How much pain do people experience with their lymphoedema?

I have primary lymphoedema in my lower legs (right more than left), I also have hypermobility syndrome. I get lots of pain in my feet and legs, especially if I spend a lot of time standing. It's worse if I stand but don't walk so stuff like queuing and visiting museums is really painful.

My lymphoedema is relatively mild, my ankles are almost normal size first thing in the morning, and with use of compression stockings, about 3-4 cm bigger in the evening.

How much pain does everyone else experience with their lymphoedema?

7 Replies

  • Hi, I too have lower Lymph and hypermobility syndrome, although my ankles are non existent! Some days pain is worse than other days but its always there just a diffrrence in severity

  • Hello ,I have the same symptom and would like to know if ayurvedic treatment works for swollen ankle

  • I find it very painful to stand for more then 20 mins without my compression stockings. Might I suggest that if I swelled the amount you describe I would consider my stockings needed replacing.... I use compression level 2 of hadenham veni and they stop this swelling or even make my legs slimmer by the end of the day. I recommend getting a review of your tights as if this swelling is stopped I think it will help with the pain. Good luck xx

  • Turn up the contrast. I've had primary Lymphoedema for 40 years and use compression 3 when out of bed. on a scale of 0 to 10 it's a 1 most of the time, 3-4 after a very long day but 8 when I've had cellulitis and put my leg over the side of the bed ( won't want to go near 9 or 10).

  • I also have primary lymphoedema in my lower limbs and was diagnosed with hypermobility in my ankles about 4 years before my lymphoedema. In between those I got diagnosed with osteoarthritis in the metatarsal bones in my feet. The pain can be horrendous and painkillers sometimes don't help. I usually get pain when standing for long periods and not moving but also if I walk too far. I also find, if I walk fair distance, I start tripping up on fresh air which can land me on the pavement at times! Resting with my legs up help but I can't spend my life sitting on my rear! I haven't seen my ankle bones for years now even though I use class 2 compression stockings. Touch wood, I've not been in much pain for a few days now but am going out for the day tomorrow and will be doing a lot of walking so will be taking my walking sticks with me (I don't use them all the time, only when I'm going to do a fair bit of walking) and taking lots of pit stops for coffee and rests :-)

  • There's quite a few of us with both hypermobility and lymphoedema here. Are the two conditions linked in any way?

    I've been hypermobile for as long as I can remember and officially diagnosed a couple of years before the lymphoedema started. I also seem to spend longer than normal lying on the floor with my legs propped up the wall. Actually, I don't think normal people do that ever... If I stand still for 10 minutes then I'll get pain in my feet, ankles and knees (hypermobile knees and swelling of feet and ankles). Or if I walk for 20-30 minutes I'll get pain in my lower back and knees (hypermobility), but I don't swell up so much when I'm walking.

  • Hello Faethe. I have just realised you asked this question 3 years ago, I was not here then. The pain I find can be truly excruciating or sometimes just bearable. If you get cellulitis then I find that I just want to disappear. I do find putting a pot of cetroban cream in the fridge helps cool the skin down and helps take the heat off for a bit. It does not last that long but find it helps if you can put up with somebody putting on for you. You could try some cool water that comes in a spray bottle something like the lymphoedema nurse uses when she bandages your legs. There are probably other things to try or other people will have some good ideas. 

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