I have PTS in the DVT leg, and the majority of the time, I just tough it out. If it keeps me from sleeping, though, I have Tramadol that I can take. It never gets rid of the pain, but it will dull it enough that I can finally fall asleep. I work a desk job, so there are numerous days where I can hardly even walk by the time I get home. I still sleep with it elevated on a pillow when it's bad, and even on good days, I sleep on my side with a pillow between my legs. It hurts for the knee bone of my "good" leg to touch the knee of the "bad" leg. You get used to it after a while and just do whatever it takes to get by.

Yeah you have to readjust your entire way of life. The Norco's don't really take away the pain. They do if I pop three of them, but I'm not that big of a druggie. I do notice that if I take a Norco before I go to sleep I wake up in the morning feeling a lot better. I think the pain pills also help some with the inflammation. I got ahead of myself on Friday and walled up and dowm the stairs 7 times and that was enough to cause some really bad pain. I can barely limp up and down the stairs anymore. When I come down the stairs I used my left arm on the support rail and slide down while holding the wall with my right arm and elbow. There is a solid wall on the right side of the staircase that allows me to do this. Withoug the extra support I'd probably have to use a cane to get down the stairs. I simply limit the amount of times I come up and down the stairs. It's funny because one doctor keeps on saying that the DVT doesn't affect the functionality of the leg and that it is all in my head. Any how I truly commend you Luckymomm for being able to work like this. Even Dero works on his feet all day and bears the pain. But what gets me the most is if the DVT supposedly doesn't cause problems with movement, why does the doctor continue to fill my script for 60 Norcos each month? I guess there is something to the pain.

I think there is a fine line to toughing it out and also using the medications available to make getting through the day tolerable. After my first DVT I took 1-2 Vicodin 5/500 every night to help me sleep. Without it the pain was to the point I couldn't sleep at all. I remember coming home from work early and taking really hot baths to try and relax me hopefully enough to make it through to the evening when I would take the pain pills. When I went off Coumadin after 8 months I was able to start taking ibuprofen again. I still took the Vicodin for another 6 months after that to help me sleep but eventually weened myself off it.

With my second DVT (7 years after the 1st) I developed pretty severe PTS I have had to take more pain pills. I also take Gabapentin which helps a little. My doctor concedes that I will most likely be on some sort of pain medication for the rest of my life. I know that there are those here who proudly state they do not need to take anything and they have avoided the trappings of pills. Good for them. I wish my situations was the same. But I have realized that if taking pain medication allows me to get through my day and have some sort of life then that is what I am going to do. Because of a small percentage of people who abuse prescription medications in this country the rest of us who need it get labeled as "druggies" or "addicts". Depending on which pharmacist fills my prescription at my pharmacy I get a judging look and almost the feeling they want to turn me away. My life is hard enough without worrying about people who have no idea about what I go through judging the course of treatment my doctor and I have chosen to make my life liveable.

Okay, I am getting down from my soap box. I wish you the best....

To be fair, I think some of what is perceived as judgement is kind of imagined and it's our own feelings about taking the meds that makes us feel that way. My pharmacy is so busy it's hard to imagine any one of the pharmacists there carving out time in their transaction with me to give me judging look.

Pain management is a legitimate practice. It becomes an issue for Pharmacists when they see multiple prescriptions from different doctors which implies someone has a problem.

rmb- we are going to have to agree to disagree agreeably. With every news story and article about prescription pain medication abuse there is judgement everywhere. I know that in emergency rooms doctors are flooded with addicts looking for a fix everyday. When someone like me who is young and athletic looking is filling the type of prescriptions I do in the amounts I get there have been a few times a certain pharmacist will pause, look at me and make some sort of grunting noise as they go check to see if they even have enough to fill it. It doesn't happen every time as most of the pharmacists know me pretty well as I am picking something up a couple of times a month.

No, it's a big problem, I know. .

My brother is a paramedic and he has the same people calling 911 constantly for one thing or another, and my brother will get to their house and the person will claim that they have chest pain or can't breath, but then when all is said and done, it's just a means for a ride to an ER to get drugs. You know someone's probably not really having a heart attack when they don't want to be taken to an ER 5 minutes away but would rather go to an ER 20 minutes
away because they haven't tried to get meds from the farther ER yet.

I've known probably 10 addicts in my life, 2 that I know currently. One is a meth addict and the other is a prescription drug addict. They both behave like addicts and they look like addicts. They look like shit in fact, so that's kind of a sign there's an issue. If you're healthy looking and not acting all freaky and suspicious, like most addicts do, most doctors and pharmacists aren't going to think much of it. Some may but most don't. I suspect the pharmacist who is acting like that is just kind of a jerk, period.

I think most non addicts who take pain meds long term feel weird about it, don't like that they need the meds and feel judged about it because they're kind of judging themselves sometimes, wrongly of course because there's certainly no shame in needing something to manage pain. That's just my take though, you know. Agree to disagree agreeably like you put so well!

BlackMamba,
I completely understand where you're coming from on legitimately needing pain pills. Like I said, whatever it takes to get by. For me, sleeping goes a long way toward lowering my pain. If I don't get enough sleep at night, my leg is a mess in the morning. So in that way, I am more than willing to take something when it's bothering me at night. I'll take it during the day too. I need to keep working, so I figure that whatever keeps me able to function is more than worth the judgement that might come from others.

Sometimes they look at me funny when I go to get my pain med scripts re-filled. They always ask me if I know how to use the Norco's lol. One of these days I'm going to grab the bottle from the Pharmacy Tech's hand, pop open the lid, and swallow a couple of them like candy right in front of the other people in line. Then pay the 36 dollars and walk out of the Wal-Mart. lol. I mean people who do not have pain don't understand what it's like to need these meds. I also know someone who abuses pain meds. Takes 60 pills a week and they have no pain whatsoever. I will admit that you can get a small buzz from them, but not the kind of buzz a real druggie is looking for. I tell the docs that if I wanted to get a real high I'd get some street drugs. The pain meds are there just to help manage my pain.

Just imagine Chris Farley screaming for his scripts to be filled at Wal-Mart. lol

Every pharmacist is going to ask you about your meds, if you understand how to take it, if you have any questions. They do that with everything, and I'm sure they do that more with certain drugs. I mean, I feel like I have to do a song and dance to get my warfarin filled sometimes. It's because it's serious medication. And people die if they don't take it correctly. People can accidentally take too much prescribed pain meds so that's why pharmacists need to make sure people getting those prescriptions understand how to take their meds. It's not personal.

This feeling judged thing is fascinating to me. I'm sure there's a little bit of that, but seriously, I'm telling you, no one is paying as much attention to us as we think when we're at the pharmacy. Some of that is a projection thing on our part because we feel bad about having to take pain meds because of the stigma associated with it. That's human nature.

Jerry, when your doc says it doesn't affect functionality of the leg, I wonder if he means joint and muscle movement vs the vascular aspect (PTS). Clearly he's aware your DVT has caused pain and that you are still pain since he continues to prescribe the meds.

I think if you are still experiencing tremendous pain, take the meds when you need it. Like luckymommy said, do whatever it takes to get by sometimes. But if you want to see how it goes without taking them, then cut down on them.

I have PTS but the symptoms are more intermittent, so I'll have long stretches were my leg is ok, and then stretches where the PTS is intense with pain, redness and swelling. I find personally that riding my bike helps with the symptoms. I can't say that would help everyone but it makes a huge difference for me. I will say that my pain has never gotten progressively worse over the years. Once I tapped out at the peak of pain at my PTS onset, my pain is at that level or less, I don't take pain meds for it because I am able to get by without them. I do have Tramadol if needed, but I haven't taken any in a few years. Tramadol actually makes me feel really crappy, so I would prefer to just take Tylenol. So I think it just depends on what you can tolerate personally, and how severe your pain is which is not only a subjective thing, but a personal thing. I mean, only you can know what you can reasonably deal with without pain meds.

Yeah, I can't speak to the pain meds, but I know I've gotten cranky a few times when asked by the pharmacists if I have any questions about my warfarin. I mean, it seems like they ought to be able to just look at the computer and tell I've been on it for ages...

But, yeah, they are trained to check with every patient and sometimes they're just on autopilot ... just like all of us are. I can't really fault them for doing their jobs, just some days I find it more irritating.

Of course, there's a pharmacist now at my local Walgreens who remembers who I am and even remembers that I have a home INR tester. On one hand, its nice that she's more knowledgeable about my case, on the other hand it makes me think I'm spending too much time at the pharmacy!

It's really no-win for the pharmacists with us...

Oh yeah, there are about 4 pharmacists at my walgreens, and one of them is very personable. He sees me coming, knows who I am, pulls my meds from the bin before I even get up to the desk. I know that he likes to snowmobile and is getting married this year to his long time girlfriend; they're going to Vegas, yadda yadda yadda. Actually I'm really fond of him. And he calls me by my name before he even looks up my account. But even still, he always asks me the standard issue questions, if I have any questions etc. It's his job.

And yeah, clearly I spend way too much time there!

Well you guys seem to tolerate pain better than I do. I also have some really good days where my leg feel absolutely normal (maybe 2 times a month) and I don't take any pain meds on those days. The functionality of the leg that the doctor is referring to is the ability to climb stairs normally. I can't climb the stairs normally and I have to step up and down curbs with my left leg only. My DVT leg has no strength to it. When I try to put the weight of my entire body on it to climb up a curb or anything it just trembles uncontrollably until I let up on the pressure. If I try and climb the stairs using my DVT leg you can hear the stair case rattle as the leg trembles. The only way that I can walk up or down the stairs almost normally is to sqyat doen to where I am close to the floor and almist have to walk up the staies using my arms and legs. My doctor continues to claim that the blood clot is not responsible for this. The vast majority pain comes from the bump that is behind my knee. If this bump went away I'd be able to do a lot more.

Apparently it's not a Bakers Cyst so it has to have been caused by the clot. The bulge behind my knee is right where there is still partial blockage to the Popliteal Vein. All I want is for the pain to subside so that I can go back to work. Also my lungs have been hurting again and I don't think smoking 3 cigs a day is going to continue to fly.

I spend 16 hours on the couch last night and today feeling energyless. You know what it feels like when you get in really cold water, that shock and loss of breath. That is what I've been feeling like for three days now. I don't know how you guys do it at work. I can sit here on the computer for maybe 5 hours a day at the most, or do about 3 hours of house cleaning. I have enough money saved up to give it another year before I need to make a work decision, but I'm not that hopeful. I had to sell my truck due to the fact that I am in California and the truck is in Michigan so my intermittant income has just stopped.

All I want to do is to be able to drive again. But like I said all of the recent problems I've been having are giving me a clear picture of what I'm going to be dealing with for many years to come. I'm just a bit depressed lately having to be a semi-pill jinky and the life long warfarin diagnosis has kind of solidified my fate. Any how, thanks for all of your input, I really appreciate it.

Please forgive all of the typigraphical errors in my great works of literary genius. The economy is bad and I had to fire my editor!

Everybody deals with pain and feels it differently...no shame in that! As to your leg, I know that inflammation can cause problems,but it sounds to me like the main problem is that fact that the bump behind your knee is keeping you from using it, and over time that can cause muscle weakness, which would cause the shaky leg and inability to do stairs. I have problems with that too. It's really hard to use your leg when it hurts so much! Is there any kind of exercise you can do with it that doesn't hurt as bad? Even just tensing the muscles in your leg without moving it can help muscle tone. That may help you regain a little function. I'm sorry about your truck. I just found out that I'm going to be a lifer on Coumadin, too. Not a fun moment. My biggest thing was the alcohol limitations. I was kind of planning on letting go a little bit on my 21st birthday, but now its two drinks and done. I think we all have those things we were planning on doing before the Coumadin that are a no go now. It really stinks. Best of luck to you with your leg, and I hope that you find a solution to your loss of function.