Deep vein thrombosis (DVT) and pulmonary embolism (PE) are, without doubt, the most painful injuries I have ever experienced in my life. As a prior athlete, I had become accustomed to pain to some extent. After all, training for a half marathons is not meant to be pain-free. My legs hurt, my feet hurt, my shoulders hurt and even my lungs hurt at different points throughout my training. Growing accustomed to ongoing knee pain actually contributed to a delay in my seeking medical treatment for my DVT because I thought it was a result of a recurring overuse injury. I finally went to the Emergency Room (and only after instruction from my family physician) when I was struggling to breathe. Pain, as I have come to find out, is also a part of recovery from a DVT and PE. As we become more accustomed to pain during recovery, there are three symptoms you should never ignore when it comes to your health.
Learning to gauge what pain is critical and what is a normal part of recovery can be difficult and, above all else, it is important to remain in contact with your physician about your specific symptoms. Pain, for me, comes and goes now, two years out from my DVT and PE. Some days I feel great and other days it is still a struggle to get up, get dressed and walk up the stairs because of pain in my leg affected by DVT or pain in my side from the PE. While the pain has lessened over time, I did not know what pain was normal and what wasn’t in the beginning. Two months after I was admitted to the hospital with the PE, I was re-admitted with pain in my same side, this time as a result of pleurisy (or inflammation of the lining of the lung). I called my doctor and he indicated given my very recent history of PE, it was better to get it checked out than to wait. And, when in doubt and regardless of the perceived severity of your symptoms, get checked out, especially these three symptoms!
As time progressed, I learned to gauge pain, but once again found myself in the ER more recently with a severe headache that lasted over a day and caused blurry vision. That was abnormal for me, something new and a growing concern the longer it persisted. Again, my doctor advised that given my history of clotting and increased risk of stroke due to antiphospholipid syndrome, it was best to get it checked out. In this case, it was just a headache (presumably brought on by lack of sleep and stress and maybe a protruding wisdom tooth), but again, I did not know.
Now, after these experiences, I know there are three symptoms you should never ignore – regardless of your past medical history.
1) Difficulty Breathing/Shortness of Breath
Shortness of breath has many different causes. For example, known and chronic heart disease can cause breathlessness if your heart is struggling to pump blood throughout your body.While you can have difficulty breathing with, for example, pneumonia or bronchitis, it can also be a symptom of something life-threatening such as a heart attack or a PE. You should seek immediate medical assistance especially if your symptoms appear suddenly, are long-lasting, are new or do not subside with regular rest.
2) Chest Pains
Causes of chest pain can vary from minor problems, such as indigestion or stress, to serious medical emergencies, such as a heart attack or PE. The specific cause of chest pain is often difficult to diagnose without medical attention. Chest pains that appear suddenly are of significant concern and can be symptoms of a PE, heart attack or even a stroke. Chest pains may present as numbness or tingling in the chest area, back or even the shoulder arm/area. You should seek immediate medical assistance if you experience chest pains that are sudden and unexplained.
3) Headache (sudden onset, long-lasting or especially one that causes changes in vision or speech)
Common types of headaches include tension headaches, migraines, sinus headaches, and headaches that begin in your neck. You can have a headache with a cold or flu or as a result of other illness. They can range from mild to severe in symptoms. Headaches that are particularly concerning are the ones that come on suddenly, last for an extended period of time or cause changes in vision and/or speech as these can be symptoms of a stroke or blood clot. You should seek immediate medical assistance if you experience a headache with any of these symptoms.
The bottom line is, you know your body best and as you are recovering and learning what pain is normal for you, it is important to keep in touch with your medical professional about any sudden or unexplained symptoms you experience. If you cannot get in contact with your doctor or are concerned, chest pains, shortness of breath and headaches are three symptoms you should never ignore when it comes to your health.
Share your story. Do you agree that these are three symptoms you should never ignore? How are you listening to your body?
There is hope for healing and you are not alone,
Follow
A critically important post-my sincere hope is that one day these become as promoted as the warning signs for heart attack / stroke. Great work Sara!
Thank you and also thank you for reading, Patty!
Hi I have the symptoms above and have had a persistant cough for 3 months my GP completely ignored me about the above symptoms and is trying to treat the cough with other means which are failing I’m worried it may be dvt or an embolism any advice
Hi Georgia. I hope you received my email, but I wanted to respond here as well. Seek an additional opinion and seek Emergency treatment with something that has lasted this long. I hope you are well as I did not hear back from the email! Thinking of you.
Im so angry with my doctors they kept trying to treat my cough and other symptoms i had. Id just had a miscarrage and suggested dvt to them but they never listened. I went to the hospital i had a scan for dvt i was sent a letter saying i didnt have it. 3 months later i collaped at work turned out i did have dvt. The scan had also showed it but yet the doctor had written to me saying i never had it. Please go to the hospital and push your doctors you know your body better then anyone else.
Hi Georgina , If i were you I’d go for second opinion. I too were out of breath after climbing my daughters stairs, .(we don’t have stairs in my own home)
Then I had a cough , I went to my GP up set ,I was in tears, he immediately sent me for a blood test and told me to go back the next day for the result,
When they came back I was sent for a CT scan there and then.
Well I had the scan and the next thing the X-ray nurse came to get me from the waiting room, and the radiologist came to explain he had called an ambulance as it was life threatening I had two huge clots in my lungs and many small ones.
I am 78 , I was rushed in to Emergency and finally was put on Xarelto,
IN 6 months they were gone, and I was put on Cartia aspirin ,
I am forever thinking that I still have another one, I have muscle pains in my side.
Anxiety plays a huge part in recovering.too not very helpful I must say.
Do have it checked out .some Drs are too lazy to move from their chairs .
Lucky I had this caring GP which I am for ever grateful to for sending me when I had that cough.
I don’t have that cough any more, you get yourself sorted. Find a doctor who will move out of his chair .
Read as much as you can on these clots . I hope you don’t have one but just to make sure.
If you dont get satisfaction go to the Emergencyband tell them you might have a clot. They soon jump. Good luck .hefina
Hai I am Janaa from India…last 7years I affected by DVT…..last August 1rst I admired in the hospital for PE…i take elaxim 30 injection and heparin..the Dr adviced to me take acitrom 4mg..now I am in diet wearing compression stockings.
I wish doctors would tell their patients what pain to expect after a P.E. and when to seek immediate medical treatment. After having weird chest aches after my P.E. I suddenly got a cough for no reason which reminded me of the cough I had before my diagnosis of a P.E. I called my primary care doc about the cough and all they said was “I hope you feel better soon.” I was afraid it was another P.E. and she swept it under the rug like it was nothing. Eventually I found out pain and coughs may come and go, this was after a CT scan that showed I was not having another P.E. but it scared me enough to go to the ER one night after palpitations.
Thank you for this site, BTW. The articles and reading from others have been greatly insightful.
Kelly, I am with you on that. I found out I had a PE on a sat night and was sent home the following afternoon. Dr who sent me home didn’t tell me what to expect and when I asked should I be on bed rest she said no that I could go about as normal. 7 weeks later and I have only just two days ago driven myself into town for the first time. I have gone in to the ER about 5 times since with the same symptoms that put me in there in the first place. I am also glad I found this site as it has helped me to not freak out so much about the palpitations etc and to read all the other stories has helped me so much to understand it all. I have 4 children and would happily go through another 4 if not more natural births than have this happening to my body. Best of luck to you!
Hi Sara ,
I’m sat here worrying about a pain in my right calf (mid calf ) . I first had a DVT 3 years ago and had 6 months on Warfarin .
A year later another episode with pain in my left side justbelow my collar bone . I eventually gave in and phoned UKs advice line for health . Within 10 mins the first paramedic was here at my home . Anyway to cut a long story short , the Consultant who saw me at A and E was very tired , over stretched as it was Christmas day and kept taking my oxygen off saying I didn’t need it as it is put it on myself !!! My wars were 89 and the alarm kept sounding so the nurse’s would put my o2 on and consultant take it off again -a right carry on . Anyway Consultant said to me she thought the pain in my left side was a strain as there was nothing on my xray. I’m on strong meds for fibromyalgia so I thought that was odd as surely they would ease my pain however she said she was waiting for the blood gas sample and when it did it revealed a suspected clot again . I did have mulitiple clots same as last time in the same area of my lung . So I am on life time Xeralto (sorry if my spelling is off ) .
I have had this calf pain for a couple of days and have elevated my leg , deep heat , tubi grip all sorts to it but tonight I felt it kinds pull some more and pain is awful again . Should I go to hosp or should I treat it as a soft tissue injury , i just don’t know . My GP is extremely hard to talk to and even harder to get seen anyway so I tend to not go these days .
Sorry for my long essay , i couldn’t really express myself as I wanted too . Thank you for reading Sara , and big hugs to you xxx Lou xxxx
Sara thanks for the advice very good info. I would like to say listen to your body and and changes that don’t make you feel good should take you to the the ER. I just got out of the hospital after 10 days for my 5th set of multiple bilateral PEs. I went to TX to visit my daughter and her family. I had a headache and chest tightness sent me into an asthma attacks with respiratory arrest. In er 2 days they sent me home! I drove 45min to a different hospital had to stay 10 days.
First time stabbing pain in chest
Second time sob and anxiety with pneumonia
Third time tingly in chest and hands
Fourth time flu like aches and fatigue pneumonia
Fifth time chest tightness asthma attacks, pneumonia seems I was waiting too long to get to er and tissue effected by clots got infected I was septic and confused.
I was clinically covered by Coumadin
I was diagnosed with PE in Mei 2016 I have a blood clot in my lung.
After a long struggle I am very positive.
Fr the last two weeks I have been having this severe headaches and I don’t know if this is normal considering I have very bad sinus.
I had a pulmonary embolism in December I was admitted into critical care and honestly thought I would die. I was released to early from hospital rehospitalized 4 times and given warfarin and shots to help deslove clots that had went to my lungs. It has been 9 months and I am beginning to get short of breath, to tired to walk through the house and after reading the 3 symptoms not to ignore am going to hospital. My family chooses to act as if nothing is wrong they think I’m crazy. I don’t want to die.
I’m experiencing the same thing. I had a massive Embolism and clots. In my left leg. Iv been to the hospital 7 times shortness of breath,not able to walk far, chest pain. Its been since May 2nd. I’m scared still. Can’t sleep anxiety, depress sometimes. I pray everyday that God give me strength.
I am so worried! Just had a baby who ‘s turning a month old in 2 days. January 21, I was confined at the hospital and was given Heparin IV, dvt found in my right groin and my leg. Was discharged the next day and after 2 days I noticed a new swelling in my inner thigh even though I am taking 15 mg Xarelto twice a day. Did it ever happened to anyone? I am so scared.. need someone to talk to. Pls. Help!
Hi! I know this is a little late of a response but I just had a baby as well (my first!). I was diagnosed at 31 weeks with a DVT in my left groin. They had my on lovenox throughout the pregnancy and after switched me to Xarelto. I have been so paranoid about developing a new clot and what not but the doctors have all assured me that is very rare. They have said it’s quite common to experience more swelling even after starting the blood thinners. I hope that this helps. I have literally had so much anxiety about all of this so I truest hope that you are feeling better!!!
Back in march of 2016 my husband stood up and suddenly fell to the ground. The ambulance was called and rushed my 35 year old husband to the Rar where they did the cat scan and suddenly called shock trama of Baltimore to have a helicopter to take him there. He had a massive blood clot in his lungs called a saddle PE. He was put on life support right away. His heart grew 2 times to big. After being in a coma for 2 days they did open heart surgery to remove the clots and put a IVC filter in his chest. Every after 7 month I still get worried when he says he has chest pain and leg pain.
Recently went to the hospital with same symptoms of PE. Had HTO surgery with a graph done on my knee about 4 months ago and was told I would be at risk of getting blood clots, while I was in the hospital for my knee they gave me 2 shots to help prevent the clots. Up until 4 days ago I took a nap on my bed to wake up to pretty bad pain in my right side of the back below my rib cage. I brushed it off as just thinking I slept weird and pulled something, about an hour passed and I woke up to very severe pain in the same spot, making it very dificult to breath, laying down, sitting up, standing up. Went to the emerge which ended up being an over night stay, they did there tests (chest X-ray, blood work, and a CT scan as well as a shot just in case it was blood clots as they didn’t know yet).
Later in the morning they came back with the results saying I have multiple blood clots in both of my lungs, and 1 somewhere in my leg still from the knee surgery.
I was sent home that morning with blood thinner pills I have to take for 3 months. And Tylenol 3s for the pain.
It’s day 4 now, still having the same pain (sharp stabbing in my right lung, goes thru what seems like waves, feels like a twisting/stabbing/throb. Takes your breath away). Finding if I lean to my left while sitting in a chair I get some relief. Laying down seems to make the waves come on, or leaning to my right side, getting up too fast, or bending over. Standing up helps get a somewhat satisfying breath but still hurts a lot.
Hoping to get some relief soon (23 years old)
4 weeks ago *** not 4 months
This is exactly what I experienced after being admitted to hospital. Started off as shortness of breath but switched to excruciating Charlie Horse feeling in right flank just as you described. A muscle relaxant flexoral was prescribed which helped immensely. 3 episodes took place in three days but now I seem to just have the odd spasm. Really difficult to find a comfortable position to sleep in. Today is day 6 since diagnosing my PE. Hoping to be released from hospital today, but worried too as not much help at home.
Have had leg pains for the past couple of weeks maybe longer. I tried the pressure test (then saw it wasn’t a good idea) -_-
Some pain but not horribly screaming pain. Some shortness of breaths I think I’ll visit the hospital tonight or tomorrow..
I know I’m not active enough and it frustrates me that now I feel like I shouldn’t be if it’s a dvt 🙁
I don’t like worrying about this 🙁
Hi Sara i was doing what i also do looking up information on clots and found your blog. Im 56 years old and have had 5 surgeries angioplasty with stents within five months. Repeating in both legs. I ve changed my diet and recently began treadmill 5x wk. On eloquis liptor plavis Hp meds aspirin and stomach meds i take first in the morning. I started seeing a hemotogist to get some answers and if ot wasn’t for my faith i would be a basket case. I want to be a help to others in the future but i need recovery for that to happen.i did not know about vitamin k and ot has been a large part of my diet as i like to eat healthy
Ive since stopped that. Im not a social media person so posting this was difficult. But i do believe in each one teach one. I did get support from everyones post. Ill pray for everyone on these thread and we will continue to lift each other up. Min Sharon
Hello. I was misdiagnosed, my doctor said I’d pulled a muscle, 3 ambulance men agreed. 3 days later I’m on A&E with 2 major clots in my lungs hovering over the vessels to the heart. 2 months prior I had unexplained chest infections and asthma attacks and my doctor never sent me for a chest x Ray. I wished I’d demanded one.
I’m on week 3 of recovery and feel shattered. Chest pains are really bad. When I asked about work I was told by my specialist that we can discuss work in 3 months.
How long were you off for and how long did the chest pains go on for? I know everyone is different. I were told my cloths were massive. It’s all very daunting
Sarah-Jane
I have back pain between shoulder blades and now a cough. P e four years ago. On warfarin. Hubby says im worrying about just nothing. I am not breathless like last time. Wonder if this will just take time to resolve
Gosh, Sara, I’m thankful and amazed at your site! Talk about confused! My husband has CLL/SLL. His particular type of cancer is managed but, not curable. He is in a temporary remission. Please, has anyone had night sweats following PEs and DVTs. About six months after chemo (3 types, one being Retuxin) my husband finally allowed me to take him to the closest ER only to be stabilized and transferred to yet another hospital (SAMMC) here in San Antonio. He had 15+ PEs and 2 DVTs. It was horrific. They almost intabated him. It has been 10 months since nearly a month long stay in hospital due to repeat hospitalizations. He is symptomatic still. No one has said this is normal other than you. His symptoms now include ( with normal oxygen levels 90+) chronic fatigue, chest pressure, nightly night sweats, breathlessness, palpitations, loss of stamina, vertigo. They symptoms are better somewhat. He’s on Prozac and has started counseling again. They have run every test except a heart cath. Nothing! Please respond. Thank you so very much.
I have a saddle PE and was in hospital for 3 days on injectable blood thinners. I am not following up with 6 months of oral elliquis. I don’t feel great. I wake up with a racing heart and sometimes have shortness of breath for short periods of time. I am asthmatic and feel like I’m getting a cold, so it’s confusing as to if or when I need to to return to the ER. I mean the clot is still there, so some level of symptoms is to be expected, right? Any help would be appreciated. Trying not to freak out.
Now following…
I had not been feeling well for several months (lightheadedness, dizziness, a few episodes of tachycardia and sudden onset of massive anxiety and panic). Multiple EKGs, one Echo and a treadmill test were all negative for heart disease. Primary care doctor prescribed clonopin and sertraline for anxiety but I still felt like something was wrong.
On April 2, 2017, I couldn’t catch my breath and felt awful. On a hunch and desperate for an answer, I asked the ER doctor to rule out DVT. I’m a very good historian so I was able to explain my concerns to the doctor and back them up. I was also super lucky that the doctor was in his 40s but had two prior DVTs himself. One ultrasound later I was diagnosed with a groin DVT. Thankfully no evidence of PE. I’ve never smoked, I’m not overweight and walk 3 miles+ a day. I haven’t been on a plane or long car ride since last September. So far, no one can figure out why this happened. I’m seeing a hemotologist/oncologist in 2 weeks.
I’ve been on Xarelto 2x/day but the pain in my groin has traveled across my abdomen and my entire left leg. I have a pretty high pain tolerance but my leg pain has been at an 8 the last few days. Extreme burning pain in my thigh and calf and tingling in my foot. My left arm and side of my jaw also hurt. The primary care doctor blew me off and told me to take Tylenol.
Has anyone else with a groin DVT experienced extreme leg pain with burning? I’ve been taking extra strength Tylenol and elevating the leg but it doesn’t help.
Several years ago, I had clots in both legs and lungs. Was admitted into the ER/ICU. I didn’t want to be on blood thinners the rest of my life so I stopped taking warfarin and looked to diet and lifestyle instead. I purchased the book ‘Prevent and Reverse Heart Disease’ The Revolutionary, scientifically Proven, Nutrition-Based Cure: by Caldwell B. Esselstyn, Jr., MD. I also spent quite a bit of time on the internet looking for answers. I decided to eat mostly raw fruits and veg and take omega oils, Natto and take espsom salt baths. I am still tweaking my routine but have not have any incidents in years. I walk at least 15 minutes a day and drink a LOT of water.
Thank you so much for your blog Sara! It has brought to light what I’ve experienced in the past 5/6 days. I’ve been newly diagnosed with multiple PEs in my lungs. Learning to deal with it. Not too sure what’s ahead. Hoping the blood thinners will do what they should and I can move on. You’ve helped me learn a lot about this condition
I wish you well David. My husband had 15 PEs and 2 DVTs a year ago May. He was hospitalized on and off for 6 weeks. We honestly knew he might be oxygen dependent for the rest of his life. He was stronger by December 2016 and seemed to get weaker. He is on Physical Therapy twice a week and the is the best endurance and stamina I’ve seen in a long while. If he gets strong enough he can graduate to therapeutic aquatics. He finished cancer treatment November 2015. By May The PEs and DVTs took what strength he had. My husband smiles more. I thank God everyday he is here with us.
I just rode in a ten hour car ride and have strong chest pains what should I do?
I just rode in a ten hour car ride and have strong chest pains what should I do? I just want it to go away need an answer
thats so interesting Sara re the neckpain and headache with my 2nd PE i experience this all day long before the chest pain etc started. Good to know! i knew this website would be helpful for me in little ol New Zealand.
Have any of you been misdiagnosed? I am having severe chest neck and shoulder pain. ER told me I have pneumonia, however my D-Dimer is very elevated. My only symptoms were SUDDEN so set chest neck and shoulder pain. Now the pain has radiated to practically my whole right body from rib cage up to my shoulder and if I move, cough, laugh, lay the pain is worse. Are these symptoms of Blood clots in lung or pneumonia???
everyday after p.e i get the worst of headaches and my arms legs start aching
I am 26 years old diagnosed with pulmonary embolism on my left lung, recently i been experiencing chest pains but no shortness breath? And its like some one is pushing on my chest on both sides is that severe?
My father-in-law recently had hi replacement surgery. He was having just, general problems, not eating, and severe headaches and confusion. He decided he was going to kill himself the other day, which is definitely not in character for him. He was taken to ER, where he still exhibited a complete stage of confusion. After several tests, they found that he had a pulmonary embolism. Could lack of oxygen from this explain this odd behavior?
I’m seeking advice. I’ve been on xeralto for 12+ months after a PE in my lung, quite large. I do have a lot of stress in my life and recently got a new job. the weekend before starting new job I get a migraine-which is normal for me with stressful things. usually 1 or 2 a year. But the migraine turned into a tension headache of sorts and ii’ve had it for 6 weeks now just weird pressure at top of my head, right side, always moving around, at temples in front of temple. and in sinus area. no drainage though. and I wake up with them as well. getting massage and chiro . should I be concerned this is a brain bleed? I hate the fact that i’m on xeralto for life ( I have FactorV leiden) Any thoughts on this? the stress of worrying about it is probably making headache worse.
It’s been a month since you posted. You’ve probably figured out if it’s just a headache or something more serious. However, it has been my experience that headaches are common with PE’s. I get them if I’m even slightly dehydrated – migraine and tension headache symptoms + eye pain that feels like my eye is cramping inside. It’s awful, so I make sure to stay hydrated.
Okay hello, mu name is amber and i was diagnosed with 4 blood clots 6 years ago. 2in my left leg one in each lung. I almost died. If i woukd have gone another day i would have. Well as i said i have been clear for 6 years but recently my left leg where i assume the clot started has gotten tough srnsitivr and slightly discolored. It is a good 3inch spot on my leg and itches like crazy. What should i do?
My name is Rod I was just diagnosed with DVT and also a rare lung disease. I was released from hospital yesterday on 2 different blood thinners but am having shortness of breath and chest pain Idk what to do now. I’m do confused. Any help or comments.
I was diagnosed with a clot in my calf after knee surgery. The pain kept me up all night. It’s been two weeks and I started having a headache yesterday. It has not gone away. Of course it’s a weekend only er available. Is this something to be concerned with?
Thank you very helpful mine started in my leg behind knee it’s in my lung now I’ve had a bad headache for two days now but no problems with speech or numbness just a sensitivity to light also my neck is sore may get checked out again if it continues anyway thank you for sharing it helps
Hi. I was hospitalized last year with multiple blood clots in both lungs. But never had chest pain. My pain was all in my back and lungs and It killed me to breathe. I didn’t know it would take a long time to completely feel normal again. It’s been over a year and there’s days my lungs still hurt and I can’t breathe very well, then there’s days I feel great! How long does it take to completely feel normal again?
Hi I’m 26 female who has a clotting disorder an don’t take blood thinners regularly I know stupid any way iv got cheast pain short breth feels like I broke a rib under my boob but I know I couldn’t have I also been having Thea’s symptoms since I took a bc powder this morning witch has a good thinner in it should I be worried iv also had numb Ness a tingel in both arms but t went away
I had this happen to me almost 4 months ago and still struggle with a cough and shortness of breath. I keep wondering if it’s something I should be concerned about but my doctor says he doesn’t think so (mostly because I’m currently without insurance) I can’t seem to do the things I used to before this happened and wonder if it’s because of the PEs or if I just need to be more active. He says “don’t push yourself too hard” but what does that mean?!?
In jan 19 i had what i had imagined a heart attack would feel like. I had sharp stabbing pain in my back and shortness of breath. I was painting so i thought id pulled a muscle but I distinctly remember telling my husband it ‘feels like an alien inside of me trying to escape’. It lasted 10minutes and disappeared. My gp investigated heart stress test where the cardiologist laughed me out the door, im fitter than i look and blitzed the test and im only 35. My d-dimer test was positive so gp sent for CT which found PE on my lung right next to heart.
Im on Eliquis 5mg. Gp sent me for a heap of scans all clear so am considered an unprovoked PE. I feel like a ticking time bomb because they didnt find what caused it.
I am 31 overweight and I have 2 blood clots in my left leg one above my knee and one under my knee. I have had shortness of breath in off and on for the last week and all of a sudden I am having full pains in my left area of my chest where my heart is. I don’t have medical insurance and with the Covid-19 as bad as it is I don’t won’t to get out and possibly get it so nice I have bad health issues. Any advice?
Last year i had PE and a blood clot on each Lung,i am having shortness of breath,and now a slight headache every day,i also had a aortic anneurisum ,i am on enapril,warferain 6mg daily for life,can not lay on my back for long without pain,my INR i 2.4,the Spanish Hospital said i was lucky to be alive ,so always worrying all the time.