Jerry, the back of my knee is full and stiff, so I kind of know what you're talking about. In fact there were times where I thought it was a Bakers cyst too. When my PTS symptoms are really up there, it's difficult take a step without it feeling like my whole leg vibrates and the pain radiates up to the back of my knee. I wonder if physical therapy would help you get some mobility back with that. Because walking differently to compensate for that is also going to cause pain and screw up your mobility as well.

I posted this article once before here. It discusses how understanding the psychology of pain can help improve treatment for chronic and acute pain. It does discuss, in part, opiate dependency. Thats just part of the overall article so Im not implying anyone here is opiate dependent or shouldnt have pain meds. But I think looking at pain through a different lens helps cope with it..

http://www.medicine.wisc.edu/~williams/painpsychology.pdf

The opiate thing is true. It would be much better for people not to be on pain pills. The only reason why I take them in moderation is because I have a very strong will power. I have done a lot of different drugs in my teen years and just walked away from it all because it was a waste of time. I don't get excited very easily, thus I do not get hooked on stuff. But Norco's are a very addictive drug. I think I am possibly addicted to 1 pill a day. Now any doper would read that 1 pill a day statement and laugh like crazy lol. I'm going to try working out soon and see how that goes.

The problem is the bumb feels so weird back there. I mean it feel so weird and hurts so much that I can't even wear thigh high stockings. I bet some thigh high stalkings would help the swelling go down, but like I said, it's way too painful. I try and not mess with that area of my leg. Sometimes I try and overdo things and it feels like something is ripping back there. If that knot behind the knee was gone I'd definitely be able to drive again. Also as stated in other posts no one who is treating me is even concerned about the knot. My treating Physician won't even look at it or toch it.

It's really weird because I've read about people who have severe edema and no pain. I have no edema and massive pain. I guess trying to figure out the particulars is going to be like interpreting Shakespears Hamlet. I've been testing my leg this week. I haven't worn a compression stalking in 4 days now and the swelling is still down. I've just been noticing my leg falls asleep a bit more than it normally does when I have the compression stalkings on. Do any of you ever wonder if it would be better to cut the leg off above the knee and just use a prostesis? At least the pain would be gone right? I've been thinking about that a lot lately.

Once again, please forgive me for using the word stalkings instead of stockings.

For me, I'd need to be completely incapacitated before I'd chop off my leg, but I mean, I say that as I sit here in no pain at the moment so it's easy for me to say that.

Is your doc LITERALLY not looking at the bump or touching it? I mean, I'm trying to imagine being in my doc's office and asking him to look at something and he flat out says no. He'd never do that, so I'd have to question whether I'd want to continue my relationship with that doc.

I have bad days where I think about chopping my leg off, too. Honestly, I think its a pretty normal reaction. But there are a lot of reasons why that would be a bad idea. Your chances of developing a phantom limb (where you still feel the pain in your leg, despite it being physically gone) are a lot higher when you have unresolved pain before amputation.

If I were you, I would talk to another doctor before you seriously considered that route. Maybe they could try a more aggressive treatment to get rid of the unresolved clot faster. Which doctor you are seeing can have a big effect on how your treatment goes, so there may be options, other than amputation, that could resolve your pain.

My cousin lost both of her legs due to diabetes. I get so frustrated with my DVT leg sometimes that I literally feel like I just want to beat the crap out of it. But in the back of my mind, I always tell myself, "Well, at least I still have my legs." Prosthetics seem like a great solution in theory, but they bring on all kinds of new problems. My leg can swell up to twice its "normal" size (which is already much bigger than the other leg), turn purple, hurt to high Heaven with throbbing and stabbing pains, and I will still leave it there until it either falls off on its own or threatens my life somehow. It gets my from point A to point B, so who am I to complain? :-)

I'm not going to have it amputated. They won't do that unless the leg dies. I just wonder if being a pain free amputee would be better than being a pain ridden non-amputee. But the thought of phantom pain is not that appealing either.

I started off good today, did two hours of cleaning with no leg pain, then I sat down on the computer (only been sitting here for 30 minutes) and the pain is back! I used to be able to sit on the internet for 18 hours at a time in 2002. I guess my life is going to involve me being surgically attached to a couch. One of these days I'm going to see how far I can wall before I have to stop. Last time I tried this is was about a half a mile and I was in severe pain for at least a day afterwards.

I can say the only reason why I am coping with this with less pain is because I spend most of the day with my leg elevated on the couch, or sleeping with it elevated. When I first get up I have a 3 hour window before pain sets in and I have to elevate again. I might get an exercise bike and try some ecercise to see if that improves things. If not then I'm going to have to get a job as a psychistrist. The only exception to the rule is that my patients will have to sit in my chair and I'll be the one laying on the couch lol.

Thanke for all of the input. I really like to see how each and every one of you deal with things in your own different ways. I am taking notes and getting ready to shake things up a little bit.

@jerry1976

Are you wearing compression stockings? Do those help at all?

And are you wearing prescribed, custom made stockings. I do know that stockings can be uncomfortable for some people to the point where they are too painful to wear, or they actually seems to cause more issues than help so they do better without them, but you also have to make sure they're fitted properly and that you have them on properly so the compression is hitting you in the appropriate parts of your leg (that's why custom made stockings usually work so well).

It could very well be you have PTS at this point. Are you elevating your leg as you sit at the computer? That can help.

Previously spending eighteen hours at a time on the computer...WHAT? No offense, but dude, that's insane

Have you thought of swimming as a form of exercise? That helped me so much in the beginning, since the water took away some of my body's weight. Made it much easier on my legs, until I could build the muscles back up again.

My doc recommended swimming, too, for the same reasons. I've heard that recumbant bikes are pretty good too. My doctor acted like getting exercise was the surest way to improve the condition of your leg, but he told me to start slow and work my way up, rather than doing a whole bunch the first day, because it will cause more problems if you are sore from pushing so hard the day before.

As for TED hose, if you haven't tried them, give em a shot. They seriously helped with my leg pain. Good luck!

Tauffart ~
My doc said the same thing, and it's so true. Pushing yourself too hard too soon won't do anything but set you back more, but the key to getting some sense of normalcy back in that leg is rebuilding the muscles. Boo.

My stockings are not custom. I measured my calf in the morning, took down the measurements, and then gave them to a medical supply store. They have certain tolerances for each three areas of the leg that determine whether you are a small, medium, or larrge. I have the Jobst 20-30 MMhg Compression stalkings. They are knee high. The thigh high hurt too much and the 30-40 MMhg stockings were too tight, uncomfortable, and actually caused my leg to swell.

I'm gonna look into an exercise bike this coming week and a weight set for my upper body. As I told you guys in other posts I use my arms to lift me out of chairs, onto the toilet, and to take up the slack for my leg. I'm going to try and super-strenghten my upper body so that I can continue to use it to maintain my mobility. I had to limit how many times I do use my arms to lift mo body as I've sprained my arms a few times to the point where I couldn't even lift a kitchen pot or a pan, wash dishes, or anything.

The only thing that has helped me actually get my arms back to normal was when I had a falling out with my business partner 4 months ago and decided to sell him the company. I used to be on call 12 hours every night to monitor our drivers that were on loads. Sometimes brokers or shippers would call and want an immediate update ( even though I provided them on a strict three hour schedule) and I would have to literally thrust myself out of the chair and limp upstairs as fast as I could. My office and computer is up stairs, but where I stretch my legs out is downstairs. I was having to run up and down the stairs at least 15 times a night. That was tearing my body up badly.

Now that I've been taking it easy for 4 months things are getting batter. Also, it is true, I used to chat on the internet for 18 hours at a time. I also used to spend 18 hours a day looking for loads and dispatching my trucks before I got the blood clot. I parked my van and opened up my own delivery company with me as the dispatcher before I got sick.

That is how I was able to stay at home, off my feet, save money, and survive this blood clot. I got hurt when business was slowing down and I had to go out on the road and take one way trips to help pay for some of my fixed monthly expenses. I was unloading some boxes off the back of my van and fell backwards because they were too close to the back doors. Then I just continued to work through the pain until my back was getting tore up trying to climb up and down the van. I had to do a 5 step process to pull myself up on the good leg, contort and fold myself into the van etc. It became unbearable. That is when I put the driver in the van and had a buddy of mine driver me to the hospital.

So not not working provides me with time to heal up, but my income has completely dried up. I'd start a new company if I had the same strength that I did 2 years ago. It's an 18 hour a day job. I can't put in 18 hour days in my current physical state. Once again I had no leg pain for 6 hours now, but as soon as I sat down in my trusty computer chair, the pain is setting in fast. That is my whole concern about working, I am only pain free when I am on the couch with my leg elevated. All other times the pain can be from moderate to intense.

I have no bulging veins, I have no red or discolored skin on the leg, I have no significant swekking, I simpl have pain that goes all the way down to the bone. Also this leg was tore up once before by a vicious dog attack. No clotting happend. That was when I was 15 years old. So this leg has been hit two times by trauma. It was never weak like it is now, I only felt some uncomfort when I would have it holding down the gas pedal for 18 hours, but nothing like I feel now.

You gotta understand I used to be fearless and just run out of here with a duffle bag and a pick-up address. I never worried about things. Now I'm afraid to even go on a road trip to my brothers house in Washington state. It's only a 1000 mile trip. I've done it dozens of times, it usually takes me 16 and a half hours. Now I have to maneuver just to get into a compact car let alone a 1 ton cargo van. So I might just try the disability thing for now to get it going and if for some reason I do get better, or reopen another business, I'll scrap the disability and move forward. Any how thanks for your replies I really appreciate it.

Sorry for the winded response. I am in a typing mood tonight. I was going to add that I am very afraid of pushing it at all. I am scared to do a couple of reps of leg curls, or on the exercise bike just to feel that nasty bump behind my knee rip or something. I am babying my leg because I really don't want to think about what my life will be like if I lose what little mobility I currently have. I can at least get around, shop, clean here and there, and care for myself without assistance. I don't want to push it and lose that by over-taxing the leg. So as you can see I'm quite apprehensive with getting the exercise bike.

Jerry, if your worried about the exercise bike, just take it super slow. Slower than you even think. Maybe just stay on it at the lowest resistance for 60 seconds, tops, and then get off, rest, see how your leg feels. I sense you do things big, like go all out initially but I think you have to change your thinking about that, and practice some restraint at least for now. If the bike is too daunting, I think swimming is an excellent idea. In fact that may be really therapeutic for you.

I think most of us really do understand about what you used to do and now how hard it is. I used to travel all over the world, and now just the idea of getting on a plane makes me apprehensive about clotting, even though I'm on warfarin. There are certain things we need to resolve in our heads after a clot, and there are certain things we need to accept after a clot. We all had to go through some kind of mental, emotional and physical healing of some kind, I think particularly if you had a PE with your DVT.

My DVT leg is the same leg I did ligament damage to in high school (torn ligaments due to slam dancing... it's the classic early 80s story!). So I do understand having issues with a DVT leg that is sort of messed up already. I think that's why I experience so many knee problems since the clot- swelling, that feeling of fullness behind me knee, etc).

Last night I went for a long, rigorous hike which I've been doing all week since our shitty weather all winter long finally broke. My leg really hurt after I got home after. I propped it up on a foot stool, and I could see the band from my sock deeply indented into my skin due to swelling, and it felt like someone was grinding a screw driver into the inside of my calf, plus my knee was bright red. I don't care. I'm going to do it again tonight. I know that pain is subjective and I certainly can appreciate being in so much pain you feel like you can't do anything about it. But I think finding ways to cope with it, and not fixate on it will serve everyone well. Sitting home is BAD for your head. I don't care what anyone says. I'd rather be in crippling pain than sit there with just me and my thoughts any longer than necessary. Too much thinking is highly overrated.