New with Lymphedema?

  • Know that you are not alone with this condition. There are many of us out here. Allow yourself to grieve, and accept that grieving can take a long time. Know that there are better days ahead. You will learn how to manage the condition.

  • Consider cutting down on, or eleminating, salt from your diet.
  • Elevate your leg at night (if leg lymphedema). I've got a couple of old phonebooks under the rear end of my bed and some towels under the matress.
  • Do not take baths in water above 40°C (104°F) – some even say 34 (93°F). This is very important as toxic waste is released and will run around making a mess. I learnt the hard way and fainted (see this post). Hot showers are OK for me though.
  • Learn how to do MLD (Manual Lymphatic Drainage) on yourself.
  • Think twice before having any massage that is not proper MLD. It may do more dammage than good. If you do, perhaps best to let the affected limb be left untouched.
  • When showering I keep the leg out of the water most of the time as I feel the running water acts just like MLD but the water will lead the fluid downwards which you don't want. When about finished I put the foot up on the wall as high as I can and rinse soap off with the showerhead from the toes towards the groin.
  • You can get a cover to use in the shower when wrapped. It is made for those with a cast on, and you can get it out of the pharmacy or on-line. Look for castprotector.
  • Put on a fresh, clean stocking every morning for best compression.
  • You can wash the stocking in the washingmachine on 40°C (or cold water if that's what you usually do). It is OK to spin it, but give it a little stretch lengthwise afterwards. Always use only mild, liquid detergent without bleech, artificial colour etc. Make sure to rinse it properly as left over soap can cause irritation and lead to infection. When handwashing I use showergel (a little goes a long way), soak it for 10-20 minutes and having rinsed I put the stocking inside a towel, give it a squeeze and hang it overnight.
  • Consider jumping on a mini trampoline. I found that it made the tissue softer and the swelling went down a tiny bit.
  • Take precautions when going on long haul flights or other occations when sitting down for a long time. Check out my lymphedema in-flight exercises and tips.
  • Consider getting a compression pump. The LymphaPress has a good rep.
  • Consider getting a nightgarment. I use a Jovipak with a FarrowWrap over.
  • If wearing a custom made stocking you can have little pads sewn into it in strategic places for better drainage and shaping.
  • Get an Easy-Slide to help put on the stocking. They last about 18 months. You can get it on-line.
  • Never put lotion on before putting on the stocking. You want to keep the stocking as clean as possible. Use lotion before bedtime, and do it often to strengthen the skin and thus avoid infection. Use a greasy lotion without perfume or too many additives etc. I find that adding a tablespoon of good, coldpressed oil to my homemade juice keeps my skin moisturized from within, see this post.
  • Much has been said and written about diet and weight etc. I won't, except that a healthy diet strengthens the imune system which makes us less prone to infections. Lymphers are prone to infections on the affected limbs and trust me when I say that infection is indeed very nasty, see this post. Also, someone once said to me that the more weight you carry, the more tissue to have Lymphedema in.
You are more than welcome to comment if you have any tips.

    20 comments:

    1. Thank you so much for sharing your blog. You are taking a positive approach that is key to managing this devilish condition.

      My mother and grandmother had lymphedema, so I saw them suffer. My lymphedema started when I was 13 or 14 years old. I am now 60 years old and just obtaining meaningful medical assistance. I live in California, so I am fortunate that Dr. Stanley Rockson at Stanford University is nearby. Getting an appointment with him takes months however; his calendar is booked solid.
      Anyway, THANK YOU again for sharing your experiences and thoughts. Very helpful.

      Kind regards,
      Pat Egan

      ReplyDelete
    2. Dear Pat,
      thank you for your kind words and for reading my blog.
      I was sad to read that both your mother and grandmother had Lymphedema (and of course yourself), it must have been a stressfactor for you wondering if you would get it too. It is many years you have had it now. I sometimes wonder if it gets easier over time.
      Thanks again for your comment, these comments are what keeps me blogging.
      Warm regards.

      ReplyDelete
    3. Great blog wesbite, really good work with lots of advice.

      I've also just set up my own website to try and create a community as well, you can find it at www.livingwithlymphoedema.com

      I'm at aiming it others who are less positive than you to show what you can do. I've had primary Lymphoedema for five and after tonnes of MLD treatment I'm now travelling south east asia, much to the amusement of the locals who enjoy poking and proding my leg. There is a blog of my travels on the website.

      Keep up the good work!!

      ReplyDelete
    4. Hey Keith,
      thank you for your kind words about my blog, and thank you for reading :-)
      Your blog looks really good, I'm looking forward to follow it. Also looking forward to read your travelreports thoroughly as I too love to travel. I am really glad you travel despite of Lymphedema. We must not let it stop us for doing what we dream of. SE Asia is wonderful - I hope you are planning to visit Laos, my favourite ;-) Luang Prabang is magic.
      Good luck, and happy travels :-)
      Liz

      ReplyDelete
    5. Hi,

      My Lymphedema started after having surgery for vaginal cancer and had to have lymph nodes removed in the groin area bilaterally. My right leg is bigger than the left but it is considered “Mild Lymphedema”. I have two questions if anyone has suggestions. Is the Lounge Doctor Leg pillow a good investment? Do I need it should I invest in this? I have been instructed “put your legs up”, “don’t put your legs up” so I am totally confused. Also has anyone used “acupuncture” for Lymphedema?

      Thanks for your help. Cathy

      ReplyDelete
    6. Hi Cathy, thanks for writing :-)
      About putting your leg up I would say to go for what is good for you. I doesn't work for me when I have my stocking on but when I don't I need to raise my leg.
      I tried acupuncture 14 times when Lymphedema was all new and nothing what so ever happened. However, I have met people with arm-lymphedema where it helped a lot. If you try, don't have the needles in the affected leg.
      Take care,
      Liz

      ReplyDelete
    7. Hi, LymphedemaGirl and thanks for your blog. It caught my eye because we're of a similar age, and it's good to connect with other people who are going through this.

      I've developed lymphedema on my right leg (it's still in an early stage) and currently doctors are trying to figure out whether it's primary (which is the most likely scenario, given my family history) or secondary. They're running all sorts of tests. I live in Colombia, South America, and it has been a little frustrating to see that doctors don't seem to know too much about it. I have good insurance, so I'm seeing supposedly good doctors, but I'm not too happy with what they're saying because it seems to conflict with things I read on the web. So I try to be patient and do whatever I can, such as exercising, raising my leg, and wearing compression stockings. They haven't yet prescribed a massage, and I'm hoping they do soon!

      Anyway, I wanted to introduce myself. I'll read through your blog and pay attention to all the great information you have compiled.
      All the best,
      Maria

      ReplyDelete
      Replies
      1. Hello Maria, thank you so much for writing and introducing yourself :-)
        It is indeed frustrating that many doctors have no clue about Lymphedema. I think the ignorance is the same all over the world, sadly. However, it is so good to hear that you have good insurance and good doctors, I hope they will soon order MLD for you. You are doing all the right things!
        Thanks for reading and contributing, I hope will comment again :-)
        All the best!

        Delete
    8. Hey lymphedemaGirl,

      I was doing some research about how to manage my lymphedema when i came across your site. Its reassuring to know that im not the only one to have this condition.
      I'm a 25 year old man with mild primary lymphedema of the lower legs. It started when i was about 13 and developed with the onset on puberty. Like you ive had to manage my condition with compression garments but i never was introduced to mdl or a mention of a lymph compression pump.
      Anyway, just though ill introduce myself. I find your site inspiring and informative :)

      Dan, UK

      ReplyDelete
      Replies
      1. Hi Dan, thanks for writing, sorry it took me so long to reply. One can feel like one is the only person in the world with this strange condition, but there are lots of us out there. We hide :-)
        Even though you never had MLD it is something that you got compression stocking, they are the most inportant, I feel. Thank you for your kind words and for reading my blog :-)
        Liz

        Delete
    9. Hi
      Thank you so much for your blog. It puts at ease a little knowing that there are others like me out there.
      Saw your blog while I was doing some research on microsurgery in South Africa.
      I was diagnosed in 2009 at the age of 17 after my feet just started swelling without cause, I am now 21 and still finding it hard to live with it.
      Reading your posts has helped a lot coz my doc just told me to get tailor made stockings, no advice or tips on living with lymphedema was dished out.
      My biggest nightmare used to be weight gain (like every normal girl) but now shopping for shoes has become the bane of my existence!
      You inspire me. =)

      ReplyDelete
      Replies
      1. I understasnd what you are going through. I was dignosed when I was as 16-17ish. I am 24 now and in college. I have small anxiety attackes when it came to shoe shooping. I also stray away from skirts and short in public.

        Delete
      2. Hi Tee, thank you so much for your comment and for saying that I inspire you! You are so right about the ease of knowing one is not alone, I feel like that too interacting with lymphers around the world has meant the world to me.
        Doctors are so ignorant about Lymphedema, that is why is started this blog, to help myself and to share the knowlegde I got with other Lymphedema patients out there.
        Yes, shoeshopping is indeed a nightmare! I mostly buy sneakers and trainers now and I get two pairs each time - one size for each foot. When putting my odd-sizes pairs up on eBay I had a look around and there are others who sell odd-sized pairs too, perhaps it is worth having a look.
        Warm regards
        Liz

        Delete
      3. Hi Anonymous, thanks for writing. It means a lot that there are people out there who understands. One can feel so alone and akward. What I do about shoes is to get them in two different sizes when I buy new shoes. It costs to buy double so I go for the cheaper styles. I've been thinking about trying to wear a dress this summer that is not floor long and see how I go. I think it would be OK for some occations and some groups of people, but not all.
        Warm regards
        Liz

        Delete
      4. Hi everyone!
        I too have been dealing with lymphedema since I was 34 years old after my son was born because I had a caesarean section and the condition has been with me ever since! I also shy away from wearing skirts and dresses but last year I got a maxi-dress and skirt! Oddly enough the lymphedema stops at my ankle and I do go for MLD and wear both a night garment and a compression stocking during the day. I also found that wide-leg cropped pants work well too! Good to see that many other people are dealing with this condition. Thanks LymphedemaGirl!
        Regards
        Annie

        Delete
    10. Thank you so much for this blog. I guess mine started when I was 15. That's when I first noticed my left foot swelled. I ignored it, and figured I had somehow injured it. I went about life. I'm 26 now, married but with no kids yet since I'm still finishing school. Two months ago, I stood up and my left leg felt funny. Not asleep, but different. I took of my pants and saw that it was swollen. After an ultra sound and a scan my doctor said it was lymphadema. I went home and ignored what he said for awhile. Then I googled it. Then I cried and cried. Right now, it's gotten better and you can't even tell my leg is swollen, but I can feel it. My pants are tighter on that leg, my leg is heavier, a little stiff, a little achey. I'm planning on going to see my doctor and finding out everything I can. But I want to wait after the holidays. I want to pretend it's not there just for a little longer. Your blog has helped me though because there really isn't a lot about it. And for a little while I did feel alone. Sometimes I think my doctor made a mistake but my leg tells me it's real. It doesn't feel right, and it's constant, and what's really hard is when I realize my left leg is never going to feel normal again. And it's scary because this is my leg. This is how I get up, how I walk, run, work. And everything tells me it just gets worse and worse. But then I see this blog and I read everyone's comments and I see that it's not the end of the world, and that maybe this is something that will make me stronger, something I can embrace. It's not ideal, but it's not the worse, right? I think I can do this. So, thank you everyone. For giving me the light at the end and making me feel not so alone.

      ReplyDelete
    11. Sara T. Tampa, Florida28 July 2016 at 13:56

      Having woken again today with swelling in my legs and arm I went to do some research. I read through many sites and was excited to see that there have been surgical procedures available which could help so many. I wonder if they are useful long term without causing other health problems. Apparently in Paris there have been thousands and thousands of these procedures. That is awesome. I would like to see the case studies. I was diagnosed with erythema Nodosum at age 15 and was unable to walk for months. Both of my legs were the same size thigh to my toes. It was the most painful thing. The condition has been lifelong. But only with an occasional flare up. I haven't had one in a few years. Amen! So a few years ago I began seeing swelling in my feet and lower legs. I went to Dr. Kerr in Tampa and he performed a few vascular tests and ultimately closed the greater saphanous (spelling?) Vein in my right leg. There was no improvement in either leg. That caused stress on my lymphatic system and now additionally my right hand is swollen. I feel like a disabled persons and that I am not so attractive. I actually broke up with my best friend because she laughed one day and said "look at her feet". I am generally quite fine and have gotten used to this condition. I desperately miss high high heels and seeing my tiny feet. They were pretty cute. And can I just say that all of the doctors poking, prodding, and people with all of their questions. Why is that hand so swollen?! OH MY GOSH! Generally when I get a mani pedi. Dude it's not that big of a deal! Haha. Trying to explain lymphadema to someone that does not speak English primarily is so funny. Well it's like this... haha. This world is a funny thing. I hope the best for everybody who is dealing with this terrible epidemic.

      Thank you for this website and trying to soothe folks dealing and to all in need of support and occasional relief via words and laughter. It will be ok. And if not, smile and get through it anyway. Wine helps! With mood not swelling. This is not professional medical advice. Haha

      ReplyDelete
      Replies
      1. SARA,

        I FIRST WANT TO EXPLAIN WHY I USE THE CAP LOCK, I HAVE AN EYE DISEASE CALLED FUCH'S IT IS ROBBING ME OF MY SIGHT. I AM NOT YELLING. I AM DEALING WITH SO MANY HEALTH PROBLEMS, AS I AGE SOMETHING NEW IS THROWN AT ME. I HAVE BEEN DIAGNOSED WITH ASTHMA, FIBROMYALGIA, 2 AUTOIMMUNE DISEASES MIXED CONNECTIVE TISSUE DISEASE,PTSD,AND MAJOR DEPRESSION, IBS, AND GERD TO NAME A FEW. I WOULD LIKE TO KNOW DOES LYMPHEDEMA THE AMOUNT OF SLEEP YOU NEED? WHY AM I ALWAYS SO TIRED? I AM 59 YEARS OLD.

        Delete
    12. RIGHT NOW I AM FULL OF QUESTIONS, WERE DO YOU FIND THESE TYPES OF CLOTHING? DO THE COMPRESSION STOCKING GET EASIER THE LONGER YOU WEAR THEM, I HAVE FIBROMYALGIA MY SKIN IS VERY PAINFUL WHEN TOUCH. I ONLY LASTED 10 MIN. AND HAD TO TAKE THEM OFF THE PAIN WAS JUST THROW THE WINDOW, SO WHAT CAN I DO?

      ReplyDelete
    13. I am new to this site, so am replying to some older comments, but just wanted to say, I find that, at night if I wear the Juxtafit velco wrap OVER my stocking, my leg is better in the morning. Then I am able to just wear the stocking (30-40 compression) during the day. If I am needing to be on my feet for a bit, and I realize it ahead of time, I put the juxta fit on OVER my stocking and it helps. Have to be careful to not tighten the juxta fit too much or you'll get discomfort and have to make adjustments or take it off. Has anyone reading this found that adding essential oils to the Epsom salt baths helps? I had a nurse practitioner suggest this, but not sure what the correct dilution of the oils would be or if hydrosols are a better option. There are a few oils that claim to support lymphatic drainage system (lemon, grapefruit). I'm willing to try anything! And I'm curious....how does one do MLD on themselves when they can't reach the full length of their leg without contortions. I do have MLD once a week with an excellent LDT therapist. But daily would certainly be better if it was practical and affordable.

      ReplyDelete