First Meeting with the lymphedema and cellulitis nurse/advisor (After referral from Tissue viability Nurse) (Doctor was no help).Who I have to say seems lovely and very approachable. She has measured and ordered me a stocking with a silicone band so it don't slide down this time on my Champagne shape legs and a set of pop socks and a velcro wrap she did not call it a stocking and I cant recall its name. All are made to measured for my left leg. The right one is not very bad but will need wrapping but she is going to let me cope with one at a time first off and this suits me.I understand they can take 3 weeks to arrive. Also she is going to do a doplow test as I have not had one for a while and then it was the reason they found my heart problem. So Im looking forward to them checking it in the hope maybe I might get some good news for a change. She seem to think my skin was coping well despite its problems and believed I had a good regime for moisturising them and this has helped a lot and will help them very much when wrapped but to still keep it up. I don't know how long or what she will want me to wear the stockings or socks. She asked me if i had any one to help me put them on. I have a carer who is not always there but between him and my daughter i think things will work, we will try first. Also i never asked about showering with a stocking on??? I got the impression that its a system of the more I can wear it the better it is for me but she did not want to make things sound to daunting Also that they should be dry to be wrapped and at this present they seem to be leek and infection free after more antibiotic in the last 2 weeks again. Funny after you get home you think of so many questions do the pop socks go on under the stockings. Do they wash easy is keeping them clean easy?
Can I say I use to be able to sit at my computer desk and table for many hours now my legs cant take it. If i try to sit at my desk for more than 15min at a time. Also at night when they are up resting they get the strangest feeling and not sharp pain but uncomfortable pain also I'm getting terrible cramp or spasms in the night do these things have any thing to do with the lymphedema. My right leg gets some real strange feeling the only way I can describe it is it feels like its having a panic attack and the only way I can cope with it is to keep jumping it up and down as its a feeling I can cope with. Ok do I sound like I need locking up?
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andor42
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Omg andor42 you do not need locked up you need to get back in touch with your lovely nurse/advisor and ask all the questions you have posted here. It's great when you finally meet someone that can give you proper treatment. Good luck with getting the answers. If it's any help I take my arm sleeve and glove off for washing and showering and asked for two sleeves so I can wash through at night and have a dry one waiting for me in the morning. The sleeve doesnt get very dirty but the glove I have does - it's a not very pleasant reminder of how dirty our hands must get in the course of a normal day!
Make sure you drink a glass of water before you retire at night...that will help with the cramps......cramps often happen cos of lack of fluids......think of all those athletes who suffer cramps when they are playing their sport...I have seen tennis players cramp up badly but once they have had fluids they come right....
I wear compression stockings and generally have them on from the time I get up til I have my bath at night...then I moisturise my legs so the moisturising cream soaks in over night ..as some creams can damage the stockings
And ..get in touch with you lovely nurse and ask all those questions...write them down so you don't forget them...I often do that cos I sure do forget something that I need to ask if I don't write them down...
Reading what other people have to go to to get to my stage I consider my self very lucky compared to a lot of people. I have read some people have had no help for years. This is so wrong. Im lucky I have met the right people to help me
I am also so lucky to have a great lymphoedema nurse who I see regularly but I can also leave a message at the hospital for her to contact me if i need to discuss anything with her. I also have 2 sleeves for my arm so one is in the wash and the other being used. I am allowed a new one every 4 months and they do get very 'grubby'. I now have them on repeat prescription so I just order after 4 months and my GP gives me the prescription. I take it to my usual pharmacy and it is usually available the next day. To start with I had problems getting the doctor to order the correct one but eventually got it sorted. Good luck and make sure they fit OK. It might be slightly different for you as mine is for my arm but hope it does the trick
Hi Andor, there is a thing called restless leg syndrome, dont know anything abt it, or if there is treatment, however drinking water or even a glass of bitter lemon may help in the short term..
Hi Andor, I have been told by my LE nurse to wear my stockings all day, every day. Remove them for sleeping and showering and, as others have said, moisturise at night before bed. The creams can damage the compression of your stockings otherwise. Your wrap may be a farrow wrap which you may need help to put on, I have one for my ankle but I can never get it tight enough putting it on without help. It sounds like you have restless legs, which is apparently quite common in LE patients. It drives me nuts but apparently there is some medication that can help ease the symptoms though I haven't investigated that any further as I take enough pills each day. As others have said, write all your questions down so you can ask each time you see your nurse and good luck.
Glad you are getting help. May I suggest you print this page out and highlight the questions, if you have access to a printer, save you writing it all down again. I am wondering what a doplow test is? Good luck
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Living with primary lymphoedema (left leg)
Compression garments
lymphoedema and leg wounds/ulcers
Diagnosed with cellulitis on Wednesday at an appointment with the lymphoedema clinic. 
Lymphedema pump
