I’m a newbie to this

[Morzine]

hi everyone I’m a newbie to this recently diagnosed although I’ve had this swollen leg a few years and presumed it was my heart tablets…anyway I’ve had so many tests, and it’s bilateral lymphodema, I live in France and I’m rather lost as to what I need to do, I’ve a good doc hence all the tests, but I’m now awaiting a lymph expert appointment in august. I am just about to start lymph massage with the physio here.

My question to you all are I have read up on it….would anyone excersise bike help or cycling?

Also I’m in mountains and been wearing thick joggers with cuffs at ankles which I now find are bad for you, and leggings…..now are leggings ok or not? I can’t seem to find any warm bottoms that aren’t tight at cuffs….

Plus shoes my shoes seem to now rub on my ankles which are a bit puffy…any suggestions on foot wear?

Thank you

Sue…..aka Morzine

[TeresaMay]

Exercise is good but please find clothing that does not restrict circulation. Maybe cut off the offending cuffs. Good supporting shoes are needed. Avoid any rubbing. I have a lot of trouble with shoes. Nowadays I wear men's shoes as ladies are not made wide enough. I have a feeling I may have to progress to made to measure footwear. Happy Days!

[Morzine in reply to TeresaMay]

yes I’m noticing my trainers are rubbing….

[Chris21]

any clothes that don’t leave an indent are ok. As an example socks! If you wear ‘normal’ socks and they leave an obvious mark around your ankle that’ll be the fluid not being able to flow. I wear boot cut or wide leg trousers, I guess not terribly practical for cycling. You can find joggers without cuffs. I’m in the uk so not sure which shops in France. Do they have something like sports direct? I find Wide trainers are good to wear as they support my ankle, otherwise it’s specialist shops that sell extra extra wide shoes. I discovered jileon wellies! In all my 67 yrs I’ve never been able to wear wellies u til recently. So sad to get excited about being able to wear a pair 😂

[Morzine in reply to Chris21]

thanks Chris for that, I will check sports shops. Socks are indeed a nightmare and I’m in a ski resort snow and cold feet, I’m buying big mens socks but they all seem to have these elasticsted tops.

[GabbiD44 in reply to Morzine]

Your phisio can likely recommend/prescribe compression socks. The only time I love my socks is winter.

[BedfordBoy in reply to Morzine]

Hi Morzine, you might find that "non grab" diabetic socks are helpful. I tried them out after everything else failed and I found they were quite comfortable and my ankles didn't get horrible indents in them. I went on line for them. As for footwear, try Sketchers, who do a big range of well fitting comfortable shoes. For jogging bottoms I use a company called "Big Dude" who stock clothes for people with our condition. There are others too of course. Very handy especially if you live in a rural area. I've had problems obtaining lymphatic drainage massage from my GP so I bought myself a machine which is quite good. No need for appointments now! Good luck!

[Morzine in reply to BedfordBoy]

hi Bedford boy, thanks for telling me all that, I will look at the socks.

I’m interested about the machine what machine helps?

I can get to see a lyohm drainage lady but not till august .

I presume beung Bedford boy you are from Bedford?! Funnily I was in. Bedfordshire 30 years till I moved to the alps here.

How often do you use the machine.?

Sue

[BedfordBoy in reply to Morzine]

Hi, yes I live in the Bedford area, and you lived here too, that's a coincidence! The machine is called "Fit King" and I bought it from Amazon. The more you pay, the better quality machine you'll get, so mine is more of an entry level machine, but I'm happy with it so far, in the absence of a lymphatic massage nurse . You can pay £2k plus if you have the money, but mine was under £200. Maybe I'll upgrade one day. Another machine I've used for a couple of years is a "Revitive" circulation booster which I use most days. It's pretty good. Again, I ordered it from Amazon. You also get your vat returned from the tax man as it's classed as a medical appliance.Good luck!

[Morzine in reply to BedfordBoy]

thanks , I will look it up….everyone’s been so helpful.

It’s been bliss just thinking I had swollen legs now I’ve a diagnosis I’m worried….life eh….

[GabbiD44]

Certainly biking would help. Getting those legs pumping, and easier on your feet.I wear yoga pants for walks. When its cool out I also wear my made to measure compression socks. Previously in the summers I don't wear the socks for walks. But this year I am struggling with controlling swelling ao I may need to be more compliant. 😢🥵

I purchased a pair of compression leggings but they leave a cuff at the ankle.

[Morzine in reply to GabbiD44]

I’m really in the dark with all this as I’m up a mountain and my docs don’t seem to know much about it ceot the same as I’ve read in internet. I’ve had veins checked, and othe scans to make sure it’s nothing else now I’ve been told it’s this…..I can see an expert on lymphatic drainage, and a physio for massage….that’s about it. Nobody mentioned cellulitis worry or skin care….

I’ve just ordered aveeno online as I saw that was mentioned…

So walking biking are all good.

Is sea water ok with is being salty, I’m on holiday soon….

And I must avoid sunburn yes?

[TeresaMay]

Look after your skin. Minimise insect bites, if possible. No sun burn. Moisturise.

[Morzine in reply to TeresaMay]

thanks

[Belvidere]

sorry mine is lymph in arm for 36 years +

[Perido]

Sea water is fine, but avoid getting any cuts, grazes or bites to the area of swelling as this can easily lead to infection and cellulitis. Have some antiseptic to hand just in case, also wear something on your feet at all times to avoid injury.

It helps to elevate legs whenever possible as this will enable excess lymph fluid to drain.

Moisturise daily; Aveeno is good as it doesn't contain parabens or perfumes which can irritate vulnerable skin.

To self educate I recommend the book recently published by the LSN : 'your lymphoedema - taking back control'. Some of the information is only relevant for the UK but lots of useful advice on self managing lymphoedema: lymphoedema.org/product/lsn...

[Morzine in reply to Perido]

thanks perido, I will get the book I’m finding this all a bit much to take in….but want to get my head around what to do for the best everyone in heres been so kind and helpful

Sue

[Ugiebank]

Buy a small trampoline called a rebounder. It's gentle exercise. Keep moving. Compression stockings are great if properly measured. Lots of info on the Internet. Good luck.

[Morzine in reply to Ugiebank]

thanks for that, I wondered about trampoline as I sometimes can’t get out in the snow as I’m in a ski resort . I will look online

I’ve tried compression stockings but I can’t seem to get across to the pharmacy guy I am not a normal shaped leg….so hard speaking French and getting it explained correctly….

[DeborahS32]

I have primary lymphoedema in one leg, started in 2016. Took a while to get diagnosis and proper treatment, but once I did it made a huge difference. I have made-to-measure thigh length stocking. Over a period of time leg swelling reduced from 64% to 21% - beyond my wildest hopes! I walk a lot. I find Doc Marten laced boots in a bigger size than I used to wear are excellent, and even better Fly London boots

Read everything on the LSN website - so much helpful info there. Good skin care, exercise and ideally good fitting pressure garments seem to be key.

I hope you find an experienced practitioner soon - for me it was transformational.

[Perido in reply to DeborahS32]

My old Doc Marten lace boots no longer fit since developing lymphoedema in my foot plus my MTM toe caps/stocking take up extra room in footwear. Might try the size up next time I'm passing a shop selling Doc Martens.

Most of my shoes are Clarks wide fit. I'm very limited for styles but grateful I can still fit in non-specialist shoes.

I've also got some walking boots (Nebraska) from DB wider fit which work well for me on rough ground. However the the soles are wearing down quickly.

Will take a look at the Fly London boots, thanks for the tip.

[DeborahS32 in reply to Perido]

yes my DMs are several sizes larger than I wore pre lymphoedema (and larger than I’d need for my left foot. But with a sock on my left foot and tighter lacing it seems to work ok. LF =39; RF =41.