Just diagnosed :(

Hello all I have just been diagnosed with Lymphedema in my left arm. I found myself a good therapist an she suggested reaching out to find other patients like me. The MLD is going ok...the sleeve they gave me is... well...ugh! What else is there? What do you all do? Diet? Exercise? I heard that you shouldn't do strenuous activity but, I love running, lifting weights all that good stuff...I'm seriously bummed out right now...

14 Replies

  • Hi tishfin it's miserable when you're diagnosed isn't it. You don't say the cause..... mine was lymph node removal under armpit during mastectomy, Just as I thought I was getting over the after effects I was diagnosed. Exercise is a bit trial and error. Wear your sleeve and just see how you get on. Cant see why you shouldn't keep running. Not so sure about weights, but I swim, practice yoga and go to zumba all ok.

  • Swimming is highly recommended and weights, you have to start with 1kg or even less. You also don't want to develop more muscle in one arm more than in the other one.

    The sad thing is this Lymphoedema is a problem for life, unless one is ready to try the more drastic solution of going to a highly skilled surgeon and try and remedy it this way. I read that surgeons are trying even transplantation of lymph nodes!

    Running shouldn't be a problem and keeping fit will keep you in good health in general.

    Good luck!

  • Was diagnosed myself in my right arm three years ago and was gutted.Three years on and I have come to terms with having to wear my sleeve every day. In fact if I am without it for any reason, I miss it and feel "naked"!!!. I wear a black sleeve as the "flesh" toned ones look, as you say, ugh! I tend now to co-ordinate my wardrobe to my sleeve!! Lots of colours but also with black so I can at least look as though my sleeve is a part of my outfit. It's amazing how many comments I have about the black sleeve - some think it's a fashion statement and like it!! I have left my sleeve off on the odd occasion for a couple of hours at night, but only on the odd occasion.

    I also enjoy keeping fit and active and this won't change, though I do not run any more but do an extremely fast walk. I use light weights, and row on a low pull. I find that pilates is brilliant for core strength and the deep breathing helps. I practice a mild lymph massage almost daily to keep the swelling at bay and make sure I use plenty of moisturiser so my arm is soft. I visit my lymph clinic every three months. I know it will worsen over the years, but for now I am remaining positive.

    Good luck :)

  • Sorry you've joined the lymphoedema club. You'll get used to the sleeve, and there are cute ones out there for special occasions as well as covers that go over them. Exercise is HIGHLY recommended because it keeps the lymph moving. Lots of arm lymphoedema sufferers lift weights, it is actually good for the arm. You just have to do it very, very carefully, building up in tiny, and it really is tiny, increments. Always wear your sleeve while exercising. There is a lot of really good information on the web about exercise and lymphoedema. What you really want is to avoid undue/unusual stress to the "bad" arm.

  • I have it in my whole left leg quite badly and I lift weights, I don't run as I don't enjoy it and it does make my leg worse, but your arm shouldn't take any impact on running so you should be good to go there :)

    And when I say I lift weights, I mean almost double my bodyweight on a lot of exercises, so don't be scared, the muscle contraction against your garment really helps the pump to get the fluid moving. There are some websites ,albeit in the states and shipping may cost a bit, that you can get VERY funky arm sleeves from! its always an option if you wanted to buy a few 'nice' ones and wear your normal ones day to day

  • I am definitely going to start up my running again the weights I am a bit nervous...we'll see...thanks :)

  • Hi

    I also have lymphoedema in my left arm and have been told not to lift any heavy weights in that arm including my 2 year old granddaughter who has learnt to climb on grannie's knee. I also have to wear a sleeve to my wrist, fortunately I no longer have to wear the one which covers the hand. The sleeves are a bit ugly but you get used to them and people don't always notice you are wearing them if they are flesh coloured (beige). As for the exercise swimming and running I would imagine are fine, just be careful not to injure your bad arm and always protect it with a sleeve. Hope you get on alright.

  • Being positive, you are able to move forward once you have a diagnosis. I think it is worse not knowing what is wrong with you. In my opinion, one advantage of having lymphoedema is that there are great support bodies out there, the LSN is in the UK.

  • I was diagnosed 8 years ago. I have never got used to the sleeve and have no confidence in any of the treatment (rationed to no existent where I live) including the sleeve. I wish I could be more positive but I cannot.

  • You don't say where you live but a good lymphodema nurse is brilliant. I used to visit her every 2 months and then, every 3 months and now it is every 6 months as my arm has improved. She measures my arm at each visit. This is a combination of Simple lymphatic drainage exercises (given to me by the nurse) and using a sleeve which I now forget that I am wearing. Are you sure that the sleeve is the right size? Please investigate via your GP or at your local hospital to see if you can get any more support. My lymphodema nurse is available in between appointments if I have any problems.

  • Not so sure about the lifting! I was told not to use my arm for any heavy lifting i.e.heavy shopping bag etc. One day soon after I was diagnosed, I forgot and lifted a bag at the supermarket. I then began with cellulitis in my arm which needs antibiotics to cure and it can lead to septicaemia if not caught straight away

  • Everyone is giving you great advice. I have lots of links on my website but I don't want to advertise. Lets just say I have lymphedema and I have a company that sells covers for compression sleeves. They are like ARM Candy.. Hint hint.

  • Hello all,

    Thanks to everyone for writing to me...wow! I honestly felt very alone in all this but, I it is definitely a comfort to know that there are more out there like me than I thought :) I did go and poke around on line...found lots of good info about diet and exercise. It all seems to make sense. Cut back on salt, carbs and caffeine and increase vegies,fruit and drink more water. From what I can see it seems you should wear a compression sleeve when you exercise and do strenuous things. I have to say however, the sleeve just sucks. It feels really gross under my arm pit and I can't wait to take it off most of the time!! I go back for massage in two weeks.

  • You really have to go swimming. I juice a lot green vegetables. Mine is congenital, i was born with it. I do not know if, after for example cancer, you have to be careful with eating some things. But for me drinking every day fresh sellery with flat parsley, beetroot and lemon has helped a lot. The plus is that it gets cellulite marks of, and you loose weight. Combined with swimming, it is really good. People who I did not see a lot said to me: wow you look so different, so healthy! While I just was diagnosed with very severe le !

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