Continued discomfort after a PE

I'm sorry to hear this...i had my PE one month ago and am on Xeralto . I found out I am positive for a Factor V  and was dx several months ago MCTD (Mixed Connective ). Wow, they assured me my blood thinner would take care of my PE & the DVT in my leg. I guess i cannot take anything for granted .

you are not lying about that JenInCali i wish these idiots would feel what i'm feeling i can't even sleep at night is this going to be for the rest of my life?? i'm so sorry to hear what you are going through (what we all are going through) how am i suppose to work like this?  I know my PE is new it's only been 3 weeks but does anyone get all the way better??? This is too much i am definitely going to the Dr.'s come monday and i am gonna need some answers I mean damn they went to school for like 8 years???????

Hi Sandeep. 3 to 6 weeks? I'm not sure who told you that, but a full recovery from a PE typically takes up to a year. I am a year and two months out, and just now beginning to feel like myself again. You need to try and stay calm, and know it's a long road ahead. Your chest will hurt, but it's probably the psychological factor that is the most difficult to get through. Maybe your Dr can prescribe something to help keep calm. Best of luck.

TGrove man thanks for your reply!!!  I've been looking for someone to speak with about this whole thing.  It's like the Dr.'s know nothing!!!  They just know how to administer the pain relievers and that's it (well a bit more than that) and i want answers the pain is crazy.  My pain only comes from like 8pm til like 630am (or like 20 minutes after i wake up) the pain if so bad.  I am a very athletic individual i play a lot of basketball and workout and jog everyday so you know this is incredibly hard on me.  I even have my last wrist band from the last emergency room on my wrist still to remind myself....but again thanks for reaching out it means a lot

Take it slow, you have a long road ahead of you. I felt the same way. There isn't a lot of post PE literature, everybody is different, but nobody heals fast after one of these. Emotionally or physically.

I could not believe how long this recovery process is - I was off work for 5 months, then back on reduced hours until Christmas and am only now starting to recognise the old me. The psychological recovery from this cannot be underestimated and it does impact on your physical recovery- and vice versa. I’m on antidepressants and have suffered incredible anxiety - something I’ve never known. It’s been hard work, but I have seen a fabulous counsellor and have had reflexology treatment, massage and osteopathic therapy which has all helped me. But the biggest help has been time and unfortunately it’s very frustrating when you can’t do the things you used to without feeling exhausted or out of breath. And I’m not an athletic person - I’m just talking about gardening or running up and down stairs after the kids! Look up Serena Williams’ story - she was a world class athlete and it happened to her. It took her a year to get back to her previous fitness level so that she could just start training again!

So take your time, try to be kind to yourself as much as you can and listen to your body. I still get a heavy chest and aching across my shoulder blades and still have to focus on taking deep breaths - particularly when I’m tired or stressed. My legs feel heavy and I’m paranoid about every slight pain or discomfort - in case it’s another clot - but I can reason with myself a bit more now instead of just panicking or shutting down.  Your body and your brain have to recover together and you can’t rush it. Trust me I tried! But now I can see the future again and I can look back to see how far I’ve come - you will too. Take care x

Thank you Sally. Yes we do sound very similar. I still get chest tightness, and chest pain here and there, and worry about another clot, although I try not to. Can I ask if you are still on a blood thinner? I tried all of the new ones, but the side effects were awful. I am now on baby aspirin and some natural supplements, and hoping for the best. I want to feel like my old self again, and slowly but surely I'm getting there, but also fear that I might not ever get quite there. Most of the way there would feel pretty dang good though 🙂

Hey sally7165 thanks for your reply it means a lot.  It's been 23 days since my PE and last night was the first night i slept "fitfully" but not in my mind.  Everytime i turned or moved i expected to feel the pain but it didn't happen and i took 0 hydro cortone. Did you take a lot of hydro cortone during your recovery??  I guess PE recovery is a hard thing to determine with every person like TGrove said everyone is different so there really isn't no standard however i feel so much better talking to you guys.  You guys are my predecessors in this whole PE thing.  I really take your guys' suggestions cause you've been through it whereas the Dr.'s haven't.  Thank you so much

Hi to you and TGrove - glad my post was useful!I didn’t take any hydrocortisone treatment. Just rivaroxiban tablets 20mg a day. My consultant wants me to stay on them for life, which freaks me out a bit... but to be honest I would be too scared to come off them yet anyway! I haven’t had any major side effects, but I did get anaemia and have been prescribed folic acid to rebalance my blood. I’ve also started taking a good mult vitamin to try and prevent it happening again. It is hard to know if the medication causes things or it’s just part of the recovery process! 🙄

Hey sally7165 your correspondence is crucial. I need to talk to people who've been through the pain and manage their recovery so, once again, thanks.  Today i am 4 week from my PE.  I be honest with you i feel a lot better and i do understand (through you guys) that each recovery process is different for each individual.  I used to have this deep aching pain which you would think was in your shoulder however that is now gone and i can sleep at night.  What i do have is this cramp in the bottom of my lungs like i was 18years old and ran two miles and was trying to get my best time lol.  That's the pain i have now which i can live with, not forever but way better than what i had before.  Did you have similar pains?  I am on Pradaxa which is for chest and lung PE's type deal suppose to be kinda new.  I take it twice a day.  I was speaking with a nurse yesterday and she things this may be from the cancer i have in my head and my body is trying to heal it.  Well i've told my body to stop doing that so i should be fine,.. just kidding.  Thanks all who listen.  Take care

Hey Suzyp I know exactly what you are going through i had my PE 3 weeks ago and its no joke i wish the doctors knew what kind of pain we go through and now i am hearing that it could be for LIFE????? This is unimaginable...let me ask you something? Is your pain 24/7 or does it come and go? Mine is fine during the day and at night time it is really bad and the Dr.'s have no explanation for this....I don't get it? Am i gonna be the one who sets forth a standard for all the BS that i go through with this PE???  I really need some standards so i am not always thinking i am getting another embolism but believe me i'm here with all you guys....this s**t sucks bad

Hey Suzyp i was wondering if perhaps we could keep in touch?  I just had my PE a little over 3 weeks ago and perhaps maybe we'll be the ones who return to a normal life.  I am 41 years old i am very athletic i work out everyday and like to jog and take my dogs on long walks, just so you know how hard this is on me. I'm trying to do the bare minimum. I even have my wrist band from my last emergency room on my wrist still to remind me.  This really sucks. I hope your recovery is a good one but perhaps we could chat since we are new to this PE thing.. thanks