I was told by a hematologist that the aching in my DVT leg is inflammation related to activity. She said it's not dangerous at all, and that if it turns out to be PTS I can treat the aching with NSAIDs after I'm off the warfarin.

Good luck!

HI david,
I also get pain and aching like yourself.
I dont get much excercise because of my broken foot.
My pain gets unbearable when Im standing with my cruches after about 5 minutes and gets worst at night.
I suppose its all to do with the DVT.
I take co-codamol 30/500 but only when the pain his severe has they can cause constipation.
Do you where compresion stockings I do believe these can help stop thromb syndrome.
Unfortunately my consultant said I cant wear them because of my broken foot which is unprotected and I have extremly bad circulation before I had the DVT. I should have had vascular surgery on my leg but had to be posponed due to broken foot followed by my DVT the full lengh of my left leg.
To help with my pain I listen to my body and rest and elevate my leg/foot.
Im not to sure on Warfarin side effects, other than it makes my skin very dry and hair loss.
Maggie x

If you're not on the brand name version of coumadin (i.e. taking a generic), you might consider asking your doctor to change your prescription. While similiar, the two formulations are different and some people--like me, for instance--have problems.

I think I would ask another doctor myself. I understand having inflammation from the clot, but I can't imagine it only happening when you take the warfarin. How long ago were you diagnosed with your clot?

What do you mean it only happens when you're taking warfarin? You're either on warfarin daily or you're done taking it. If you're messing around with your own dosage, stopping and starting in some self-experimentation, that could be part of your problem.

Most of us have side effects that we attribute to warfarin (we could attribute them to our illness too, by the way) and we learn to live with it. We cope, whether it's for the short term or the long haul.

But if taking warfarin impacted me the way it impacts you, I'd seriously have to consider my quality of life vs. the quantity of it.

It's apparent through your many posts on this subject that you are unable to cope with taking warfarin, physically or psychologically, so you should talk to your doctor about going back on lovenox injections and taking you off warfarin completely. Explain to the doc how It's disrupting your life David, in very dramatic ways.

Something doesn't add up here. Are you not taking your warfarin consistently or are you taking it plus supplementing with an herbal or natural supplement? If so, maybe that's the issue.

Also, recovery from a DVT can take a while and it can REALLY, REALLY hurt; the pain can be constant or come and go. Maybe that's at play too. My DVT pain was probably the worst pain I've ever experienced. I was given pain meds for it, just to take the edge off so that I could function.

Warfarin typically doesn't cause this type of pain, but if you really beleive the pain is due to warfarin and you can't take it, and your doc is not being helpful, you should probably find another doctor.

I havee also read that having a traumatic physical/psychological event can bring on the onset of Fibromyalgia.

thanks everyone rmb, danielle,all- it's the warfarin. I lowered dose temp and let it also get out of my system and the aching went away. As I resumed warfarin it came back. I called the FDA and the lady there was really nice and she is having me complete an adverse event reporting form. I'm gonna report about thecrushing fatigue, brain reduction effects, word retrieval, hair, skin, gastro-intestinal effects, etc. The FDA said they could take it off the market. Anyway I'm not doing anything mega herbal just my usual nutrients I've always taken. Besides ginger tea in small amounts, natural garlic, my omega 3, and multi I don't put any real faith herbals are gonna cure me. I'm a scientific realist. And nothings wrong with by doctor, she can't help me if that's my reaction to the meds, it's the only game in town and there is no Game Changer at this time. You've got factors a, 1, 2, 4,5,7,8,10 etc that the body uses to make proteins that in turn create thrombin that is used to make fibrin and blocking these and vitK reduces the availability/production of these things which in turn increases our clotting time. That's it. No mystery by increasing our clotting time we live! The blood hanging out in our injured veins have less of a chance to clot.

Laura good suggestion about lovenox. Out here in my health plan they give arikstra which I guess is the same deal a lmw injectable heparin. My doctor was gonna give me that but she changed her mind saying that the bleeding/hemorage risk almost doubles from that of warfarin. And she said it is not recommended or proven for any long term use just short term like for bridging, pregnant women etc. I'm a life term user as I have hypercoagulability. So, for me yes um in a quest as long as it takes me to find an alternative that works, that's proven, and I know there will be one in the near future. But thanks Laura, my lifestyle is very high risk plus I'm totally accident prone. I nearly sliced off my thumb pruning trees, car accidents are epidemic here even if I'm a good driver, I do little and bigger fix it jobs so I'm always using tools - all these things I can easily bleed seriously plus my job is working with crazy often violent people and they scratch, bite, try to Hirt you by throwing objects at you... I got a higher risk of bleeding events... Well, I appreciate your help.

i dont have a DVT but pelvic varicose veins from damaged valves in the veins. and i get the pain all over too, in my case it is from a lack of blood flow to my upper body. it is completely debilitating for me.
thought i would mention that to give you a new idea.

As for me, my PTS have been really bad lately, so yes my right leg is bothering me immensely and i have been OFF of anticoags since June this year. You are playing with fire, stopping your antiocoags like that. What are you trying to do, get another clot?
You have been warned...

My DVT arm has been killing me lately myself, Dero.

I had the DVT in my leg in 2007 and the PTS is under control the last few months and feels pretty good.

I had the DVT in my arm in 2008 and while I've not been diagnosed with PTS in my arm, the bugger hurts like hell at times. But not always; the pain comes and goes. It's either achy, like it feels after you get a vaccine, or I get shooting, hot pain in my inner elbow. There's no swelling or redness. I'm going through this the last week, in fact. It will last a while and then suddenly subside. I just think my arm is f****ed up from the DVT. Sorry for swearing (not really), but I can't think of a scientific or medical equivalent.

For me, if I don't stay hydrated, and I mean REALLY hydrated, I feel like crap all over. I get headaches, body aches, dizziness, brain fog, muscles cramps, tingly in my face and hands. I've gone to the hospital thinking I was having a stroke and they do blood work and just say, dang, you're dehydrated! So, whenever I start feeling achy, I start pounded the water.

hypertension, lack of blood flow causes dehydration even if one deinks loads. i have it

oops.. 'drinks'* loads...

I don't have hypertension, but this is good for people to know.