Early onset lymphoedema

FormerMember
FormerMember
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Hi everyone

In the past few weeks I'd had some weird sensations travelling down my arm to my wrist and my bracelet and rings had become a little tight. I took the plunge and rang my breast care unit who told me to come in. My worst fear was confirmed and I have early onset lymphoedema. I'm really scared that it will get much worse - my L-DEX score was 22.5. I have horses and have only just returned to the saddle after my surgery in June and have found it really difficult to find the right balance in terms of using my arm too little or too much. 

I'd love to hear that it's not as bad as I think it is!! 

Ax

  • I  myself have had it badly. In my legs but it's not permanent. I can relate to how your arm is feeling and the symptoms you have experienced as it is the same as what I went through. Now I am aware how to avoid or treat it. First do you understand what the lymph glands do. I myself had quite a lot of lymph glands removed. That was done to try and prevent Cancer from returning in another part of my body. Think of a circle that  has had a section removed. You start with an inflection the body fights it. Unfortunately  the circle has been broken so the  this inflammation it goes into your arm or in my case into my legs. After my operation my body was still healing the lymph in both legs was awful. So anyway over the years I have learnt a number of things and the first thing is I call it lymph not its full name. Its does not seem so bad then. Second why and what has brought it on. Third how can I stop it happening again. The one thing I will not allow is it to take over my life. Two horrible years after my operation now twelve years later it no longer bad as those first two years. So we have both had cancer removed but different parts of our body I need my legs and you need your arms so please remember we are all different but lymph is a problem for us all. Don't let it take over your life. I live my life how I want to. 

  • If you are care managed early you have a better chance than most of us who don't have access to any support or care as I staggered in to the clinic to see a vascular surgeon with 2 walking sticks struggling to walk with mega swollen legs feet and knees with swollen bulges upon the swelling and a full red rash with blisters all along my legs which I read needs urgent medical attention which I can't get because My GP is on annual leave.  Told by the vascular surgeon we can't offer you any help as there is no money in the NHS.  Door slammed in my face and I have to go it alone.  No one to talk to when things get bad because my GP and most doctors know nothing about lymphoedema or lipoedema.  So I hope you have better luck.  I am sure you will.  It depends in what part of the country you are in.