Hi new to forum

Hi everyone I've just been diagnosed 1st time I've ever heard off lymphedema, waiting to see someone. I'm just wondering how everyone else is coping? I started having symptoms in March had to cancel holiday in April, I'm glad it's been recognised as thought it was something I was doing or beginning to think doctors thought it all in my head. Thanks for reading /listening x

20 Replies

  • Dear Lynne-byn, sorry to hear of your diagnosis but welcome to the support group. I was diagnosed 5 years ago following cancer therapy and found the most important step for me was getting back a sense of control. I have it worst in my right leg and a little in my left but you don't say where yours is.

    I hope you get measured for good compression garments at your first appointment as they are very helpful in preventing an ever increasing swelling. You will find lots of helpful tips and advice from people in this forum and you may have a local support group near you. Details will be in the LSN website if you are in the UK.

    Good luck at your appointment, ask lots of questions and push for manual lymph drainage system and an intense period of treatment to reduce swelling fast if it is giving you pain and mobility problems.

  • Ahh sorry to hear that hun hopefully your doing better & continue to improve! I have it stomach and both legs including hips but mostly my left side which me being me off course that's always been my good leg, ahh now the right leg have old fracture etc, sure what do you do lol! I've been told need a scan first as have Reynolds syndrome in arms, hands & circulation wouldn't be good, apparently this could really effect treatment available. Sorry only replying just no excuse really but thankyou for msg x

  • Everyone's lymphoedema affects them differently and we all cope differently. You don't say where in your body you are affected by lymphoedema. Also whether people have other medical conditions can affect their ability to cope. Personally mine started when I was 11 (below knee & both legs feet). I always reckon it hasn't stopped me doing what I want to do, but that is not the case for everyone. I haven't got any more time at the moment. I expect others will post. Best wishes

  • Thanks for your msg sorry haven't been checking my emails. I have it both full legs left one worse & stomach x

  • Personally I'm coping well thanks to Cansupport Halton whom manage mine. It is important to keep the condition managed. Mine is managed through LMD administered by a qualified therapist. I have it in both legs; groin and stomach.

    Good luck with your treatment!

    Unfortunately my GP doesn't recognise the condition either through choice or ignorance.

  • Thanks for your reply I also have it on stomach upper & lower, hopefully I'll learn something about it. Wishing you well x

  • As well as other things suggested, exercises are important to get the lymph draining away. The LSN have a DVD and leaflets about this. Your Lymphoedema nurse should show you these and measure you for compression garments and, hopefully give you lots of support. I have it in my arm after breast surgery and have got used to coping with it. I cannot comment on leg and it depends how severe it is but sounds as though yours is quite disabeling as you had to cancel your holiday. Best wishes on your journey and we are always here for help and support x

  • Again thankyou for replying Chrissie, at first I think they thought blood clots I've no idea as 1 saying ok to fly others under no circumstances, one doctor even told me I'd be risking organ failure. I haven't saw anyone as yet, got an appointment for scan was telling pony-girl but had to cancel it as going to England to see niece & nephew, it's only a short flight from Dublin so fingers crossed I'll be okay. Is it safe enough to fly?afraid to ask my doctor incase says no x

  • You need to be clear what medical condition the advice is about. Having lymphoedema shouldn't stop you flying (I have done plenty including lots of long haul). However blood clots is another matter (& I can't comment on that). Look at the website of the Lymphoedema Support Network lymphoedema.org. They also have a telephone advice line.

  • Thanks Anne yeah the flying was said before diagnosis, sorry was scattered there. I'm glad to hear though that you've no problems flying as I love my holidays x

  • Flying can get uncomfortable as legs do get more swollen. However things have always settled down. I once went London, Bangkok, Melbourne, TasmanIa over 25 hours and survived it all with no ill effects for more than a few days. The LSN (Lymphoedema Support Network) has holiday/ travel information.

  • You really need to ask your doctor. I would have thought that a short flight would be ok but I am no doctor. I've never had any problems with my arm but legs are different xx

  • I was told in the beginning that it was all in my head. By the time it was diagnosed my leg had progressed to bad. Now moving into right leg too. However, I am now scheduled for my SAPL surgery at last for end of November. Excited and nervous at same time.

  • Ahh you've to have surgery I'd say your nervous, November won't be long upon us & hopefully it's successful. Can I ask well am going to anyway whether you answer or not upto you pmsl, will surgery cure it or just improve it? X

  • Lynne-Byn the surgery will reduce the leg but won't cure it. I will have to be diligent about wearing stocking. Unfortunately I wasn't told that in beginning. At this point I see no other option as II is becoming more of a problem. I met another woman who has had it done and she is very happy with results. Wish me luck.

  • I wish you all the luck 🍀 in the world hope it goes great

  • Stockings and MLD are key to managing it. Try to stay active too.

  • Snaomi good chance I'll not be allowed the stocking but will deal with that later. Hopefully it won't be too long to get answers once scan done I shouldn't have long to wait for nurse 🍀 what's the stocking like do they have to be worn all the time?

  • I will have custom stockings and will wear 23/7. I wear now so that won't be different. I'll just be able to wear normal clothes again and not have heaviness and pain in legs and feet as much. Hopefully anyway. And the stocking will be a much lighter one than what I wear now and should be easier to get on and off. I have back problems so getting stockings on and off is difficult quite often.

  • Had scan it wasn't what I expected it checked arteries in 3 places, hopefully hear from someone soon & your doing well x

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