Post thrombotic syndrome

[Ylmom]

I would like to hear from those who have post thrombotic syndrome. What does it feel like for you? And what have you found helps you feel better? 

[MaryF Administrator]

Hi there, I am sure you will have some answers soon, as there are others on here who have this, best wishes.       MaryF

[Tammylola2012]

Hi-I had a bilateral catastrophic pulmonary  embolism in 2011. I was out of commission for 3 and 1/2 weeks. I went back to work after that time off. When I went back my first day I was scared to death that I had another blood clot so left early and went back to hemo to make sure it wasn't a clot. He diagnosed me with post thrombotic syndrome. The massive DVT from leg that went to my lungs had caused vein and valve damage in my left leg. He put me in compression stockings to my knee and told me to wear them from the time I got up and put my feet on the floor to when I go to sleep at night. I wore them for 4 years and suffered symptoms for that long too. It throbs so much sometimes I want to cut my leg off. It would swell and petichae (sp?). I would have busted capillaries and blood under my skin around my ankles. It would be so heavy at times I felt like I had a cement shoe on my left foot. I have not gone back to compression stockings because I clotted a second time in 2015. The best remedy for me is to elevate my feet at bedtime to control the swelling. So far the swelling goes down with this remedy when I get up. Also heat would help with the throbbing. Hope this helps you. Best wishes.

-Noelle

[Ylmom in reply to Tammylola2012]

Thanks for you reply Noelle! It does help! i have read a lot of information about it but have not spoken with anyone who has PTS. Heat helps me too. I was wondering if anyone would say that. I have a heating pad on my coach, in the office and one that plugs in the car haha. It is good to hear I am not alone with heat helping. So hear is two big questions. 1. Can you tell that it gets better and then comes back? I can always feel it but it seems that at times it is so much worse. 2. Do you think stress makes your symptoms worse? I can not find any information about that. It seems to get worse when I get really stressed, anxious or really upset. Makes you feel kinda coo coo haha. 

[Tammylola2012]

Yes, I agree that I can always feel it. It does seem worse at times. We have seasonal weather where I am at. When it gets cold during winter my leg is very bad. My family jokes with me and calls me long john silver because my limp is so noticeable during cold weather. Also I have noticed that it is bad during my monthly cycle. Throbs so badly then. Mine gets worse with stress. Then again when you have an autoimmune disorder stress seems to flare it up more. Hope this helps. Best wishes. 

-Noelle

[Ylmom]

It does thaank you! Long JohnSilver 😉 Glad you have a humor. It's good

[thomas_tz]

Hi, I also have post-thrombotic syndrome in one leg. Like you, my DVT left me with problematic valves, and blood doesn't return from the leg properly towards the heart.

I spent the first two years with class 2 stockings, but they were poor quality ( given to me by NHS at first and then bought over the counter ). Then I saw a gp who specializes in vein and artery issues ( angeiologist? ) who recommended a specific brand. If you ask your specialist which brand they would recommend, they can point you to the best one. Ever since switching, I have had a much better experience.

I am surprised by your comment on heat. I was told that heat causes vessels to expand, and this makes the problem worse. This has been my experience as well.

What I do:

- I make sure my measurements are correct and I have the right size stocking. I had the wrong size for some time, and it had a negative impact.

- I wear the compression stocking before I get up from bed. I raise my leg high for a couple of minutes before doing this, to make sure the leg is not swollen.

- I wash the stockings in cold water, without lots of spinning, to make sure they don't lose their capacity to compress.

- I change them when they are easy to put on. They should be compressing me, not be relaxed.

- I keep my leg high whenever I can, but this is not needed when the compression stocking is on.

I have found that there are some pills that help me feel better (see this summary for Daflon - ncbi.nlm.nih.gov/pubmed/115..., but I don't need them at the moment. The above helps me feel fine.

There are long-term implications to having very swollen legs: it may lead to ulcers, which are painful, difficult to treat and can get infected. So, I would talk to my GP/vein specialist about it.

I hope this helps. Thomas