also i forgot i do tell my primary doctor but all he tells me is that its my muscles cramping and i'm not doctor but i am sure its not that

It's not unusual to have some pain for a while after a PE, but it may give you piece of mind to consult with a pulmonary doctor if the pain is that bad.

If you are feeling depressed or super worried about it, which it sounds like you are, that isn't helping and may make you feel physically worse. You may want to consider doing some meditation or some breathing exercises or talking to someone. Seriously, I had to do a lot of that the first 6 months of my PE recovery just to help me cope with things. It really helps. I always feel bad for people who are recovering from a PE and a knee or hip surgery because I think you end up limited in your activity which to me is depressing in itself because it gives you so much down time to think... and worry.... and contemplate how much it all sucks. Too much time on our hands is not good, for our bodies, minds and spirits, in my opinion.

My PEs were over 6 years ago and I still occasionally get sharp pains between my shoulder blades or in my upper back. BUT, it's manageable and I live a great, full life, do all that I did before the PEs. I also suffered heart damage from my PE, and I totally recovered from that as well and I didn't have youth on my side. I tell you these things so you understand recovery is not only possible, but probable.

Hey! Really sorry to hear everything that you've gone through. Having to deal with knee issues on top of PE recovery has got to be extremely difficult.

I'm glad to hear that you've seen some improvement in your first few months of recovery. I would think that you'll continue to improve from here on out. There's no reason to assume that you won't.

It doesn't sound like your doctor is being very supportive. What IS being done to help you recover from both the knee surgery and the PEs? Are you in physical therapy for your knee? Are you doing any walking at all? Have you been given any pain killers at all? If you feel like your doc is blowing you off, it is time to find a new doctor. Not all doctors are the same and having someone who you feel like is actually listening to you can make a world of difference and help with your recovery.

Also, it sounds like you're also dealing with some depression on top of the physical issues. That can drag you down just as much as pain can, if you let it. You need to talk to your doc about getting that treated as well. If you aren't comfortable with your doctor, you need to come up with some other ways of treating the depression: journaling, meds, therapy, meditation, or whatever really appeals to you. You have got to sort through that, or it'll take over your life.

I think, for most of us, the recovery just from the PEs can be really hard. It is a struggle both mentally and physically and it almost always takes longer than we want it to. You've got a lot going on and you need to get some support ASAP to help you deal with it all. If your doc isn't supportive, find one who is.

As for the pain, you don't say what kind of clots you had or how many, but they can cause parts of your lung to die, which can be very painful as you start to heal from that damage. It does get better over time, but it can take a while. I think most of us deal with pain at some point during this healing and some people have a lot of pain and a lot of healing to do. But, of course, what you feel now isn't necessarily what you'll always feel. Do you have less pain than you did a month ago? Two months ago? Then you're making progress. The fact that it is slower progress than you want doesn't mean it isn't happening.

Hang in there and get some support during this recovery! Find another primary doctor, if possible, and consider seeing a pulmonologist to help you identify what is really going on with your lungs. Also, you should check in with whoever did the knee surgery to make sure that things are progressing there and to see what you can be doing to speed things along.

It really does get better... I'll be four years out from my diagnosis at the end of this month and I'd say I'm pretty much back to where I was before.

Hang in there and keep us posted on how you are doing!

thanks rmb for the advice its nice to hear that some people do make it out of this

thanks tossnturn for the advice as well and for my knee im going to physical therapy so that seems to help but for the pe all i get told is take your warfrain and dont eat lots of green i get my inr check every two weeks When i got my clots back in august doctors said there were multiple blood clots in both my lungs also said it was due to my knee surgery but they scanned both my legs and only found a blood clot on my opposite leg the leg that i didnt have surgery? so that sorta confused me

If it was the immobility from the surgery that caused the clot then it makes sense it could be in either leg. I know it's almost anticlimactic considering you've had such a life threatening event, but it is true that once you're diagnosed with the clot and put on anticoagulants, there's not much else to do.

I know you feel like it's the end of life as you knew it. I too was recently diagnosed with PE and DVT but mine is likely genetic. I'm 21 and was very active in ice hockey. I can sympathize with you on things being taken away so quickly as I will likely never get to play the game again which sucks. I also suffer from extreme anxiety associated with this. I'm not as far along as you but I still have some pain on and off in different parts of my body, especially my lungs/chest. Instead of looking at what was taken from you, look at what was given to you, that being a second chance at life after suffering from something that very well could have had worse consequences. I'm trying to get over this mess just as you are and I assure you that you can't find a better group of people to talk with and help you through it than this group you are posting in.

I know some people who had knee surgery and I studied it in my Physical Therapy classes. It's about 6 months until your knee starts feeling good. You have made it 5 months since surgery so feeling better fast is right around the corner for you. One day this leg pain and chest pain will be a past memory. I know you can't wait for that day,
I am a martial artist and after my saddle PE I was told I had post-thrombosis and my leg wouldn't get better than it was (which was not being able to walk at all). There was no progress that I saw at all the first month. I thought I was going to be in a wheelchair forever. After the first month though I saw great progress with my leg everyday and went from wheelchair to walker (the looks I got using a walker at age 35 in Walmart!) to crutches to nothing. You had surgery so unfortunately it takes a bit longer but you are almost in the good feeling phase.
So yeah I had heart attack, saddle PE which means no blood could get to any lungs, extreme leg pain from massive DVT, and felt like a 90 year old too. It is awful feeling. I also had lots of anxiety about death, being dependent, feeling lost. A low dose of anxiety meds had helped me personally but it's not for everyone. I did have pain pills but after having a scare of vomiting blood from ulcer combined with warfarin I decided to quit any pain pills that might erode my stomach.

They say "What doesn't kill you only makes you stronger" you will be a super hero after this! Thankfully this will be in your past soon and you will be stronger for it.

i never looked at it like that, you have a good point thanks for the advice bsmith4421 i hope things get better with you as well

yes i hope that day comes sooner i just want one day without pain i want to live a normal life again i want to be able to walk correctly and not have chest pains all of a sudden. this is the best thing i have heard in a while thanks for that They say "What doesn't kill you only makes you stronger" you will be a super hero after this! Thankfully this will be in your past soon and you will be stronger again thanks Cherbicide78!