I'm new to this and have only been diagnosed over a year ago. I have lipo-lymphedema and it's been a massive struggle.
I'm 30 and all my life I've been told I'm fat, I'm over weight, I'm lazy. And all my life I believed it. At school, I was bullied because of my weight, I was the biggest girl there and my whole life I've felt massive.
It wasn't until one day I went to the doctors (with my mum) because my legs had swollen so much and I was in pain, (she was always there to support me) the doctors wouldn't listen to me. They just kept saying you need to lose weight, stop eating and work out.
I'd been on steroids and antibiotics due to another chest infection, I'd had chest infections since I could remember (since I was very little) I was never really over weight as a small child but until puberty and then everything expanded.
I was mortified when my mum spoke up, demanding that I got someone else to see me as they weren't taking it serious enough. So he referred me to someone else and bang... there we go we have an explanation - lipo-lymphedema.
I was told I'd be like this for the rest of my life. I was heart broken.
I went for scans and tests to make sure that's all the problem was and it was, even though I have asthma and a heart murmur but that's just a few of the things I have due to having sucky health. After I got my scans, I spoke to another doctor. (The 4th or 5th Doctor I'd seen) and he just told me without even looking at my scans I was fat. I needed to stop eating all sugar and fatty foods. I was to have nothing but salad and water.
He sat there looking up and down at me whilst I was in tears because hearing it from another person just completely shattered me. The poor nurse sitting there was just looking into space as my mum ripped this doctor a new one. As we stormed out, I could hardly walk due to being exhausted and drained from everything. I was completely numb.
I was then referred to a nurse at a hospital to get compression tights, and to see if there was anything else they could do for me. Unfortunately, there isn't.
The doctors from before, have black listed from being his patient because I had to bring my mum in to back me up when I said there was more too it. I now go and see this fantastic nurse at the hospital who has helped me with compression tights and bandaging to help me when I badly need it.
Now I just need to get on with my life with wearing compression tights my whole life. I try to go day by day and try to keep smiling. Even though I get so many looks and still get called fat all the time. I am doing my best to work out when I can and do my exercises to build up the strength in my legs even though it kills me, it hurts all the time.
If anyone has any advice or wants to talk please feel free to come and chat. I'm always free to chat.
Written by
hez88
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Hi I'm sorry your having such a rough time. Im sure Lynorra & many of the others will be on soon with some useful advice. Im only recently diagnosed in the past 2 yrs & its a shock to the system. It takes a while to find your way & get your head round it & find good drs/nurses/lymph therapists to help. Ive hated the stockings, but my legs are way better contolled in them, less swollen & less painful. The less I do physically the worse I am, but if I walk too much I make it worse, but I do have additional spinal issues that may be clouding the picture! Walking & swimming in the pool saves my sanity, by easing the swelling, my joints filled with swelling & the pain.... seriously recommend it & thats coming from someone who hates getting into a pool usually & all the faff involved... I go 2-3 times a week & its keeping me mobile & sane. The mobility may be worse for me because of varying conditions... dont want to scare you w that!! I find unfortunately, food makes a huge difference to my fluid levels generally, reducing carbs & sugar seems to help my lymphodeema a lot & drinking more fluid... all very boring I find.. but it works for me. All the best, hope you get some good support & find your feet a bit. Take care. Meg
Thnak you o much for your reply. You have no idea what it means to me, there's not many people who understand exactly what I go through.
I don't get a chance to go to meetings or that because I work full time, plus I always feel like I'm going to be the only one there and I don't make friends easy at all.
I used to go swimming twice a week but then I got the bandages on and I ended up not going any more. I loved swimming but I feel so big compared to everyone. I'd never with this on my worst enemy as I wouldn't wish any disease on anyone. I hope you start to feel less pain soon, take care.
Maybe when you get a break from the bandaging, youll be able to get back to the swimming, I'd swear it makes me so much better & then I feel that bit more in control of things... all helps with keeping the chin up... which takes doing as the stockings, bandages, swelling etc etc are so much to come to terms with & dont do much for the confidence... understatement! Loads of people with info on here for you, it helps a lot. ☺
I wear my compression tights all day every day, I wear my sleeves all day every day. I know I'll get back to swimming at some point but it's just my confidence has taken a massive knock and i'm struggling with it. Thank you for being there. xo
I know what your going through as I was diagnosed with lymphoedema in my left leg 3 years ago this August and now I’ve got it in my right leg too. I was gutted that there wasn’t a cure for this disease and that I would have it for the rest of my life.
My family try to help me as much as they can with my lymphoedema but they don’t know what I go through each day as none of my other family members have this condition plus I lost my Mam last December so that taken it’s toll on me too. So that’s why I come on here and read about the other people who suffer like I do.
So if you ever need to talk I’m here whenever you need a friend who understands what your going through.
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Help please
Lymphedema Pain
Compression gym leggings
Not to tight please!
Living with lymphedema in the USA
