Another fearful newbie

Another fearful newbie

Hello everyone, where to start? This is all quite new to me, during 5 years of badgering almost every GP in my local doctors surgery over my swollen foot and leg, I've been passed from pillar to post, undergone ultrasounds and a lot of 'its water retention' or 'it must be related to your hypothyroidism-come back in 6 months' I gave up. Until about 3 months ago where I found a doctor that was genuinely interested in why my left leg is the way it is, anyway, she had referred me to a vascular nurse in hospital, who within a matter of 5 minutes knew it was Lymphoedema. So I've been bandaged for 3 months until my compression garments for my leg and foot arrived. I'm still coming to terms with it, I've known for years something was wrong with my left limb but a part of me always thought there'd be some sort of cure. Evidentially there is not. And the realisation has hit quite hard and has had a knock on effect with my confidence. I have followed strict instructions to not google image Lymphoedema from my nurse but I am struggling to differentiate the helpful information from the mythical... Help?! I'm 20 years old, at university and in all honesty despite a brave face I am worried about my future.

18 Replies

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  • I am so sorry to hear it has taken you so long to get a proper diagnosis. I can't help you much in terms of what the future holds as I am only recently diagnosed myself and still waiting for bandaging and compression stockings. I am keen to read what others say because, although I am many years older than you, I would also like to know more about what the future holds and how I maintain as much normality as possible.

    I would agree with the advice from your nurse re googling for lymphoedema and the images you might see. I gave my children the same advice when I told them I was stuck with my fat leg.

    I hope that there will be someone soon who can help you more.

  • Google MLD UK [the professional body listing lymphoedema therapists] and do a search for a therapist in your area - there is lots of information on the site and most therapists will be happy to give advice and answer your questions. Lymphoedema. correctly managed, should not stop you achieving whatever you want out of life. Good luck.

  • Hi MissLB92 - so sorry that you are having such a challenging time - there is loads of info on the LSN website lymphoedema.org and we have the information standard kite mark which means that all our info is gold standard according to the nhs - we would be happy to send you a free information pack if you drop us your postal address to adminlsn@lymphoedema.freeserve.co.uk. There is also a great open facebook page that is run by a young lady with lymphoedema and has lots of younger people as members go to facebook and put 'lymphoedema is part of who I am' in the search window.

  • Thank you everybody, really helpful. Nice to know I'm not alone.

  • Your future is all before you and exciting so whatever you do don't let lymphoedema change things. Like you I asked 4 or 5 GP's before I found one interested enough to refer me to a specialist.

    I'm 66 not 20 and have been 15 years with the condition. Little help available so help yourself.

    Lots more of us around than you realise. Sensible management and keeping active is my advice. It's not the end of the world so don't let it become so. I don't think our condition gets worse. We have to wear stockings but lots of people live with far worse conditions.

    Get on and live life to the full.

    Good Luck

  • Welcome. I only joined the group a few weeks ago. I'm 46 but ended up with lymphoedema in my left leg in my 20's after a motorbike accident. The best advice i can give is that the condition is manageable. It's a bloody nuisance and a complete pain in the arse but if managed well, that's all it is. For many on here the condition is very bad and really limits what they can do. my heart goes out to them. If you are young and active and get good support from a good lymphoedema nurse, you can keep very active and lear to live with it. It isn't nice having to put up with how it can look but I hope you will one day get to a state of mind where it doesn't matter much. I've kept active with cycling and swimming (can't hide the leg much there) and karate. Unless a cure comes along, then we just have to make the most of what we have and don't let it ruin your life. The folks on here and some facebook groups are great and supportive and you are not alone. The biggest step for most is getting it diagnosed and your're past that. Best wishes for the future.

  • Thank you so much, it's nice to have people that understand!

  • Hey, I've had it in my left leg for a whole year now- believe me it doesn't stop you doing anything!! Get referred to a lymphoedema clinic you can, wear the stocking and keep moving! Join facebook group and come speak to us all :-)

  • Thanks for all of your kind words and support, i realise that there are people with a lot worse and really I should think myself lucky! I've joined the Facebook group today and I'm off back to renew my gym membership tomorrow, I've had a look at suggested sights for ideas but was wondering if any wise owls know of any specific excersises they think help their leg and foot swelling? Thanks so much again.

    Laura

  • I'm using a power plate at the gym, which seems to help :-)

    But I find just moving helps, I don't find running helps but some people are ok

    Just try and stop if it makes it worse or hurt :-)

  • Hi MissLb92

    Another very supportive group on Facebook - facebook.com/groups/2824159...

    They are very friendly and supportive and have many useful links too!

    As every case is different so the treatments will vary. Most therapists agree that swimming is excellent for most Le sufferers and some cycling machines also provide good results. Always listen to your body and all will be well.

    Goodluck,

    Christo

  • The best advice is defiinitely don't google too many images, you may be lucky like me, i've had it for 35/40 years and never really worried about it too much. We all have our moments and would rather it wasn't there but it doesn't have to stop us doing things. Over the years i have learned a bit about more of the dos and don'ts, as the professionals too are still learning. Definitely be careful of you weight as this does affect the swelling. Keep an eye on your skin condition - moisture regularly. Wear compression stockings as much as you can - we all lapse from time to time. Don't sit or stand for prolonged periods of time. Above all don't worry and don't let it rule your life.

  • Agree with Fatfeet. I've had lymphodema for 40 years and its not stopped me doing much. In addition to Christo's recommenration another good website, UK based or biased depending on your perspective, is on Facebook and is called Lymphoedema is part of me.

    facebook.com/LIPOWIA?ref=ts...

    This is a good place to talk to people with a similar condition (we're all different) and learn how to manage yours and what to ask of the medical profession.

  • Really, as so many others have said, don't panic. This doesn't have to be the end of your life, you just need to make some small adjustments. I have very well managed lympho in my right foot (very slight in left too, but right mainly). My feet were 10 times the size they are now when I was finally diagnosed about 14 years ago, but because I kicked up so much fuss I did get to see a (very patronising) consultant who diagnosed me relatively early. I wear normal shoes now, with the help of good management and compression garments (I appreciate I am very, very lucky compared to many on here). In the summer I have days where I wear shorts, but then I have to manage some swelling back down. But it's about balance, not entirely stopping your life for it.

    Now you have the diagnosis, its crucial to carry out some basics and adapt things around them a little. What works for me, that you could try:

    - elevate your foot/leg where possible (I turn my bin upside down under my desk at work and use it as an excuse to put my feet on the coffee table at home)

    - moisturise regularly at night (I'm a bit pants at this, but don't let my feet dry out completely otherwise the skin cracks and bugs get in). I didn't know until recently that you should NOT moisturise between the toes!!! Very important, since I learned this, I no longer get fungal infections!

    - don't drink alcohol too much or too regularly. I notice the extra swelling if I had a few good nights out on the trot or too much the night before, so I just drink occasionally. Better for cardiovascular health too, so extra bonus

    - don't drink alcohol before flying

    - ask the lympho nurse to show you lymph drainage, useful for long haul flights (you can also apparently double up on compression garments for a flight, i.e. wear 2)

    - exercise has really helped me. Swimming, zumba/aerobics classes, yoga, running, cycling. Actually I do get a bit of pooling when I cycle, but I discovered that Sigvaris and mediven both do sports compression socks, so I'm planning to get some of those. Worth ringing them to see if they will give any discount as you suffer from lymphoedema, I got 30% off voucher at the running show when she saw my compression stockings. I run 3 x weekly now (thanks to NHS Couch to 5K in 9 weeks podcasts on this site).

    I also take my own antibiotics on holiday......I keep some in the fridge always, in case of infection in my foot, my GP is happy to renew prescription when the shelf life runs out, so that I don't have to wait over a weekend, etc if i need them, as I had cellulitus once and don't EVER want to get it again :-o

    I see the lympho team at St Georges in Tooting every year and have a virtual appointment in the summer, so that they can send new garments. I am incredibly lucky to have been diagnosed early and to have been able to get my GP to refer me to one of our top specialists, who told me that (due to being diagnosed early) 'I may never become disabled'. So far so good, I had a child since my diagnosis and had less problems with my legs than most of the other pregnant ladies, as I knew how to manage it ;-) My leg/foot is significantly slimmer now than when first diagnosed.

    Last Friday night I was at a drinks party in a nice new dress, nobody could see the knee length compression stockings under my thick black tights in the dimly lit bar. In the daytime, I might wear knee length boots, just to be sure.

    Sorry for the exruciatingly long post, but I wanted you to understand that this could turn out to be just a damn nuisance rather than a major life change (it took me several years to realise that, I admit). We can adapt to it. Best of luck to you, I hope you are able to manage it (and best wishes to everyone else on here).

  • Look up Dr Stanley Rockson Stanford Hospital ,US on you tube .He and his team are doing a lot of work with Lympheodema ,and has done some testing with mice ,

    He is confident they have come a long way with their results.You got age on your side .It's worth watching and see for yourself ,he answers a lot of questions .Good Luck.

  • Try not to worry miss LB...I to had known since I was a very young girl something was wrong with both my legs the right one being the worst one, mainly as I could never get shoes that were a good fit and without them causing blisters every time also the top of my legs were out of proportion in size to the lower part ,then when I left school to go to work I started getting swollen feet as I was standing of course everyday as to sitting everyday at school and this went on all my working life until in 2004 when I got cellulitus through having athletes foot which caused my skin to crack in between my toes the infection got through in this way. That is when they told me it could be primary lymphadema .At 1 st they thought it was just caused through trauma due to the blisters I had with cellulitus which I had 3 times each time needed to stay in hospital for I V antibiotics. Now I don't wear compression because I'm allergic to anything like certain materials because I have psoriasis so now I don't have anything On my legs except creams and moisturiser that being the best way to avoid infection I can't stress enough that keeping your skin in good condition is vital and resting as much as you can also elevating your legs while watching TV. A good way to wash is with Double Base emolient cream in the bath water or put all over your leg just before showering this is a good way to look after your skin you can get this from your doctor.

  • Hi Your future looks bright your photo is lovely.

    I am 71 years and have had this 25 years but a Doc only picked it up last year.

    Sorry to say you will have to wear a lot os trousers but there are also a lot of maxi fashion out there.I decorate my shoes as well.

    I hope you are refered to a Lymphodema clinic if not shout for one.

  • Hi X Thought I was young to be calf lympho lol ... I'm 45 and like you really struggled mentally have two young girls and found I can't wear shoes with heels as they hurt too much and the stocking itself I felt embarrassed wearing it. I will say after a year I'm more adjusted and the best piece of advise the clinic gave me was if your going out ie holidays as special day..... Flip the day wearing the stocking overnight as your not suppose to sleep in them but won't hurt in small doses.... This made a huge difference mentally to me as i love my two weeks in the sun. I do have quite a lot of leg pain as get restless leg and awaiting fybrio diagnosis at present. So hopefully your not in pain as well and just swelling but the stockings do work if you wear them and mine has definately been kept under control. Hope this helps. Tracey

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