I just don’t know what to do. The gloves given to me by the NHS are too short in the fingers and make my fingers swell at the end. I phoned the nurse to tell her this she she told me I must be pulling them down too much. When I told her this wasn’t the case she said that I must have very long fingers, but she didn’t remember that as being the case. She never actually measured my fingers so how she would know I don’t know but I pointed out that yes, I do have long fingers. She asked me if I had received my custom-made glove I was measured for in my private appointment and I said no. She said was that because I hadn’t requested it?! No, I had requested it but it hadn’t arrived yet. She said that I should chase that up, that she was not going to measure me or give me another glove in the meantime and that while I was waiting I should decide whether I was better off with or without the gloves she had given me, but only I could decide that. And then she said she would see me in two months. And that was the end of the conversation. I thought she was quite rude; it’s not my fault that she didn’t measure my hand and that the gloves don’t fit and I only have a prescription for a custom-made glove because I arranged it myself.
So since then I have received my custom-made glove and it is does not really fit. It is tiny – far tighter than the extra small gloves off the shelf. It is so tight I worked up a sweat putting it on. On two of my fingers it goes right to the tips and on the other two it finishes halfway down the nails. It hurts the most on my thumb and it is so tight the tip of my thumb has turned blue. Actually, the tips of all my fingers have turned blue and feel numb. I don’t know what it is expected to feel like and without an appointment I can’t check whether wearing it is the right thing to do or making things worse. It’s incredibly uncomfortable, and slightly painful, and I am finding it very difficult to type, and almost impossible to use a mouse through the fabric. If the NHS nurse had told me to wait for my custom-made glove and get back to her if it didn’t fit me then fine, but she made it clear she would next be seeing me in two months. Given that I waited ten weeks for an appointment in the first place, and she gave me garments that didn’t fit, I don’t think this is a very good service. So I guess my choices are to go private again and wait for another custom glove to be made, put up with the pain with the one I am wearing or go without. I still can’t get my head round the fact that this is forever and I am going to have to wear this huge constricting glove and sleeve for the rest of my life. Thank you if you read through all this, I just find the lack of support for this from professionals overwhelming.
Hello Lacuna,
Sorry you are having a bad time. Lymphodema is horrible. I have not come to terms with mine but I think I have been lucky to get a reasonably good service - even with this, I have lost count of the different garments/combinations I have tried.
It sounds as though you have had a made-to-measure glove? Privately? If yes, you need to go back to get it fitted and make sure it is correct (sorry, it is extra expense and yes it sucks). It should not make your fingers go blue!!
I have lymphodema in my fingers and hand, a little in my lower arm and nothing in my upper arm. A glove on its own did not work for me. I have a full glove/sleeve (uugh!). It begins at the base of my finger nails and ends at my am pit. I hate it but it works. At first my finger tips went numb.It felt very tight. I also have neuropathy so its a real issue for me. To combat it I was told to try and stretch the finger openings and dont make the mistake of pulling the fingers down, pull them up. Even now, I have almost constant numbness in my thumb, esp if I bend it (ie for typing!). I also use kinseo tape and was given a wrap, but I lost it on the bus on the way home (I have to ring and fess up!)
I have had a combination of private and NHS treatment. Like you, using private treatment until my NHS appointment came through. The NHS also inisted I come back to make sure the garments fit correctly and while it is clear I will be seen every 3 months, they have said I can ring them if I have any problems.
I have been really disappointed in the lack of support available.
If I can be of any help at all, just say.
Rattles
Hi Rattles. Thank you so much for your kind response. It sounds like your situation is very similar to mine. Like you, my lymphoedema is in my fingers and hand and in my lower arm. If you don’t mind me asking, what brand is your glove and sleeve? I think I need something like you have which starts at the base of my finger nails and ends at my arm pit. Do you have a glove and a sleeve or is it one-piece? The constant numbness in your thumb sounds terrible though.
I phoned the nurse who measured me for the glove and she said to give the glove a good stretch and try it again. I have done this, but it still doesn’t fit and from the look of it, it never will. It really does look kind of odd and as if my fingers are all weirdly different in length, which they’re not. So I’ll have to call her again and get another appointment.
Hi Lacuna,
My garment was made-to-measure and its by Jobst - Elvarex. It is black and a class 1 compression garment. I have tried so many others. I started with a Sigvaris, which although I hated at the time, now feels like silk compared with the Jobst.
When I first went for MLD, I was told that because I was being seen so quickly we might get the lympodema to improve to the point where I would just need a thumb piece. At every point, I have lowered my expectation, I was faced with worse so what I have ended up with is so much worse than I ever imagined! I can’t write or type and I feel disfigured. Many of the patients I see at the clinic are alot older than me (and I am no spring chicken at 43!) and its very demoralising. I have learnt that alot of this is trial and error and what works for one person may not work for another. I tried a seperate glove and sleeve (having the all in one is a real pain) but I just ended up with more swelling. Even with the all-in-one, I get swelling on the back of the hand which is a hard swelling but at least the swelling in my fingers has improved. I have just been given a class 2 glove to sleep in which is easier than the bandaging (which I learned to do). Do you mind me asking where you live Lacuna? I live in London.
It would be really nice to support each other through this as there is not much support, alot of emphasis on prevention, but not managing it, and although there are some knowldedgeable ladies on here, they don’t seem to post often. I usually come on the forum at least once a week but I am back at work (another story) so not always very prompt. It would be really nice to keep in touch though.
Rattles x
My custom-made glove is also Jobst-Elvarex and I think it is quite thick and not nice material. Not that I can wear it anyway. The off the shelf glove I have at the moment is Haddenham Microfine and the sleeve is Sigvaris. The glove is quite smooth and like lycra, whereas the sleeve is more like cotton. I don’t like them being different materials as they don’t match. I find that wearing the sleeve does sometimes seem to lead to more swelling in the back of my hand as it seems to have more compression than the glove, which isn’t good as most of the swelling is in my hand anyway.
I agree it would be nice to keep in touch and support each other through this. I am on the forum quite a lot at the moment, but this section of the board is quite quiet. I live in London too, and would be happy to meet and have a coffee and chat. It is always good to know someone in a similar situation and offer ideas, or just offer support. I will PM you.
Hi Lacuna,
I have just sent you a message! I had the shiny glove, which I used with the sigvaris sleeve. It didn’t work for me as the swelling in the hand and fingers got worse. Even though I hated it at the time, its so much nicer than the class 1 jobst. As horrible as it looks though, it is improving the swelling. Its black-at least-and my work colleagues said that I should try and look at it as a kind of glamarous evening glove (umm??!)
If we meet, I can bring you what I have tried and you can see what I have at the moment. Like you, feel it would be good to share ideas and what has worked/not worked.
All the emphasis seems to be about prevention. Not about managing.
Rattles x