Uncomfortable sleeves

[Pinapapple]

I have a problem with my sleaves my nurse fits really good ones that don't dig in at the elbow and stay up at the top.

My problem is with the wrist and hand area.the ones that stop at the wrist dig in there and the ones with a gauntlit dig in between the finger and thumb giving g me pins and needled I'm for ever pulling at it.for a time I gave up on my sleeve but that's not sensible with my arm so big 48%bigger than the other arm.now I have a flowton machine I need to wear the sleeve to contol any good that machine does. Ages ago my nurse said I could snip the area that was digging I tied this but it did not help so yesterday I cut off the thumb area completely and half a cm all round he sleaves now finishes3cm past my wrist and is so much more comfortable and doable. No pins and needled in thumb or fingers. Don't know what my nurse will say to such drastic remodeling will let u know when I'm next seen in July. Good luck every one we've got to help ourselves.

[lovesradio]

I used to have a Mediven gauntlet that caused me terrible problems in the 'web' between thumb and finger and moved to a separate sleeve(Jobst) and glove (Sigvaris). But at the Lymphoedema Conference the Mediven rep showed me their new material (much softer) and sleeve design (parallel seaming) so it might be worth asking your nurse about that. I like the sound of your drastic remodeling!

[Pinapapple]

I've tried a glove before I find it so restricting. I'll let u know how I get on.

[Rebec]

I was told that there are sleeves made to order, so maybe your nurse can just order you some following your measurements.

[Pinapapple in reply to Rebec]

My sleeves are made to order but my hand is very stolen at the moment. Just done. To one sleeve for now I'll c.if they can get that measurement right next time. These are the best sleeves ever fitted in the last six yrs.

[Rebec]

The problem I have, and you seem too, is that we don't see our nurses often enough. I have to wait now for a new sleeve which doesn't dig into my upper arm. I haven't been able to wear the Class 2 sleeve for more than a month as in between NHS treatments I was 'attacked' by a bout of cellulitis. At least we can moan to each other!

[Hillee in reply to Rebec]

Hi Rebecca, I have just come through a bout of cellulitis. Can I ask what your symptoms were and how quickly you were diagnosed? I have not worn my sleeve since I. Case it is still active as only took antibiotics for a week. How are you now and do you have an emergency supply of antibiotics? Kath.

[Rebec in reply to Hillee]

Hi Hillee, it started early in the morning, after feeling not too well the night before, with the arm and the breast on which I was operated all bright red and hot. I also had quite high temperature of 38.6, I think. I immediately started the course of antibiotics which I was told to have at home. I took Amoxicillin 500mg three times a day for a week, but even if no sign remained on my arm or breast after a whole week, I kept away from constricting my arm by wearing a sleeve for a few days afterwards.

What antibiotics did you take and what were your symptoms. I was told to take antibiotics, by a GP, another time when I had on my arm only some red dots, but no temperature nor heat, so decided to wait and see, and it all disappeared in about two to three days, but I was ready to start a course of antibiotics in case it got worse.

It's really frightening to think about this cellulitis being behind the corner, so to speak. Do you keep some antibiotics ya home, just in case?

[Hillee in reply to Rebec]

Hi. Rebecca. Yes, like you, I felt unwell the night before and then Woke up with high temperature and a rash on my left hand side. However, when I presented at the doctors feeling unwell and with pain in my breast and arm, they thought I was having a heart attack!!! After lots of tests I went home but I did not feel well at all. Eventually, I went back to the gp and asked if it could be cellulitis and was then Given 500 mg of flucloxacillin for a week. I have not had lymphodema in the breast before so I think that confused them. There does not seem to be a lot of knowledge out there about lymphodema. I am still feeling a bit tingly in the arm and it is frightening knowing it can happen again but reassuring having antibiotics in case. I hope you are ok now Rebecca. I am looking for a lymphodema therapist and will pay privately because I can't seem to get a referral. Kind regards and thanks for getting back to me. Kath x

[Rebec in reply to Hillee]

Hi Kath. Sorry I didn't notice your name. How come you're not in touch with your oncologist? He was the one who told me to change the antibiotics from the ones you were given to the ones I took. He said that these are now recommended in case of cellulitis. The nurses from the Lymphoedema Clinic gave me reading material to give my GPs as you're right that they hardly know anything. Good luck with finding the right specialist.

[Hillee in reply to Rebec]

Well I have been discharged from the oncologist and I thought I had got away with lymphodema other than mild manageable stuff but hey 6 years later and it has caught up with me. I swim and keep fit and have just sent for a self help DVD on specific exercises etc. so I am proactive but there is a massive shortage of specialist skills out there. What area do you live? Have you found massage helped you? I am not sure if to try my sleeve again but thanks for the info re antibiotics I have read somewhere that amoxicillin are best. I am told you have to be extra careful re normally mild infections like thrush and athletes foot etc. clearly we need to be vigilant. How is your arm now? X

[Rebec in reply to Hillee]

I live in East Anglia. I managed to keep my lymphoedema in check by doing what you are doing, ie, swimming, but after the cellulitis, I find that swimming stopped being of help. I'm going to be given the use, for four weeks of one of those electronic machines that aapparently can replace the help of lymphoedema specialist, I mean to replace the MLD. I also found out that nurses who specialised in Leduc method helped me more than than those who studied the Voden one but I imagine that this is an individual preference.

[Hillee in reply to Rebec]

Thank you Rebecca. You are much better informed than I am as I have never heard of the two methods you mention. I live in Manchester so when I finally get my referral back to the oncologist I no doubt will start to learn some self management skills. Good luck with your machine I sincerely hope it improves things for you. X

[Rebec in reply to Hillee]

Just wanted to congratulate you on passing the post-operative five years with flying colour. Wishing you many more years to come free from cancer in breast or any other parts of the body.

My relative knowledge in different methods of lymphoedema treatments is due, unfortunately, to having needed treatment. Good luck in finding the right people to put you on the right path.

[sleevelady]

I have this problem too with the handpiece digging in between finger and thumb. Usually gets worse the longer I have the sleeves as I (guiltily) put them in the washing machine. Glad you have found a solution.

[Hidden]

I too have the new Mediven all-in-one sleeve with the softer bit between the thumb and fore-finger - it is much more comfortable. I have the same problem of needing to pull down the sleeve over the hand as it 'rides' up but it is something which I put up with!! Can you not contact your nurse before July? I have a number that I can ring and leave a message and she phones me back

[tenerifeprincess]

You shouldn't have to mess with your compression sleeves! I wear Mediven 'made to measure', as I have a small wrist (can't say the same for my waist unfortunately lol). I get two, and have them renewed every 6 months. Used them for about 9 years now, and had no problems with comfort and fit. Luckily, my hand is not affected.