Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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charliecharlie 08/01/2017

hi everyone,

been feeling unwell for about 6 weeks, sweating, fast heart rate, weak, tired, getting really breathless after minimal exertion , very very dizzy/lightheaded. Went to my GP and she did a basic blood test, came back ok. About 3 weeks ago started getting bad chest back pain on my left side I thought it was muscular because I had just started exercising again after a year. It then moved to my right side but was even worse in upper back, kept waking me up after only a couple of hours sleep, I still thought it was muscular, felt difficult to take a breath in and really hurt when I laughed coughed or sneezed. About 3 days ago I coughed up blood and went straight to a and e , dr did an X-ray and said it looked clear and sent me home with antibiotics. 2 days later I woke at 5am with the back pain, an hour later I coughed and it looked like a small clots that came up, I then knew something was wrong and went straight back to hospital. Long story short, the dr this time did blood that included a d dimer test that came back positive and high, he sent me for a scan straightaway and 5 mins later 2 dr came in and said I had loads of small clots on both my lungs and that I should not be walking around as my oxygen levels were falling and pulse was 120. The dr apologised that it was missed previously and said I could complain. I was in hospital all day and when the consultant came around he said I didn't need to stay in, they would give me Fragmin to self inject twice a day. Been feeling really exhausted today, in bed all day, I haven't got any appetite and haven't for the last 2 weeks. Does anyone else have this? Does anyone know how long it'll take to feel a little better? Can't handle the exhaustion and breathlessness. Took a slow walk to sainsburys and felt so weak and dizzy I thought I was going to pass out. Anyone else have this? Just worried and scared, I know it can be a slow recovery but I feel I can't handle it. Any advice would be really welcome. X

rmb 08/05/2017

Hi the exhaustion is normal. It can take a bit of time to start feeling better. Your body needs a second to recover. I would start slow with walking and work up, to build stamina.

You can handle it.

charliecharlie 08/05/2017

Thanks rmb, i've been reading a lot of threads and realise it can can take a fair while to get back to some kind of normal.

Thanks for responding.

moolar 08/05/2017

It is a slow recovery, so just take baby steps for while & like others said, build yourself back up little by little. After a few weeks I went back to the gym, & worked out for exactly 5 minutes until I was ready to try 10 minutes & so on. It will get better, so hang in there.

dxanny 08/07/2017

Hi. Charlie. Reading your post was like i hd written it myself. I went through the exact same thing 24th july. Was in hospital for 5 days though and got a ct scan done to actually see the clots. Have been feeling tired, dizzy, weakness in legs prticularly thighs. Doctor told me it takes around 2 months to get back to normal or somewhat normal. Would like to stay in touch with you, might help us get through this tough time.

charliecharlie 08/07/2017

Thanks for your reply guys. Been bed bound for a week. Chest seems a bit better but still have extreme tiredness and dizzy.

notsopatient 08/10/2017

Hi Charlie,

It's important to get out of bed and do a little bit at a time a few times a day. Right now that might mean doing three knee bends then having a rest, or putting a chair in your kitchen then walking down your hall and having a rest. It may seem like ridiculously little at first but very gradually building up your daily activities will help a lot. The fatigue gives new meaning to the term bone tired but if you push yourself to do the little bit you can do throughout the day your body will heal and you will recover your strength.

charliecharlie 08/10/2017

thanks notsopatient

its the dizziness and lightheadedness that i really hate. been walking around a little but most times i just want to lie in bed and watch TV lol.
Thanks for your advice and i hope you are doing okay.
all the best

notsopatient 08/11/2017

Yep I know the feeling well. Get yourself a pulse oximeter from Amazon so you can track if your oxygen level electricity is ok while you do your light exercises. I was afraid of passing out from it but with the oximeter I was able to confirm my activity level was ok (oxygen saturation above 90 percent).

charliecharlie 08/11/2017

Thanks for the reply. When were you diagnosed? Do you have dizziness / lightheadedness?

notsopatient 08/12/2017

Diagnosed with chronic PEs by lung biopsy in Feb 2015 after a year of puzzling my docs (along with an autoimmune lung issue that became apparent at the same time). I had tons of dizziness and lightheadedness to the point that I was afraid to exercise because I was afraid I might pass out as a result which would leave me unable to drive and thus housebound due to my lung problems. In November of 2015 my respirologist referred me to pulmonary rehabilitation which was really meant for COPD (emphysema etc) patients, where you exercise 3 times a week under medical supervision/oxygen monitoring. That proved that I could exercise without my oxygen dropping to dangerous levels (below 90%) which let me try doing a lot more and get a lot of functioning back as well as teaching me a lot of tips to help deal with the limited oxygen. My disease is pretty variable day to day but yes I do still get dizzy and lightheaded, usually when I am doing more than usual, when I am trying to walk around after having eaten a meal within the last hour, or towards the end of the day....

notsopatient 08/12/2017

(I should also mention that the course of my disease is not typical, fyi.... most people get better faster.)

ECK 08/22/2017

I'm 2 minutes nths out from multiple PEs after gallbladder surgery . I am still extremely tired and lightheaded at times . I borrowed a walker just to help steady myself at first . I still get short of breath with a small amount of exertion . But I know if I stay in bed on lay on the sofa all day that I will just get weaker. So I go walk every day for as long as I'm comfortable , usually at the mall , bookstore , department store . I might be there 5 minutes or I might be there 35 minutes . The trick is to not overdo it cause it will set you back. I thought I'd bounce back in a few weeks but from what I'm finding out , that's not the case . It will get better ( I keep telling myself that ) and as I told my husband , I'm still here and not sitting on the mantle in an urn so I count myself very lucky . Hang in there it will slowly improve

Mona1805 09/06/2017

I pray you have a speedy recovery. In June 2017 I was too diagnosed with PE due to taking the birth control pill for 2 months. Had exact same symptoms as you. I we to the ER and 5 days later I was released. I have large blood clots near both lungs.

I recently had a PET scan that showed hot spots near my lungs as another mass was discovered there. On 9/5/17 I had a broncoscope and that was no fun to biopsy my mass near lungs so praying that too is nothing to be of concern. Results are pending.

I now take things really slow because I don't want that rushed and anxious feeling with is evident by my elevated heart rate after 2 months of Pradaxa but I don't always feel anxious or worried. I am back to work but desk duty. So yes don't over do it.

It's gonna take time to wrap your head around what's going on and to make sense of all this stuff. As I like many I was fine but never imagined that would land me a ER trip, hospital stay and now all the other complicating factors that were discovered but I'm doing it because I have too.

Find supportive friends. Keep your faith. Keep with his group as I wish I had stumbled across it a long time ago because I'm not alone and you are not either.

Be encouraged. Best regards and God bless

Bless 09/11/2017

Bless 09/09/2017
Hello everyone I'm 33 years old anyway on August12 of this year I had this pain in my leg that felt like a charley horse smh my husband try to rub it out it stop for awhile but then it started backup again anyway so August the 16 I decided to go to the emergency room cause I start limping I gets there explain what's wrong they did the d-diimer test it was high 1600 so they said we think you got blood clots in your leg so they begin to give me shots in my stomach got admitted in the ultrasound my leg didn't see nothing did a CT scan found it DVT so they said it might have travel we have to scan your lungs Vascular found a small one in the lower lube mind you know short of breath no chest pain normal breathing vitials great Thank God he is Able back to the story I went on a Wednesday I was suppose to get released on Thursday I had problems with my insurance so stay another night Friday came still insurance problems until 8pm Friday night my insurance paid for my medicine I said to myself the devil is a liar and I rebuke you Satan cause I'm going home today smh im trying to be normal I broke down and cried praying to my lord just lead the way and touch the blood Amen they still trying to find out whats the cause but I believe it came from sitting down at work for 4 hours straight 5days a week and I meant to mention it to the doctor but I was so in shock I forgot but I have a appointment with the hematology October 2

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