Yes, this can definitely happen. As I sit here now my leg in which I had clots a little over 2 years ago is killing me, although the one that just clotted 6 weeks ago feels fine.......

My doctor called it chronic venous insufficiency, most people here call is post thrombotic syndrome, or PTS. DVT can damage the insides of your veins and prevent the blood from flowing normally. There are a lot of things which can contribute, including the severity of the initial clotting, how well your body has compensated with peripheral veins, whether you use compression stockings, how much you exercise, etc., the list does go on.....

Not everyone gets it, sometimes even people who had pretty extensive clotting fully recover. But in my case besides the actual pain that I feel sometimes my leg feels heavy, or in the earlier stages (like a year ago) I often had this sensation like it was going to explode. If you're not already wearing compression stockings I would highly recommend it, since they help most people tremendously. I find that walking improves how my leg feels so much - a little painful in the beginning, but now the more I can walk the better my leg; and if I have to sit I move my feet around a lot to at least move my calf muscles which helps with blood flow. I try not to stand for long periods of time, as that is just about the worst thing for me, unless I have to sit like a normal person - which of course I very rarely do because it's just become second nature for me to prop up my leg as soon as I sit.

Also, don't get too discouraged by the fact that you are still experiencing pain. It doesn't mean that it won't continue to get better, especially if you haven't been doing some of the things I mentioned. Ever since I got my DVTs, though, I did everything I knew to try to take good care of it, and I still saw a TON of progress between year one and year two. But in any case, definitely don't worry that you're abnormal or anything - a lot of us have this problem.

Feel better and best wishes!
Sarah

thank you Sarah......this is very helpful! I wish my doctor would say some of this. He did not say anything about the compression stockings. I know that for me, standing or sitting too long makes my leg feel worse. Also I have noticed that even sleeping with my leg straight will hurt.
Since my doctor is only a primary general practitioner, do you think I should insist on seeing another doctor, and what kind of doctor specializes in these matters?

R.L

I actually had to sleep with my legs elevated up on a pillow for a long time after my DVT and still sometimes do it when I've had a bad day.

It's kind of up to you if you'd want to see a specialist. If you have PTS then there really isn't much that they can actually do for you, other than to educate you on how to take care of your leg so that it feels as good as it can. There are a lot of people who see hematologists here and use them as kind of their primary point of care for clotting issues, and if you were having problems with INR management or continued clotting problems, the hema would be the way to go. But in my opinion when you're talking symptoms of continued pain the leg that's more likely related to structural venous damage, so a vascular surgeon would be the way to go. As I said, it would be a situation more of confirming that he agrees that you have PTS and educating you on how to feel better, more than going to look for a surgical type of solution. I adore my vascular team who has treated me since I got DVT/PE and they've been excellent teaching me how to take care of myself. But like with anything, there are good and bad ones out there - a lot of people here say they learn more from this site talking to other patients than they do from their doctors. If you were interested in getting compression stockings you could talk to your regular doctor even about what type of stocking (knee high or thigh high - that usually depends on where the clot was) and what level of compression you should get. Insurance usually requires that you have a prescription if they cover the cost of that (they aren't cheap). But you can actually get compression stockings without a prescription, just be sure you're getting high quality and the appropriate size - there are leg measurements you can take yourself to find out the right size, or there are places where you can be sized for them too.

I was still absolutely healing one year after my first DVT. I would say it took about two years to feel completely normal again. That's not to say that I was in pain all the time, just that certain positions or activities would cause issues and sometimes I would drop into a limp without even noticing it.

Hang in there! there is still lots of time to heal!

Oh, yeah! Thanks TNT because I usually start out pointing out to people how there is still a lot of improvement to be made even after one year. Coumadin does make my mind foggy and somehow I completely overlooked that here.

It is completely true that you will likely still see a lot of improvement in how you feel, so don't get discouraged or anything just because you're still experiencing pain. But some of the things I mentioned still hold true as being something good to help you while you continue recovering.

Its interesting to hear the different side effects people experience with coumadin. Luckily my husband hasn't experienced any of them.
I've also heard people feel differently after dvt or pe due to their bodies compensating for the changes their bodies have endured. PE and DVT is a major insult to the body. It is also very common for one to experience depression after such an episode.
So, r6leslie, I don't think your experiencing phantom pain but actual residual pain after your pe/dvt,even though it has been a year. Some docs are really good at explaining these things and some are just plain awful. The best education you can get is being on this site and doing your own literary research on the topic. There's tons of information out there on dvt and pe.
Have a great weekend........:)...Lu

What happens also is that some General Practitioners lack the education in this specialised field.
But like others have said, it's not before two years post DVT diagnose that I was diagnosed with PTS (Post Thrombotic Syndrome).
Without saying "yes what you have is PTS", it sounds like what I was/am experience when I sit/stand for an extended period, SPECIALLY if I'm not wearing my FUGLY(compression sock).
I have seen myself limping to my car because of the swelling and the pain after a long day at work.
See if your GP will refer you to an hematologist, he/she would know about PTS.

That's my $0.02...

When PTS symptoms started occuring for me, my internist at the time ordered a doppler to make sure I didn't have another DVT and then when the scan came back negative for clots, I was given a referal to an orthopedist because of the knee swelling and pain, Never mind my calf being swollen and sore. I knew it wasn't an orthopedic issue. I mean, that was just just to push me off on someone else. I happened to have a check up with the cardiologist who treated my PE shortly after I saw my internist and mentioned my leg was starting to bother me (this was about 15 or 18 months after my DVT). He took one look at my leg and said I had PTS and prescribed me comression stockings. I am certain this all had to do with his experience with blood clots.

I'm not saying you need to see a specialist or that you have PTS. I just think some docs are more experienced with this kind of thing, even if it's just an internist or a PCP. I think you could start asking your doc the specific questions, like whether he thinks you have PTS, can he prescribe stockings, etc. If he blows you off or appears to be clueless, time to look for another doc,in my opinion.

thank you thank you all!! I am going back to doctor next week......it's weird how he didn't prescribe compression stockings? I was followed closely by ortho dr....my dvt originated, in theory, from my knee dislocating...so the ortho discovered my dvt about 3 weeks later....I did not have usual symptoms other than pain.....I never had swelling, no redness and the first couple of d dimers were negative...all dr's looked at me and said it was muscle strains...luckily my ortho insisted that hospital do ultrasound...my blood clot was the whole length of my leg....then next day, I had really bad pain in groin, I swear I felt a big chunk go through...had PE that night....
sorry to go on, I am still dealing with the stress and I guess I have bit of PTSD....it's been hard to deal with......so when I get sick, it's hard for me...it's scary.....I never had the telltale signs other than pain.

thank you all for your comments, this is therapy for me, it helps me to normalize and get my feelings out to people who really do understand and care.

I will go back to my primary and insist on referral to see vascular dr.....oh, and my knee never healed as it should have....i should have had surgery, have piece of cartilege and bone fragment from the dislocation...my ortho said he wouldn't do surgery because of my high risk....but funny, my knee doesn't hurt.....it's the calf area?

R. L