Ginsing10 years ago

Thanks so much ninewells what a brilliant tip ! xgins

Loobs10 years ago

Thanks Ninewells I will definately try that as the slipping and tightness behind my knee drives me crazy!

ninewells in reply to Loobs10 years ago

You are so very welcome, always great to be able to share things we find out along the way.. Doesn't mean it will work for everyone but i always think its worth a try, we can't loose anything by giving it a go can we. Good luck.

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LegsEleven10 years ago

Thank you, Ninewells! I'm relatively new to all this lark, only 2 months since diagnosis - and have to take my Venosan 'special' rubber noduled gloves with me in the handbag etc. because the stockings inevitably pucker around the back of the knees and ankles - and I have to find a private space to drop the jeans and pull up the stockings. Tedious and uncomfortable.

Most grateful for the tip. Will try today.

ninewells in reply to LegsEleven10 years ago

Have a go and see how you get on. There is also another garment you can get that wraps around the top of the stocking, it doesn't have the gripper top, but it sticks to itself as you wrap it and they don't move at all, But if you pull them real tight it gives you pain in the back s it puts pressure on your lymphatic system at the groin area, so be careful of how tight you want them. The gloves help stop getting skin callouses on your knuckles. I use to have real nice nails but 2 years of compression stocking has finished that . But what do i want more nice legs or nice nails, i think its a no brainer that one. Good luck.

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jas2810 years ago

I can't wear grip tops at all, as I am allergic to the silicon band round the top - it makes my skin very red and sore. I wear plain stockings and hold them up with "it stays" glue, and I have no problem with them slipping.

If your stockings pucker round the back of the knee and ankle, are they too long? I would have that problem if I wore standard length stockings, as I'm not very tall, but I wear petite stockings. I have to stretch them to pull them up, but they are a lot more comfortable to wear.

Nevertheless, they do dig in round the back of the knee if I bend my knee too far, so I always try to sit with that leg slightly outstretched.

Also, even though the tops don't slip, the stocking does sometimes feel uncomfortable when I'm walking, if there's too much material round the knee area, but I've found that I can grip the back of the stocking through my jeans and pull it up a bit to relieve the pressure at the back of the knee.

ninewells in reply to jas2810 years ago

Have you tried the one layer wrap top that can be purchased by the hospital for you. It just sits on the top of the stocking not rubber, it sticks to itself as it the wraps over. Don't over pull it as it can tighten at the groin and cause you real bad back pain. They Dry real fast once washed. Ask your Consultant if they can send for a set for you if possible. If they need the proper name let me know and i can check with My Lymph Sister to see what she orders them under.

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ninewells10 years ago

Your so welcome nice to be able to share.

LegsEleven10 years ago

This sharing makes me feel less isolated. Thanks to all who have answered and commented on my entries.

VeronicaBell10 years ago

Great Idea I will try the water trick because I have been wearing the stockings for 3 weeks now and they are driving me crazy. Very new to Lymphedema.

ninewells10 years ago

Honest it really has been great to discover it. Its changed my daily routine and it stops my blood supply nearly getting chopped off at the knees hehe. Good luck Veronica.

Loobs10 years ago

Just want to say I have now tried this and I'm amazed to say it works a treat...so simple but definately a stressbuster! Thanks again

ninewells10 years ago

Oh so glad it worked for you. Good luck and no more loss of blood at the knees hehe

LegsEleven10 years ago

Just to say that I have finally got some stockings that are comfortable - and on the NHS! They are Jobst, from Germany. They have a lace band at the top, with swirls of silicone to grip - and so far they have not wrinkled behind the knees or around the ankles. I only received one pair, and my lovely lympho care nurses sent for another, also free on the NHS. I was desperate for another pair, as if I change to go out in the evening (pretty rare!) I want to put on a clean pair. Washing every night in bathroom washbasin doesn't always remove the residue of what I can only assume is body lotion and skin particles - leaving a dusty mark on my black stockings even after washing. I have found that washing in my machine at 40 degrees gives a super result, but because I live alone, it's difficult to have enough dark garments to wash together in a 24 hour timeframe. I have resorted to rewashing dark towels etc. with my Jobst every morning, wear my second pair and repeat the process the next morning. It seems to work for me.

But, and it is a big BUT - the second stockings on prescription arrived days ago, not as prescribed, but they were the same compression. My pharmacy said they had to re-order the correct prescription from Jobst, but it would take a few weeks to arrive. I was desperate for that second pair, having managed since mid-January with stockings for post-varicose veins surgery that kept cutting off the bloody supply around knees! So desperate in fact that I actually bought the 'incorrect' stockings, as they were the correct size and compression. £89 on the credit card! For Norah Battys! But I was actually pleased and grateful to have them. How the fashionista has fallen ...!

Wore these Jobst thigh length stockings on a twelve hour door-to-door journey down to London to have a Lymphoscintigraphy (only allowed to wear them after the tests were completed). My legs felt more comfortable once they were on. I did my leg exercises on each of the four train journeys, and my legs were OK when I got home. No puckering at all.

More experienced lympho bloggers on this site are always advising that we should not accept what we have been given if it is making our experience of lymphoedema even more difficult than it need be. Without being aggressive or obnoxious, it is fine to ask for second opinions or different compression garments.

This site gives us support, information, hints and tips and some very good advice. I try to check in every day, and although I may have nothing to add, feeling humbled by the courage and endurance shown by so many people with lipodema and lymphoedema, I do love reading the questions/answers and blogs.

Many thanks.

ninewells10 years ago

Good Morning LegsEleven,

Yoyr whole story made me smile today and i could feel your delight at finally getting help with your compression stockings. I was so dissopointed that your out of pocket for £89. can you not return them and say they are the incorrect purchase and get a refund. But reading the rest of your story i think that maybe you hav e possibly washed them now, if so you would maybe have a bit of trouble returning them.

Glad your new originals are helping. If they start to slide behind the knee i

have a little tip for you;

Get the stockings to the desired height on your leg

Turn back the gripper top

Gently run a damp sponge around the whole rubber gripper area.

Pull it back over and pull into place, within seconds you will feel it slightly tighten and it wont budge an inch all day

I have found that this stops them slipping and causing a tightness behind the knee come mid evening, and i always seem to get a better fluid loss on the leg by doing this.

Good luck i hope you notice a difference real soon.

Ninewells

LegsEleven10 years ago

Thank you Ninewells for your comment and advice. I have seen this tip from you elsewhere on this site, and used it as you suggested. I was wearing the wrong kind of compression stockings at the time, given to me post-high-tec varicose vein procedures, but they were all I had until these lovely Jobst appeared. Unfortunately, dampening down etc. didn't stop them wrinkling downwards - but I believe that was because they were well worn and the wrong type of stockings.

If the Jobst start to creep downwards as they 'age' - much like my own body - I will use your tip again, because it does get good reports from other lymphos.

You were right about the stockings having been washed and I couldn't really return. But at least I now have two pairs, which may even get to the more practical three pairs eventually.

When I think of how many pairs of tights I used to have available at any one time, I get quite cross. And I understand that years ago, lympho patients had to pay for all their compression garments themselves.

Enjoy your blog so much, but don't always check in every day.

Best wishes.

ninewells10 years ago

Hi Legs eleven,

Thanks for the nice feed back, its good to share isn't it. Sometimes just reading some other persons experiences makes us feel less alone, as this condition really does have an an emotional impact on our day to day life doesn't it.

I always feel its at weddings and gatherings, that i feel my worst, as i know i would love to fit in just as other do, but, my limbs will always be a talking point for others no matter if they are family or not. And the comment i hate most of all is Poor bev....whats poor about me, I have a health condition get use to it, I have to.

feel free to drop me a line if you want to chat, my email address is : beverlyawalker38@sky.com, i know we don't always want the world to see what we are feelining, and at times it's just nice to have a little privacy when asking something from others. I tend to check my emails daily bit not always the website.

Glad that you now have at least 2 pairs, don't feel like you can't ask for more, i get 3pairs every time i visit my Clinic which is every 12 weeks, I get remeasure and the upside of this is i never get left with stockings that no longer fit, and my legs have always got the correct pressure for the size of my legs, even if it means they have gone up or gone down.

If its down then my stockings slip more and i know my swelling is decreasing which lifts my moods, if they get very tight then i know the fluid is building and that can get you down, But i also pop my farro wraps on top of my stockings, this also helps reduce the oedema.

If i am house bound due to the pain and discomfort this is the best time to do this, as i can't walk around outside with them on.

Wishing you lots of good results.

Ninewells x

flowerdancer6 years ago

Hi niniwells, thank you for this tip. I have just ordered some stay up stockings from cosy feet hoping they can be used in place of hospital compression socks after my hip replacement on Monday week. The nurse at the hospice cannot override the hospital protocol on this and as I usually wear tights, the higher stockings mat not cause the Michael in man type swelling and discomfort I suffered the first time. Flowerdancer.