Recent diagnosis, any positive tips/stories please!! X

Hello, this is my first post. Think I've avoided writing anything to avoid making it real, but...

I was diagnosed with Primary Lymphodema in September. I'm 43 and since my late teens have had swollen ankles/legs occasionally which I found annoying and embarrassing, but didn't really think much about. The swelling would always go down overnight or over a couple of days on extreme cases. I have two children and we're an active family - we love mountain biking, hill walking and we have a small family sailing dinghy that we love messing about in in the summer. We also have two dogs so we're out and about lots. The last year or so have been pretty stressful, both my parents have been ill and my husbands job has been very stressful and juggling 2 schools and working around all of that has taken it's toll. We live in a rural area so I have quite a lot of driving every day too. My left ankle and foot started to get worse last spring and over the summer the swelling stopped reducing at night, I was struggling with it and therefore doing less exercise and put on a bit of weight. After being tested for DVT and lots of cancers, Primary Lymphodema was the final conclusion. After a few weeks I was eventually referred to a Lymphodema clinic but been told there is a six month waiting list for non-cancer patients. As I'm going to have to start caring for my mum more next year, I was desperate to try and get going on treatment and managed to find a qualified lady who would treat me privately in the interim - I can't really afford it but feel I have no choice. I had my first bandages this week and I only managed to keep them on 12 hours around running around after the kids etc as they wrinkled down a bit at the top and became very uncomfortable (sorry for the long post!!)

Anyway, I guess I'm desperate to hear any positive stories as I haven't been able to find any!! I've been told currently I have mild stage 2. Both legs are affected all the way up, but my left foot and ankle have perminant swelling at the moment. What can I do to give me the best chance of hanging on to adventures with my kids as long as possible? I've not drunk any alcohol since I was diagnosed, cut back on salt, am eating as healthily as I can, walking as much as I can drinking detox teas, wearing hideous compression tights..... any tips or positive stories would be really gratefully received. Sorry for so much in one post!! I really feel for anyone with this condition secondary or primary and can't believe how little treatment/knowledge there is for it through the NHS 😢 If you're still with me here, thanks for reading all my drivel!!

17 Replies

  • This is a quick reply as I have to go out. Have a look at The Lymphoedema Support Network website . Lots of general information there plus they do have a telephone help line - worth talking to about where to (possibly) get treatment more quickly.

    Also look up lymphoedema on NHS choices website. There is a video clip of me talking (positively) about living with lymphoedema (primary, shown up since age 11, both legs and feet below knee). Just back from a week in Mexico so ok with long haul & heat, but condition well managed.

  • Thank you so much, I really needed to hear that, your video is great. Guess like so many people that have just been diagnosed, I have so many questions and it takes a bit of time to come to terms with it all too I suspect. Thank you for taking the time to point me in the right direction x

  • I was diagnosed just two weeks ago and like you I am having a hard time coming to terms with it I have seen the lymphodema nurse I see him again on the 23 Dec and like you I found this site and I have had some fantastic support for people on here I have asked so many questions about it and I have always had the support of all The ladies if you have a question then someone with answer you Good luck x

  • Hello - you poor thing, you sound shell-shocked. At least you have a diagnosis now, and that's a massive step towards getting some help. I too have primary lymphodema, and so does my Mum, and so there can be a genetic link. We have both suffered from our teens/twenties. It seemed in our case that hormonal activity triggered the symptoms, but the condition was always there. Like you, we've found the road a rocky one. As far as the NHS goes, I've seen doctors who have been so rude and dismissive. I can only tell you about my own experiences. Management is key, it won't go away. You must look after you skin religiously, moisturise to stop the skin drying or cracking. You are more prone to infection, so never walk barefoot ANYWHERE. Cellulitis is a danger and it can cause more damage and more long term swelling. My Mum has suffered three episodes, but thankfully I haven't had it at all to date, and I am now 51. Wearing compression stockings will be life-changing if they are good quality and have been measured for you correctly. Not at all glamorous, but I absolutely wouldn't be without them. I've found too that footwear designed to improve circulation can help a lot, I wear MBTs and fitflops. MBTs are VAT Exempt if you have been diagnosed with Lymphodema. I have boots and lace-up trainer versions of both of these and they look good and feel great, especially for an active person like you. If you are wearing compression stockings and good footwear then I hope, like me, you can be active and continue to enjoy most of the things you liked to do before your diagnosis. I struggle to keep my weight steady, but it's so important. I walk lots and I'm active, but personally I would avoid anything where there is a risk of twisting or knocking my feet or legs as this type of trauma can cause further long term damage and swelling. I go to body balance and yoga classes - but would avoid step aerobics! Whenever I'm sitting down I try to put my feet up, and make sure I get an early night as often as I can. There is lots of info online about self massage and breathing techniques. The more you research, the more confidant you will feel about managing this condition. Practitioners are great - massage and reflexology have both helped me a lot - but as you say it's so expensive. I've really needed to accept that there are no miracle cures and learn to manage it myself. I was lucky enough to visit a practitioner who was trained in Vodder technique Manual Lymphatic Drainage and was also a qualified nutritionist, and she really got me on the right path. A period of regular appointments saw good results and I have been able to manage my symptoms fairly well since then. I hope this helps! Good luck with everything.

  • Thank you so much for taking the time to reply, can't believe how helpful and friendly everyone has been, it's cheered me up no end! When you have time, would you mind telling me what nutritional advice you've been given please? I'm fairly healthy (!) but would love to know if there is anything specific you've been told? Also how/where do you get MBT footwhere and apply for VAT exemption etc? Thanks again, it's lovely to hear how well you and your mum are managing xx

  • Thank you xx

  • Wouldn't say mine is gd but its positive ive got primary was diagnosed with it 4 years but ive had it since 17 ive only started reading up and taken advice very recently now everything ive read so far has come to a conclusion of i should have pushed for a reason alot sooner im a trained chef have been for 20 years 12 13 hrs a day which they dont recommend in doing tattoos are a no no but ive a fair few on both legs its not hard to get bashed on legs with pots and pans bruising last a long time so im bot suprised its all catching up with me now so my pount is dont worry dony stop doing what you enjoying doing but look after your legs do as much research as you can and fight for answers cause thr sad part is so many people have it but now many people now about it and how bad it gets for us

    Sorry its this long needed a rant

  • Poor you, can imagine how hard working in hot kitchens must have been. Wishing you lots of luck moving forward now x

  • You aren't alone!! We are all here to support you through this difficult time of adjustment and acceptance

    Like you I was diagnosed late - at age 47 with Primary (now age 49) after my toes/feet/legs up to my groin were swelling up more and more over the years to a point where the swelling wouldn't go down overnight anymore. I was hugely athletic but can''t safely undertake all the intense sport I was previously doing but still do some outdoor activities in moderation.

    Coming to terms with the diagnosis is bloody difficult but give yourself time to process it and accept - you will get there.

    Try to find a qualified manual lymphatic drainage/MLD therapist (look at MLDUK website). It's important to manage your legs daily. SLD/ simple lymphatic drainage it important to do 1-3 times daily to your legs. It's easy to learn but takes practice

    The best instructional videos on SLD are below - start with the breathing one as you can't clear your legs until after clearing your trunk, hence learning proper therapeutic breathing as part of SLD.

    use this site for support as we are all here doing just that - to support and be supported. Cat x

  • Thank you so much, they are really useful vids, will get practising! Xx

  • I want to thankyou for this too hun x

  • Hi hun you don't need to apologise I too write long posts. I'm still awaiting 1st appointment so sorry gonna be no help, the people on here do seem to be very knowledgeable so best off luck & hope you find some ease x

  • Thank you - you too, take care xx

  • Hi I know exactly how you feel. I am 53 years old, I first had early symptoms aged 17 and a crazy old GP told me I had rheumatism. I did not take the pills she prescribed (my mum wisely new this was a rubbish diagnosis). Move on 10 years, I was married and had 2 children at this point, my feet always puffy and right ankle starting to stay swollen even after rest. GP didn't have a clue, used to give me diuretics. I had another 2 children in my thirties. Looking back by the time I reached 44 I had swollen right lower leg, both ankles and feet. Still no diagnosis. I used to live in London and went to GP roughly 3-4 times a year to ask for help. The GP used to say "you're anaemic", (I was but this was not the cause of swelling"). Moved with husband and children 60 miles to a new area nearly 4 years ago. Went to new GP. She examined my leg and said "goodness me your limb is severely compromised". She could not believe I had been undiagnosed for over 20 years! Anyway I went to vascular specialist first (nhs) to make sure not vein problem, it isn't. Then referred to Lymphoedema nurses. The relief to get a diagnosis of primary Lymphoedema was immense however then comes the whammy - there is no cure. Just manage the limbs. I felt really shocked, let down, angry, a freak, etc etc. Then I thought I cannot let this horrible condition rule my life. So I now treat my legs "like a temple" - I use mega expensive Dior body lotion on them everyday to pamper myself. I wear my compression socks most days. I buy good quality wide fit shoes from M and S or from The Shoe Tailor. I live in trousers/jeans anyway! I put my feet up whenever possible. I exercise on a treadmill/cycle. I still feel embarrassed when I strip down to my tankini on holiday but when you look around pool there are always people far worse off with weight issues or handicaps of some sort. And I'm never going to see those people again so who cares! I hope you don't find my reply negative as it's not meant to be, you're not alone. At my last Lymphoedema review my condition had stabilised- there is a fabulous new scanning device that measures precisely the amount of fluid in legs, that was reassuring that it's not getting worse. Nurse also said I'm keeping my skin in fantastic condition and to carry on with what I'm doing. I hope as you come to terms with your condition and that you gradually accept it, please message again anytime. Take care, xx

  • I love your line about treating your legs like a temple! and pampring yourself! Me too with bells on! I'm very lucky my husband isn't a leg man, the appearance of my puffy feet and heavy legs have never bothered him, and he is always there to give me a foot rub. All we can do is learn to manage the condition and love ourselves. Good luck to everyone on that path. X

  • Many thanks for your reply, sounds like you're doing a great job and have the hang of self management brilliantly, lots of luck moving forward xx

  • Sounds like you're already doing loads of good things to look after your condition. I was only diagnosed with lymphodema in my lower leg and ankle after a bad bout of cellulitis. As my GP and hospital couldn't give me any information about the condition I then found this website and found out all sorts of info so that I can manage the condition myself.

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