DVT deep vein thrombosis forum

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Started by JACOB
Posted: March 28, 2012 at 22:30
Hi everyone. Im Jacob, age 29. After the last DVT in January 2012 (4th
in my life) I was put on warfarin for a life-time. I was also advised
to wear those bloody compression stockings. Everyone says they are a
must, and they do the job. But I just cannot wear them.

I got one in Poland and I could not wear it at all. It caused a pain.
The skin around my ankle is already very soft and I felt very
uncomfortable after 20 minutes of wearing that bloody sock !

And now Im living in the UK... they gave me another sock. The leg was
measured etc. but unfortunately it is the same thing. Pain and pain.
It makes more pain than it is without that stocking.

Has anyone experienced that as well ? What should I do? If I don't
wear that stocking, is it gonna be more harmful for me ?

Pls help !
Reply #1 by Mikaela
Posted: March 29, 2012 at 03:39
Please do not give up on the stockings, Jacob! For one, it sounds like you have not
been fitted correctly, or that you have too high of a compression. Try to get a lower
compression level from your doctor before you give up. But don't give up.

The reason I say do not give up is that the stockings can help prevent a post-DVT
complication called Venous Insufficiency Disease, or Venous Reflux, which is when
damaged valves and vein walls from DVTs lead to improper circulation in your ankles
and severe varicose veins. I am currently suffering from Venous Reflux in my right
leg after being misdiagnosed as having a "back injury" four years ago, when I really
had DVT (thanks to birth control pills). The DVT episode was only diagnosed four
years after the fact, when I went to see a specialist because of the terrible circulation
in my legs and the varicose veins.

Wearing compression stockings is the only way to prevent Venous Reflex disease
after DVT. I wish my DVT had been properly diagnosed, and I had worn compression
stockings, because I wouldn't be in the place I am now. I have to get surgery next
month to close the varicose vein and prevent further complications from the Venous

Please, try to make the compression stockings work. For me, it helps to "break in" a
pair....they are most painful the first few days I wear them, then they tend to stretch
out a bit. Also, talk to your doctor about getting a less intense compression level.
Anything is better than nothing and you should wear even the least intense
compression level if that is the only one you can stand.

Like you, I am young (age 24) and worried about dealing with this for the rest of my
life... the compression stockings, though painful sometimes and unsightly, are the
one of the best remedies we have.

Best of luck!

Reply #2 by Mikaela
Posted: March 29, 2012 at 03:42
Also, if it helps at all to know this, when I first started wearing the compression
stockings I found them horrible, but now (6 months later) I am used to them and feel
better when I wear them. I wear the Jobst brand, which seems to be the least ugly and
most comfortable. I don't know if that's available in the UK but it might be worth the
money to buy your own pair if the NHS ones are really bad. Good luck!
Reply #3 by adam
Posted: March 29, 2012 at 04:12
I agree with Mikaela here...

It is possible that you were not measured correctly or you are wearing too high of compression for right now.

Start off with a lower compression such as 15-20 and see if that helps. Another thing is that some people find knee high stockings are more troublesome when compared to thigh high/waist high stockings. This might be something to consider (if wearing them).

Also it could be the material that the stocking is made out of that is causing some discomfort too. Try finding a softer brand of stocking. The surgical weight stockings tend to be heavier/thicker which will cause pain/discomfort sometimes -especially if they cut off circulation due to improper sizing and fitting.

But it's just like Mikaela said too...do not give up wearing the stockings. If you've had 4 DVT's already, then I believe you might have done permanent damage to some of your venous valves which might possibly cause you to feel pain/discomfort your entire life. I have had 2 already and I'm only (25) and I definitely can tell you that once the stockings go off of me, the impending doom of pain returns.

Talk to a GP/Doctor if the pain does not subside or see if you could get fitted for another brand/lower compression stocking? If not -you may have to do a little digging yourself into seeing about getting another kind of stocking. (Online shopping is best at this).

Reply #4 by JACOB
Posted: March 29, 2012 at 11:37
Thank you for all your advices. I will give it a go then ! Actually I
think I already have what you call a Venous Reflux. My ankle is
swollen even a bit from the morning, not mentioning how it looks like
after work. Sometimes it is just hard to survive 8 hours, one day is
better while another it hurts a lot and Im only 29 years old. I cannot
imagine my life being 60-70.

Regarding the size - I measured a leg in the morning by myself, and I
already put some extra centimetres to make sure the stocking is a bit

I have even problem with normal socks, they are always too tight for
me, and the skin gets irritated. So how can I stand the compression
stocking :(

But will try... will try... but when ankle gets swollen it just hurts
more and more
Reply #5 by Diane
Posted: March 29, 2012 at 11:40
Hi Jacob,

I have worn grade 3 below knee compression stockings for 16 years, after my first dvt. I'm now in grade 2 thigh length with belt, since my dvt in oct 2010. If I try grade 3 compression, I get more pain. Having seen a vascular surgeon, scans show that I have still got blocked iliac veins, and am waiting to hear about stents to improve flow. I also find that getting measured at the chemist, that they are not be measured correctly, and get my stockings from the hospital now, as they are measured by someone who does it regularly, and who accepts the measurements I take when I wake up, as the leg is swollen very soon after getting up. This has made life easier. I also note that the slightest wrinkle causes more pain, and do find that I have to regularly check that they are not bunching, even if they look ok.

You do get used to them after a while, and there will come a time when you find you can't do without them.

Mikaela - My first dvt, post delivery, was also not diagnosed at the time, and I found out after 18 months that I had post thrombotic damage and was given stockings, which I'd worn since. I've spent many years with doctors dismissing this, saying I never had a clot as I was never treated, dispite tests showing factor v leiden and family history. I'd never known anyone else who had a similar experience. I wonder how you deal with knowing that if things had been different, we would not be going through what we not have to go through, and still be positive.

I'm in my 40's now, but I was only 27 when I got my first clot. It took a couple of years of wearing the stockings for things to be 'normal', but if I'd been treated earlier, things would have been different. I worried about living with this for the rest of my life but I've managed to hike down mountain trails, fun runs and many other activities with an energetic toddler and eventually even had days where I could leave the stocking off. You'll work out what is good for you and learn to adapt if needed, but never say never! You will get control back.
Reply #6 by JACOB
Posted: March 29, 2012 at 12:48
Thank you Diane ! That is very helpful what you wrote.

Actually I've been struggling with it also for 13 years since I had
the 1st DVT when I was 17 and now Im 30. Anyway, I put the stocking on
and will try to make it. It is not that bad after 1 hour, but Im at
home. I just feel when I go out it will get much worse... but will try
for few days/weeks. If it doesn't work I will get a bit bigger
stocking and try again. And never give up !

I measured my leg by myself, in the morning when it was not swollen,
by the way :)

Ok, thanks to all of you for your advice, and good luck for everyone
with DVT. Do not ignore stockings !
Reply #7 by Diane
Posted: March 29, 2012 at 14:41
Do you get your stocking made to measure, or do you fit into the premade small, med, large ones? I know I was told before that the chemist match 2 out of 3 of the measurements, but this isn't the best fit. The make also makes a difference, so ask about a different make. Your GP probably might need to be specific regarding the make, but there is a bit of a choice available. I find mediven good.

Also don't forget to use moisturiser. It does make a difference in reducing the hot dry skin, which can make keeping the stocking on unbearable. Although in this hot weather, there are still times when the stocking just has to come off!

Good luck
Reply #8 by JACOB
Posted: March 30, 2012 at 19:16
I measured my leg at home early morning, and added 2 extra centimetres -
because the previous stocking was too tight. The new one is also too
tight though.

Yes, moisturies. I know, I noticed the dryness of my skin on a foot. ]

Cheers for help !
Reply #9 by Kay
Posted: April 7, 2012 at 21:44
Since the first diagnosis at hospital (nearly 4 weeks ago)of my first ever CVT, my legs were measured I havent heard anymore about compression stockings. I will be seeing my doctor next week but wanted to ask others experiences so I have a little more information about what to listen for and ask about before I go in

My clot is calf to mid thigh, I still get leg ache and swelling but nothing as it was. I am getting back to being active, walking more, but I am also trying to sit and raise my leg after a few hours activity. My INR isnt fully stablised, up to 4.5 at the moment so they are still adjusting my warfarin.

What type of compression stockings would you think i need? Knee high? thigh high? or tight? Better to buy my own or wait for NHS?

sorry for so many questions!

Reply #10 by Diane
Posted: April 8, 2012 at 15:26
Hi Kay,

Were you measured for stockings or just measured to see the size difference of your legs? the stockings aren't usually given in the first few weeks, in case it promotes an embolism. when ordered they can take up to a month to get, if they are being made to measure, but if you it within the premade sizes, you can get them sooner. It also depends on whether you have them prescribed by your GP and get them from a high street pharmacy, or through the hospital surgical supplies office. I have mine made to measure as my calf is too big for the premade sizes.

I find getting measured by the pharmacist not as reassuring as getting measured by the surgical supplies officer as they don't do it that often and I was being measured incorrectly, but you can sometimes get the stockings quicker there. You can take the form home and measure yourself too, if you are comfortable with that. There is some research to say that wearing stockings for up to 2 years post DVT will help prevent post thrombotic symptoms.

You could probably start with thigh high, with or without belt, and see what happens, but as compression at the ankle is the most important, you might find that knee high is ok for you. The important thing is that they don't bunch at the back of your knee or ankle. Sadly, they are all tight! They are expensive to get your own, but you might find you have more choice and when you find a make that you like, you don't have to worry about them being changed. The make and materials used can make a big difference. You are also not limited to being told that they should last 6 months if taken care of, when you can find they are less effective after 4.

Hope that helps,

Reply #11 by Kay
Posted: April 8, 2012 at 20:04
Hi Diane

Thank you! That all makes sense. I do wonder if they measured me to compare rather than for fitting.

Although I get leg ache, the most discomfort is behind the knee so longer to start with probably does make sense, as I wouldnt want to add extra pressure behind my knee by accident/bad fitting and make it all worse. I do have large calves too so suspect I will be a made to measure candidate too

Gives me some good stuff to discuss with doctor - thank you!

Reply #12 by Della
Posted: October 7, 2012 at 22:06
I also have pain in my ankles but I think mine is from my stockings (kneehigh) being too long and it allows them to bunch up around the ankle. I had my legs measured by someone at a facility that is considered one of the best in the area.

Have any of you experienced knee pain possibly caused by the kneehigh stockings? This is pain that is deep down inside the knee. I can't live without the stockings but I have noticed that after wearing them for 2-3 consecutive days, my knees hurt pretty bad. Bad enough that I can't bend my legs, kneel down, walk without pain. The doctors have done all kinds of tests and taken xrays and mri's of my knees and found nothing. And I have never injured my knees or had surgery. Steroids don't help. Anti-inflamatories don't help. Not wearing my stockings is the only thing that helps. But then the swelling and pain from my dvt's comes back. Has anyone ever experienced anything like this?

Reply #13 by susan
Posted: October 7, 2012 at 22:52
Hi Della.... my clot (a small one) is in the right leg. (as it turns out, thankfully not in a major vessel) I wore the stockings for 3 months, was told about 2 weeks ago I can stop wearing them. I still will use them when I have to stand alot, and have bought a strong support stocking for other times.
Anyway: yes, in the left leg, about where the elastic band is/was, I have developed a lump, which is rather painful. Sometimes the pain shoots up or goes down, it hurts especially on days where I have been on my feet a lot. My doctor says it isnt a vein problem. I know that I have arthritis but this doesnt feel at all like joint/bone.
I was sent to an orthopedic specialist: he is sending me to have an MRI. He thought it might be a Baker's cyst, but stuck a needle in and wasnt able to draw fluid out.
Other than tell you this, I have no idea what this might be, nor what caused it. Sorry!
Reply #14 by Bev
Posted: May 6, 2013 at 18:27
I wear the Jobst compression stockings. They feel great and I have a husband
who helps me with getting them on every morning. Here is the problem: I wake
up at about 4 a. m. EVERY morning with very sharp pain in my legs. I do not
wear the stockings at night. Could the pain be CAUSED from wearing the knee-
high stockings? I was told I would need them the rest of my life. Has anyone
found (or is it possible?) that the morning pain was caused by wearing the
stockings. Getting up at 4 a. m. and walking about the house for an hour finally
relieves the pain.
Reply #15 by Chris
Posted: May 7, 2013 at 12:14

My *guess* is that the pain is in part from the socks. I find *my legs*
work best when I wear the socks during the day, walk a lot, and take
them off when I lie down. I also use a Peristaltic pump on my leg now
and then to push the swelling down.

Reply #16 by Lizzy
Posted: May 9, 2013 at 13:49
I'm afraid the recent and largest study by Professor Khan (SOX trial) has
concluded that ECS - compression stockings are of no real benefit to either
reduce reoccurring DVT or prevent PTS/post thrombotic syndrome. They may
benefit if you have venous symptoms such as seedling and pain.
Reply #17 by Emma
Posted: August 15, 2013 at 12:39
I get my stockings from Compression la Mode - www.legstyle.eu

I wear the cotton ones everyday and have had much less problems with
swelling and pain around the ankles and behind the knee. I wear the
nylon thigh highs and tights if I need to be more dressed up or for
evening wear.

Make sure they are in line with what your doctor prescribed but
personally I find them more comfortable and more attractive to wear.
Reply #18 by ella
Posted: April 12, 2014 at 15:33
My husband was having an awful time with the socks creasing at the bend where his leg meets the foot, digging into the front of the ankle area, almost to the point of breaking the skin. We found a new brand called Juzo (on amazon) style 4410 approx. They are for men and women, and are a bit tight in the toe, but there is NO crease where they bend from the front of the foot to the leg. They come in open toe also.
Reply #19 by Yani
Posted: May 6, 2014
I have tried the Juzo brand also, After many years of trying to find the
right size and product I came across a brand called Jinni MD. These
people were really helpful through the process in selecting the right
size. I was able to send the wrong size back for a full refund and was
looked after for the next pair. I highly recommend their customer
service. Here is a link if anyone is interested. http://jinnimd.com/
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