I now have a diagnosis of primary lymphoedema (from St Georges) affecting both legs and pelvic region. Only my right leg and pelvis are symptomatic, and I wear a flat knit made to measure thigh length stocking plus toe gloves every day on the right leg only. Really helpful, and in the year since I started treatment the swelling has reduced steadily from 68% down to 31%.
Two issues would really appreciate people's experience on. I'm a very active person, and on average walk 5-12 miles a day. First is whether it's worth trying stocking without the silicone band at the top, as am having frightful itching at top inside thigh where the band goes. Second is whether when I practice yoga I need to keep the stocking on. Would be nice to practice without it, but don't want to risk making things worse!
Thanks for any tips you might have from your experience.
Written by
DeborahS32
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Have you spoken to your therapist about compression garment options? There are several products available - tell the provider you want to exercise, and the silicone band irritates.
I have a couple of very active clients - one is a yoga fiend! She practices, without garments, for an hour every morning. Then showers, dons her garment and goes to work.
I replied to you thanking you for this, but my reply seems to have disappeared - sorry if I appeared rude! I'll definitely discuss with my specialist nurse when I see her, but that won't be till late next month at the earliest. I've now tried yoga without the garment, and so far so good - no ill effects. I think I was maybe being over-cautious as I've been very strict about wearing it all the time, and it has had great results so far.
I did try to reply to you, but it seems to have gone missing - sorry to have appeared rude! I tried this, but unfortunately because the stocking is made to measure once I put it inside out it would be good for my left leg but not the right one! Nice idea though.
I have the same type of garment and there are different types of tops that you can request . I have very sensitive skin that can start to produce weals when it gets irritated . I cope less well with the ones that have silicon dots and better with the lace top that has several lines of fastening to hold it up . It’s pribably worth trying different ones to see if they are any better . My Lymphoedema nurse also gave me a tube of NAQI BODY SCREEN it really soothes any sort of friction or pressure burns . It’s not available from all services , whether they were trialling it or not at the time , I’m not too sure , but you can get it from amazon . I had pressure type sores developing at one point in the crease where my leg joined my foot and this really helped as there was no other way you could protect this area( we tried lots of different things )
Oh that's really interesting, thank you. I didn't realise they did such a range of top options. I have the silicon dots, and that's what gives the irritations (and as you say, weals). I'll ask to try a different top. The trouble is that whatever I get has to last for at least 3 months, so I'm very wary about changing and finding I'm stuck with something even worse. Not heard of Naqi Body Screen, will ask about it and look out for it.
I've tried a suggestion from my husband which seems to be helping - I've covered the part of the silicone band where the irritation is with micropore tape, so the silicone isn't touching the skin where the irritation is. Definitely seems to be helping so far (about a week in).
I was getting a lot of sores on my ankles as well. I read somewhere that you could glue the foot part to your foot so the compression doesn't slide back into your ankle. I then put the toe glove ON TOP of the foot compression. It doesn't move an inch and completely solved that problem! This is some of the best advice I read with compression thus far. I have primary in both legs and wear compression regularly . With regular compression my measurements barely went up! I am pregnant with my fifth child. Don't let lymphedema get in the way of your dreams!
Thanks soMuch for your reply. I made my post a couple of years ago when I was still
Finding my way around. Since then am definitely much more comfortable with the pressure garments and just get on with normal life. Glad to hear you’re doing so well. My leg has got much bigger during the lockdowns but it still doesn’t stop me from doing what I want to you. Good luck with the rest of your pregnancy- I’m in awe!
I have been wearing a thigh high jobst elvarex for many years and suddenly, this year have developed the same irritation from the silicone dots on the top band. I emailed jobst to ask if they could make a thigh high with the woven-in silicone that the knee high stockings have and they said it was not an available option. So I have ordered a thigh high without the silicone dots. I use 'it stays' adhesive to hold the stocking up anyway, so I hope that will do the job without the silcone. As far as yoga, one hour without compression doesn't seem like it would hurt; i would feel comfortable doing that, but that's only my opinion.
Good for you on being so active ! All that walking certainly keeps the lymph moving !
If you need to go back to the silicone band, you might try what I've been doing for the past week, which is covering the bit of the band where the irritation was occurring with micropore tape. Seems to have helped so far.
I second Rexygirl - try “It stays” with your next garment (without silicone). Have you considered pantyhose (with 1.5 legs) to also cover pelvis and give you a waist section to hold the hose up? Re yoga - trial and error. Perhaps you can wear compression leggings versus elvarex during your class, for some support.
Great suggestions - thanks so much for taking the trouble to reply! I love the way this forum is full of helpful people with lots of experience. Am about to try yoga without compression. Will see how it goes...
Hi there Deborah. I practice yoga approx 4-5 times a week, (I am still rubbish at it but I enjoy it and find it helps with the pain.) Initially I wore my compression tights but now only wear yoga socks. There isn't much difference but enjoy the time without my compression garments. I do find that some positions such as downward dog do seem to make the lymphoedema worse for a while but it soon goes.
Thanks so much for this. I took the advice from others and have tried yoga without the stocking and so far so good - no ill effects that I'm aware of, and it definitely makes the yoga easier ( the compression socking is so bulky, it really reduces the mobility of that leg). I'll look out to see if I have the same effect as you with particular positions.
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