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Primary Lymphedema: It's not just about swollen limbs

My mother has primary hereditary lymphedema and so did my grandmother. My grandmother died of sepsis after having a hysterectomy at 38 years old. My mother is 74 and has struggled with the consequences of this condition all her life. When I was late teens my feet would swell a bit in the heat or after a night out dancing. When I was pregnant with first two children, my feet would swell but I was told that was normal in pregnancy. It wasn't until I was pregnant with my third child at 29 that my feet and legs started to swell hugely and they never went down. I was told it was due to blood pressure, which had risen in pregnancy and was put on diuretics and BP meds. Neither did anything for my swelling. That was 18 years ago. In the last 6 years my career has become deskbound and, as a consequence, my weight has increased by around 25kg (or 55 lbs). I can no longer fit any shoes. Any insect bite causes huge reaction that often requires IV antibiotics. I have had a few cases of cellulitis over the years. 9 years ago my right arm swelled massively and I had a subclavian blood clot (DVT in arm/shoulder) removed, first rib excision and a jugular turndown procedure to try and construct a new vein. I've never paid much attention to the diagnoses of my mother and grandmother but, two years ago I had a punch biopsy on my left breast. I was told the risk of infection was 1% and that it wouldn't be an issue. The following night I was in Emergency Department getting IV antibiotics for huge cellulitis reaction to infection. Three weeks later I was hospitalised with non puerperal (not breastfeeding or lactating) mastitis and ended up with sepsis, as three IV antibiotics would not stop it spreading. Finally one worked and I was released. A year later (May 2023) and I'm sitting at dining table and suddenly get a stabbing pain in left breast where had infection a year prior. By next morning I'm hospitalised again with non puerperal mastitis and am in hospital on IV antibiotics for over a week until it started to subside when they finally used the only antibiotic that has worked, flucloxacillin. This is when I started to research primary lymphedema and when I found how easily our body overreacts to minor infection etc, due to our sluggish lymphatic system. Then I found a sub type of hereditary lymphedema where a certain gene is responsible and often there is an extra eyelash condition present
I am now wondering if of a lot of my issues are actually due to this condition which I've never actually been diagnosed with. Hard here in New Zealand because our medical specialists are near to non existent. I have two daughters and a cousin (maternal side) with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Really interested in how these genetics are working. So keen to hear others' experiences.
#Lymphedema #primarylympedema #nonpuerperalmastitis #Ptosis #Sepsis #Cellulitis


Having a tough week. #Cellulitis #Migraine

I developed a case of cellulitis almost a week ago. I’ve been dealing with so many symptoms, in so much pain and it’s making my migraines and complex regional pain syndrome even worse! Sometimes it just gets so frustrating. Dealing with pain and dealing with illness. To feel the pain I always feel, added pain in my right leg , and d even more severe migraine than usual, then achiness almost like I have the flu is sometimes just so much more than I feel like I can bear. I just wish I could have my mom here to help take care of me. I miss her so much! #ComplexRegionalPainSyndrome

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My skin annoys me #Cellulitis #SkinPain

Haven’t been up here in awhile. Been busy with work and other stuff. Had to go to ER this morning because of my dang skin. Got cellulitis again!!! Got some antibiotics for it though but dang it REALLY HURTS!!!

#Sarcoidosis #PolycysticOvarySyndrome #HypothyroidismUnderactiveThyroidDisease #tired #Depression #Anxiety


Scared and embarrassed

#Cellulitis I’m so scared just spent 5 days in hospital IV antibiotics for MRSA leg infection sent me home w oral antibiotics but if it doesn’t work I need PICC and 2 weeks outpatient iv meds. In pain tonight and scared of it worsening despite wound care. Embarrassed by all this too.