Pain is a relative thing, but here is my experience. I thought I had a high tolerance for pain but when it came to PE pain, I couldn't stand it. When I was in hospital, I only sleep sitting up with pillows surrounding me, and when I came home, I had a hospital bed that I had in a semi-reclined position for a few more weeks. I still experience pain while laying down and it's been eight months since my PE. However, I also recommend getting checked out if things have changed since you were last seen. It's important to pay attention to your body and what it is telling you.

Thank you TwinMom for replying to my question. It helps to ease my concerns. Only someone who has been through it can really let others know what to expect... :}

Post PE was the only time in my life I ever felt compulsion to take pain pills. Since I was led to believe that abdominal pains were reason to return to the ER, I did so. The ER doc on duty simply said that pain was normal "as you recover". Every day was a new surprise. One day it was the renal area, one day the side, one day the neck and left shoulder, and so on. A week out, I woke up with no new pain and figured that must be a milestone.

Sleep was difficult. I would arrange pillows to find a different position every night. Since I used the Oxycondone sparingly, it kept its strong effect and I got relief when it was needed. I discontinued the pills as soon as the pain was gone.

I was lucky to get the pain intensely and briefly. For some people it goes on a while longer. In your case, the 3 1/2 weeks that it has been is still a short time, so it would not be unusual to still be feeling it.

Dear More2be,
Glad for your insight. I posed the "pain question" to my Dr. today...next thing I know...he had me in his office. He conducted EkG, and x-ray......he said it was normal. INR dropped below 2...
...all I needed to know was what you and others have answered 4 me...on this site
...I too couldn't sleep last night due to pain...which (as U said) pillows help ...thought I cld have sudden death...
...thought I was losing my mind with the pain moving..."new surprises"...
but U guys on this site have soothed my concerns...tonight I will sleep better...thanx ;)

like more2be my pain was all over the place, nothing really helped. During the day it seemed to get better and then come back at night along with a fever. I had pain meds already from back surgery so I took them as needed, mostly at night. The pain in lungs and sides lasted about 3 wks and went away. Hope you get better soon, give things time, everyone is different, just rest and exercise when you can, little bits at a time. After my dr let me walk I got better, but it was a while before he would, afraid there might be more clots somewhere to break loose. I am 6 months post PE and still get tired very easily. I do what my body lets me do and I dont worry about the rest. Hope your Dr gave you something for anxiety which seems to help you rest and relax.

Thanx DavidT1952...for your kind words of support...

Last night the pain was soooo bad an 8 (scale 1-10). Had to take a pain killer. Dr. had prescribed Darvocet, which dropped pain to a 2.
...I guess what has shocked me the most is that I dealt with the pain of the DVTs (and hardly any pain in the chest). Pain of legs went away in about 15 days. I thought I was "home free"...
...and then all of a sudden came the enormous pain in the chest...I just wish the Dr. had said that I should expect that, and it's "normal" in the healing process.
...I can hardly wait till the chest pain goes away...
...it hurts to breathe and to laugh... :\

My husband has been diagnosed a week shy from 2 months and continues to still have pains in the chest and leg (has dvt also) he was diagnosed with an enormous saddle pe. He also has trouble sleeping. He was already on heavy duty pain meds before this due to a back injury. He has had trouble sleeping from this injury also. When he came home from the hospital he was sleeping on the couch because he could not breathe when lying in bed even with help of pillows. I went and bought him a cuddler recliner. This was very useful for him as it is a very large, soft chair with an extended leg rest and high top to support his head and neck also. He slept in this chair for several weeks as I slept on the couch. (some nights fitting myself on the chair with him, as it is a big chair lol). He also continues to have shortness of breath at times. He says he feels like he takes one step forward then two steps back. Just when he thinks he is feeling better, he has setbacks and this is frustrating to him. I tell him that doctors say he is going to experience this, as it can take a year for full recovery. But I can understand his frustration as he would just like to feel like his normal self. The poor guy has been dealing with pain from his back injury for about 7 years and now he has to manage pe and dvt on top of it. He is not even sure if he remebers what normal feels like. He is back in his bed and most nights can lay comfortable with breathing but an an occasional night I will find him downstairs on his chair.

I am curious how you know the dvt was gone. I am guessing you were tested. My husband continues to get sweeling and pain in his leg. He did have surgery while in hospital to have a filter to block leg clot from moving to any organs. T^he told him the clot in his leg was very large also.

Dear Otherhalf22,

You truly sound like a very caring and considerate spouse. Your husband is a lucky man to have you as a life long partner who is able to help him...

...thank you for sharing your situation. I regret your husband is suffering, and hope he feels better soon...sounds like he really had one heck of a PE...

...through this site...I am able to see the wide range of pain symptoms folks have had to deal with...

...You asked me a very good question..."how do I know my DVTs are gone?"...I don't...really know for sure...I guess I just made that assumption, because all swelling and pain has gone in the leg, and the Dr. said that my leg was "excellent"

...But...your question has got me thinking...I really don't know for sure that the DVTs are gone. I should have a ultrasound done. I'll bring this up in my next Dr.s appt.

Thanks again for your insight :)

Dear lover1 - all i can say is if you have pain then keep on at the medics to try and get help in alleviating it- I'm 3 years on and still have pain in the chest; I couldn't sleep lying down for several months and it took many more months to stop being scared every time I went to sleep that the same thing wouldn't happen again. I guess the drugs are different in the States, but here I was prescribed tramadol and used it alot for the first few months. I still get a swollen ankle where I had the dvt - i think sometimes the arterial flow is compromised and so swelling can happen for some months/years after. My boss also had a dvt and said that her leg really pained her for about 5 years aftter. I've come to the conclusion that everything is 'normal', despite what the medics may tell you.
. Like twinMomn said, pain is relative. I, like her am a mum of twins and having givenbirth to twins, I can say that PE pain is soo much worse.
Hang in there - it does get better but don't be surprised if it takes much much lonmger than you or nayone else anticipated.

Dear rachelHall,

"Holy Toledo"...pain "off and on", for 3 years...OMG!!! I'm sorry to hear that. Hopefully I'll be over it soon...but I will be patient as you have suggested...
...I guess I am sooo very sad over the whole DVT and PE mess...I thought that the pain in my leg was the only pain I would have. I was "side swiped" with the pain in the lungs...
...last night the pain was an 8 (1-10 scale) again...took Darvocet
...most people have said that the pain is worse at night...have you had any shocking, "surprising" pains during the day? Are there any more "painful surprises" I should be prepared for?

Thanx for your insight ;}

P.S. TwinMom's twins are cute...

...last night (6/11/09) pain was 10 (scale 1-10)...although I have never been shot in the chest...this is what I think it would would feel like...

...aside from pain killers, and elevating self when lying down...does anyone out there have any other ideas that help ease the chest pain?

...Grrrrrrr.....ooooouchhhh................ :+

I had multiple blood clots in my left lung last year- June 2008. I'm still on coumadin and coming off slowly to have genetic testing done in a few months since they don't know why I had clots. I don't want to be a discouragment, but we all heal very differently. If something seems really bad- I would always encourage you to go back to the emergency room. Once you've had a documented PE..... they should take you concerns seriously. Both my hemotologist and pulmonologist confirmed that since I had several small clots that traveled to the peripheral (ends) of the vessels in my lungs-this can cause more chance for scar tissue, plus I had lung infarction (dead tissue). Who knows if this is true, but this is what they both told me....

I still have pain in my lung (it's more of an deep ache, but NOT a muscle pull sensation- more like broken ribs.... but much deeper on the side and my back area- this is where I felt the initial pain that sent me to the hospital, plus I was having odd sensations in my neck like a stinging feeling) and my lung pain the worst when I do TOO much during the day and by night it scares me. That being said..... I've had to learn what my new "normal" is and IF it gets worse.... then I would go to the ER.

I haven't been to the ER since March.... so I'm hanging in there! :) I have had multiple CT chest scans in the last year (4 and I'm clean of anymore clots in my lungs), but the pain remains. I take 1/2 of a vicadin at night when the pain is above a 4-5 out of 10 level to help me sleep.

I hope I'm not a discouragement because you may heal very fast, but I wanted to share my personal experience. And I had a very high pain tolerance prior to my PE and did lots of physical activity. I have adjusted my lifestyle until I start to feel better (and I have gotten better, just a very slow process). My pulmonologist said that the bigger clots were more dangerous in the beginning, but most of those patients she has seen had much less pain then the ones who had multiple ones (not a "real" study, but her observations) Hang in there and hope you can look back through the archives and you will find a wealth of information written in the last few years.

My first three months were the worst and I could only sleep with LOTS of pillows to keep me in an upright position. If I layed down flat- the pain would increase. I think you will find this very common for most people on this message board for at least the first month. The strange thing is I can now sleep on my stomach at night, but sleeping flat on my back is still uncomfortable for my lung area so I remain propped up with a large pillow most of the time. I hope you will continue to heal!

Hello AlexadraK,

Thank you for sharing you experience. It helps us "newbies" get our minds around a scary matter.

I'm surprised that they haven't already conducted a genetic test on you yet. I had mine conducted the same week I was diagnosed...

You are right...the pain is relative to each patient. I regret your discomfort. Many have said that the pain is worst at night. This is true for me too.

I conducted extensive internet research today and found several "comfort" remedies which are not the typical things I'm already doing, which is pain medication and sleeping on pillows.

...I put this out for other PE pain "newbies" to perhaps increase comfort: 1. hugging a pillow on the side of pain...feels good
2. I splinted my chest with an ace bandage and pain has dropped to a 2 (1-10 scale)...feels good
3. steam...ex in the shower...inhaling deeply to get the "ole lung" to get back to normal...One internet site recommended a humidifier...I have not tried this.
4. it was suggested that some find comfort by sleeping on the painful side...I have not tried this

You are right about me spending more time looking at the enormous wealth of advice offered by others...

Thanks again :}

...opps I forgot to mention the heating pad...placing it on my chest at night helps too...others have suggested it on this site too...

...also, someone on this site had asked if other migraine suffers' headaches improved by taking Coumadin...Yep, Coumadin has had this this positive effect for me too...I thought it was just a figment of my imagination...happy about that!!!

That was my secret weapon -the heating pad or moist heat- like the hot shower felt good. I had pain for 18 months. I knew my breathing had changed-lots of short shallow breaths all the time, sighing and yawning a lot- started from pain -then my body just sort of continued on. Anyway-that bad breathin-diagnosed as chronic hyperventilation syndrome was what kept my chest hurting. I finally found comfort in 2 things. You are quite new-so this may not be youe scenario -but if it begins to look tha tway, then you know where to go. #1 Accupuncture from a pain specialist. #2 A class on how to breath correctly and sort of reset my brain to breth the correct way again. It is a method called Buteyko breathing-named after the Russian doctor who developed it. It was difficult to find an instructor in my area-but finally found one this past March. I still am working to breath even better-but I am at a point wher I don't experince chest pain very often or as intense as before. You an google it and find out more info if you are interested -I see they have it on DVD now too. Give yourself some time to heal -there is a lot of info on here that will help and people who have been there and know what you are going through and just who care. So continue to try the heat, and let us know how you are progressing. Blessing, Teri