I posted a couple of months ago saying that I had numbness in both feet and tingling which I felt was due to the compression I was wearing: Class 2 tights plus Class 2 stockings.
All the replies stated that I shouldn't be getting numbness and/ or pain and this was in keeping with what I believed as well. I finally got to see the nurse who said that the problem was that if the compression was reduced in the garments it would mean that the swelling wouldn't be controlled so well. She sort of implied that I had to put up with the numbness in order to have effective control over the swelling. Also, about two years ago I had my right leg bandaged for a month to try and get a reduction in swelling. It was extremely tight and often painful, particularly at night. The nurse said then (a different one) that if it hurt a lot I should take painkillers.
To be honest I feel like I'm going mad. I know that the numbness/ pain isn't good and your replies back that up. And yet the nurses seem to be saying there is no alternative - can anybody explain what's going on? I'm worried the compression might be causing permanent damage to the nerves and yet I don't want my leg to get bigger either.
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caroline111
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hi Caroline 111, I sorry to hear that you are still having problems. I’ve read your previous posts and it seems you’ve had pain for quite some time. I have primary so it may be different to secondary. Is there something else causing your pain? Have you seen a consultant recently, he may have answers that nurses won’t know and I assume can order tests that the nurses can’t? I wonder if an up to date Doppler test would be useful or even a nerve conduction test? If anything, it might help put your mind at rest. Have you been given any painkillers?
I’m sorry you’re going through this, you definitely shouldn’t be. Unfortunately, these nurses see many people saying they are in pain and consequently the nurses don’t take into consideration that your intense pain is in fact an issue. It’s something I’ve come across and if you can give them an indication that they can understand, it might be helpful, eg on a scale of one to ten 1=headache and 10=(worst pain you can imagine that they can relate to, eg childbirth/tooth removal without anaesthesia/broken limbs etc) then say where you are on the scale. Hope this is of help
Hi Caroline, the responses you've had from the nurses don't sound very helpful at all. The nurses at my lymphoedema clinic have always stressed that pain and numbness are not to be tolerated. But it's very difficult, isn't it, since lower compression would generally mean less well contained oedema - so I suppose it may well be a choice. It sounds like you need a second opinion, but I don't know how you'd go about that, given that first opinions are hard enough to come by. I'm not happy with my compression either, but I've more or less given up now...
Another thought: did you see Natalie Phillips when you had your surgery at the OLP? I wonder whether she might be able to advise - she seemed very helpful when I had my consultation.
Thank you everybody for your helpful replies. I have decided to contact my GP and tell him that I'm worried, ask for a Doppler test and see if I can get a second opinion on whether or not I have to choose between uncontrolled swelling or numbness. He is normally quite responsive (although he doesn't know much about lymphedema…..)
This stance is typical of the NHS in the UK. Compression is all they have to offer unless you want the inconvenience of bandaging that has to be applied. The NHS are not willing to look at alternatives to compression.
They told me years ago now, that compression was all they had to offer me. I had numbness, I had excrutiating pain, I had extra ridges and sores due to the compression. My feet are no bigger today than they were then and that is after ditching compression. You see I also have a number of other health issues and because I told them of these, I felt they did not listen.
I have asthma and copd and no matter how hard I tried to get the compression on I was having a spasm to get them on. After each compression sock I was having to take a 20 minute break to get my breathing into control, only to start again with my other foot and have another spasm. This is all dsepite being given some equipment to get the compression on. The fact remains that I can't reach my feet without bending and this task alone was a mission. It has been years since I wore tights and had I been able to get them on I'd be wearing them for work instead of trousers all the time. A skirt and blouse or a smart dress always looks more professional and feminine for a woman, but sadly most of this wardrobe I no longer use as I wear trousers for convienence.
I also have a severe skin condition as I regularly break out in eczema and again the lymohoedema nurses weren't listening. The ointments and emullients would have damaged the compression. To which one of the nurses suggested i missed treating my eczema and gave my swollen feet and circulation a chance. I emphasised that I can't do that as my skin is seriously dehydrated and gets infected very easily. Eventually, I could take compression no more. So i stopped and the lymphoedoema team of nurses told me that patients who refuse to wear the compression are given short shift.
So i have not seen a lymphoedema nurse now for at least 3 years now and like I said before my feet are no bigger today than they were then. But they are free of the agony of compression, the numbness, the constant pins and needles, the increasing numbers of ridges and sores in the ridges. They are free also of fungal infestations.
Hello Mo. I'm really sorry to hear of all the problems you've had with compression but not completely surprised. I also have eczema although (luckily from the point of view of compression) not on my legs. However, I do have recurring shoulder problems and trying to get on flat knit tights and stockings when it is painful is so difficult and it exacerbates the condition. Although I have equipment to help with getting hosiery over my feet I don't know yet of any type of machine which will actually pull it up for you!
Lymphedema is just not a priority for the NHS and when I compare it with the treatment that I received for cancer it is like being in a different world. I am of course very thankful that the cancer treatment was so speedy and effective, nevertheless having lymphedema can really get you down and it feels like the medical profession in general is simply not interested. My bugbear at the moment is trying to get tights that actually fit me. Through the NHS and private health care, three companies have been tried with two different types of tights and yet there are continuing problems. I do not know why they are called ‘made to measure' because there is enormous variation in size. I can't seem to get any answers from people as to why this is the case. I have posted about this before - I just find it so soul destroying that something that is supposed to fit doesn't. There is enormous wastage quite apart from the disappointment and frustration for the patient. I would like to risk going without but I l know my legs would just balloon.
Like you, I've also had problems trying to find shoes that fit as one foot is much more swollen than the other. I've recently had success with DB shoes widerfitshoes.co.uk/womens-...
A friend of mine who also has lymphedema has also had some luck with Reed Medical and she has got her shoes funded by the NHS
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