I'm a parent/carer for my 29 year old daughter who has severe learning difficulties. She has had primary lymphoedema of the lower legs for 12 years. Until now we have managed the situation quite well for her considering that she cannot communicate her needs and feelings at all. However, for the past 2 years or so she has not been her usual chirpy self and consequently has had countless medical checks - revealing nothing.
I am now wondering if her new design lower limb support stockings are too tight - is there such a thing as a too tight stocking?? I really struggle to get these on and off for her. They are the ribbed zipper variety. I had mentioned this to her lymphoedema nurse who said they are ok. The said nurse has now retired withoout a replacement. My GP has managed to find another one from a different area and we are awaiting an appointment.
As I cannot ask my daughter how she feels, I was wondering if anyone out there has been prescribed stockings that were just too uncomfortable/tight to cope with?
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jay-tee
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I don't know what Zipper support stocking are. However some patients garments are not the right fit. If this is the case it may cause discomfort and pain. I am primary/ legs/ feet. My compression garments fit well but aggrevate some of the joints in my feet - which causes me pain from time to time. You can get a frame which helps getting the garments on (particularly onto someone else). If you have not already done so I suggest you contact the Lymphoedema Support Network (LSN). lymphoedema.org. 020 7351 0990. They have a website and telephone help line. My sister has learning disabilities (more towards moderate than severe) and also primary Lymphoedema. She can communicate, and, using a frame, has learnt to get her garments on. However she does not complain of pain so there is also a fair amount of guess work. Exploring whether your daughter's garments are causing a problem strikes me as a good idea. Good luck.
Thank you for taking the trouble to reply. I have now managed to get her an appointment for next week in a lymphoedema clinic. It was useful to know that there can be some joint discomfort which may be a reason for her unhappy sounds she makes. I also am a LSN member.
How difficult for you to care for an adult daughter with (now) no lymphoedema support. By 'ribbed' I am guessing the stockings are flatknit and made to measure, therefore they should be comfortable and not dig in or leave any marks. Are the zips leaving deep indentations? This would be an indication the stockings are too small in circumference. Did your daughter's legs change a lot between being measured and the stockings arriving? L Practitioners are not great fans of zips because they interrupt the compression and are much harder to get on and zipped up than pulling a stocking on with an aid. I always recommend an applicator called Ezy-As and rubbery palmed gardening gloves which makes life easy for patients and carers and makes it less likely to need zips. My suggestion would be to ask your Practice Nurse to get in touch with the compression company and ask to speak to their Clinical Nurse Specialist for advice. It may be worth trying a different fabric, something softer without a zip. The Clinical Specialist could advise your Practice Nurse how to measure and order. It's detailed, but not difficult. It may be worth you learning how to do it. All the best, you are doing a great job.
Thanks for your reply. Yes, her legs do have deep zip marks and "crease" marks when removed. She was fitted with them when the original nurse retired and another took over. I have managed to find an appointment out of county next week and will certainly mention your useful suggestions.
Hi - although I live with primary lymphoedema I am no specialist in the area of treatment, so I won't comment on that aspect of your post. But as a therapist and counsellor, I feel a little more on solid ground.
I was left wondering if your daughter is showing signs of depression? As she has communication difficulties she will really struggle to communicate this, and may use behaviour as a form of communication instead. I know myself that living with lymphoedema is no picnic, but at least I can put how I feel into words. It sounds like your daughter cannot. Does she even understand what the hosiery is for? Has she been able to have this explained in a way she can understand?
I was left wondering if she is aware enough to realise her situation, including her dependency on you, and also the loss of this important figure of the lymphoedema nurse specialist. Have you been struggling at all over these last two years? If so, as her primary carer, it might be that your daughter has picked up on this, and is now feeling scared about how fragile her situation is.
It may be that my musings are completely off track with the situation you are in. If so, please disregard my post. But if it has a resonance, perhaps it might be useful to talk to her GP about being referred to a specialist LD counselling service?
Good luck with finding the right help for your daughter. You sound like a wonderful mum, by the way!!
Thanks for your kind and useful comments. In fact my husband and I have wondered if she is now experiencing a form of depression. She is unable to express her feelings and needs, and also cannot understand or follow a conversation. Her level of understanding is quite severe but luckily she is quite easy going. I will certainly follow up your chain of thought.
I am glad that my thoughts were helpful, if only to add more weight to your sense of her situation. I hope you are able to find a counsellor or therapist who specialises in working with people with LD's. I know they are out there, it's just finding one. Your GP will certainly be a good place to start.
Does your daughter spend much time in a seated position? If the garments are knee high, is there a deep indentation left in the skin just below the knee when the garments are taken off? If there is, then the garment is too tight. What is the skin like on the shin and at the ankle?
I think Whitesugar has made a good suggestion - ask the new l/e nurse if your daughter can try one of the products which is made of a softer material (Juzo make one called 'Juzo Soft') - and also, if you don't have one already, ask her to prescribe a donning device - Ez-As is one of them... there are a few. There is also a newish product, from Sigvaris, called a Rolly - which can also be used as a form of lymph drainage 'massage' - it looks like a child's arm float for use in a swimming pool - feels lovely on the skin! Worth a try, and she may find it fun.
Thanks for your constructive reply. I realise now from yours, and other replies that her stockings are probably way too tight because of the severe indentations left on her legs. I have now managed to get an appointment next week and will bear your suggestions in mind when discussing the problems with the nurse.
I can't manage to put on compression garments (I have had polio), and found that MLD (manual lymphatic drainage massage) helped me enormously. Most areas you have to have this privately, and the NHS/GPs don't like to fund this! However, if you go to
this details what I did to get £2,000 worth of treatment on NHS - thanks to my MEP in Brussels - you have probably done steps 1 - 5, so may like to start with Step 6. Good Luck!
Thank you for your reply. I did manage, many years ago, to get MLD at a local hospice but sadly this has now finished so I will follow the link you sent me.
I have lymphedema, primary, and always thought comptession garments as medieval torture. Been prescribed those things and never used the things. Movement is the best form of treatment, especially dance. It also acts as a treatment for depression. Even those with limited mental capacity can enjoy and participate with the right teacher.
Thank you for this. We have tried several physical activities but with great difficulty as her movements are quite limited and she has severe difficulties with communication. I take her for little walks and swim whenever possible. Perhaps I will make more of an effort now.
I struggled with compression and was supplied with the zip up kind. The nurses fitted them, when I took them off I had a deep, wide groove on each leg from knee to ankle, where the zip had dug in during the time I wore them. when I tried to put them on I could not do it. The zip would not close. you needed three/four hands to pull the sides together and to run the zip up. They dug in and were painfull I had to go back to the traditional style.
Your problems sound just the same as my daughters! Thank you for replying. I will definitely get her reassessed when we get our long overdue appointment next week.
Hi, you must be very frustrated and worried. I have primary lymphedema and unfortunately you can have stockings that are too tight. I currently wear class 3 stockings and have tried class 4, which were very uncomfortable and extremely tight. Did the nurse change the class of the stocking?
Hope you get everything sorted for your daughter and yourself.
In relation to bigleg's comment above, Farrow Wraps are available in the UK on prescription I believe. They are much easier to apply on someone else than a compression stocking, so might be worth considering. However, quite thick. My son used them for a while as night wraps, but he prefers to use his normal garments in the day and sleep without any garments at night now. Anyway, here's a link to more info:
They do have a pip code and the web site offers all the forms your practitioner needs to order them. Hope your appointment goes well - you are a great advocate for your daughter x
Yes it does help and thank you for replying. She does get deep grooves and the stockings do crease around her ankles. I have now managed to get an appointment for a reassessment and will mention all of this to the practitioner. Also - I have developed a technique to put on/take off the stockings each day, but it requires all my strength!
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