DVT deep vein thrombosis forum

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post dvt pain
Started by jaimie in luton
Posted: August 23, 2007 at 01:15
hi, 3 years ago i had a dvt in my left leg, i was pregnant and i smoke, and as it has been in my family before ( my grandfather died of it) it was taken as high risk, well i did get over it, but back in january 2007 i had terrible pain in the same leg taking no chances i went straight to my doctor who sent me to hospital, i was put on tinzaparin injections and within the week the pain went, but two weeks ago i have suffered the same, i've had a scan done but no clot has been detected, so now being discharged from hospital i still have terrific pain i went back to my doctors he simply said it is post dvt pain, can anyone shed more light on this for me, will i be like this for ever? can i go abroad? i am 28 with a young child and i work in a casino so will this be affected? i am deeply concerned and cant get any information on this, my leg is constantly painful and i find it hard to do normal everyday things that i would normally do, my email is squidgelion@hotmail.co.uk i would be so grateful if anyone could give me information on this, thank you :)
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Re: post dvt pain
Reply #1 by Richard
Posted: August 23, 2007 at 10:38
It is possible that you are suffering from post thrombotic syndrome (PTS), which appears to be very common, and can show itself in a variety of ways.

As a first step why not Google the term and read a few articles; here are just two to get you started:
http://www.swindon-marlborough.nhs.uk/departments/anticoag/pts.htm
http://www.patient.co.uk/showdoc/23068982/

There are some tips in these articles which may help - for instance are you wearing support socks/stockings? Do you exercise regularly? Do you try to raise your legs when sitting down? I had my DVT about 9 months ago and still get occasional twinges and of course I'm really concerned the DVT might reoccur and will do anything which might prevent either a DVT or PTS.

Apart from support socks and lots of exercise I've raised the foot of my bed by a couple of inches to help bloodflow and have a couple of pillows under my legs for the same reason. I don't know whether that may considered "over the top", but you could try all these things to see if they relieve the pain.
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Reply #2 by Lisa
Posted: August 23, 2007 at 20:26
I have tons of pain in my left leg all the time, especially in my hip. My DVT went from my ankle all the way to my lower abdomen. So I continually have pain all the time, especially when I have been sitting down for long periods of time. I wear compression stockings and it really helps with the swelling. If you don't wear compression stockings I would suggest wearing them because it really will help with any swelling which indirectly helps with pain. Try it.
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Re: post dvt pain
Reply #3 by Michelle
Posted: August 26, 2007 at 03:42
Can you describe the pain you have?

I had 3 cysts / tumors removed from my abdomen, one was on my sciatic nerve and affected my left thigh (ironically where the DVT was). Since the tumor's were taken out I still get pain in my thigh, but I was wondering its PTS pain from the DVT or from damage to the sciatic nerve!?

For me it feels like twisting DEEP in my thigh, it aches and it gets worse when sitting for long periods or after lots of activity.
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Re: post dvt pain
Reply #4 by jane barker
Posted: May 3, 2008 at 16:53
I was just diagnosed with DVT 11 days ago.It is in my left calf .I was wondering how long I have the bruising around my ankle.Does this just occur initially?
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Reply #5 by Hi Jane Barker
Posted: November 26, 2008 at 10:18
How are you doing with your dvt???
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Re: post dvt pain
Reply #6 by PHIL
Posted: January 6, 2009 at 17:57
I had a DVT in my left leg in 1996 - I have been using support stockings and keeping my legs up when I can. Now, 13 years later I have developed over the past 2 years red/purple discoloration by my ankle and lower calf - The skin drys up throughout the day and peels by days end. ( everyday ) I apply a vaseline type of lotion on it every morning to keep the skin from drying up and cracking - ( very painful ) I deal with pain on a daily basis and all the doctors can do is give me tylonol to relieve some pain. Is this happening to anyone else? Are there other alternatives? Please email me @ philly13@gmail.com to respond.
Thanks
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Re: post dvt pain
Reply #7 by ellieuk
Posted: January 6, 2009 at 18:50
Phil

Firstly you really need to see a dermatologist - to my knowledge (NOT medical) there is little on the market apart from the type of emollient you appear on first glance to be using. However when you say "Vaseline" are you talking about Hydromol or the like (Ie Emulsyfying wax 30% : soft parafin 30% etc - the cheap, no-nonsense stuff which is really thick and difficult to apply - but works). Cosmetic type emollients (the lovely smelling easy to apply ones) DONT work and can make problems worse. Use the emollient to wash with as well as moisturise (DONT use shower gels etc containing perfume - infact don't use them AT ALL - they all dry the skin despite their claims) - and use washing powders which are non-biological). Avoid anything with perfumes (added softeners etc). Don't use softeners/conditioners in your washing.

BUT in any event you're not applying the emollient sufficiently - try morning AND night! (even inbetween if you can - I know that's difficult). Applying to a warm, wet body (just out of shower/bath) before drying yourself helps as it is more easily absorbed. Sounds like may be "veinous" eczema to me and you need to get checked out in order to avoid further problems.

Does it itch a lot? You nay also need a steriod cream (which unfortunately have their own side effects) but you MUST discuss this with your Dr. All all costs - avoid scratching affected areas.

Secondly - have you spoken to anyone about recurred discolouration (different spelling UK/US)? I would (humbly) suggest you go back to your Dr or seek other opinion.

Thirdly - you say you wear your stockings all the time - what are you washing them with? Are they nylon type? Look on the site re alternatives if you think this appropriate.

Take Care!
SORRY know it's horrid and hurts - know I've gone on a bit but I've been there too and it's AWFUL!

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Re: post dvt pain
Reply #8 by Phil
Posted: January 7, 2009 at 11:13
Thank you very much for your opinion. I didn't mention that I do use the emollient morning noon and night. It definately helps! It does not itch too much however, I do get small pimples around the affected area. (???) (veinous acne)? :)
I do wash my stockings (nylon type) daily with the regular wash. I probably should wash them by hand to avoid any allergens.
I will make an appointment today with a deteratologist.

Thanks again!
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Re: post dvt pain
Reply #9 by matt
Posted: February 25, 2009 at 04:34
Hi Phil and everyone who is involved in the D.V.T. forum.
I have really enjoyed reading everyones story and i understand the pain and hardtimes that you all are having with your on going D.V.T problems.I got (2006) a extensive D.V.T. in my left leg involving both the paired posteroir tibial veins and boththe paired peroneal veins the tibioperoneal trunk the entire length of the poptiteal vein and superficial femoral vein.And i also have ongoing problems with P.T.S.
I take 12 mgs of Warfarin a day and have a weekly INR test I have a INR Target of 3:4 to 4:4 as i have recloted twice.And unfortunatley I Have all the associated problems with post D.V.T. and P.T.S constant chronic pain,swelling I have to wear a D.V.T. stocking which has helped I have completed a living with constant pain course which has helped to a point in helping me manage my on going issues with having D.V.T. and P.T.S problems I can only work 5 hours a day and soon i will most likely not have employment.I have VERY SUPPORTIVE WIFE.
I am thinking of you all and send you all my support
Take Care
Matt From Goulburn Australia
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Re: post dvt pain
Reply #10 by Matt
Posted: March 4, 2009 at 07:11
Hi all
Can anyone please tell me if there is a medical cure for post thrombotic syndrome (PTS), and is it possiable to unblock a D.V.T.
vein.

Take care
Regards to all
Matt Goulburn Australia
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Reply #11 by Muriel
Posted: March 28, 2009 at 15:20
I had a DVT in my left leg about 4 years ago. From what they told me the clot went the entire length of my leg. I wear a compression stocking every day. I recently started walking, to try and lose some weight but I have a great deal of pain in the shin area of my left leg which causes me to have to stop walking. Could it be that the blood flow just can't move fast enough because of damaged veins?
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Re: post dvt pain
Reply #12 by Laura
Posted: May 15, 2009 at 06:09
Hi,Everyone I just found this wed site and am so glad I did.I have a few things to ask if anyone can help me with them that would me great.I'm 26 and got a D.V.T. and P.E. 2 years ago.I have went to 8 different DR.'s and they all say the same thing,That my clots have harden and there is nothing they can do for it.I'm in pain all the time.I'm also on a high amount of blood thinners.I have read on here where people has had things put in their legs that help.I have asked my DR.'s about it and they say it will only make it worse.Is this true? What can I do to get my life back?
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Reply #13 by Deb
Posted: May 16, 2009 at 03:20
I just had my ultra sound done..1 year from my event. I had a DVT the full length of my leg, 2 PE's had a filter put in, which may or may not have caused interanl bleeding into my belly which land me the ine ER, ICU,etc for a month..and i threw a second clot in my other leg again the full length of my leg. Funny thing is that clot went away in a few months, the first one did not. MY ultrasound showed I had clot still there or as my doc said scar tissue now, blood is flowing through the vein, and while I have some leg pain it's managable. I did ask if there was anything to do to clear out this scar tissue, and he said no , anything that could have been done would have had to be done when I presented in the ER, but I was in such bad shape from the internal bleeding they couldn't do anyhting. So I wear my compression hose(knee hi) each day to work, not always on the weekends and he said that ok...need a break from those things!!! I see the hemo doc this month for the remainder of my blood work, I'm hoping since it looks like we are leaving the filter in I can come off the coumadin all together....we shall see!
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Reply #14 by Lori
Posted: May 16, 2009 at 06:42
Deb please do not consider ever going off of Coumadin. If you have
had two clots and now have scar tissue, the chances you will develop
a new clot in the same location are higher than for a person without
a clot. The trouble of dealing with Coumadin is far worth the bad
trouble you will deal with with another clot in the same location.
The fact that you have scarring from a previous clot puts you at high
risk for developing a clot on top of the old clot. The filter only
stops most PE's but does not stop clotting.
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Re: post dvt pain
Reply #15 by T.krishna
Posted: May 19, 2009 at 10:46
After abortion
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Re: post dvt pain
Reply #16 by zara
Posted: May 20, 2009 at 17:07
For those of us who have residual pain, how do you distinguish that from the pain of a recurrent DVT? Or do you go by other symptoms such as swelling, etc? As I posted in another thread, I caught my last DVT very, very early when it was just a pain behind my knee and now I have a profound fear that every little twinge is another clot, although I am on warfarin for life and have never had a clot occur while on warfarin. How do you know that the pain is not more clotting?
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Reply #17 by David
Posted: July 21, 2009 at 20:12
My first DVT happened without my knowledge. I had pain in my groin
that was so bad I could not walk. Two doctors appointments told me
that it was back spasms and to take muscle relaxers and stay off my
feet (which in hindsight was the worst thing to do). By the time I
couldn't even crawl to the bathroom, my wife took me to hospital. I
too, was put on coumadin for life, and one year later, my clot was
gone...completely reabsorbed. Doctor told me to stay on coumadin as
precaution. 3 months after the all clear, I was back in the hospital
with another clot that runs from my ankle all the way to just 1" below
my lungs. I can't even have an IVC filter put in because where it
goes is clotted. I have pain all the time in varying amounts. I
never know if it's residual post dvt pain, or if it's something new.
:(((( Now I am on Fragmin shots - 10,000 units per day, but I still
get pain levels that go anywhere from 2 all the way up to 8 and I
can't walk. I feel the same.....how do you know when you need to go
to the hospital again??? And what can they do since I'm already on
fragmin and they cannot put in an IVC filter?
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Reply #18 by sam
Posted: February 4, 2010 at 20:39
i had a dvt in my left leg ankle to groin (2 1/2 years ago) at 20years old,9 weeks after having my second child.we have a family history of blood clots due to a protein c deficiancy so had injected heparin everyday through both my pregnancys!I still have a very swollen leg that causes alot of pain,the whole look of it including the discolouration and the shape of my ankle and knee really depresses me.ive lost over 2 stone but am still having to wear to dress sizes bigger in trousers to fit over my leg,ohhhhhhhhh!Any way went to doctor and she thinks there is something in my lower left abdomen putting pressure on top of my leg which is why my leg is still swollen,am going for ultrasound on wed so will update if is connected!
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Reply #19 by Heather Wegner
Posted: February 12, 2010 at 21:37
I was diagnosed with Dvt that was all the way through my leg up to the groin exactly six weeks aftr having my 4th child. My clot was hugh! They tell me that the clot is gone and that I have scar tissue, but my leg swells everyday still and it has been over 2 years. I am always trying to figure out when my leg swells and what was going on during that time ti try to pinpoint what the causes are. When I am going to get my period, my leg really bothers me. If my INR# is a little too high, my leg bothers me. The thing is, can you get another clot while on Coumadin? I have read different stories, but I don't know. I too am on coumadin for life cause I carry 2 blood clotting genes. I go through pain everyday and I am only 36 years old. There must be something the doctors can do.I also cannot work too many hours otherwise I am done for the day. I do know that I can't sit on the computer too long cause that bothers it the most. I wear full pantyhose compression stockings from the minute I get up till I crawl in bed. I would love to chat with neone who sufers from DVT.
heather22061974@yahoo.com
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