Pitted Edema

[Campari-king]

Hi there ,

I was diagnosed with systemic sclerosis last week . I just had a PET scan yesterday and will see the consultant next week. One of my symptoms is very painful pitted Edema in my legs. I wondered if anyone had any tips to relieve the pain ? Thank you 😊

[Who48]

Hi sounds like your suffering! I had swelling everywhere and had pitted odema on my legs way before I was diagnosed. I was diagnosed Dec 2019. The longer I was standing the worse it got. I found that sitting and laying with my feel up, took the pressure off and cold compresses helped. I bought a cooling mat (cheaper if you buy the pet dog ones) that worked brilliantly. It's only a small thing but I hope it helps! Good luck and hope it helps x

[Hidden]

Hi - I was only recently diagnosed myself although have other connective tissue diseases overlapping. I have pitting oedema too but quite subtly all over my body. I also get a lot of pain in arms and legs and face. think I’ve read that magnesium spray can help - also my dermatologist gave me a cream called Dermacool for itching. It really helps the areas where I suffer from circulatory issues I’ve found - especially my peripheries. Prior to lockdown I was having massages to help with lymphatic drainage. I don’t know if this helped medically but I did find it very soothing. Mycophenolate has helped a bit too. Best of luck.

[Hidden]

I get edema off and on and right now have it daily in my left foot and ankle as I heal from ankle surgery. I wear a knee high compression sleeve almost everyday and it is a huge help. I live in the states and like two companies pro compression has a slightly higher compression but can be harder to get in with my damaged fingers from raynauds. The other is called crazy compression they are more stretchy. No matter what they slide on better if I lotion first and they really are worth every penny.

[Missycat2020]

When my symptoms started 18 months ago I had bilateral pitting oedema on both feet and lower legs and they became extremely sensitive to the slightest knock, really agony! Keeping the feet raised as much as possible, including at night, not sitting too long, moving the leg muscles as much as possible and having manual lymph drainage (MLD) massage regularly, really helps. The MLD has to be done by someone specially qualified in it, it's usually done for lymphoedema. I did use compression socks/tights as well for a time. The oedema and extreme sensitivity have almost gone now so don't lose hope! I also find that avoiding dairy products helps, i think. All the best and take care.