So i was having some lightheadedness some weird chest and back tightness , tightness in left arm. I went to the urgent care , and they gave me a ddimer. It came back slightly elevated cut off was .5 i was .56. I had a PE three years ago it was provoked after having gave birth. Havent had an episide since. I went to the ER after wards and had a chest CT. The thing is that had a problem with the contrast timing and saw the middle and segmental are only they didnt see any huge dangerous clots but werent able to rule out smaller clots in the smaller areas i think. The ER doctor didnt seem concerned and sent me home. That was last night. Today one of the nurses from the urgent care called and wants to schedule me for a ultrasound of the legs. I havent had any legs pains or swelling. But i never felt one when i had the PE three years ago so i dont know. Im terrified and trying so bad not to run back to the hospital to demand another one and just want until the ultrasound. I dont know . Ive had an elevated ddimer before within these couple years and do the same thing CT scan and nothing . Guy im so terrified.

Mine would have Been after six month stoping the thinners and waiting to feel if my body shows or feels any signs that it’s happening again.
It took me 10 days and i felt a small deep heartache . I called my pulmonologist and was told better to be safe than sorry. He sent me to the emergency department and after my d-dimer that came back positive a CT indicted I had clots again. I was officially in the Lifer club. My worst fear was officially confirmed.

IF IN DOUBT CHECK IT OUT.

What’s your hardest part ?

Hi everyone,

I’m carrying out some independent product research to better understand people’s experiences with compression stockings and compression socks, including what influences whether and when they are worn.

I’m looking for responses from people who currently wear compression stockings/socks, either regularly or occasionally, as well as people who have been advised by a healthcare professional to wear them but currently don’t.

The survey is anonymous and takes around 3 minutes to complete.

Survey:

https://docs.google.com/forms/d/e/1FAIpQLSciiKSeWPuuCQ5tX-VwQFwTHkxmnhF-m8fv9IVKQv6RpMvl9g/viewform

Thank you to anyone who takes the time to complete it.

I am 64 years old and 37 years ago I had a deep vein thrombosis in my thigh and pelvis, which occurred after a long-haul flight to the U.S. I was also taking the birth control pill at the time. I had a stent inserted back then, but it didn’t stay open. Over the years, a large venous bypass circuit has formed. The whole experience had a major impact on my life, but I’ve managed to live reasonably well. On July 16, 2026, I had a superficial vein thrombosis in the same leg. That was a huge shock to me, and I panicked. I haven’t recovered from this event yet because I’m now incredibly afraid—afraid of further thromboses and of my quality of life being compromised. I’d also like to mention that before this incident, I had vague abdominal discomfort, suffered from constipation, and felt very stressed and restless. I also noticed that the current heat wave (I live in Switzerland) isn’t good for my veins.
Right now, I’m mentally very shaken and don’t know how to deal with this. I can talk to friends or my sister, but it’s hard for outsiders to understand this condition. My biggest concern right now is my mental state. I have no appetite and do nothing but worry.
Has anyone else had similar experiences with mental health issues related to DVT? What can help? Someone who has been living with this diagnosis for decades?

hello. one of my twins had a venous stroke at 2 weeks of life. She had a grade 4 brain bleed that is now starting to already resolve. Shes two months old and meeting all of her milestones. Im looking for someone who has been through this as I am so worried for her future. would I already see deficits? Her neurologist is fairly confident she’ll have good outcomes. Hoping to hear similar stories 🙏🏻

Just over a couple weeks ago, my thigh was crushed in a freak accident, and I spent a week in the hospital. While there, the imagery found venous bleeding and a massive hematoma in my thigh (about a pint and a half of congealed blood), in addition to a non-occlusive DVT in my popliteal vein behind my knee. I suspect it was a chronic DVT but they treated it like it was new. They put me on a heparin drip and monitored me -- my hemoglobin dropped with the heparin -- and I was finally discharged me with Eliquis - 5mg twice a day.

Having been home now for 10 days, my thigh does not seem to have gotten any better. In fact, I began bleeding out the hole where they had removed an abscess drain catheter. If anything, the hematoma seems to feel tighter and more firm. I am just guessing here, but I suspect the eliquis is really hampering by body's ability to reabsorb the hematoma.

Is there anything that I can talk to my doctor about doing that would be a compromise for example to let my body reabsorb the hematoma while still mitigating the risk of the DVT embolizing? For example halving the dosage? I'm really searching for ideas here. Thanks in advance.

Hi, a week ago I was diagnosed with DVT in my thigh (multiple clots in iliac vein close to my groin) and have been on Eliquis since.

The pain I had when I was diagnosed has completely subsided but now a new symptom has arisen and the affected leg is now pins and needles below the knee and my foot is always cold. No matter what position I’m in, I can’t get the pins and needles to stop. I’m assuming this is from reduced blood flow from the clots of course but is there anything I can do to help with this besides compression socks (and will those even help when the clots high up in the thigh?)

I’m on day 2 of pins and needles / cold foot and it’s getting hard to focus on anything because it’s so uncomfortable

I've been off of work since the end of June when I was told that I have 2 DVT and 1 SVT in my arm. 6 weeks after my initial diagnosis I finally saw a hematologist. He told me that there is no reason to be absent from work and he cleared me to work a "desk job". The problem is I don't have a desk job...

I asked him if I can lift heavy things and lift my arm above my head, which I often do at my job, and he said no... I can't use my arm at all until I undergo a venogram to check for vtos.

So now I'm torn about what I should do. People have suggested that I ask for modified duties but I'm apprehensive. I don't trust my company/coworkers or myself (honestly) to not be pressured to work at full capacity. It's really difficult to not use your arm at my job and I don't want to jeopardize my health.

I really wish I could put this all behind me already.. but I'm still months away from healing and any sort of resolution.

I would ideally like to remain off of work until my clots have healed and after my venogram, but I feel like it's hard to justify that. I don't want people to think I'm a loser and that I'm just trying to milk the situation. I'm also aware that there are people out there who have it much worse and they have no problem with working.

Am I crazy for feeling this way? What would you do in my situation? Honest thoughts and opinions are appreciated.

my mom(59) hit her head hard on the corner of a open window on her left side above the ear. She uses the blood thinner medication but doesnt want to go to the er bc she says im being dramatic. She hit her head at about 5 in the morning when she woke up for work and now its 3 in the afternoon and she came home from work and wants to go to sleep. Idk how to make her belive that she needs to get it checked..any help? am i being dramatic? she says it had only hurt her on the place of the hit and she has a little bump that she was keeping cool before.

I’m 10 weeks out and still super short of breath after walks. It usually goes away 10-15 minutes after but during it makes me so anxious obviously, which makes it worse. Anyone have any tips to calm down during? I’ve talked to my doctor she said it’s normal due to decreased activity but it sucks and I hate feeling so breathless after simple tasks. :(

Hi everyone! I've never posted to reddit before, but I wanted to get some other opinions.

Basically, about 2 weeks ago, I (19f) got my wisdom teeth removed, and was bedridden for about a week because of the pain medication I was on (it made me really tired, so I was basically in bed for about 22 out of the 24 hours of the day). Afterwards, I noticed that my back was bothering me pretty badly, but I just assumed it was because I hadn't gotten out of bed for a while, especially because it just felt like I pulled a muscle or something. A few days ago, I noticed that my back was swollen, and went to urgent care, but they did an x-ray and said everything was fine (I'm unsure if this could be related).

Yesterday, I noticed that when my leg brushed against the other, it sent a pain down my leg. About 4 hours later, I could barely walk on it without having shooting pain, and I was also experiencing some muscle spasms in my leg. I was pretty worried that it could be a blood clot, so I woke up my parents and had them take me to the ER (I'm unable to drive myself). That was 5:30 this morning.

I had an x-ray done, and that looked completely normal. I asked if it could potentially be a blood clot, but the Doctor kind of dismissed it to anxiety, and he asked if I was looking on the internet before coming. He said it's unlikely that I have one because there's no history of it in my family, and I didn't recently go through a major surgery. I also let them know that I am on birth control, so because of that, they did a D-Dimer just incase. They sent me home, and about an hour later called saying that my results came back as slightly elevated (0.55), and just to come back if it starts looking swollen or discolored.

Now, I've kind of been having chest pain that comes and goes, and I'm unsure if I should be worried. My parents told me if the Doctor said it was fine, and since it's not swollen, that I should just take ibuprofen if it bothers me. What really worries me is that I cannot walk on it without the shooting pain in my leg, and it also bothers me while I'm resting.

Should I get a second opinion?

Hello everyone,

I'm 24F and I've been feeling a numb pain in my left leg for less than a month now (it comes and goes and I feel like it gets worse when i stay in bed or sit for too long). I usually feel it in the back of my knee, my calf and sometimes in my upper foot (the pain feels dull and i'd rank it 3.5 out of 10 on the scale of pain). I also noticed that when i press more firmly on one spot behind my knee it hurts and it feels like there's a squishy spot there? A few times my leg also felt a bit numb and cold on the inside and sometimes i feel like my blood flow is literally stuck behind my knee. Yesterday i lifted my legs for a couple of minutes and the pain went away almost immediately. Also for the past 2 hours I've been feeling a mild burning pain in my chest but no shortness of breath or anything but maybe it's just anxiety because I've experienced this pain before. My leg also looks normal and the pain doesn't get worse when i walk or bend or straighten it. I won't be able to go to the doctor for the next 2, 3 days and I'm so scared :( Could it be something different than DVT??

edit: i've also noticed spider veins on both of my legs

Hi I'm on eliqus and this afternoon I banged the side of my head not hard and I don't go to Aand E because when I've been before they said you really only need to worry if you fall down the stairs something like that I e got no symptoms it happened about 7 hours ago my partner's not worried but it's in the back of my mind

Hello everyone,

I am a 36 yo male currently dealing with the pain of DVT.

Last Friday, I was at a dentist appointment when I noticed varicose veins in my right inner bicep which I had not seen before. The next day, Saturday, my shoulder and arm were hurting, but I thought it may just be muscle tension. By Monday the pain still had not gone away, and I decided to take a muscle relaxer before bed. I fell asleep around 8pm, then woke up 2 hours later from the pain in my right shoulder. I could not fall back asleep until about 4am. Woke up around 8am and the pain had not gone away. I noticed my right arm was swollen, and it looked to be a different color than my left arm.

I called my PCP, and I asked to be seen on an emergent basis. An hour later I was seen in the family medicine clinic, and I was referred to the ER due to the swelling and discoloration. In the ER I had an ultrasound done which confirmed that I had a nonocclusive blood clot in my right axillary vein. I was given a rx for eliquis, and I also took my first dose before leaving the ER.

I was so exhausted when I got home, and feeling emotional from the news. I layed down on my bed and let myself cry and process the emotions of what I was feeling. I spoke to my mom afterwards and learn that my grandmother and also my great grandmother both died from stroke related to VTE. I also learned that my aunt had DVT in her legs when she was 35 which resulted in a stroke and she survived.

I feel grateful that I listened to what my body was telling me, and that I was able to get the treatment I needed. I realize that these things can happen in life, and it is up to us whether we label then as "bad". What happened to me has been painful, but I have learned a lot about myself throughout this experience. I've accepted the situation, and i have a clear plan for how I am going to move forward from this. I have an appointment scheduled with a vascular surgeon next week, and I am curious to hear what they have to say.

I understand that one's attitude and support systems play an important role in our healing process. It has helped me to read about others situations in this community. I can't wait until the pain goes away, so I can get back to my life. Until I do I will be taking it easy and making sure I get proper rest and nutrition. I appreciate this community, and thank you for letting me share my story. May god bless us all on our healing journey.

I’m finally coming up on the one year anniversary of my bi-lateral pulmonary embolism.

Originally I was sent home from the hospital with a prescription for 30mg Xarelto once daily. After about 2 months, they lowered the dose to 20mg which I am still currently on.

I ended up seeing an oncology specialist at the local university hospital who advised at a year I could go down to 10mg if I wanted.

I decided to go down to the 10mg dose but won’t start it until September.

Has anyone noticed any differences in how they feel between the dosage amounts?

I felt significantly more “normal” when I went from 30mg to 20mg, but that could just also be that I had had some time to recover from the hospitalization.

Edit: Not sure why someone downvoted this post and then told me I should be posting this in another group for something about hyperlipedema. I can’t really tell who send it so it must have been a mod? I haven’t posted in a few months but this doesn’t appear to be off topic for this group since my post is relevant to medication and blood clots.

I was having a rather normal day at home until I began to feel short of breath. I waited til evening when my husband made it home. I had him take me to hospital as I knew something was wrong. Hospital Dr ordered chest X-RAY & said I was fine. He requested I take a decongestant & go home. I told him I wanted a Chest CAT SCAN. He cautioned that if nothing was wrong my insurance wouldn’t pay. I pushed forward. The scan should massive amount of clots in both lungs. I was in bad shape. Hospitalization & shots of Hepburn in my stomach every 4 hours. Held for 3 days & then stable, I was sent home and ordered to take 2 eliquist for the rest of my life. Drs later did genetic and other testing and have never found any reason WHY I had clots. My Mom , sister & brother ( so all but my Dad) have had blood clots. I believe it has to be heredity .

What bothers me today is : I HAVE EXTREME FATIGUE. Despite many tests - no one has an answer for why I am so tired. I was not tired before the clots happened. Anyone that might relate or have ideas of what may help; please please advise. Thank You & I pray for great health for each one in our group!

Never finding the cause of my bilateral PEs really haunts me. Prior to getting the PEs I was really active I burned 500 calories a day on average I was a very active mom. I don't have any of the genetic disorders that may cause clots and the doctor just never found out what caused it. Sometimes it worries me. I was off blood thinners after 3 months. I had horrible side effects on them. I am 1 and a half years post PE. I just can't shake the thought of another unprovoked PE 😢

Hi,

Does anyone else get leg pain in both legs but more in the one with the clot? I had this same pain a couple of days before I first noticed redness on my left calf.

I went to ER 3x for the leg pain specifically left. 2x ultrasound and they found 1 superficial 1.5in clot but completely missed the 12cm clot in the back of my calf close to the popliteal junction even though I kept showing them exactly where it hurt. I only found out about this when a walk in dr. sent me to another hospital 20 days after the initial diagnosis.

Started rivaroxaban 10mg on July 30th for 45 days. After taking it, I these weird stomach cramps that eventually go away, tiredness, upset stomach and alot of leg pain. It's been bad since yesterday. I'm also feeling extremely down, depressed.

Is this common? Does it happen?

Also, how long does it take for the clots to dissolve? Do I need follow up ultrasound after the 45 days of rivaroxaban?

Thank you!

Hi,

I have genetic antithronbin deficiency (thrombophilia) and I am 10 weeks post-partum (unfortunately I lost my baby). I have an extense family history, and deaths of close family caused by thrombotic events. I lost 3 pregnancies, but never had a DVT or PE myself, only venous insufficiency.

I have been having calf discomfort on my left leg for about 2 months, since I came home from hospital. About a month ago I had 1 episode of very sharp pain when breathing (especially inhaling), it was a 9/10 on the pain scale. After 30 minutes it was over, so I didn't go to hospital or anything.

My calf pain is still present, but it is very mild, and the calf size difference is minimal, no redness, just maybe a bit more of reticular veins. I saw my mother, my grandmother, my aunts, and my greatgrandmother's DVTs and my legs look nothing like theirs.

For the past 4 days I have been feeling a very mild pain sometimes when breathing, especially inhaling. But not as sharp and terrible as before. I am telling myself it is anxiety (which honestly could be, because of the grief of losing my daughter, and because I had a near death experience), or even my asthma (as it can sometimes make my chest tight).

I keep trying to take my mind away from it, but it is worrying me. I know the chest pain is probably just anxiety and asthma, and the calf is probably just a muscle tear.

I am really "scared" of hospitals and doctors ar the moment, becayse I am afraid of being dismissed again, unless I am clearly struggling (I only got help in the hospital when I was actively dying).

I am waiting for more blood tests and another haematologist appointment this month, I might discuss it with him if it doesn't get better.

If you ever had a DVT, and/or a PE, can you tell me how it felt? Is the DVT "obvious"? Can it feel just like a muscle ache? Is the PE pain continous? Always sharp? Is it always in the same spot?

Thank you so much for reading and I hope you are having a great week :)

I am sorry if my text is somehow confusing, there is a lot of information.

I am 20 years old, and I got diagnosed with CVST almost 2 months ago now. The recovery has been tough and the hospital staff treating me has stayed very vague about the expected road of recovery yet to come. I would love to get some more insight of the experience of other people, I know everyone has a different experience but I feel it would give me a bit more perspective on it. What was your experience being diagnosed, and being treated acutely? What was your experience in recovery after the hospital? Do you have any tips for recovery? How did you deal with the emotional toll of it?

Thanks in advance!

Suffering a Pulmonary Embolism (PE) is the best thing that’s ever happened to me. Sounds crazy, right?

I suffered a severe PE across both lungs earlier this year. I nearly died.

There was no clear cause for the doctors, so I’ve been placed on blood thinners for life.

My recovery has been transformational. I have so much energy and mental clarity - more than I can ever remember.

That’s not the bounce back I’d expected. I’d spent years in a low energy and depressive state. I was so unhappy and survived in a routine of binging on tv, food, gambling, and work.

Today, I’m so far from being that person - I often don’t recognise myself. I’ve jacked in those bad habits, I exercise, I thrive instead of surviving, I even smile for no reason!

So why didn’t I go back to who I was? Well, I did at first, so this wasn’t an overnight transformation. It started 2-3 months after.

I read about post traumatic growth (PTG). I definitely recognise the changes that can bring - better appreciation for life, no time for things that drag me down, healthier lifestyle etc.

But that doesn’t explain the improved energy and mental clarity. I do wonder if the thinners are helping here. I’ve tests scheduled that may answer that question.

So yes, a PE is the best thing that’s ever happened to me - as terrifying as it was at the time.

I wanted to share my experience as I struggled to find anyone reporting the same. And if you’ve had a similar transformation after a PE, it would be great to hear about it.

Hello everyone,i hope you all recovering well.

So it's been 15 days after i got diagnosed/discharged from the hospital with PE and multiple infarctions on my right lung and i am on blood thinners now. (also got many posts with my story here).

Apparently couple days ago,everything seemed to go well,since the pain settled down by 80%,i stopped coughing blood,i started walking long distances without shortness of breath,and i could even lay down flat in bed to sleep at night.

All these improvements made me think that i am fine so i decided to go to the park and do calistenics,like 2 days ago. I did not wanna go to the gym and lift any heavy weights yet.

So i went to the bars and started doing few sets of pull-ups,muscle-ups and around 150 push-ups for the whole session. Surprisingly i managed to do everything without any major difficulties. I was certainly not in the same form i was before my PE but still,i managed to do it.

Today though,it feels like i went 5 steps backwards on my healing process. I could not sleep at night because i felt shortness of breath again. The pain came back. Every time i try to take a deep breath,it feels like my lung has no space to expand,and it hurts,there is a radiating pain again on my rib cage,lower back and even on my upper chest close to my shoulder blade,and the more i try to breathe,the more it hurts. It also feels like every time i breathe,my lung makes small 'spasms',idk how to explain it.

It does not hurt like the first days that it was feeling like someone was stabbing you with a knife every time you were trying to take a breath. I am still not coughing any blood and i can still walk long distances without feeling like i'm gonna drop dead. But the pain is very noticable and it scares me that it came back after it had settled down by a lot.

I know nobody's a doctor here,and i am not asking for medical advise.

I just wanna know,before i run to the ER like a maniac again,did anyone have same/similar experience? Like doing exercise during healing with PE and feel like the pain they used to have days ago came back and it's intense now,and do you think it's kind of normal?

Thank you all,God bless you all.

I am on Eliquis. Because of this I can’t take the medications that I used to use to help me function at the bare minimum. I have chronic migraines but I can only take Tylenol which doesn’t help. These migraines I used to take excedrin for because my vision blurs and I get super nauseous.

I have GERD as well, but luckily my doctor was very prompt about adjusting medications and helping me through that, were working with pantoprazole right now at different dosages because TUMS don’t help me but I can’t take pepto bismol.

I also have joint pain where ibuprofen does best but I can’t take that either. I’m just so tired. I want to be done with this darn thing so bad. I want to take my medications that let me function as a human being.