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 "Phantom Pains"

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saimnaa

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Posts : 3
Join date : 2009-08-11
Location : Ames, IA

PostSubject: "Phantom Pains"   Fri Oct 09, 2009 10:46 pm

Hi,

My name is Jesse, I'm a 32 year old male, and I had a DVT with pulmonary embullisms last December. I'm really, really happy that this site is available for survivors. I've been getting a lot of useful information here. I had a clot that ran the whole of my right leg, but thankfully, most of it was "eaten" by my enzymes after about 6 months. I have finally got my coumadin levels steady (after a bleeding kidney back in April...they are still unsure why I started bleeding, as my INR was only 4.5 - high, but it shouldn't have caused such bleeding) and I am feeling pretty well.
I usually run 4 miles every other day. My issue is that I sometimes get "phantom pains" in my right leg. At one point I noticed some slight swelling but then it went away. Since yesterday, I am having a slight pain in my thigh, similar to the original pain I had when I noticed the clot. Similar, but then again, it's not as constant and it's quite dull. Furthermore, it's usual for me to have some pain after running...some soreness...maybe in the feet, calves, hips, etc. I have also pulled my calf muscles several times, and I've sprained my ankles several times. Perhaps it's just all connected. Anyway, I wanted to ask if others also get strange little pains here and there. I'm sure we all get nervous that we are getting another clot...but it seems that usually this isn't the case...and besides, I'm still on coumadin, so it should be hard to develop another clot, right? What sorts of damage happen to the veins after a clot? Is it an injury that will "talk" to you for a long time, maybe forever?
I would really appreciate any feedback concerning this issue of additional pains after the clot is gone. Many thanks!
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dero
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Posts : 904
Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: "Phantom Pains"   Mon Oct 19, 2009 9:23 pm

Hey Jess,
I get those pains most everyday... I now have PTS (Post Thrombotic Syndrome) the clot did some irreparable damages to my veins and valves in my right leg (my DVT leg) so on long days my leg swells up and hurts(not like the original swell and hurt back in 2007).
All I can do is wear my compression sock and live with the pain....

Hope it's not the same for you.

PTS does suck, after DVT, you think that was enough, here comes PTS.
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Busekrus



Posts : 2
Join date : 2009-11-29
Age : 41
Location : SE Florida

PostSubject: Re: "Phantom Pains"   Sun Nov 29, 2009 11:02 pm

Yes, I too am an avid runner. I run roughly 30-40 miles per week and it seems that when I ramp up my mileage, I get the pains like you have described. I think (and my doctors best guess) is that it is superficial blood clots which is I think the PTS that Dero notes above. I sure would like to know how to get rid of this other than "deal with it." My pain seems to go away after a day or two but it can take weeks before I can return to running. I had my 2nd dvt in october of 2008, it's now Nov 2009 as I write this and although no signs of a dvt these darn superficial clot clusters just won't go away easily. I'm training for an ironman in 2010, so my weekly mileage should bump up to around 80 a week so this pain can not keep up. I'm on warfarin/coumadin for life at this point, since it's my 2nd dvt, so do I need to up my dosage a bit on my own when I get these flare-ups?
I'm not sure why your pains seem to move around. Poor circulation can be a bitch, so who knows what else it's affecting in our muscles. Supposedly we're supposed to stay much more hydrated than the average person as well.
Has anyone else's general practitioner/doctor had any good advice for serious athletes? Mine looks like he hasn't exercised ever, so I just don't think he gets it.
If anyone wants to respond direct, feel free: marty.busekrus@gmail.com
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p_vinay



Posts : 4
Join date : 2009-05-14

PostSubject: Re: "Phantom Pains"   Fri Dec 04, 2009 2:58 pm

Hi,
This is Vinay and I am from India. I was diagnosed with DVT on Jan 2009 and from last 10 months i am still waiting for my swelling to go down. Because every day when i come home from work my left leg(DVT leg) is always fully swelled. All day i fill pain over my leg but that is not severe,its very mild.
My doctor told me that i have to live with that little pain and swelling for rest of my life. So guys i think thats how DVT works.
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christine2051



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Join date : 2010-01-26
Age : 31
Location : Ireland

PostSubject: Re: "Phantom Pains"   Thu Jan 28, 2010 7:43 pm

Hey, Yes I had my DVT in Sep 07, and I still get pains. My leg has never been the same since, doubt it ever will be. No more skrts or dresses for me again Sad lol. My bad leg swells, and is noticably bigger than the other. I walk most days, and this causes the leg to swell even more. I have been off warfarin for over a year, and I live in fear of another clot. But I do take an aspirin every other day, just for peace of mind. I found out I have factor v leiden, so I do have a good chance of developing another clot sometime. I also had a P.E before my DVT. Would really like to have just stayed on treatment, but was told this isn't possible, as it's just as dangereous to have your blood too thin as it is to have it too thick. Its 6 of one half a dozen of the other I guess!
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Masa



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Join date : 2010-03-21

PostSubject: Re: "Phantom Pains"   Tue Mar 23, 2010 7:58 am

Hey everyone!
im so glad and thankful for all of you, being here is a huge support and i feel everyone knows and understands what im talking about!
I had my DVT in the left thigh in August 09 and a minor PE 2 weeks after which sent me back the hospital and now i have an ICV filter which should be removed next month.
Im still on worfarin, Dr. said should take it for a full year, a very small dose of 1.5 mg a day skipping once a week to maintain an INR between 2-3.
when i first had the DVT, my left thigh was 14 cm bigger than the right one, now i have 1 cm difference in the calf and 2 cm in the thight between my DVT leg and my healthy one! which i hope will go away and wnt mind if it stays after all what i have been through!
my leg swells after a long day and i still wear the stupid sock.. I do have the moving pain, hip, ankle, thigh, calf... just like the ones Jess mentioned and i think we will need to live with it!!
My questions to you: how often do you experience out of breath?! this is killing me, i feel like i cant breathe most of the time, im scared to mention it to my husband and mother as i dnt want them to worry but im short of breath most of the time, do u feel so?!

Thanx again for your support, it means alot Smile Smile
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