Lymphedema or something else?

Been referred to the Lymphedema clinic by my physiotherapist and occupational therapy when they noticed swelling was not going away 6 months after a ligament injury. They suspect primary lymphedema as I also get swelling in my legs and feet regularly and have had cellulitis and compression stockings on my legs.

Anyway... very new to this and got my first appointment in 2 days (was originally next month but they rang me today to bring it forward). What happens on the first appointment?

15 Replies

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  • Which clinic are you going to?

  • Kings Mill Hospital Sutton in Ashfield

  • My first appointment was over 40 years ago so things are a little hazy. I expect they will review your medical history, measure the circumference of your limbs at various points and poke them to see if skin stays pitted, also trying pinching it (is difficult to pinch lymphie skin). They might then prescribe compression andand / or book more tests. Good luck.

  • Thankyou main reason I asked is because my letter mentions appropriate clothing and appropriate underwear. Suspecting they might want to check my torso too as my orthopaedic dr mentioned I seem to be swollen all over.

  • I have Lymphie and 8 weeks ago had my first appointment with the clinic. Everything that Andy 13 has saidwas done to me.

    I have had swelling for about 20 years and then 18months got infection as well.

    The NHS both docters and nurses were hopeless and i got very cross over it.

    I am now down in the swelling but not the pain and some days i cry and cry and i am not a cry baby.

    The sock comes over my knee and after you have creamed the leg ans it has soaked in a while you put the sock on and pull it up over the knee.

    Then comes the compression wrap -secured with velcro straps and the sock is folded down over it.

    Makes life better but it is hot and my legs feel heavy.

    I dont sleep more than 2 hours and have to get up and walk around andsometimes i take a shower.

    Then i can get another 2 hours before it wakes me again.

    I hope this will improve as it is not easy to cope with this.

    Cream your legs a few hours before you go to bed as you will stick to the bed sheet.

    I hope this wont alarm you but we need to have a BIG voice to get funding for this and this site is great.

  • Luckily I'm not in a lot of pain with it but get a tight sensation in the affected parts

  • I agree with what Andy 13 says. Sounds like they might give you a general check over so easy to slip in and out of clothing sounds a good idea. Please do remember that everyone is affected differently by their Lymphoedema. Some do have lots of difficulties but many of us don't. Yes, we wear compression garments, it can all get uncomfortable and we have to watch out for cellulitis but generally it doesn't stop us doing what we want to do. The difficulty with the Internet is that you get to see/hear the worst , not necessarily the best - or even the most usual. I hope all goes well for you.

  • Thankyou gonna pop a dress on without sleeves so they can get to me easily without too much undressing in front of my mum

  • Hope it all goes well on the day and thereafter. specialist lymph nurses/clinics are the way to go as generic NHS staff don't really have much experience

  • Unfortunately it's the NHS Lymphoedema clinic, but apparently they come up from London to do our clinic.

  • PS Today's the day! My appointment is in an hour :)

  • You should have had it by now then. Let us know how you got on.

  • Probably NOT Lymphie but they're gonna check me again at a later date

  • What ever it is, I hope you get it sorted.

  • Thanks hun

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