Newbie

Hello, thank you for adding me to this group. I was diagnosed 2 weeks ago by my gp as having Lymphedema. I had never heard of it prior to this. She refered me to Lymphedema clinic but there's a 5 month wait to be seen. I already feel like a monster with this huge growth on my leg and just wondered if any of you have any tips on what I could be doing, whilst waiting for my appointment, to ease my discomfort and help it not get any worse. Thanks in advance :)

20 Replies

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  • Hi, sadly this is often the case as funding is poor in many areas. If you are able to go the private route initially then I would recommend that you find a private MLD therapist who will be able to assess you and get you into compression. Many garments are available on the NHS and therapists are experienced in the process of dealing with your GP to get the subscription fulfilled. If you visit the BLS website you will be able to search for a therapist in your area thebls.com. It doesn't mean that you won't also pursue the NHS route too. Good luck. NNE

  • Thank you so much, we'd wondered about the private route so will definately look into it :)

  • I suggest you contact the Lymphoedema Support Network. They have lots of information on their website and you can also telephone them. lymphoedema.org.

  • Another great source of information is mlduk.org.uk and there is a list of qualified therapists on there too. Appropriate qualifications, insurance, etc are regularly checked to ensure the highest quality provision of treatment.

    Plus, of course, the Lymphoedema Support Network lymphoedema.org who have loads of information.

    Good luck.

  • Lol. Great minds think alike!

  • Using a rebounder to bounce on has been by far the best exercise to keep my leg in shape. To be fair it works every cell in your body. Google it's benefits, I'm sure you'll be amazed. I bought my rebounder from Amazon for about £40. I only do about 10min a day, but that is enough to show result.

    Also make sure to moisturise your effected limb with a none perfumed lotion like Aveeno to keep good skin health.

    And drink a lot of filtered water to help your lymph fluids moving along easier. Avoiding dairy might also be beneficial for you.

    Hope you find this helpful :-)

  • I just wanted to follow up about the issue of filtered water and of excluding dairy. As a registered dietitian, I am very concerned that people receive evidence based advice. I am unaware of any trials that recommend either drinking filtered water (as opposed to good old fashioned tap water) or eliminating dairy from one's diet as a way to manage lymphoedema. In fact, I have just messaged The Lymphoedema Support Network to see if they know of any evidence about cutting out dairy in lymphoedema management.

    Weight gain is often an issue that many people with lymphoedema struggle with, and in this case drinking plenty of water (rather than other sugary/fatty drinks) and eating low fat dairy produce is a good way of keeping energy intake low but nutrient intake high. Cutting out calcium rich foods is a recipe for increasing the risk of developing osteoporosis, which I have no doubt would really impact lymphoedema if one was to have a fracture/break in an affected part of the body.

    But if people are really keen to cut out dairy I would encourage them to keep a symptom diary as they are doing it to see if it does make any difference to the swelling. And also to ensure that they consume other calcium enriched products (e.g. non organic soya products - adding calcium makes such products non-organic). For more information, seek the support of your lymphoedema nurses and/or an HCPC registered dietitian.

  • Hi serafia2 i just read your reply to newbie and was interested in your response.

    I have right leg and grion swelling i have gained a little weight as im sooo exhausted

    when i get in from work i cycle for 40 mins a day this def helps but want to increase

    my excercise when i can.I have a urben rebounder i purchased a week before i was

    diagnosed with cancer.After my op when i felt better i asked my specia;ist if i could

    use it as i was looking forward to it she said it would create too much fluid for me to cope with.This was before i recieved my compression tights but now i have them and wear

    them daily im tempted to try. I must admit im a bit scared !!!! Can i ask do you go on

    yours in the morning or evening?Do you eliviate your leg afterwards?Do you massage

    afterwards? Sorry to interagate you !!!! x

  • Hi AlisonLouise!

    I also have right leg and groin swelling.

    I normally get on the rebounder in the middle of the day. I work from home, and like to use it as a good excuse for a break ;-)

    Only for 10 min or so, depending on how I feel and how much time I've got. But the first time I used it I only stayed on for a couple of minutes.

    There is quite a lot of information regarding the benefits of rebounding on the Internet, YouTube etc. I find the research that NASA have done on it very interesting. But remember, no one knows your body better than you and take it slowly.

    I can only speak from my own experience, as I did in my response to "Newbie", and for me it has been without a doubt the best excercise for my leg. The impact when you land on the rebounder helps to give the lymph fluid a push. And the added bonus is the whole body get a great workout too. I can't recommend it enough.

    I normally try to massage a morning and evenings, but I haven't done it in conjunction with rebounding. It sounds like a good idea though.

    However, maybe your specialist thought it was to soon after your op?

    Feel free to interagate anytime ;-)

  • Thankyou for replying im def going to give it a go ill start slow. Ive just been

    reading the research it sounds very benificial to us lymphies my rebounder

    has been under my bed fir 13 months it will be glad to see the light of day!!x

  • Have fun! And I hope you find it as beneficial as I do :-)

  • Thanks ill keep it posted x

  • If you don't mind being seen in a swimming pool, then I would recommend going for as vigorous a swim as you can master. It helped reduce the lymohoedema in my arm. But I was suggested to mosturise the limb before going into the pool.

  • Hi, welcome to the site! as you can see it is a fab source of advice. I have also found swimming hugely helpful and generally no-one notices what your limbs are like once you are in the water. I moisturise my arm before and after swimming then get dressed in a weird order so that the moisturiser has 'soaked in' a bit before I try to get my armsleeve on!

  • For me, raising my legs is great, and taking care of the skin on your legs too. I use Doublebase or Aqueous cream to keep the skin really moist. I have to be careful not to knock my legs, even a carrier bag can do some damage. I recently had a mozzie bite on my leg and that turned into cellulitis....another thing we lymphomites suffer with at times!! Good luck!! XX

  • Hi, welcome to lymphies club! I have been a lymphie for 7 years now and proud to be special! The best advice from my part would be, doing cardio and swimming . The more I observe this condition, the more I am convinced there is a connection with your heart. Strangely enough when you do some exercises , your heart pumps more blood which increases as well lymph drainage. Swimming releases the swelling so much which makes you forget about it for a couple of hours.

  • Hi and welcome i have my swelling in my leg and grion i find cycling really helps working the

    muscles in your legs helps pumping the fluid away i just do 40 mins a day at the moment

    give it a try x

  • Hi newbie its tough isnt it such a long time to wait youve been given great advice just want to add

    whenever you can when you sit keep your legs elivated and be sure to keep the backs of your knees

    supported whilst sitting.Also try when your in bed fold up a blanket or use a pillow under your feet this should help drain the fluid youve built up during the day.Good luck keep us posted x

  • Hi there, I was interested in your recommendation to "keep the backs of your knees supported whilst sitting." I get pain in the backs of both knees but particularly the right one. I have Lymphoedema in both legs from ankle to groin as a side effect of a prescribed drug.

    Is there a particular medical reason for the pain or supporting the knees that you have been told about?

    Thank you

  • Hi yes i also get some pain behind my knees my lymphie nurse just said whenever

    i sit to keep legs up and support behind the knees as it will be more comfy and it will

    take the strain off them rather than just putting your feet on a footstool it can be

    painful if theres nothing behind them.Ive had a painful right knee for a few years before

    i had cancer so not sure if having lymphedema contributes to the pain or not.It comes

    and goes. Sorry dont feel ive been much help x

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