hi elaine-r when i have swelling i have a prickly pins and needles sensation but usually when i wear sleeve swelling goes down dont worry at clinic they will look after you they will show you how to massage with cream a slow but easy exercises which does work i was quite restricted when i went to clinic now i can do most things and iam getting used to the sleeeve .but everybody recoverery is different it may take abit longer than me as i was told i hadnt got it servere. good luck missmessyx i forgot i cream my arm every night with e45 moisturising cream i find it helps
I have to go lymphodema clinic on the 11th nov not sure what it is all i no you get swelling on the arm im having problems moving my arm but thats due to strings (cords) i had surgery 5 weeks ago and still struggling seeing physcio next week what do i look for in lymphodema apart from sweeling any advice
First off thank you for all the replies! I have been very busy over the last month or so so this project got put on hold, but im back on it again.
I will have a read through all of the posts and get back with answers to any of the questions and an update on things.
hi I developed lymphodema during my chemo - 4 months after my breast surgery 2 1/2 years ago. Interestingly it has reduced gradually. Your best source of information is the Lymphodema support network. In terms of clothing - I just wear normal clothes - obviously need to check the width of the sleeve but don't have huge problems. Also worth telling people that despite what a lot of the forums say when it is really hot (particularly if I am abroad in hot country) I don't wear my sleeve at all and after a couple of days my arm feels normal! I just put it back on when I get home and it doesn't seem to be an issue. Best sleeve I have found is produced by Sigvaris and is available on prescription. Also presumably you refer people to your local lymphodema service - every health authority has to have one.
finally managed to get a well fitting bra. i got one measured from m/s but it was so uncomfortable and difficult to get my prothesis in,i went to my local hospital to get advice from a bcn, she measured me up and i got a new prothesis that is designed with lymphoedema in mind,it is being tried out, she just asked for some feedback in a couple of months,to see if it has made any differance.
I wonder what happened to Peachie. She asked for help and never came back.
Tell us more about the contact prosthesis please. Does it not drag on your skin?
i developed lymphoedema after a left sided mastectomy and lymph gland removal, in 2004, i couln't manage any post op execises as i had a frozen shoulder and it took a considerable amount of physio to get things moving. to combat the lymphoedema i have to moisturise and self drain my arm to keep it supple.loose clothing and protecting it in summer from sunburn and insect bites. i didn't want to wear a sleeve as i felt it to restricting,but i know now when to rest my arm etc if i've done too much. having lymphoedema has i think impacted on me more than having a mastectomy.hope this is helpful. plus i do get to see a lymphoedema nurse twice a year to keep checks on it.
I have had lymphoedema in my right arm for nearly two years. I also wear a larger size to accommodate the arm. Coats are a problem in the winter to accommodate the arm and thicker clothing worn in the winter. Capes and waterfall cardigans I find are good. Also anything made from a jersey material which will stretch.
Bras are very difficult for those of us who are larger than average. I have recently started wearing the Amoena Contact prothesis - a stick on one. I find this absolutely brilliant and cannot recommend it enough. Particularly if you have lymphoedema. I wear a Contact Light which is I think 30% lighter. With this prothesis I am able to wear ordinary bras as long as they are higher and hardly know I am wearing it.
Tunic tops with baggy sleeves, blouses with butterfly sleeves etc are also good.
i usually buy tops in a bigger size ! i have lymphodemia in my left arm and some days i look like the elephant lady ! maybe something should be done re colours of the sleeves .they are hidious to say the least ! ive taken to decorating mine with fabric paints ,to match my outfit . hope you can get info from the ladies ,as i feel we are the forgotton ones on here .x
amonea bras with wider straps to offer support but something is defo needed for larger breasted women, ive found being large a nightmare to find bras. on plus side bat wing tops are really in at the moment and are wide sleeved and floating on the arms causing no restriction. Good luck its a good job you are doing x
hi peachie i have had problems finding a jacket for the winter because of swelling but in next they had lovely poncho and bonmache had modern capes which are in fashion for the winter having had a masectomy, if my right side and arm hurt because of lymphoedema i can go out without a bra and the cape will hide it plus by the end of the day it will still fit me.buying loose fitting clothes is best with wide arms. missmessy
I have lymphoedema in my right arm. I bought a bra from the Nicola Jane website which has slightly padded wider straps and is recommended for lymphoedema suffers - it is much more comfortable to wear than anything that I have previously bought from M&S.
Good luck with your work and I hope you are successful in increasing awareness of lymphoedema.
I have mild lympho in my affected breast after WLE and radiotherapy 3 years ago. I wear a partial prosthesis on my good breast to bring it up to the same size.
I find that the t-shirt style bras are best for me. They fit well under the arm which, as Emmbee, says is where fluid can collect.
After my radiotherapy I learned to swim but getting a nice swimsuit which is comfortable and supports sufficiently to even up my breasts (one much high than the other), and cover the fact that I have one inverted nipple, is a nightmare. Maybe this is an area you could address too. I understand that swimming is very beneficial for lympho.
I think a leaflet is a great idea and wish you every success in your research.
I agree with what emmbee said. I've had lymphoedema in right arm for 3 years now. I tend to wear short sleeves all the time, and in colder weather a cardy or fleece.
Sorry unable to add anything more to emmbee's post.
Sorry you have not had any replies so I will shoot this back to the top for you.
The website has been playing up for the past few days and I think that some posts have been lost.
I have lymphoedema in my arm and frankly, no one seems to think that I and others like me need special clothing. The first thing I do when I go shopping for clothes is to try the sleeve. I am very reluctant to buy long sleeved garments as depending on the day and the state of my arm, sometimes they fit and sometimes they don't. Now I have found that wearing short sleeves is best, with a cardigan or fleece if needed. The arms on a fleece are normally wide enough to cope with a swollen arm but finding a modern type cardigan is more difficult. Long sleeved jumpers are difficult to find as if the sleeves fit they are normally too baggy around the wrist. Last Winter I wore short sleeved polo neck tops and managed to find a couple of v necked pullovers to go over the top.
Evening wear is a nightmare. Again I have to wear short sleeves with a cover up if it is chilly. A pashmina, stole or shrug solves the problem.
Bra's. They can be difficult to fit as the best ones are on line but wiring is a definite no no. Lightly padded ones are best as they cover lots of problems such as one nipple showing, or one droopy boob and a falsie. Lymph does tend to collect under the arm so finding a bra which fits higher up, without choking one of course, is good as the movement of the bra on one's skin encourages the lymph to move along.
I can't think of anything else to tell you at the moment but maybe someone else will have other ideas.
Good luck with your leaflet.
I work as a physio with patients who develop lymphoedema secondary to breast cancer.
I am trying to compile an advice leaflet for patients that have been newly diagnosed with lymphoedema. One section i am struggling to find information on is the advice on clothing.
I am also making a leaflet for post mastectomy patients, and i have found several companies and catalogues for this. However there does not seem to be as much for lyphoedema, so i feel the best people to ask would be those living with the condition.
Does anyone has any hits or tips? anythink would be great, so hopefully i can pass them on to my patients