Lymphodema — Scope | Disability forum
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Lymphodema

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kward4666
kward4666 Community member Posts: 10 Listener
in Rare, invisible, and undiagnosed conditions
Does anyone else here suffer and live with this painfull swelling in legs and feet ?
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
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    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?
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  • RainbowJo
    RainbowJo Community member Posts: 79 Courageous
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    @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. 
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  • nikkif
    nikkif Community member Posts: 60 Courageous
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    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. 
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  • Garza
    Garza Community member Posts: 149 Pioneering
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    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 

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  • kward4666
    kward4666 Community member Posts: 10 Listener
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    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.
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Blimey @kward4666! Well done for persisting. How long have you had the FarrowWraps for? Have they helped? 
    National Campaigns Officer, she/her

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  • Carlys
    Carlys Community member Posts: 1 Listener
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    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
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  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
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    @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 
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