Lymphodema

kward4666
kward4666 Online Community Member Posts: 10 Listener
in Rare, invisible, & undiagnosed conditions
Does anyone else here suffer and live with this painfull swelling in legs and feet ?

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Hi @kward4666, I'm sorry you haven't found anybody else with this yet. Would you like to tell us some more about your own experiences?
  • RainbowJo
    RainbowJo Online Community Member Posts: 74 Contributor
    @kward4666 i have this. currently its in the top of both my legs the rest went down having my feet up 24/7 while in hospital. but the tops wont go down. 

    i was diagnosed last year and put on a list to seen but the wait is a good year. 

    hope ur legs/feet r not too bad. 
  • nikkif
    nikkif Online Community Member Posts: 63 Contributor
    I suffer with it as well as may Turner syndrome in my left leg. The pain is excruciating some days I can barely walk and my leg swells so much I feel like the skin might burst. Some days it gets so bad I have to drag myself to the toilet using the wall as support. 
  • Garza
    Garza Online Community Member Posts: 146 Empowering
    i am paraplegic so dont get the pain, but i get severe swelling, I have been advised to rest with the legs prone as much as possible and moisturise the  a few times a day, also have things like compression or bandaging been mentioned to assist, not sure if paracetamol or similar would help with the pain at all 

  • kward4666
    kward4666 Online Community Member Posts: 10 Listener
    After arguing for 3 years i managed to get the lymphadema nurses to come to me and do the dopler scan and i got my new farrow wraps. At last it was only when i threatened to report them they decided to come.out. after telling me for 3 years they dident do home visits.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,471 Championing
    Blimey @kward4666! Well done for persisting. How long have you had the FarrowWraps for? Have they helped? 
  • Carlys
    Carlys Online Community Member Posts: 1 Listener
    kward4666 said:
    Does anyone else here suffer and live with this painfull swelling in legs and feet ?
    hi yes i have it look up LIPOEDEMA its not lymhodema alot of women have this hope this helps
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,882 Championing
    @kward4666 how long gsvecyou had the farrow wrapped on during my time as a carer in the community  a few people had the same condition the wraps do  reduce the size of the legs  and does help 

    Hope you have some results soon 
  • dolfrog
    dolfrog Posts: 613 Trailblazing

    I was diagnosed as having Cellulitis 2 years ago, and this time last year i was having swelling in my feet and in my legs. my surgery prescribed water tablets.

    I had problems when it rained as i could only ware slippers.

    Later i was told that it could be cellulitis again, and then after few further GP appointment i was referred to the local Lymphodema team, who confirmed that I have Lymphodema, and that they would provide me with two types of compression socks. two pairs of each type, which could take a few weeks to arrive.

    I found some compression socks listed on Amazon, and I bought a few pairs. this helped reduce the swelling in my feet and legs.

    I then received the compression sock from the Lymphodema team, which were all much tighter. There was one type to ware during the day they were black and reached my knee, and another type to ware at night were beige and they had compression lines going up my feet and legs to try to move the liquid causing the swelling.

    At my second appointment i was told i would have to ware these socks for the rest of my life.

  • SheffieldMan1976
    SheffieldMan1976 Posts: 971 Connected

    I don't personally, but what you're describing is almost exactly what's happening with Mum at the moment, constant pain in her legs, she was up at the Northern General Hospital for HOURS last week and I still don't think she's fully right, it's a BIG worry.

  • dolfrog
    dolfrog Posts: 613 Trailblazing
    https://forum.scope.org.uk/discussion/comment/1117111#Comment_1117111

    I was told by the Lymphodema support team that Lymphodema is a cause of Cellulitis, and that ladies who have had Breast Cancer can later have Lymphodema. the liquid that causes the swelling in the feet and legs.

    I had a look at some of the earlier post and looked up Farrow Wraps on Google, and they are smaller than the compression socks I have, but they are a possible alternative option.

    And i also looked up LIPOEDEMA and found out that it is about fat causing the swelling problems.

    Hopefully you will be able to find out the cause of you Mums problems

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