Living with lymphoedema

[NikkiEv63]

I have lymphoedema in my right leg/ankle, I’d say my foot and ankle are affected the worse. Have to wear prescription compression stockings but still find my leg so tight and uncomfortable especially in warm weather. Interested to hear from anyone else who suffers a similar issue and whether they have any useful tips on coping with it. Really gets me down at times as it’s lifelong isn’t it?

[Squinny]

Hi Nikki, I have it too in my left leg (8 years now) and wear full length compression, so know it can be hard to deal with at times. My tips would be try to eat well most of the time, if you can exercise then do, elevate when you can, and in this warm weather try putting your compression stocking in the fridge, it can then be a cool relief to put it on. It isn't easy but over time I have just noticed what works best for me and gone with that, try not to let it run your life, and the LSN and these forums are here for advice or just a chat. Best wishes x

[GabbiD in reply to Squinny]

That is good advice! Especially you learn what works for me. I have learned to take it day by day.

[NikkiEv63 in reply to Squinny]

Thank you so much for your reply. What a good idea about putting stocking in fridge. Going to try that definitely. I try not to let it rule my life i think its just when summer arrives i almost dread it but have to be positive. Lots worse off than me!x

[Claire0208]

Hey Nikki

I was diagnosed with lymphoedema back in August 2015 with it in my left leg but now it’s my right leg too. I know how you feel with the warm weather affecting you as it does with me too. It makes me feel uncomfortable and does gets on my nerves at times. Sorry I can’t give you any tips after nearly 3 years but I’m still getting used to having lymphoedema and trying to find out more about it. It’s nice to talk to people who have lymphoedema as nobody in my family have this so they really don’t know what I go through each day but I wouldn’t be without them. So if you need to talk you can talk to me anytime.

Thanks

Claire

[NikkiEv63 in reply to Claire0208]

Thank you so much. I'll definitely keep in touch. I didnt even realise this support network existed till yesterday. Could be my saving grace x

[Cooking-Queen20]

Hi Nikki, I was born with primary lymph oedema in lower limbs only to be diagnosed at the age of 13. Underwent surgery - which in hindsight with what we know now, was not appropriate. So stocking are the only solution to manage this condition.

Some days it’s no fun. Especially in the heat. I try to always wear my made to measure sock. Am a little naughty at times, but I try my best.

Many years on, I have learnt to do what is recommended and listen to my body. Moving is essential. In fact even in the heat if you can walk as much as possible you don’t even feel the sock.

You are not alone, lots of us lymphys out there! If you are near London you should come to the LSN AGM. Comforting to meet others who understand the challenges we face.

I have not tried the stocking in fridge idea! Thank you Squinny I will definitely try it for tomorrow.

[NikkiEv63 in reply to Cooking-Queen20]

Im about 50 miles from London but would def consider attending the meeting. Thank you for replying to me x

[Lizzie53 in reply to NikkiEv63]

I am hoping to go, but like you am about 50 miles from London in Bedford,

[Amcc]

Hello NikkiEv63. I've got it in both legs, apart from putting socks in freezer over night and moisturizing at night. Make sure to use a very good natural moisturiser, one that actually absorbs into skin. I use Aveeno as I have very sensitive skin. The only other option is massage manually or with a compression machine. These machines are extremely expensive but you can pay monthly. My main concern with the machine was, supposing it doesn't work for me!! Find a company that accepts returnes if you find it's no good for you. Good luck

[12345-]

Dear NikkiEv63, I totally feel for you, its horrible in this heat, I have left my stocking off for 2 hours this morning as I had an operation gyno yesterday and was given hospital stockings, I took them off last night before bed, and haven't put my normal one back on yet, its such a relief not to have it on, but I know as it is starting too already swell, I will put it on soon, the freedom without is wonderful. I am like you fed up with it and know its for life, I cant give any advice apart from there are a lot of people so much worse off than just having to wear a compression stocking. this is what my husband says when I'm fed up with it, and its true, but it doesn't always help as its real for us and a nuisance. Massaging yourself will certainly help with the swelling and with the stocking on may look like your other leg, mine does, its only when I leave it off., I had the LVA too last November but not sure if its worked fully, I feel its not as tight but I cant go with out the stocking which I was hoping as I was a strong candidate for it to work. its still early days and can take upto a year I'm going back in June, it may be available on the NHS at some point if enough people try it privately . it has worked for lots of people but I suppose some have to be unlucky. good luck and enjoy the summer with floaty trousers and a pretty top. xxxx

[NikkiEv63 in reply to 12345-]

Thank you for your reply, what is LVA that you had last November? I don’t know what that means. I hope yr op went well too, please keep in touch, I enjoyed reading your reply xx

[12345- in reply to NikkiEv63]

Hi NikkiEv63, the Lva is a procedure where they link the blood vessels to the lymphatics hoping for a different draining channel, like re-plumbing your lymphatics really. they say it can take upto a year and i'm just over 6 months, I do believe mine has started to work although not holding my breath, it feels less tight and I went without last week for 5 hours and nothing changed in my leg, this procedure is very expensive and not on the NHS yet!!! soon hopefully if enough people have this done, I do believe it will be though in time. I will keep you updated, im going back for a check up in June, im hoping the volume has reduced, I was only 7% anyway which is much, but it had gone upto 12% after the operation, not sure why, I have gained weight which might be why, but I have everything crossed its gone down to at least 4 or 5% now. xxxx

[GabbiD]

Hi NikkiEv63-

I am in the States. I was diagnosed with left leg lymphoedema in October 2017. I wear custom socks to the knee which are thicker than standard socks. I am pretty compliant, mostly because even with the heat it feels better to have them on than off. Plus this group has really made me value taking care of my legs. I know I could have it worse.

However last Saturday my husband and I went out. It was warm and I just wanted to wear sandals. I had been compliant all day with my socks. So for 3-4 hours I went without. Towards the end of thetime I could definitely tell my leg was getting puffy. But when I got home I wrapped my legs, and I wrapped on Sunday night too. And now I am back to normal. I wont do it often but it wasnice to have the option.

It is depressing though. I am only 44, and yes, it could be worse, much worse. But I see my coworkers in capris and sandals with bare ankles and I am envious. Its a silly think really. But still, I am.

I have quite a bit of weight to lose. So I hope as I do that it will get better. I try to walk in the morning and night when it is cooler. And am hoping to find a water exercise class as I heard that is helpful.

But mosty know you are not alone.

[NikkiEv63 in reply to GabbiD]

Thank you for replying to me, I’m going to start swimming regularly as I think that’s really beneficial with managing lymphoedema. You aren’t silly as I get envious too and find myself looking at peoples ankles!!!

Please keep in touch 😁

[Angelil in reply to NikkiEv63]

I completely agree with the swimming, I think it does my legs wonders but also it’s a break from having to wear the compression.

My lymphoedema is higher up in the thigh and groin both sides so I wear shorts rather than stockings but I swim, walk and have just started yoga too all of which help. I also find that if I massage after exercise, especially yoga, I see better results. Also my husband takes a turn in doing the massages which doesn’t sound much but i’m really grateful as I hate doing it.

I also had the LVA surgery at the beginning of the year and have had a slight reduction in my first check up so it may be worth looking into that but it’s expensive!

It is hard wearing compression in the heat but there are lots of long floaty, dresses or light weight, wide legged trousers in the shops at the moment with are cool to wear and wide leg jump suits are in fashion at the moment too!

[Bev-1966]

Hi NikkiEv63, I got diagnosed with full leg left & right in aug 2015 and have to wear full leg compressions and absolutely hate the things but I keep a spray bottle of water in fridge and spray compressions when I get to hot to cool myself down, give it a try.

I get open toe compressions as I can only wear flip flops.

[NikkiEv63 in reply to Bev-1966]

Yes I’m purchasing a spray bottle tomorrow! Thanks for sharing x

[Bev-1966 in reply to NikkiEv63]

No probs, that's wat we are here on forum for to share with fellow sufferers x

[pollyslymph]

Hello to all. So sorry for us all at this time of year.... It does help to have this forum and find that we are not alone in this darn world of lymphatics. It has been so nice to have the stockings on for the winter.... And I struggled through last summer too, frustrated to not be able to walk barefoot at times.... But more as in my case I have chest wall breast cancer.... The result of 17years trying to deal holistically. My lymphoedema came up suddenly after a small tumour blocked the groin. We have to be so brave and really do our best with diet and exercise even though it's not a cure. There is always hope and I hold the image that I shall find solutions to my challenges. Dr. Mortimer one of the top lymphoedema specialists in London told me that the lymphacintigraphy that I wanted was not good in my situation but if I could reduce my tumour load there was a chance that the lymph would make new avenues through my body. I have kept that thought with me and do my best...... I go to Rome tomorrow and you know what I am going to take the stockings off now and again and try to be grateful for my life with all its challenges. As one of you said..... There are so many with worse.... Let's expect miracles xxx

[NikkiEv63 in reply to pollyslymph]

Thinking of you, best of luck and please keep in touch xx

[Chris21]

Hi NikkieEv63. I was born with this condition. It didn’t really cause a problem while young but when I hit my twenty’s the right ankle and leg began to swell I was given below the knee compression stocking and I hated them so stopped wearing them, in my thirty’s the left leg and ankle joined in by swelling too. I was advised to wear above the knee stockings so I tried them but felt like Nora batty! Now in my sixtys and haven’t regretted (so far) not wearing the blessed things. Yes my ankles swell but I’m so used to them now that I don’t even think about them. I get relief by having a regular monthly foot massage and inbetween do a manual ‘drainage’ and put my feet up when possible. The important thing as some have already mentioned is to moisturise and make sure you drink lots of fluids. It is a pain having this condition and yes many times I’ve been jealous of girls with lovely skinny legs, that are able to buy skinny leg jeans and normal shoes but hey! I’m still able to walk and dance 😉 x

[Dream_in_pink]

Hello Nikki, sorry to hear about your diagnosis. The warm weather is so challenging somehow. I have lymphoedema in my right leg too, I’ve had it for many years now after complex pelvic surgery. One of the things I’ve found that has helped over the years has been taking up new hobbies. I’ve given up skiing (too painful now) and also had to give up work due to my other health problems... so I started learning to paint. I go to a watercolour class. I love it so much! It is a brilliant distraction. This week, I am starting another new hobby as the last year has been hard. I’m learning pottery. These might sound like small things but they help me cope not just with the pain and discomfort, but also with the emotional side of managing long term health problems. Good luck with things and take care xx

[Lizzie53]

Hi Nikki, I too have to wear a compression garment, I use a cooling mist spray, which I keep in the fridge, you can get it from Supedrug, my therapist also suggested putting the garment in a plastic bag, the into the freezer for a few minutes (I haven't tried it). Hope this helps a little 😊