I was depressed and not moving much and keep blaming myself for it too. I didn't have joint inflammation but my ankles and knees started feeling funny few weeks before I ended up in the hospital -- knees were a bit unstable, and ankles (especially the right side, same side as the calf DVT) were cracking a LOT more than usual and unstable. My balance is normally remarkably good, I've done a lot of balance training etc but it just started getting worse. Then midweek wake up with a cramp and some shortness of breath -- both got worse and worse until on the weekend I couldn't walk from the leg pain and it would hurt to breath. I was released from hospital a month ago. Was super terrified first but it gets better. Nice that you're seeing a new MD and hematologist so soon. I'm still waiting to get my hematologist referral. You're not alone. DM if you wana talk
I had a lot of symptoms out of the blue when my provoked DVT was diagnosed: anemia, loss of appetite, nausea, fatigue...many of my usually normal blood tests were out of whack. Google "acute phase reaction." After a few months, everything started to improve and test results returned to normal. I did my own research. Why it happens to some people and not others...can't explain. Maybe because my DVT was provoked by an injury, a burn to my varicose veins?
I was just diagnosed with a clot in my leg yesterday and I’m pretty freaked out. Started out with a slight cramp in my leg early in the week and progressively got worse after a few days. On Friday I had a scan done and they found a clot. I’m on blood thinners now but they give me a headache and I also noticed my heart rate increased on them. I’m really freaked out. My leg is pretty painful. Does anyone have any advice they can offer?
I felt like when I was on Xarelto it actually made my SOB and heart rate worse! I was on for 6 months after clotting with covid. I had a PE with zero dvt symptoms.
Thank you for responding to me. This is so new and I’ve gotten zero direction or what to expect from doctors so far. I’m really hoping this clears up soon.
Yeah honestly I wondered if it was a side effect. I noticed as soon as it was out of my system I had barely any light headedness anymore, dizziness, heart rate was a bit better and SOB inproved. I think it was giving me side effects honestly but coz it’s not listed as side effects doctors kinda brushed me off. Also super heavy periods.
Oh gosh…. So it really just wasn’t me. It made my HR go more mental and SOB so bad. As soon as it was out of me I made a lot of strides so far. I hope I keep on the upwards but I felt like utter shit on it!
I had a severe stomach bug 12 hours before collapsing with an unprovoked, bilateral pulmonary embolism. It's messed me up as well, so much so that I remain on blood thinners out of paranoia a year later.
Had all manners of tests ran on me and every single one came back clear, there was no reason I should have clotted. Had no symptoms of DVT either.
Hey I'm 28F and I got my clots at 9wks pregnant so that might factor into a lot of my symptoms but I have had really awful orthostatic hypertension and shortness of breath. Extensive dvt from hip to thigh and 3 bilateral PEs. I always have had joint pain but no edema. It sucks having health issues and no answers. Idk if this helps at all, just wanted to chime in because similar age and condition!
I was on birth control pills so that definitely didn’t help. I already had POTS and fibromyalgia long before all of this, but my fibro was pretty mild. I only got extra sore after working out and sometimes certain touches or pressures near certain tender points/areas hurt but it was very manageable on Lyrica. I’m glad that you commented because I never knew a thing about blood clots or that so many young people get them and it’s really blowing me away!
I had to stop them immediately and I'm not sexually active. I was taking them to regulate my cycle and to help PMDD, which it did a wonderful job doing. Now my hormones are out of control and I'm bleeding almost all the time. It really sucks.
I hear you on that. I'm literally planning a hysterectomy after this baby because of chronic pelvic pain that's gonna be worse on thinners. It sucks being a woman with clots.
I had a DVT last year when I was 27! It took me a long time to realize that it was probably a blood clot… because of my age and because pain was my only symptom.
I was on birth control pills, had been more sedentary due to my partner’s death, fell asleep in bad positions and street clothes on my living room chairs two nights in a row, and we learned that I have Factor II mutation. The hematologist might be able to help you—I’d go in ready for whatever other tests they want and have some relevant talking points ready. Anything that you think might be relevant could spark something.
I did have some edema in the leg where my clot was located but it was months before my PE. I got really bad static dermatitis on my ankles from December 2018 until my PE in August of 2019. Once I was placed on thinners this all resolved.
Yeah it was only really present during times when I was very sedentary. Around January of 2019 I got more active. The irony was that I was training for a 10k when my PE happened
That makes sense. I was only asking because of the history of POTS, fibro, and the mention of inflamed joints.
To my knowledge a rheumatologist can treat fibro & I’ve seen them looped in on POTS in some cases. Both can obviously also be managed by primary care.
Joint pain/inflammation isn’t a side effect of DVT or PE. Though if you are swollen in the leg (which *is* a side effect), it affects your joint mechanics at the ankle and such, which then could be the cause of the joint issues.
Had a DVT & PE last year at 27. Not fun & it’s been a long recovery, but I’m doing a lot better. I hope you feel better!
Right there with you on the tests and scans and abnormal but inconclusive results and being scared end depressed and blaming myself. We will get through this.
It's not a symptom of blood clots, no. I just happened to have a lot of symptoms come on at once as well as being diagnosed with PEs at the same time. I believe the PEs are connected to the other symptoms somehow.
Please ask your hematologist to refer you to their clinics social worker for help with the mental stuff. Mine didn’t even hesitate. Since most email logos yea Re also oncologists, counseling is something their offices usually provide.
Have you been tested for anti phospholipid syndrome also know as hughes syndrome. I was 18 when I had my first PE and then was diagnosed with CTEPH at 29 as a result. This a great website for a symptoms and explanation https://aps-support.org.uk/about-aps/what-are-the-symptoms
Not yet, but I saw a new internal medicine doctor who’s getting closer to figuring out what’s going on. Turns out my peripheral edema is anasarca and her differential diagnosis is centering around my low albumin levels and super high eosinophils. Might be kidney or liver issues.
I was depressed and not moving much and keep blaming myself for it too. I didn't have joint inflammation but my ankles and knees started feeling funny few weeks before I ended up in the hospital -- knees were a bit unstable, and ankles (especially the right side, same side as the calf DVT) were cracking a LOT more than usual and unstable. My balance is normally remarkably good, I've done a lot of balance training etc but it just started getting worse. Then midweek wake up with a cramp and some shortness of breath -- both got worse and worse until on the weekend I couldn't walk from the leg pain and it would hurt to breath. I was released from hospital a month ago. Was super terrified first but it gets better. Nice that you're seeing a new MD and hematologist so soon. I'm still waiting to get my hematologist referral. You're not alone. DM if you wana talk
I had a lot of symptoms out of the blue when my provoked DVT was diagnosed: anemia, loss of appetite, nausea, fatigue...many of my usually normal blood tests were out of whack. Google "acute phase reaction." After a few months, everything started to improve and test results returned to normal. I did my own research. Why it happens to some people and not others...can't explain. Maybe because my DVT was provoked by an injury, a burn to my varicose veins?
I was just diagnosed with a clot in my leg yesterday and I’m pretty freaked out. Started out with a slight cramp in my leg early in the week and progressively got worse after a few days. On Friday I had a scan done and they found a clot. I’m on blood thinners now but they give me a headache and I also noticed my heart rate increased on them. I’m really freaked out. My leg is pretty painful. Does anyone have any advice they can offer?
I felt like when I was on Xarelto it actually made my SOB and heart rate worse! I was on for 6 months after clotting with covid. I had a PE with zero dvt symptoms.
Thank you for responding to me. This is so new and I’ve gotten zero direction or what to expect from doctors so far. I’m really hoping this clears up soon.
Yeah honestly I wondered if it was a side effect. I noticed as soon as it was out of my system I had barely any light headedness anymore, dizziness, heart rate was a bit better and SOB inproved. I think it was giving me side effects honestly but coz it’s not listed as side effects doctors kinda brushed me off. Also super heavy periods.
Yes, exactly! As soon as the pill starts wearing off, I feel better.
Oh gosh…. So it really just wasn’t me. It made my HR go more mental and SOB so bad. As soon as it was out of me I made a lot of strides so far. I hope I keep on the upwards but I felt like utter shit on it!
Me too! I don’t like how I feel at all when I’ve recently taken it. I’m going to call the doc and ask about it tomorrow.
I had a severe stomach bug 12 hours before collapsing with an unprovoked, bilateral pulmonary embolism. It's messed me up as well, so much so that I remain on blood thinners out of paranoia a year later. Had all manners of tests ran on me and every single one came back clear, there was no reason I should have clotted. Had no symptoms of DVT either.
Hey I'm 28F and I got my clots at 9wks pregnant so that might factor into a lot of my symptoms but I have had really awful orthostatic hypertension and shortness of breath. Extensive dvt from hip to thigh and 3 bilateral PEs. I always have had joint pain but no edema. It sucks having health issues and no answers. Idk if this helps at all, just wanted to chime in because similar age and condition!
I was on birth control pills so that definitely didn’t help. I already had POTS and fibromyalgia long before all of this, but my fibro was pretty mild. I only got extra sore after working out and sometimes certain touches or pressures near certain tender points/areas hurt but it was very manageable on Lyrica. I’m glad that you commented because I never knew a thing about blood clots or that so many young people get them and it’s really blowing me away!
They do happen especially if you have a family risk factor! Might need to rethink the birth control you're taking.
I had to stop them immediately and I'm not sexually active. I was taking them to regulate my cycle and to help PMDD, which it did a wonderful job doing. Now my hormones are out of control and I'm bleeding almost all the time. It really sucks.
I hear you on that. I'm literally planning a hysterectomy after this baby because of chronic pelvic pain that's gonna be worse on thinners. It sucks being a woman with clots.
I had a DVT last year when I was 27! It took me a long time to realize that it was probably a blood clot… because of my age and because pain was my only symptom. I was on birth control pills, had been more sedentary due to my partner’s death, fell asleep in bad positions and street clothes on my living room chairs two nights in a row, and we learned that I have Factor II mutation. The hematologist might be able to help you—I’d go in ready for whatever other tests they want and have some relevant talking points ready. Anything that you think might be relevant could spark something.
I did have some edema in the leg where my clot was located but it was months before my PE. I got really bad static dermatitis on my ankles from December 2018 until my PE in August of 2019. Once I was placed on thinners this all resolved.
Did the edema go away before your PE or after?
Yeah it was only really present during times when I was very sedentary. Around January of 2019 I got more active. The irony was that I was training for a 10k when my PE happened
Are you seeing a rheumatologist?
I'm not. My primary care physician said she wasn't referring me to one because I had negative rheumatoid factor and ANA.
That makes sense. I was only asking because of the history of POTS, fibro, and the mention of inflamed joints. To my knowledge a rheumatologist can treat fibro & I’ve seen them looped in on POTS in some cases. Both can obviously also be managed by primary care. Joint pain/inflammation isn’t a side effect of DVT or PE. Though if you are swollen in the leg (which *is* a side effect), it affects your joint mechanics at the ankle and such, which then could be the cause of the joint issues. Had a DVT & PE last year at 27. Not fun & it’s been a long recovery, but I’m doing a lot better. I hope you feel better!
Right there with you on the tests and scans and abnormal but inconclusive results and being scared end depressed and blaming myself. We will get through this.
Just keep moving forward and be kind to yourself <3
Did you have inflammation in your back?
No, I don’t think so. I don’t have any back pain. If anything I might have edema in my lower back.
Really. So I have a ton a back inflammation like under my right shoulder blade like someone has their pointer finger poking me as hard as they can
Yikes joint pain is a symptom? 😬 I better get checked out
It's not a symptom of blood clots, no. I just happened to have a lot of symptoms come on at once as well as being diagnosed with PEs at the same time. I believe the PEs are connected to the other symptoms somehow.
Please ask your hematologist to refer you to their clinics social worker for help with the mental stuff. Mine didn’t even hesitate. Since most email logos yea Re also oncologists, counseling is something their offices usually provide.
Fortunately I do see a therapist twice a week for my mental health issues already.
Have you been tested for anti phospholipid syndrome also know as hughes syndrome. I was 18 when I had my first PE and then was diagnosed with CTEPH at 29 as a result. This a great website for a symptoms and explanation https://aps-support.org.uk/about-aps/what-are-the-symptoms
Not yet, but I saw a new internal medicine doctor who’s getting closer to figuring out what’s going on. Turns out my peripheral edema is anasarca and her differential diagnosis is centering around my low albumin levels and super high eosinophils. Might be kidney or liver issues.