Lymphoedema: Swelling, Signals & Spectrums

Lymphoedema confuses me.

For years it has baffled medical professionals, so I think it’s only fair that I also struggle to grasp it. Just when I think I’ve got it all figured out, when I am convinced all is well, and just as I smile with confidence that I won’t let my condition define me, my leg says “no Josh, back in your box”.

Not literally of course that would be ridiculous. Although, I do find myself talking to my leg as if it could feel emotion. Feeling sorry for it if I get frustrated or blaming it after a bad leg day. Bizarre that.

Lymphoedema is incredibly sensitive. Too much of this or that and it’s time to rest. “This” being anything and “that” being almost everything. Diet, exercise, sleep, stress, posture, commute, sun exposure – you name it, lymphoedema loves and loathes it.

It’s complicated…

So, the difficult challenge we lymphies face every day is how to best tune our bodies and our environment, for minimal damage and maximum “normality”.

“But what is normality?!” I hear you cry.

I don’t know. Certainly not I nor any of you for that matter. I guess what I am trying to say is that normal, everyday tasks are difficult for those with lymphoedema so we have to work extra hard to keep things ticking over nicely.

But, even when I do everything by the book my lymphoedema can still flare in an instant. I eat my greens, exercise regularly, drink lots of water, perform massage and even frantically dance to the fates in the hope my leg will let me off the hook just this once. Alas, it doesn’t always go to plan – and I seem to have it a little easier than a lot of people with the condition.

Over the past few months I have started to engage with the wider lymphoedema community. Thousands of us around the world are sharing ideas, thoughts and tips in the hope of bettering ourselves and one another. What seems to be common among us all is that no matter what we do, we are guaranteed bad leg days. For some it is common (everyday), for others not so much. I see pictures posted of sore, swollen and sometimes infected limbs daily and understandably, those reaching out to the community seem to be running out of patience.

I first learned of the lymphoedema community through The Lymphie Life blog

In my humble opinion, lymphoedema sits on a spectrum which is defined by genetics, routine and diet, and of course, whether your lymphoedema is primary or secondary. This means every person experiences the condition differently. Some swell more than others and some heal quicker. Some see reduced swelling overnight, some see minimal difference. For others, further health conditions aggravate their lymphoedema and vice versa. Our chronic swelling and impaired lymph nodes are complicated and do not deserve to be brushed aside as they have been for decades now.

A goal of mine for the year ahead is to observe more. The saying goes “things happen for a reason”. In our case, things i.e. symptoms, happen because of a reason, and although it is tedious at times, pinpointing our “swelling catalysts” are essential to our welbeing.

Of course, this is just my opinion. But I am a big believer in doing what is right for you. Where I sit on the lymphoedema spectrum is different to where you sit, and to learn where we sit we need to listen to the subtle signals our bodies are sending us.

Medical professionals, lymphoedema therapists and fellow lymphies, do you agree? Or am I talking a load of tosh – or “Josh-tosh” as my family call it? Send me your thoughts!


  1. Ganga Kadirgamar · 24 Days Ago

    Thanks Josh for all you posts – very informative, useful and thought provoking. As a Nurse, I’m bound to say folk have to take ownership and responsibility for their own health/life – so very proud of you for researching, doing the right thing for you, and you’re right, we are all unique/individual, so of course we’ll all have some similar experiences but also very different ones.
    Keep up your blogs
    love ya – can’t wait to see you back in person to see the gazillion stories/pics you & Charlotte will have to tell/show
    God bless
    G xx


  2. Amanda Davis · 23 Days Ago

    Absolutely! I suffer from swelling in my hip, which then affects my leg – and my biggest catalyst is salt. I eat a handful of chips and can feel my leg feeling tighter and more painful almost immediately. When I talk with my medical professionals, they give me looks of doubt and don’t quite believe that it is that sudden or noticeable. I can powerwalk around town in my compression without to much trouble (assuming it’s cool weather), but a bag of chips can bring me to my knees, or rather to a chair, where I can prop my legs up.


    • leftlegfirst · 23 Days Ago

      That’s incredible. Just SO sensitive to salt. Is there anything else as problematic as salt? Thanks for sharing Amanda 😊 would you mind if I tweeted this out?


      • Amanda Davis · 23 Days Ago

        Feel free to share! I have secondary lymphedema which developed after a surgery in my late 20’s.
        At first, I was always in pain and my swelling was out of control. It took a couple of years to really figure out how to manage it and minimize the pain and swelling. My diet needed a drastic change because of my new sensitivity to salt. I still say ‘screw it’ from time to time and eat chips. But now I know the consequences mean wearing full (lighter) compression overnight or the leg pain will keep me awake. My second catalyst is something that is unique to my unusual location of swelling – sitting. Sitting upright at a table or leaning forward increases my swelling, mostly because the hip is really hard to treat with compression. I use compression and foam daily to minimize but compression still has to move and stretch with your body’s movement, thus leaving space for swelling to occur.


    • leftlegfirst · 23 Days Ago

      And the doubt from medical professionals is all too common!


  3. Emma McCaw · 22 Days Ago

    I have to say I’m pretty lucky in that I only know of 3 things that really flares up my foot especially… 1. Alcohol. A glass of wine is enough to definitely make it look more red and it swells a little, but I will drink on occasion.
    2. Badly fitting shoes also makes it pretty bad (no kidding), but as a little bit of a rebel, again, I will wear heels for special occasions.
    3. Heat/Sunlight – I’m going to Cyprus in June and I’m dreading it with my leg, but I hope to spend most of the time around the pool, so fingers crossed!
    Food wise, I don’t really notice anything that flares up my swelling, but I have been trying to cut down on dairy (almond milk is my new best friend) and salt – which is so hard because EVERYTHING has salt.


    • leftlegfirst · 14 Days Ago

      I wish it wasn’t all the delicious things 😭 I think with alcohol it’s finding that balance between knowing your lymphie limits and being able to enjoy your life (easier said than done!). Shoes are a nightmare goodness me! Heels must be so sore!? Salt I need to cut down on too so I’m with you on that. Not willing to sacrifice dairy just yet however I do love me a bit of almond milk 😂 I hope the diet changes go well for you and best of luck on your blog 😉


  4. Elaine · 13 Days Ago

    I may be naive but I haven’t noticed much in the way of diet issues and certainly not the immediate response that many report! The one summer I didn’t drink (for many reasons) I was also barely able to eat and so I lost a lot of weight – and the leg did get thinner. I try to monitor my salt intake for other reasons so that may be part of it. Have given up alcohol for certain periods and seen zero leg reaction in response so it’s really hard to know.


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