Lymphedema swelling of hand from wearing sleeve and glove?

[DS1955]

I had a custom fit sleeve and glove made. My hand swells really bad when I wear the glove and sleeve. When I take the sleeve and glove off my hand goes down. Have anybody heard of anything like this?

[Lynora]

Yes, I have seen this - there may be a problem with the measurements, probably at the wrist and forearm. Contact your provider.

Are you doing daily SLD?

[Health1919]

I sometimes have this issue too but when I remove the glove it settles down. I will wear the glove for a few hours and then take it off for another hour.

Last month I had a Lymphoscintigraphy (an imaging technique used to identify the lymph drainage basin) on my arm/hand and leg. It showed that from the inside of my wrist, lymph flowed down to my palm, around my thumb and them back up my arm. This could explain why my hand would swell because the glove would constrict the flow down.

I would recommend Lymphoscintigraphy to everyone who has lymphedema to show how to correctly massage because we don't all necessarily follow the standard lymph chart.

[deniseelliott30]

If I wear my sleeve at night my hand swells so much it becomes unusable. A glove or an all in one does not stop it. I now only wear the sleeve during the day.

[pixiewixie in reply to deniseelliott30]

Hello deniseelliott30, I have always been told not to wear the sleeve during the night. In actual fact I am not wearing anything during the day as my skin is being so irritated with the sleeves, I have Lupus vasculitis & panniculitis. Anyway the point is that the swelling is no worse at this minute. Did your lymphedema specialist not say compression garments off at night? Hope you get sorted out, best wishes, Honor.

[deniseelliott30 in reply to pixiewixie]

I have had lymphedema since 2004. In those days they said only wear the sleeve during the day. Then about 5 years ago the said that the accepted wisdom had changed and i should wear it all the time. After a while I told them what it was doing to my hand and that I had to be able to use it. If I am honest I do not think the sleeve is any use at all. What does work for me is losing weight, sweating and bandaging. But having had this so many times I am getting to the stage where I can no longer bear it. I think it is probably far too late for me to have the operation and I could not afford to pay for it. Do hope things work out for you.

[Lynora in reply to deniseelliott30]

There are now nighttime compression garments in production. They are very comfortable. I would never recommend wearing regular compression 24/7 unless there has been surgery done on the affected limb, or post liposuction.

[WattleGirl in reply to deniseelliott30]

I find that if I’m doing heavy work that I definitely need the compression sleeve and gauntlet on otherwise my arm swells. I have a quilted type of sleeve for night which is more comfortable and helps stop my hand from swelling.

[MSLADYCOVE68 in reply to deniseelliott30]

Does that stop tbe swollen of your hand

[julesab]

I have all in one now separate did not suit me 😁

[Julie2233]

Yes, I was convinced that the swelling in my hand was caused by the sleeve and glove constricting lymph flow at the wrist but all the professionals just shrugged when I suggested it and told me it was important to keep wearing the compression. I was lucky enough to be able to have the LVA operation last July and stopped wearing compression garments in January. I still have a little swelling around my knuckles and fingers but no where near what it was like before.

[Buddywhite in reply to Julie2233]

Hello Julie I would love to speak to you, I am researching the LVA operation- is there any way I can connect with you? I have LE since 2006, all good but last October it went into my hand and I have been in bother since, Have done a lot of research and tried lots of different garments, nothing seems to work. So am now looking into the operation. The swelling on my arm is very mild ( 3% difference between affected arm and good arm)- but the hand swelling is very difficult/ distressing

[lovesradio]

Sounds like the sleeve might be too tight and so restricting lymph flow from hand. I had a sleeve and glove for a while but am now using a Mediven gauntlet which is working fine combined with SLD, yoga and swimming x

[DS1955]

What's a SLD?

[Lynora in reply to DS1955]

Self lymphatic drainage

[ameliapond]

Hi DS1955 I also have hand swelling and forearm too. My sleeves gloves gauntlet various types over the years have not ever worked for me with secondary lymphoedema .my arm has restricted movement and aches quite often which I believe the sleeves agravate But my Lmph Nurse says to wear it. I would like the Lva surgery but she says I wouldn't qualify 😠grr!

[Noelleu12 in reply to ameliapond]

What causes an individual not to qualify?

[DS1955]

I'm not restricted. My range of motion is good. Even my theapist is impress with that. However, I told her if there's a cause there's an effect. What's the cause? She mentioned a blockage. So now I'm going to have an ultrasound. Any suggestions?

[barkshire47]

hello

yes, I, too, notice very bad swelling after wearing glove and sleeve. I was beginning to think it was only me that had this !!!! mentioned it to my lympho nurse who seemed surprised and had not come across this before . pam

[Lymphoqueen]

I have had LD since 2011 in my right arm and despite years of "made to measure" garments, they still all leave me with a swollen hand. I get the shoulder shrug treatment, but I know it is not rare for this to happen. I only wear mine during cardio workouts and cleaning, otherwise I am better without it. All that fluid getting trapped in the hand cant be good around all the little bones etc that we have there and the hand id the hardest place to drain. I just keep being told to wear it all day every day until I go to bed.

I am going for lymphoscintigraphy next month and hopefully will have a better understanding of the flow and how it can be controlled.

[Buddywhite in reply to Lymphoqueen]

Hi Lymphoqueen did you every have the lymphoscintigraphy? how did it go and did you benefit?

[MSLADYCOVE68]

I had a custom made sleeve and hand garment made and when i first use it it made my hand swell now i dont know what to do are the therapist. Can anyone give me some suggestions

[barkshire47]

yes, my hand swelled up after wearing off the peg gauntlet. but, after being professional measured by my lymph nurse, it has stopped. I have a gauntlet and glove all in one (ie not separate items) I find these much better than separate glove and arm sleeves. if any help, I can advise the one I have. I get two of these every 6 monthson NHS. I have heard that some people - living in certain areas - do not get this type of gauntlet. I am lucky, my lymph nurse tried me with so many items. have you also considered getting a "lymph massage machine ". I purchased one (well under £400) and it does work. you do not need to get an expensive one - again, let me know if you want any further info pam

[Buddywhite in reply to barkshire47]

Hi there- the lymph massage machine for STG 400 sounds very interesting, can I get more detials on this please? Would love to hear from you

[barkshire47 in reply to Buddywhite]

hello, I purchased the machine back in dec 2017 - details as follows. Product code 9185.00. cost £358.35 (free delivery and no VAT because you don't pay VAT if you have lympho). purchased from Sissel (UK) ltd. halifax, yorkshire. phone no. 01422 885433. email [e-mail]. machine still working fine. hope this info is ok. pam

[Buddywhite in reply to barkshire47]

Thank you! Can I ask what is the actual name of the machine

[barkshire47 in reply to Buddywhite]

Its called "Power Q1000". its a 4-tier pumping action, with different pressures. their webpage should give you all info. I presume this company is still around. anything else , do contact me again pam

[Buddywhite in reply to barkshire47]

Pam do you have le in your arm or hand

[barkshire47]

by the way, not sure how to post a new chat. but, has anyone had Lymph Node replacement operation for arm / hand ??? pam

[memec]

I have that problem now. I was professionally measured, I think, but ever since I got these my fingers swell up and the sleeve and gauntlet are very tight around my wrist. I'm beginning to think that I was improperly measured.

[Perido in reply to memec]

I've been professionally measured for 3 flat knit stockings now. The first was too tight in the thigh, the second was loose in the foot and again too tight in the thigh. When I was measured for the third stocking I was proactive and watched carefully what the nurse did; in my case I have a very soft thigh and noticed that the tape measure was making a big indent at the top of my inner thigh (maybe the nurse wasn't looking too closely in the name of preserving my dignity?) so I asked for the tape to be loosened. Result: my third stocking, although not perfect, is wearable and probably my best garment to date.

Ideally we should be measured for our garments when our limbs are at their smallest which is usually first thing in the morning. So in practice can the best measurement ever be achieved by a third party? Maybe with a bit of training, and for those who wish, it is us the patient who should be doing the measuring?

I have had two ICG scans (privately) now and feel I am much better informed as to how my lymph system behaves. I feel strongly that these scans should be a routine part of NHS lymphoedema treatment to enable better informed management of the condition for each individual.

[DS1955]

Fluid drainage and the swelling in my arm and hand almost gone. I wonder why?🤔

[DS1955]

It comes back and forth!