Swollen hand

Swollen hand

I've had arm lymphoedema following a mastectomy, for 2 years now. It was diagnosed later rather than sooner so had chance to get a good hold, despite my protestations. Once it was diagnosed I was put in touch with a Lymphoedema Nurse Specialist and we've worked together for the past 2 years trying to 'find the right compression sleeve' that will 'work for me'. Sadly, so far, none have. My arm seems to have hit a plateau about 18months ago and has not decreased in size at all since then no matter which sleeves we try and how long each day I persevere with them. I continue to exercise the arm and I moisturise regularly every day. Nothing seems to 'work' to decrease its size. Also, a problem that really gets me down is that whatever sleeve I wear (and I've had different combinations of sleeves, gauntlets and seperates) I always end up with a swollen hand. My hand is always of an increased size when I remove the sleeve compared with before I put it on. I've tried wearing it for ten hours or more each day, down to just 2 hours each day but nothing works. The hand is always swollen on removal. Also, its my hand hand and arm that are lymphoedemic and I'm right-handed - which can make life quite difficult at times. Does anyone reading this have any ideas about how ot help with the hand-swelling, or have they experienced the same thing at all? Any advice or suggestions greatly appreciated.

47 Replies

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  • Hi SpangleFox,

    I also have lymphoedema in my arm following a mastectomy, but it was my hand that swelled first (the arm followed 4 years later). My original breast cancer nurse prescribed a compression mitten which controls it - I don't know why you haven't been offered one. Regarding treatment, I'm not surprised it took so long to be diagnosed, as it seems that training in both the symptoms and treatment is not consistent. I don't have a single Lymphoedema Nurse - I see any one of about 6 people and they all tell me something different! They contradict each other and the information on the internet from official sources. Try and get hold of a mitten - it will help. Good Luck.

  • Hi SpangleFox your situation seems very similar to mine the first indication of Lymphedema was swelling of my hand I now wear a gauntlet and it is now very rare that my hand swells and this is only when I lift something heavy without my sleeve on. Recently I have managed to get the swelling down in my arm by wearing my sleeve for most of the day.

  • Hi Linda6, thanks for responding. I'm afraid the back of my hand swells when I'm wearing a compression garment. If I leave it off it doesn't!! Isn't that weird? If I leave it off completely for a couple of days then the upper arm suffers and becomes uncomfortable - so I KNOW that it must be swelling as it 'catches' on the side of my body. I can't seem to win. I currently wear a Juzo all-in-one garment from the top of my arm to my fingertips. I've tried all sorts of combinations in the past. Just a sleeve, just a gauntlet, both together, and now its all-in-one. Concerning the swollen hand this all-in-one is the best of a bad lot. All of my garments have been made-to-measure. I know this may sound an odd thing to say but it brings comfort to me just knowing that there are people out there like myself and also that are willing to respond to my Post. Its been good to hear from you. Thanks for your reply, take care, PuzzleQueen

  • OK my friend after having had a malfunctioning lymphatic system for 25 years and living where I do in Eastern Eur I can also suggest that you cope with no help available that I would trust, I now believe that relief from this condition is in your own hands ( no pun intended). Stufff any so-called 'treatment' that may or may not be offered...most of it brings ultimately useless results long term and with the incessant multiple outrageous use of anti-biotics which ruin your health and do long term damage as well as knocking out all the body's B vitamins. You truly have a miraculous self-healing body...if you let it. Assist yourself with a healthy fresh fiid diet cutting out everything that you know in your heart of hearts is bad for you. Drink only clean water, fresh vegetables and fruit and beans,green lentils keeping as non acidic as possible. You really have to educate yourself. and form your own opinion and listen to you r body...it is a skill to be learned. Yes life with lymphoedema can be very debilitating from time to time but you can make great improvements.Depression also creeps in from time to time and your loved ones have to accept this and be supportive. Mood swings and extreme tiredness are also unwelcome visitors from time to time. Accept them and minimise their effects. One of the most important aspects of living with L is ATTITUDE!! Look it in the face and scream STUFF YOU! you are not going to ruin MY life! I can also suggest that you find' Bobby's health shop' on the internet and read the very illuminating article on H202. From my own personal point of view I can thoroughly recommend it ,,,It comes into the category of don't tell your carer as very few people have any knowledge of its stunning efficacy. A nd certainly medical people do not as they operaate in the hands of the drug companies.. If something is useless ...discard it. Your body is yours ..you meducate yourself and make the decisions. One other thing which I know influences the level of discomfort I might be experiencing is the WEATHER!! Low air pressure..when it is very rainy is an absolute killer! as yesterday here but todayis a fabulous dry and sunny early Spring day and I am running around like a two year old! Very much a thing to watch out for. It can and does take some time to train your nearest and dearest into the ways of this situation like sudden tiredness and needing to opt out and lie or sit down and that you are not swinging the lead and avoiding doing normal stuff around the house..oh yes !! Been there done that!

    Your decisions are your own to make..Develop the confidence in yourself to do that. Walk walk walk but not to the point of extreme tiredness

  • sorry a few gremlins running around there. living where I do in Eastern Europe with no help available that I would trust I have developed my own system, unique to me to manage the Lymphoedema I hope there are no further errors. Apologies

  • Sorry you are having such a difficult time controlling your lymphoedema. Have you tried gauntlets with a higher compression than the sleeve? I wonder if that would work? Is there a specialist you can ask to be referred to? Sounds like you have given the basic treatments a good try. I do hope you find some good help.

  • Hello again. I have tried many combinations of sleeves and gauntlets and seperate gloves. I've even tried a Farrow-wrap sleeve. Each one seems to keep my arm in check - but that just means it keeps the arm the same size and doesn't allow for any increase in size (but neither do they help decrease the size!!). Its my hand thats the problem. No matter how weak or strong the compression is, my hand always swells when wearing it - shrinking very very slightly when its removed. My Nurse Specialist has no answers for me at the moment. I frustrate her terribly!!! Regards, Spanglefox

  • I haven't got an answer I'm afraid but I am in an identical position, even down to the same arm and hand. Practically I prefer separate sleeves and hand pieces but the double layer seemed to make it worse and I now have a full sleeve and hand piece. I am afraid I have been in this situation over 10 years and even though I had some bandaging last summer and it went down amazingly I was back to square one within a few weeks. I was a bit disappointed to say the least and now just accept it is something I have to live with. I wouldn't let my experience put you off though, they are designing new support garments all the time, I have my six monthly check up in a couple of weeks, just hope it hasn't gone up even more in size. Good luck.

  • I have had lymph for 8 years following a mastectomy. It affected my right arm and I am right handed and an artist. The "experts" at that time said that the sleeve should be worn only during the day. My hand was very little effected. Then the "experts" decided that it should be worn for 24 hours. My hand swelled up like a balloon. They then tried all sorts of gloves and all-in-ones, and my hand swelled to such an extent that it became unusable. The gloves also made gripping difficult. In the end I pointed out that I had to be able to use my right hand and that if it had been OK to not wear the sleeve at night for years, it must be OK now. My hand is now normal. The arm remains as it has always been. The sleeve does not make it better. I wear it in the hope that it helps to stop it getting worse, although I am not convinced of this.

    I have had Manual Lymphatic Drainage (a special form of massage) so that a nurse could get her qualification in this and have been refused it ever since. If nothing else it is very pleasant. It is prohibitively expensive privately. Three weeks bandaging does seem to reduce the swelling, but means I cannot use my right arm and cannot go out and is uncomfortable and sometimes painful. But this is also rationed and is now offered only for 10 days and not at the weekends because the nurses do not work.

    Your condition seems to be very similar to mine. I cope by wearing the sleeve during the day and not at night. I must be able to use my right hand. None of this is satisfactory. All I get at the moment is being measured once every 6 months. You get nothing in writing about what the results are and if you ask for it, it is incomprehensible.

    I have tried talking to the nurses, explaining that patients need the information so that we can work together so that we can see what works and what doesn't. I have got nowhere.

  • Hi, I am always told by the nurses the percentage of my swelling so I am able to compare the results between measurements. Maybe just ask for this. Good Luck.

  • Hi Rebec, I have been give a tape measure by my nurse and instructions of how to measure my arm so I now measure it every day to keep an eye on it. If the swelling does increase I can look back to the previous day and see what may have caused the swelling and by doing this it makes me feel a bit more in control.

  • It might make you laugh, but in between measurements, I just try to measure the circumference of my wrists (with my other hand) to see the difference between the two! I live in the hope that one day, they'll be the same!

  • Makes sense to me Rebec! Now me...every morning(or so!) when I wake up, I remove my wedding ring from my left hand, and try it on my right(lymphoedema arm), so far so good! (9 years). Fortunately, my swelling stops just above the wrist, but I am paranoid it will go into my hand! Such is life girl. ;o)). Take care!

  • Hi Spanglefox, i am in a similar position. i've had it for a year now. i've had off the rack gloves and sleeves which seemed to make my hand swell up (though they did help my arm). then i tried the bandaging - very painful, uncomfortable and difficult to do anything. mine is my left hand but although i write with my right hand, i do everything else left handed so it also impacts a lot on my life. i am now trying made to measure class 3 sleeve and gloves. i'm giving it a try - but its not really working so far. i am grateful to be alive - but i am so self conscious of my arm and dont want to wear a sleeve for the rest of my life.

    i have heard of an operation now available on the NHS which uses supermicrosurgery to

    "join together vessels of between 0.2mm and 0.8mm in diameter, using sutures that are thinner than

    a human hair. This surgery requires high magnification, specialised equipment, and specialist technical expertise and training."

    i am seriously considering it!

  • I also heard about this procedure but I think that we should wait and see how many of us sufferers have had it and what the results are and how long after the operation, people feel 'cured'. I read that one is still supposed to wear a sleeve after this operation.

  • i had thought of that too - but then i thought - well i've nothing to lose - i'd happily be a guinea pig :)

  • Thank you ALL so very very much for all the advice, help, tips and most of all - your experiences!! With arm lymphoedema you tend to isolated and not actually KNOW of anyone else who had it. Now that I've had all these replies I KNOW that I'm not alone, and I KNOW that there others out there experiencing exactly the same thing every day of their lives just like me. One of my main problems is lack of communication with others due to another ongoing health issue that I have. Emailing and the internet are my links to the world so in sheer desperation I thought I would make the internet work for me, and help to 'put me in touch' with others in the same position - hence my posting on here. So thankyou everyone for replying - and so quickly too!!! If anyone would like to 'message' me on a regular basis then it'd really help keep me positive and 'in touch'. Spanglefox

  • Hi Spanglefox, I would like to keep in touch with you on a regular basis so maybe we can do it using our email addresses. Mine is: relisse@icloud.com. Today I finally start my treatment for lymphoedema. Just going now! Rebec

  • Hi Spanglefox! I'm right there with you.... I'm an 8 year survivor with lymphedema occurring soon after. Mine is right arm and hand as well and I too have problems with my hand. I am truly blessed to have the most dedicated, open minded and kind therapist that one could possibly have. We have tried numerous things over the years but always come back to wrapping when things get too bad. I have had numerous types of sleeves and gloves. Generally I don't like gloves because they cause the top of my hand to blow and besides that how do you really keep them clean. This is my routine and what works for me most of the time. First, find a good therapist that is updated on manual massage and other techniques. I have custom made sleeves by Gottfried. This is where it is critical to have a well trained therapist. Measurements are taken specific to my arm. Also the band at my wrist is a little wider than on a normal sleeve which we feel allows for better lymph flow. I wear a sleeve all day. I have a gradient pressure machine which does " manual massage " every night. Takes about an hour. Then I either wrap or use what I call an oven mitt which is a sleeve that is, for lack of better term "quilted" it is supposed to work like being wrapped. It is a gauntlet type but I wear a glove under it with a " hot spot" pad on the top of my hand where it tends to blow. Again these things work for me most of the time, but I cannot go more than 2 months without seeing a therapist. Hang in there. I KNOW just how frustrated this gets. Don't know if any of this helps, but thanks for posting. It was helpful for me to "rant" for a while and so good to know there are more of us out there. God bless!!

  • Hi all arm lymphies, me too, left arm and hand. At first I had Mediven combined gauntlet which caused me problems in web of thumb. On appearance of hand swelling I now wear separate Jobst sleeve which is softer fabric than older Mediven (though their fabric has now inproved) I also wear a Sigvaris glove which has quite long fingers and get slight swelling in tip of index finger. I swim, practise and teach yoga and go to a zumba class. My lymph specialist physio suggested wearing old sleeve and glove while swimming to make it more effective and I did that for a while but now find swimming alone is pretty helpful. I keep sleeve and glove on morning till bedtime, wear a plastic or cotton glove over glove for household tasks. I can get away with leaving sleeve off for a special night out once in a while!

  • Hello,

    Wondering if your arm, and hand, is like mine inasmuch that my lymph is very fatty ? This makes it very difficult to treat but I found Kinesio taping helped a little. My swelling is fatty because I have also been diagnosed with Lipoedema.. The LSN has helpful information about that condition too. Good Luck.

  • Hello Aprille, thanks for your reply to my post. I'd no idea that lymph could be 'fatty'. I'm going to ask my Nurse about it when I see her next. Meanwhile I'll search for Lipodedema on the LSN website to see if anything rings true with me. Thanks ever so much for this information Aprille. I'm so grateful for your input. I wish you well with your Lipoedema and hope all goes well for you in the future, also with your Lymphoedema.

    Take care, Spanglefox

  • I too have lymphoedema in my right arm following mastectomy and have had a few problems over the last few years. Have you tried juxtafit, a wrap with a separate hand piece or has bandaging been of any use. Are your compression garments flat knit and made to measure, I find these all helpful. Good luck

  • Hi. Yes I've tried compression sleeve with seperate gloved area and they made the hand worse as the overlapping area encouraged the wrist area to swell up as well as the back of the hand and fingers. I've also tried a Farrow-wrap sleeve but that didn't help either. I tried bandaging last year but my hand came up like a boxing-glove in a matter of hours. Yes my sleeves are made to measure - the manufacturer is Elvarex. Currently I wear an Elvarex all-in-one from underarm to the knuckles on my hand. My arm seems to be stationary and has been for many many months. If I try stronger compression (I'm only using Class 1) my hand suffers terribly once again. There just doesn't seem to be any answer to this hand swelling as soon as any compression strengthens. Thanks for your response. Spanglefox.

  • I'm sorry you are having so much trouble. I'm having a second course of bandage which i do find helpful. I also have class 2 compression. Why do the therPists thinkis the problem or don't theyknow

  • Hi and thanks for your responses. My Nurse doens't know why the hand is always so badly affected by any kind of compression. Considering the lymph fluid is supposed to flow UP the arm and drain away through all the other channels, mine seems to drain downwards I think - ha ha!!

    Thanks for your contact. Much appreciated. Regards, Spanglefox

  • All the best to you Spanglefox...let's us know how you get on. There are soooo many of us with BC related Lymphoedema. I am in my 11th year of remission from the wretched disease and do try and count my blessings.

  • There is a number of highly training Lymphoedema specialists around the country that are trained in the vodder technique and they can do massage to bring the swelling down. They are highly trained in their field and due to the fact that they have to maintain their qualifications every two years are up to date with all that is going in the field.

    They are also able bandage the swelling again which will reduce the swelling and prescribe via your gp the correct support.

    Check out the Mld website

    mlduk.org.uk

    You will have to pay to see these specialist but I always find it worth it

    They have the time to see you discuss anything and everything.

    I know we should be able to get the best care via the nhs but sometimes supplementing it privately helps you as an individual

    Good luck and I hope you find the physical and mental support you need

  • Thanks so much for passing on the link to the mlduk website. I've viewed it and found it a real eye-opener. I wish it were within my financial capabilities to take things further as you suggested. However it isn't and never will be. But its good to know that there ARE solutions out there other than being prescribed a couple of compression sleeves a year and it being left up to me to do my own manual massage (because its not easy and I feel sure its not as beneficial). Thanks for your time. Regards, Spanglefox

  • Structural changes in the tissues in chronic lymphoedema can result in a 'fatty' arm. This should not be confused with lipoedema which is a different condition.

    Hand oedema is considered complicated and may be difficult to control. Working with a therapist to find the best combination of garments and the pressure class of the garments combined with exercise, skin care and simple lymphatic drainage massage is the method of treatment available to us at the moment.

  • Thanks for taking time to reply to my post. My nurse specialist has worked with me for 2 years now. We've explored a number of different combinations of sleeves, seperate gloves, the all-in-on sleeve with gloved section but each and every one of them make my hand swell more when I am wearing them than when the garments are off. I have lymphoedema in my arm from top to wrist as well as the hand. My arm has always remained the same throughout the 2 years neither lessening in size nor increasing. I'm happy its not increasing but disappointed in that it will not lessen no matter what garment we use. Bandaging has been attempted but come the early hours of the morning my hand was up like a boxing-glove. It was very very frightening. Regards, Spanglefox

  • Sorry you have such a difficult time. Have you had the opportunity to try Kinesio tape on the hand? It would be worth trying under your glove if your specialist does lymphoedema taping. The only other thing I can suggest is a sleeve without grip top as that can sometimes compromise the drainage, but you have probably tried this already.

  • Hello again. Yes we've tried the Kinesio taping I'm afraid. Again,no joy. What we've not tried is the Sleeve without a grip around the top. Mine has the silicone band two-thirds of the way around the top, plus I've been given skin-glue to keep the sleeve in place at the top of the arm. You seem VERY knowledgable on this subject so can I ask you this please. I spend 6 maybe 7 hours on a computer keyboard each day/evening - do think thats too much and I'm not resting the arm and hand enough? I do keep the arm rested to the side of me when using the mouse. Its at a 25 - 30deg angle away from my body. Thanks for your time. Spanglefox

  • Hi SpangleFox,

    I've been having problems with my hand too over the last few weeks. I was diagnosed about a year ago, when my whole arm and hand were swollen, but until recently (the air con broke down at work) my hand was a normal size - i even had my rings on! Anyway,

    I just wanted to check - when you say you've tried all combos of compression, have you made sure that the compression on your hand is at least equal to, but if not then stronger than, the compression on your arm? And that it's a glove and not a mitt? Once the lymph is in your hand the only way to get it out is compression or massage, so you don't want less compression in your hand than your arm - it will just make your sleeve act as a tourniquet. And when you say you've tried bandaging, does that mean your arm or your hand? I've been bandaging my hand over the last week or so and it's made a real difference, but again I would never do the arm on its own. I can bandage my hand myself - i taught myself from a video on youtube - do a search and pick the one that's right for you. I can do it in a matter of minutes now. Hope all goes well for you soon.

  • Hi Jake52 thanks for your reply. I wear an all-in-one sleeve & glove (with half fingers) so I do have the graded compression from my fingers right up to the top of my arm. Still the back of the hand remains puffy and gets even more swollen whenever I wear ANY compressoin whether its Class 1 or 2, and whether its the all-in-one, or a sleeve with or without a seperate glove. I'm prescribed the Elvarex sleeves. I've had lymphoedema now for about 2 years. Its no better now than when I was first diagnosed. I always feel that whatever garment I am prescribed that something is amiss in the wrist area, but I'm not a professional....I don't know what. I just have a feeling that they're missing something with all these compression sleeves that they prescribe for us - especially with the swollen hand. Thanks for replying.

  • Have you tried a made-to-measure?

  • Ignore that - I see you've already been asked. The only thing I can really add is that I have MLD at least monthly (self-funded) and I swim three times a week and do SLD as often as I can. When i stop any of those, my arm and hand go back up again. And I try to stay as cool as I can - heat is a killer for me.

  • Seems to me that this lymphoedema is a hard taskmaster and keeps us active and our noses to the grindstone in order to keep it down as much as possible. Trouble is that some weeks time is not as readily available as other weeks, so one week you can work on the lymph problem and its managed ok whilst another week perhaps NOT as much activity and the whole lot balloons up again. A constant battle. Yes, heat too, is a killer for me also. I've never been a person who needed a lot of heat and certainly never any sun!! Nice to see - but stay in the shade!! Thanks.

  • I would like to echo what Jake52 said... I have been self bandaging (triple layer) my hand and half my arm for a few months now and the swelling in my hand has gone down amazingly. I don't know whether the difference is due to not using the 'tourniquet' effect separate glove and sleeve or whether the bandaging is better -but the results are clear to see.

    Unfortunately I had to be taught how to bandage by someone not in the NHS because I had no access to it there...

  • I am still looking for more comfortable, slimline longterm all in one garments (preferably not beige because it looks hideous especially when it picks up the dirt and frays). I can't imagine wearing bulky triple layer bandaging forever ( no matter how good it is!). So if any of you who have similar hand related lymphoedema have any suggestions, I'd be very grateful too!

  • Hi Whisker5, I'm SO SO SORRY I've not replied to you till now........ been between computers and other family issues which weighed heavily on my mind. Anyway I'm here now. Well I do have an all-in-one sleeve and glove combined these days (as opposed to ten months ago when I first posted on this website. I had to change from an all-in-one Jobst (which I found to me made from a more heavily woven material) to an all-in-one made from a lighter woven material but exactly the same strength.....AND....it comes in different colours!!! The make of this newer one is Juzo. I do wish you could be prescribed such a garment - just to TRY it!!! Because its comfier to wear I find that I am able to stick with it much longer each day now. Which of course can only be beneficial. I'm due a new sleeve soon and this time around I ordered a greyish coloured one for a change. The colour range in this Juzo range of all-in-ones is quite good. I also found that shaving the older flesh-coloured sleeves with one of those de-fuzzer gadgets helped them look much fresher. Perhaps you might keep in touch with me ?? Exchange personal email addresses maybe?? Thanks for taking the time to reply to my post. SpangleFox

  • Spanglefox -I am definitely going to investigate the Juzo, thanks!

    I ended up paying privately for a Jobst Elverex cos it was all in one and black so an answer to my prayers (I thought). I couldn't get the damn thing on! I sent it back to the manufacturer and they admitted that it was wrong and sent me a new one which also didn't fit -so I despaired a bit.The material felt really heavy and uncomfortable though, so I don't think it would've been fab anyhow!

    How did you find out about the Juzo range?

  • I am still looking for more comfortable, slimline longterm all in one garments (preferably not beige because it looks hideous especially when it picks up the dirt and frays). I can't imagine wearing bulky triple layer bandaging forever ( no matter how good it is!). So if any of you who have similar hand related lymphoedema have any suggestions, I'd be very grateful too!

  • Hiya - I also have lymphoedema mainly in my right hand and lower arm following SLNB test for cancer.

    I can so relate to what you and others have said regarding the frustrations of trying to get a properly fitting compression garment. My separate glove and sleeve overlapped and caused a big welt to form on my wrist by each afternoon. In my mind that can't be helpful -cause it's like a tourniquet effect but nurses said it fit well! Have asked repeatedly for an all in one sleeve and glove, but have been denied it. Crazy, crazy situation!

  • Hi whisker5, well I can't understand why you are being denied the 'all in one' garment. I too had the separate garments and I too had that swollen chunk of flesh around the wrist area - only an hour or so after donning it !! Since wearing an all-in-one I can confirm that this swelling no longer happens. I also used to be plagued by a puffiness on the back of my hand - this too decreased quite a lot since I got the new garment about three months ago. I don't know if there are any particular criteria we sufferers have to fill in order to get certain garments but its worth asking your Specialist about it. As if lifes not difficult enough with this 'hit and miss' way of doing things. My own nurse is a gem when it comes to trying and trying to get a garment to fit properly (she measures me for every dimension of my arm almost....and yet sometimes when they arrive they STILL don't fit well). She even returned two of my sleeves to the manufacturers together with a very strongly worded letter. I do hope you get what you obviously so desperately need (to rid yourself of that awful 'band of flesh' around your wrist. Its not doing your arm any good - its just the fluid being trapped as I'm sure you know. And if its trapped then there's something NOT working and your arm won't be draining properly because of this. You can tell you health professional about this message if you want as I have first hand experience. If it would help then you can print it and take it to him/her. I don't mind at all. I'll answer any questions. I'd like you to keep in touch as I'd like to know how you get on. Best wishes............. PuzzleQueen

  • Hey Puzzlequeen - how're things?

  • Your story is almost exactly like mine, but just started with a compressioneeve. My hand is swelling more each day. What is your situation since your last post? Have you found anything that works?

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