Anyone with experience of recovery and pain after extensive unprovoked DVT?

[EagerQuail]

Hi
in November 2025 aged 46 I had an unprovoked extensive DVT that blocked my femoral vein from groin to ankle. Now I have post thrombotic syndrome and in pain most days. Prior to this I exercised every day and lived a very active life. I’m trying to get back swimming, walking and biking but having to take baby steps and in pain all the time. Also emotionally I feel quite traumatised by these changes. Anyone have any experience of this?

Are you on Facebook? I’d recommend joining a group called Blood Clot Recovery Network Discussion Group. There are lots of support groups out there but this is quite down to earth, quite sensible and far less ‘Hallelujah, Jesus saved me’ than some of the others.

How you’re feeling is completely normal. It’s bloody tough 💐

@WilfredsPies I’ve asked to join that group thank you! Know what you mean about some strange groups on there though 😂

Yeah, I struggled with most of them, and obviously their health system is very different to ours as well, but the one I mentioned above is 99.9% British so more understanding that treatment is a bit of a lottery and minimal mentions of God! I don’t have PTS, I’ve only ever had pain with my first one and I’m only ever going to run if someone is chasing me, but there will be someone on there who understands what you’re going through physically.

I've been in the same position (hundreds of clots from groin to toes in one leg). Prior to that I was an avid runner, but the clots destroyed a lot of the valves in the blood vessels which means the leg swells and causes pain.

I wear a full length compression stocking permanently which helps a huge amount. Also, I can no longer run, but some exercises are much better than others pain-wise, so walking, hiking and cycling are all fine, oddly, so I do those instead.

Mine improved a bit for the first few months, then reached a permanent plateau, so I had to ajust and recognise this is the 'new me'... frustrating, but it is what it is.

@Rozendantz thank you. Sounds very similar to me with your plateau. I’m trying hard to focus on what I can do rather than what I can’t but it’s still tough. I was measured a few weeks ago for my compression stockings and waiting for them to come so I’m hoping they will help. I’ve just signed up for physio as well. Thank you for the reply