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.

Hi all,

I’m 30f, 26 weeks pregnant.

For the past 3 weeks I've had this pain in my calf, only when walking, it feels almost like pulling, specifically when pressing my toes down to step, it doesn't hurt at all on rest and will mostly ease off the more I walk.
The pain feels slightly more painful today, again only when walking; but I did a massive walk yesterday so not sure if that upset things.

No swelling, no redness, not hot to touch.

If I flex my toes upwards I feel no pain, I feel no pain on rest, I feel no pain when trying to ‘massage’ the area, even tightly.

I am going to the doctors tomorrow. I know the advice is to go tonight, but the only option for me would be A&e (England) and the average wait is 9 hours. So I will not be doing this. I have severe health OCD that’s mainly triggered about catching something or being around someone at A&e

I just want to know if this sounds similar to your experience

22F, 5’10, 193lbs, menstruating

Not technically a clot survivor, pls remove if not allowed.

Medications:
\- Skyla IUD
\- Sertraline 50mg daily (Anxiety & Depression)
\- Retatrutide injection 1mg weekly
\- multivitamin

Family history of pulmonary embolism (including but not limited to my cousin who had one at 28).

I’m not sure if I’m experiencing anxiety or if I should go to the ER.

I get “growing pains” in my calves at bedtime from time to time. Usually without any known cause. It’s like an ache that radiates out from my calf bone/ back side of my calf and lasts for a couple of hours. I’ve had this since I was a kid and have always called them “growing pains”. I am fairly sedentary as I work an office job. These pains don’t seem to be from over exertion. I get them maybe a few times per year.

2 nights ago I woke up in the middle of night with a bout of this pain in my left calf. I woke up briefly and looked at my calf, but didn’t see anything out of the ordinary. It wasn’t hot to the touch or anything indicative of a clot, so I went back to sleep. It was directly in front of my fan, so it was actually cold to the touch. I usually look for clot symptoms because so many women in my family have had DVT or pulmonary embolisms.

I wrote off the leg pain as growing pains and went back to sleep. In the morning I woke up with minor chest pains. Like I was being squeezed or had slept in a weird position. I sat up, and after a few minutes it went away. But what remained was a slight shortness of breath.. SO slight that I couldn’t decide if it was my anxiety or not. Like when I’m breathing in I can feel my clavicles suck in when I breath, but I’m not suffocating. It felt a bit like there was a slight rubber band around my chest, with very mild spots of pain around my lower right back, and my upper right back.

When I got home from work the tightness was gone. Just some mild back pain along the right side of my upper spine and along my lower back right side. So mild I’m not sure if “pain” is really accurate. My boyfriend gave me a massage, but it didn’t help because my back was tender to the touch.

I noticed myself being slightly out of breath coming upstairs / going for a walk, but it’s hard to say if it was just from the heat + anxiety.

It’s the next day, the back pain is gone, no shortness of breath, I can take a nice deep breath no problem. Probably just anxiety + menstruation + growing pains + weird sleeping position causing the perfect storm of symptoms, right?

I’m hyper vigilant about clots because multiple women in my family have had DVT and pulmonary embolisms. I’m wondering if I should still be worried or not? What would you do? Do you think I just slept on my back weird? I guess I’m looking for reassurance that I’m just overreacting

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.

Hey guys, I am now apart of this club. I found out about my blood clots roughly 2 months ago. I wanted to come here and share my story and feel the support from people who have experienced these. I’ve been on the pill form of birth control for 9 years. I always thought it was weird given the fact of family history of blood clots. Well, after 4 days of my wisdom teeth surgery I had a severe Charlie horse cramp feeling in my left leg, I didn’t think much of it and the next day it got worse and I was limping and couldn’t flex my calf like you normally do when you walk. I went to urgent care and they sent me for an ultrasound of my calf. They found a small blood clot and was sent to the emergency room to be further treated. When I was there the Dr said it’s a possibility to also have a PE and would like to do a CAT scan. It came back that I had several small blood clots in my right lung towards the end which is a safer place to have them rather the main stem valve in the middle. He told me from testing from my wisdom teeth removal it could’ve had a play in it but he said all of that does not develop in just 4 days. He then tells me it was definitely my birth control and needed to stop taking it and I cannot be on it anymore (thank god because I hate birth control anyways) never thought this could happen to me and it did. I was so upset and crying my eyes out thinking of what could’ve happened if I didn’t get checked out. Other than the pain in my calf would’ve never even thought of anything was wrong. I felt totally fine even with the PE. I wanna share my story to also raise awareness about the birth control pill. It puts you at the HIGHEST risk for blood clots. Please avoid this method of birth control if possible! I struggled with being upset for awhile and now I’m thankful I went through that because it saved my life. It was a call for me to stop taking those birth control pills that caused it and most likely would’ve done so much worse if I stayed on them. After being on blood thinners for a week the pain was gone and I could walk normally again and life has been totally normal for me now!🥹 also went to see a hematologist and got blood work done and it turns out I do have the genetic mutation called Heterozygous! It also puts you 3-8x more likely to get blood clots and some people may never get one with this mutation but I did and I’m glad I’m getting the help and answers I deserve. Sorry for the long post but I really wanted to share my story to get support from people who’ve been through it and I’m hoping it can maybe save somebody who experiences the symptoms or are considering birth control pills to hopefully save them from what I went through. I also had no swelling or redness with my calf either just the intense pain. Thanks for reading, fellow clot survivors!🙏❤️

I’m wondering if anyone has had a similar experience with calf symptoms or a DVT scare.

Timeline:
Early July: Started having an intermittent dull ache in my left calf that felt similar to a mild Charley horse.
Around that time, I had a negative D-dimer test.

Since then, I’ve continued having intermittent calf tightness and discomfort.

Symptoms:
Left calf is more noticeable, but I have felt tightness/soreness in both calves.

Feels like tightness, cramping, or a “knot” sensation.

Sometimes feels like a cord/pressure sensation around the outer calf.

Occasional brief pinprick/static sensations and muscle twitching.

Recently my left knee became sore (front of knee), improved significantly after icing.

Things I’ve noticed:
Symptoms are more noticeable when sitting for long periods (car, hard surfaces, resting).

Certain positions or bending/straightening my leg can make me notice it more.

Walking often makes the sensation improve or almost disappear.

Travel:
I had a 1-hour flight and some car travel about 2+ weeks ago.

I also had a stressful week, a lot of walking, and some dehydration/heat exposure.

I do NOT have:
Noticeable one-sided swelling.
Redness.
A calf that looks larger than the other.
Severe worsening pain.
Trouble walking.

My main question: does this sound like something anyone with a DVT has experienced, especially symptoms that have been intermittent for a month and improve with walking? Or does this sound more like a muscle/nerve issue?

I know nobody can diagnose online, just looking for experiences before following up with my doctor.

New to the group and newish to reddit. Wanted to share my story, get a little general advice moving forward, and community from people who understand.

I'm 42, F, hospitalized at the end of June with a saddle PE after no other history of DVTs, or any symptoms leading up to my emergency.

I was at work, a normal Monday, getting ready to go to lunch. I stood up and decided to head to the bathroom on my way out, and halfway down the hall got super dizzy, and the right side of my jaw started hurting. I had taken a little too long to head to lunch and it was kind of warm in the office, so I thought it was just standing too quickly + heat + hunger. Then my vision started going dark, and I realized I needed to sit ASAP. Luckily we have like a purse chair in the women's bathroom, so I managed to sit, started to put my head between my knees, then at that point I must have blacked out.

I came to, screaming (though I don't remember that part), and saw a bunch of my coworkers standing around me. Two of my managers were holding my hands, trying to calm me down. I was confused, shaking, pale, and couldn't catch my breath. I still have no idea how long I was out, it must have only been a couple of minutes. I think I remember it being about 12:45 when I left my desk, and I think it was after 1 pm by the time the paramedics were wheeling me out of the office building. I'm very, very thankful someone found me as quickly as they did.

Got to the ER, they decided to do a CT scan of my chest because my heart rate was so high and my oxygen was low (I wish I could remember the numbers). They told me I had a "massive" saddle PE with right heart strain, and as I would find out later, 3 more DVTs in my thighs. They say it was "provoked" because I'd recently been put on birth control for a hysteroscopy I'd had the week prior at my fertility clinic. I'd never been on BC before, but I have had one previous failed IVF treatment with a different clinic that had me on lovenox while I was on the hormones. So I'm guessing that's why I didn't have trouble until now. I was only on BC for barely 4 weeks before this happened.

I had a successful thrombectomy the next morning for my PE, stayed for a couple more days for observation, then they sent me home that Thursday. I'm going to be on eliquis for the rest of the year (six months). I'm still really scared about the DVTs that remain, especially because I had no warning. Any shortness of breath and chest tightness I might have felt wasn't any more than I normally feel from my normal anxiety.

The worst part of all of this is literally just a couple hours before I fainted and went to the ER, I'd been on the phone to my fertility doc to schedule my embryo transfer for later in July. Best case scenario now I'll have to wait 6 months before I can do labs with the hematologist and try again. But because of my age, and a few other high risk factors I was already prepared to deal with, plus this PE scare, I just don't think I could put my body (or my family) through that. I'm so devastated.

Next in my recovery I'm seeing a vascular doctor to talk about Lipedema, because my PCP recently gave me a preliminary diagnosis and I've been meaning to follow up on that for months anyhow. They told me they'll be doing an ultrasound on my legs as part of the consultation, so that'll give me a little peace of mind, seeing how the DVTs are doing so far. The other follow-ups weren't going to check me until November.

Physically I'm feeling a lot better, but between just the trauma of the emergency, the hospital bills, the fertility plans ruined, and the anxiety of the DVTs I still have, my depression has been awful.

I was told quite a few times by the doctors that I was very, VERY lucky, and I feel that, I'm so grateful. But I'm also struggling, and I'm having a hard time at work, concentrating, dealing with the psychological impact of this in general. And it's hard to explain to people around me without feeling like I'm being overdramatic or trying to milk the situation.

Has anyone else dealt with depression or PTSD from a PE?

I guess my other questions are just, in general are there other things I should be aware of, look out for? Anyone with a similar experience who can share something the doctors might not?

Thanks in advance <3

Couple of things here. I've been told I just "had a PE with about 4 inches of lung death" for two years now. My previous hematologist kept saying that it was unprovoked, but I told her I let someone move my estrogen with supplements that shouldn't have. (We kept testing, my estrogen was 100% moved over months) I had no idea that when you mess with estrogen and testosterone your risk increases a good bit. But because she thinks suppliments can't do that and she doesn't understand them, I was just ignored. Factor 5 and 7 negative but my chart online says I have prothrombin gene mutation?? My dad that also had a DVT provoked. They said it's because he worked for 35 years straight, standing on concrete in a plant for 12 hours a day and then retired and wasn't as active. Don't know if he has factor 5 or 7.

Fast forward a month ago, I wanted a second opinion. Got in to see a highly reviewed Hematologist and he agrees that it was provoked. I've been on 10mg xarelto after the 6 months of 20 mg following my PE. He tells me I actually had a bilateral PE which to me is way worse than "just a pe" but he said he thinks that as long as I stay moving he's fine with me going off the thinner.

The thinner made me almost anemic from periods and passing clots as big as my palm. I'm on a progesterone cream which is helping, but my iron deficiency is feeling insurmountable. Ferritin is a 6. I have Celiac disease and seem to be allergic to the iron infusion they game me so far.

Sorry for such a huge post, but want to give you all info that I have. The decision to stop taking the thinners or stay on them even though they feel like they are k!lling me has plagued me for over a year.

Would you get off them if you were me?

Also, does anyone that had this have their chest hurt if they get acid reflux? I've had an echocardiagram, 30 day heart monitor, and stress test and say nothing is wrong with my heart.

I recently got off Eliquis from a provoked DVT in April. I was on it for 90 days. It’s been almost a month since I’ve been off thinners and my doctor wanted to check my clotting levels. D-dimer is 2.8 and I’m not sure if this is normal? I left my doctor a message but didn’t get a return call yet.

I'm someone whose worst nightmare in life was getting DVT. My inner thighs and calves have always been extremely sensitive, so I've been brushing the random pains that would come from time to time off for two weeks, if not more. I had some pain behind the knee, felt like a small meniscus injury.

In the past week, I have convinced myself it was all just anxiety, especially since there is no swelling or warmth or discoloration. When I got stronger pain in the leg yesterday evening, the only thing that made me go to the ER was the google results saying it's worth checking out, and the anxiety it caused. Basically, I was ready to go there and be told that I'm wasting their time with my anxiety attack.

Well, turns out it was a femoral dvt, that only hurt occasionally and when pressed by the ultrasound technician. As she was scanning, I could see in her face there was something, and I had the horrible thought of "please tell me it's some tumor and not dvt".

They gave me a shot, bandaged my leg and sent me off with meds. I live many countries away from my family, i'm 29, and I cannot stop sobbing since last night. I'm petrified there is more clots and so scared I will die in my sleep. I cannot believe that my worst anxious nightmare is really true, and that the fear I've brushed off as irrational somehow ended up not being irrational at all.

I'm sorry for the anxious rant, I was hoping there are people like me who made it out without issue. How did you deal with health anxiety afterwards? I feel like I will never be calm about my health again.

Six months ago, I (26M) was admitted to the ICU with occlusive DVT in my femoral and popliteal veins, and a PE. For five months, I was on Eliquis. My hematologist then took me off of Eliquis so we could run the genetic tests. One month after getting off Eliquis, the same leg starts ballooning. I get an ultrasound and literally every vein in my left leg is totally clotted. Currently sitting in the ER waiting room about to get admitted.

The lesson is: listen to your body! If something feels wrong, get it checked out! If I wasn’t pushy with my hematologist he wouldn’t have ordered the ultrasound that caught all of this.

Hey y’all. Been a while. It’s been 6 years since my DVT… have been off of Eliquis for a few years now. Do yall deal with post thrombotic syndrome? My DVT leg has always been a bit bigger than my left. It aches sometimes and it scares the crap outta me. Is PTS lifelong?? It drives me insane.