.
The problem is that I feel I've been getting worse as the weeks go on. I don't have any pain in my DVT leg or my chest anymore, but the rest of me hurts. My joints and muscles are so achy, I can barely move sometimes. I have burning sensations in my other leg, headaches, neuropathic random pains that come and go.
I was doing exercise after the DVT/PE, but I've become less and less capable, less and less strong. I can't run, and can barely lift weights. I struggle in a yoga class. In November I was good at all these activities.
The hemo says these side effects aren't from the Xaralto (except headache). Everyone likes to point the finger at anxiety, and yea I am somewhat anxious, but it's not causing all this. The other idea is the lack of estrogen. I had to stop the pill right away, and have other menopausal symptoms, but again I feel my symptoms are extreme.
Has anyone else experienced this or have any thoughts or suggestions?
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
It takes lots of time to heal from DVT's. I have had three separate incidents in the past 18 years and I am on Warfarin for life. I feel your pain. This is hard.
Maybe check in with your primary care doctor. Maybe there is something else globing in, like anemia, vitamin d deficiency, thyroid issue, etc.
Maybe you should see about hormone supplements, but being on the pill Is never a good option in my opinion, there are a number of risks associated with it.
I do think you should see your dr. again and talk options. In the end it is you that has to deal with all the horrible stuff happening to/in your body, not your doctor.
Warfarin wasn't hard for me to manage. Once I got exercise and nutrition where I like it (and I did half-marathons, so I get the exercise level you're used to), the INR didn't wildly swing. But remember, that was my experience and my body chemistry. I hope you find what works for you and feel better soon!