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Joachim Zuther, Lymphedema Specialist. Read more

Do’s and Don’ts for Lymphedema of the Leg

 

Certain activities may trigger the onset of lymphedema, or may exacerbate the symptoms of existing lymphedema. Individuals affected by lymphedema and those at risk for developing it (everyone who has undergone lymph node excision and/or radiation treatments) should observe the following precautions. The “Do’s” and “Don’ts” below are based on decades of experience and knowledge of clinical experts in the field of lymphedema management.

Skin Care

  • Keep your skin meticulously clean and check frequently for any cracks, fungal infections or rashes
  • Moisturize your skin daily, especially after taking a shower or bath. Use appropriate ointments or lotions
  • Dry your skin thoroughly with a soft towel after taking a shower or bath; do not scrub
  • If you undergo radiation therapy apply the ointments recommended by your physician to any radiation redness on your skin and avoid direct exposure to sunlight
  • Avoid cosmetics that irritate the skin

Clothing – Jewelry – Compression Stocking

  • Avoid clothing that is too tight, such as underwear, socks or stockings that restrict
  • Do not wear tight jewelry and avoid elastic bands around your ankle
  • Wear your compression stocking or pantyhose all day, and if necessary apply your bandages at night. Use rubber gloves when you put on your compression garment. See your therapist at least every six months (or sooner) to check the condition of the garment.

Avoid any Injuries to the Skin

  • Shaving: use an electric razor to remove hair from the leg or abdominal area; do not use razor blades
  • Nail care: you should keep your toenails short but be careful cutting your toenails, do not cut the cuticles
  • Pets: be careful playing with your pets (scratches)
  • Mosquito bites: wear insect repellants, avoid mosquito infested areas
  • Injections: do not allow injections in the swollen leg (or the leg at risk), in the buttocks on the affected side, or the abdominal area. Do not allow blood to be drawn from the affected leg, or the leg at risk
  • To take care of minor injuries, always carry an alcohol swab, local antibiotic and a bandaid with you
  • Do not walk barefoot and wear solid shoes to avoid ankle injuries
  • No piercing or tattoos on the leg or the abdominal area

Avoid Heat

  • Avoid hot showers
  • Avoid hot packs and/or ice packs on your leg, or the leg at risk
  • Avoid saunas, hot tubs and whirlpools. Do not sit too close to a fire place
  • Avoid traditional massage on the leg and the lumbar area. Note: Manual lymph drainage is not considered to be a form of massage
  • Avoid sunburn – while in the sun, use sunscreen, cover the leg with appropriate clothing or a dry towel

Exercises

  • Discuss proper exercises and activities with your therapist
  • Avoid movements that overstrain. Should you experience discomfort in your leg, reduce the exercise activity and elevate your leg
  • Elevate your leg as often as possible

Nutrition

  • Obesity may have a negative effect on your swelling; maintain your ideal body weight
  • There is no special diet for lymphedema; keep your diet well balanced. Most nutritionists recommend a low-salt and low-fat diet, high in fiber
  • Eating too little protein in the hope to have a positive effect on lymphedema (high-protein edema) is not recommended and may cause serious health problems. Reducing the protein intake will not reduce the protein component in lymphedema

Travel

  • Avoid mosquito-infested regions
  • Wear an additional bandage or stocking on top of your compression garment when traveling by car, train or air. Incorporate frequent stops, or get up from your seat frequently, elevate your leg(s) as often as possible

See your Doctor if you:

  • Have any signs of an infection, such as fever, chills, red and hot skin
  • Notice any itching, rash, fungal infections, or any other unusual changes on the skin
  • Experience pain, or an increase in swelling in your toes, foot, leg or lower body quadrant

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72 comments to Do’s and Don’ts for Lymphedema of the Leg

  • Suzie

    I was diagnosed with Lymphedema 2 years ago and told to never take a diuretic. Now I have Meniere’s Disease and
    the Dr. wants to put me on them.
    Is it safe. He did not know about Lymphedema and diuretics.
    Thanks.

    • Doreen Von Essen

      My doctor told me to take Lipoflavinoids sold over counter for Miniers . Worked great had to take highest dose for several weeks to see improvment BTW I started with Mineieres when I was 20 yrs old . I wonder if others have this also?

  • Dr. R

    Much of what you list here is reasonable. However, some of it also has never been substantiated by reasonable research and is hearsay. I recommended when making statements about lymphedema treatments and recommendations we stick to what is substantiated by good scientific research. Good patient care does not require unreasonably restricting our patients’ lives and/or unnecessarily increasing their fears.

  • Jane Kepics PT DPT CLT- LANA

    Patients with Primary or Secondary Lymphedema are told that taking diuretics to treat Lymphedema will not really help because the problem is within the lymphatic system . Diuretics may be beneficial for patients whose swelling is due to a vein issue not a lymphatic one. So the idea of ” never take a diuretic” is not a precaution that something terrible will happen if you take these drugs, but rather that diuretics are not indicated in swelling that is due to poorly functioning lymphatics. So you should be able to take the diuretics for your Meniere’s without a problem .

  • Pam Waldorf

    In your comments you mention not to allow shots into the affected leg. I have a major problem concerning that, I need knee replacement surgery but in order to keep going until the surgery can be scheduled I need to have shots of Supartz in my knees to simply be able to function. The shots lasted for close to a year, Can you please tell me why we should not have the shots into our knees and also comment on knee operation with legs that suffer from RLS and Vericose veins (had an EVLT- this happened before I knew about my LE – and severe LE – my doc wants me to have lap band surgery for weight loss so that I can have the knee replacement surgery – please address this also. Thank you

    • Joachim Zuther

      The reason why injections into a lymphedematous extremity should be avoided is because there is a chance that the swelling could get worse. However, in many cases, especially if the lymphedema is well managed, the positive effects of an injection overwrite the possible negative effects.

  • Andrea Carlucci

    I am 38 and have primary lymphedema in my left leg. I was diagnosed at 18 when it made its appearance. I can tell you that I have proven the whole “avoid strenuous exercise ” wrong. I am a personal trainer and marathon runner. I weight train 6 days a week and run 30-35 miles a week. I can tell you that all the strenuous activity has only HELPED my lymphedema. It has increased my circulation and made it stronger. The more I work out, the better the lymphedema has gotten. Some days it’s barely noticeable. I do wear a compression (up to the knee, but sometimes just an ankle one). I elevate my legs at night but that is the extent of how I care for it. Other than that I completely live a normal life with it. I never dwell on it enough to hold me back.

  • David

    I have had congenital lymph edema for fifty years. Three years ago
    I lost 140 pounds to get my weight to about 170. I am 6′ 1″ tall. Since the
    Weight loss my capacity to resort lymph fluid appears to have expanded
    And I am able to wear off the shelf pants for the first time in years. I havel
    taken up running (15-18 miles/week) and my Jobst Elavarex garments are
    Doing fine at managing swelling. So I second the idea of weight control and
    Question over restricting exercise and exertion.

  • Jane Kepics PT DPT CLT- LANA

    I am a PT and a certified Lymphedema therapist for over 26 years. Many of the precautions are anecdotal because no one will do the research – such as take 100 people with Lymphedema and see what would happen if you inject 50 of them in the leg. But since some people get worse with injections, we give them that precaution. There is evidence that exercise is beneficial for arm Lymphedema after breast cancer but good research regarding the benefit of exercise for leg Lymphedema has yet to be published. And we cannot assume that what is beneficial for arm swelling is also beneficial for leg swelling. In my experience, weight control is essential to treat any Lymphedema . It will not eliminate the swelling ( because it cannot negate the anatomical deficiency that causes swelling) but in many cases a good compression routine and periodic manual lymph drainage is all that is needed to keep the residual swelling under control. The task of the Lymphedema therapist and patient is to figure out how much exercise can an individual do before his swelling gets worse. That depends on how much damage there is and how well the garments or compression system does the job. Some patients improve with lots of exercise, some find that there is a limit to how much they can do before the swelling gets worse . So I would not go to extremes and say “Never do this or that” unless I consider the individual circumstances of each patient.

  • colleen

    i have pain in my left leg, near the knee. my lymphedema typically travels around on my right side, as i had radiation to my right jaw. i usually get swelling in my arm and head. is it typical for it to go to the other side? i think i may have a clot and i am going in tomorrow to the urgent care (i know, stupid me to not go now). but assuming i go to er before i get your answer, if they find no clot, could this be lymphedema, now on the other side of my body? also, is it possible to have no flare-up? i was thinking today that i had no real issues, and then my leg started hurting. thank you for your help.

    • Joachim Zuther

      Colleen: Lymphedema usually does not travel to different parts of your body. You should certainly have your MD check out the cause of the swelling

  • Kathleen

    I have primary lymphedema of the leg and wear a 50-60 mmhg support stocking. I am fit and exercise regularly. I perform self manual lymphatic drainage nightly interspersed with occasional use of a pneumatic pump. My question is how often should I be going to a massage therapist for manual lymphatic drainage treatments?

  • Great work, numerous truly strong tips! I truly appreciate you writing this post and the remainder of your internet site is exceptional!

  • Jan

    Does anyone know if there is still a stock (non-custom) pantyhose 40-50 compression that has compression to the waist? The Juzo Varin full knit seems to have disappeared and the Juzo dynamic has thigh high compression and just a panty attached. I am getting a ridge of swelling where the compression ends on the thigh…don’t really want to wear bike shorts and don’t want to go to custom…

    • Joachim Zuther

      Jan – as you know, the compression gradually decreases between the foot and the thigh. if a 40-50 garment does not provide adequate compression, you may have to switch to a pantyhose, or additional bike shorts. Your therapist should be able to give you proper advice.

  • Jan

    I am wearing pantyhose already. Its just that the compression ends at the thigh and I develop a ridge of swelling there. I used to wear Juzo full knit which had compression all the way up to the waist. I am wondering if any other companies have this option. The “custom” fittings have been a disaster…

  • Jan

    They no longer make the ready made product Juzo dynamic varin full knit 3513ATA. The customs have all been very expensive DUDs.

  • Rhonda Dudley

    My skin is aging with the rest of me and the elastic on my compression stockings is irritating my skin. I’m also having issues donning my compression bandages, probably age related also. Any suggestions?

  • Lew Carder

    For ease of putting on compression socks, get a “sock
    donner”. They are great to use! Most “Medical Supply” stores have them and some drug stores. Also available online.

  • Sarah

    I am curious about tattoos and lymphedema… I can’t seem to find any solid answers about yes or no to tattoos after lymphedema, just people not suggesting it (sounds like they wouldn’t support tattoos without it either)
    Anyway, I have lymphedema in my right thigh. I was in a car accident two years ago, I cut across the top of the thigh and had a few surgeries on it to save the leg, it started about 6 months after the accident and the swelling just accumulates around my knee. I have lots of tattoos, but have not had one since the accident. I would like to get a tattoo on the side of my thigh to detract from the scar, its not swollen on the side just around the knee but what would happen if I did tattoo on the same limb?

    What about tattoos in other areas?

    • Joachim Zuther

      The ink used in tattoos is a so-called “lymphatic load”. Part of ink injected in the skin will inevitably enter the lymphatic system putting more stress on it. That and the fact that getting tattoos bears the risk of infections is reason to advise against receiving tattoos on the swollen body area.

    • Sarah

      Hi , I have primary le since I was 8 in both my lower limbs. I have 10tattoos my self in various places allover my body except my lower limbs. When you have le you can get,internal bacterial infections. Ive personally had them and they are no joke. do not get any tattos where you have lymphedema. You put yourself at risk for not only bacterial but fungal infections as well and ive had them all. from someone who has many tattoos and had had le for over 20 years I advise against it .

  • I have a follower on my site that is asking what to do about blood clots in the legs and/or what can be done for them. I haven’t dealt with blood clots so far in my LE that I have had for better of 10 years now so I am not sure how to respond to that LE pt on my LE site, other than referring them to a therapist and/or doctor for a further prognosis.

    They are asking more specifically for an article on this. Do you have access to such an article?

  • Leily

    Hi JOachim,

    Firstly, I would like to say thank you for the fantastic blog and information you provide for LE patient. Then, i like to ask some questions:
    1. I have primary LE in my left leg which appeared when I was 35 years old last year. After 5 months they diagnosed the swelling with LE. wearing compression stockings and MLD (myself) made a big difference and my foot is now 1/2 size bigger than the other foot (2.1cm difference between two legs from thigh). My concern is pregnancy as we are planning to have kids and I am worry about passing this disease to my next generations. What are the chances of my kids getting LE? Is there a high chance?Also, I know that the swelling wil become worse during pregnancy. Will it be permanent or temporary and will go away after pregnancy?
    2. I am experiencing changes in my bowl movement (more frequent movement, color and texture changes)since I am doing MLD. Are these related? Is it a good sign?
    3. I am having mucous gathering in my mouth (Approx.100 ml daily )specially in the morning when I wake up and after having a big meal. It makes me coughing a lot too. This is happening again since I am doing MLD. Are these related?
    4. My Physio just recommends compression garments for me and says due to shortage of resources ( I leave in a small town) they can not do bandaging. Is wearing compression garments enough at this stage? Do you think I’d better go and find some one doing bandaging for me?
    Sorry too many questions but I really enjoy your comments and knowledge in regards to LE.
    Thank you, Leily

    • Joachim Zuther

      Dear Leily:

      Thank you for you kind comments. Primary lymphedema can be hereditary. There is a chance of your swelling to increase during pregnancy, especially during the 3rd and 4th quarter. However, if you know how to manage your lymphedema, you can certainly keep it under control. It is never a good idea to wear compression garments if the extremity is still swollen. Padded short-stretch bandages need to be applied until the limb is decongested and a garment needs to be fitted at that point. I would suggest locating a therapist in your area willing to apply proper therapy, should that fail, here is a link to an article for self-bandaging and self-MLD – hope this helped.
      Compression Therapy and its Role in the Treatment of Lymphedema: http://www.lymphedemablog.com/2014/04/29/compression-therapy-and-its-role-in-the-treatment-of-lymphedema/

      The Role of Short-Stretch Bandages in the Management of Lymphedema: http://www.lymphedemablog.com/2012/01/12/the-role-of-short-stretch-bandages-in-the-management-of-lymphedema/

      Self Manual Lymph Drainage for Lymphedema Affecting the Leg: http://www.lymphedemablog.com/2013/01/22/self-manual-lymph-drainage-for-lymphedema-affecting-the-leg/

      Application of a padded short-stretch compression bandage on the leg by a patient: http://www.youtube.com/watch?v=3NOflTkR268

    • Sarah

      Hi , im a le patient mine showed up at 8 years old in my left leg and then durring my first pregnancy my right leg swole. It was 2 times worse,while pregnant for me and in my right leg it became permanant like my left. Eve after pregnancy. All three generations of women have le. Myself , my mother , my grandmother. None of the men got it. Just us women. Ive had several infectionsin my leg and the skin in general. I have to be careful not to hurt them in any way. This blog held true to my case of le and ive had it for 24 years now. Running caused a internal infection. A bacterial infection actually. As far as tattoo ing the affected limbs absolutly not! If I get nasty fungal infections from reg scrapes imagine what a,tattoo would cause. And I have 10 tattoos on my bodyin various other places just not my legs . Any questions please feel free to ask me, ive been though it all and im only 32

  • Steph Maxwell

    Hi, I got diagnosed today with Lymphedema and was wondering if there was any way of getting compression socks in cotton cause I have eczema and have reactions to the socks that I’ve been given. Thank You.

  • Kathy

    My daughter was diagnosed with stage III ovarian cancer at 17. She is now 35 and has been experiencing lymph edema of her leg. This time it is worse. Seems to occur during hot summer season. She is experiencing soreness all the way up to her arm pit. She has had many surgical procedures including thoracic surgery due to her cancer which involved a teratoma. She is using compression stockings. would a diuretic help. She also sits most of the day at a desk.

  • Jennifer walker

    Hi. Last year I was diagnosed with lymphedema after 3 years of severe ankle swelling. I’ve had 2 ankle surgeries since diagnosis because of mechanical issues. I have been on a compression machine for several months with no change. Prescription stockings for a few years now. What else can I do? I wear flip flops because I can’t for in my shoe.

  • Susan

    Can lymph fluid leak from a toenail?
    My right ankle became very swollen after standing for several hours over this past weekend. On Sunday afternoon, I noticed 2 mosquito bites on that ankle and then on Monday, I had extreme pain in my right big toe – under and around my toenail. I thought perhaps my toenail had been pressing against the tennis shoes that I had worn over the weekend while standing several hours, so I decided to clip my toenail (even though it really wasn’t very long). When I clipped the toenail, a lot of clear liquid began to flow freely from underneath the toenail – at the top, down one side and even from at the bed of the toenail! It was clear with only a very slight color – not really yellow, more like a straw or hay color. It leaked this fluid profusely for about 20 minutes and then continued leaking slightly for more several hours. I kept it elevated for the evening and overnight. This morning the swelling was completely gone and my toe did feel better; however, after being up now for 7 hours, it is hurting and throbbing again. Do you think this could be related to my lymphedema?

  • Tracey

    Hello, I’m wondering if laser hair removal is safe on the lymphodema legs or bikini area. Have there been any studies or are certain kinds of lasers recommended? What about other parts of the body? Underarms lower back that are not affected by lymphodema?

  • Carol Schiller

    Hi I have been dealing with LE for the past 5 years. I just wanted to put my 2 cents in about LE and tattoos. I didn’t know I had LE until I got my tat on my right leg. The outline was from ankle to knee and front to back of leg. We just did the outline first visit. The next day half way thru the day, I noticed my leg was draining fluid. Lots of fluid. Couple of days later it stopped draining. Didn’t think too much of it, two weeks later went back to have more work done on it and the next day, same thing. Someone turned on the fauset. That scared me enough to check it out. That’s when I was diagnosed with LE. I started with a therapist and was told to wait to get things under control and then only do a little at a time. I got with my tattoo guy and we worked out a schedule to get it done. It took me almost a year to finish my leg but we did. Unfortunately I have LE in both legs, so I will not be getting anymore tats below the waist. I was lucky not to have gotten any infections, not worth it. I am also having both knees replaced in a few months. I have talked with my surgeon, he is savvy about LE so I am not too concerned there. Hope this helps with tattoo or not to tattoo.

    Thanks Carol

  • Alice

    I have secondary lymph edema of the right leg and have been dealing with it since 1994. I have toenail fungus in 3 of my nails. I have been using Vick’s and two different types of “nail polish” type treatment from my podiatrist for about a year and a half, and using anti-fungal powders. The fungas is not improving and due to the liver issues for the oral medication, I am choosing not to take the oral meds. In the years since 1994, I have only had cellulitus one time, but what can I do to get rid of this fungas so I do not risk cellulitus or other infections??

  • Linda Jarvis

    I have just had surgery and have two of my lymph nodes (legs) removed. Could you please explain to me of when to go see somebody regarding Lymph edema, I have no symptoms and I am very active. Do I wait until something arises if it does?

    • Joachim Zuther

      Since there were only two lymph nodes removed in your case I would not be too worried about the onset of lymphedema. However, it is possible. I would suggest to consult with a trained lymphedema therapist as soon as you experience any symptoms associated with lymphedema. Here is a link assisting you in locating a certified therapist in your area: http://www.lymphedemablog.com/find-a-therapist/

  • Jeannette

    I’ve had lymphedema for 15 years in my right leg I am getting ready to retire I have a very physical job do you think it’ll get worst as I get older because I won’t be moving around so much?

  • Carolyn

    I’ve had ankle lymphedema in one leg for a few years, successfully treated and managed with a 30-40 knee high. However, I now have pooling around my knee, just at top of garment. I’m looking for something that will go up to the bra line, so I will be combining shapewear with lymph support wear. I’ve found Solidae leggings, but the compression isn’t high enough. Any sugestions? Thanks.

  • Carolyn

    Thanks for your help. I have only been told by a salesperson that the compression isn’t high enough on Solidea, but I plan on giving it a try since I’ve read some positive things.

  • Cindy

    I have had lymphedema for about 35 years. Both of my legs swell. I have it under control most of the time. I wear compression hoes, and I do have a pump. I started a new job last year. I work 10 to 12 hour days. I only work 3 days a week. I was doing great at first, but the last couple of months my legs have felt so heavy when I leave work. Last week both my knees started swelling and above my knee cap was very tender. I took off a week of work. I went back to work this past Monday, and I worked 12 hours. My legs where in awful shape when I got home. I felt like that I was swollen from the waist down. Now I am off of work for another week. I am going to go have my legs wrapped on Thursday. IF I keep my legs elevated they are fine, but as soon as I get up on them wearing my hose they are still swelling. My Dr. is telling me that my job might be too much. I just might can’t work 12 hour days. I need some advice. Should I only work 5 to 6 hours. Can I no longer work a 40 hour week job. I should mention that I have not worked more that 16 hours a week for the past 18 years. My children are older now, and I wanted to go back to work.

    • Joachim Zuther

      Cindy: One option would certainly be to limit your working hours. Another option is to wear an additional knee high compression stocking (compression class I), or an alternative compression device (CircAid, Solaris) on top of your compression hose. This would increase tissue pressure and limit the accumulation of fluid in the tissue of your legs. Here is a link to check alternative compression devices: https://www.lymphedemastore.com/ViewProducts.aspx?cid=133

  • Cindy

    Thank you for your suggestions. I had my legs wrapped this week. Hopefully the wrapping will decrease my swelling so that I can go back to work. My knees have been swelling a lot. I have never had this problem before. Thank you again for your suggestions.

  • Kimberly

    Hello, I’ve had secondary lymphedema in my left leg for 8 yrs now due to trauma of the inguinal nodes. Before that I was a competitive runner and fitness competitor. I am back to light jogging again which feels good physically and emotionally it lifts my spirits. And I have managed to bring it back from stage 2 with fibrosis to stage 1 with a difference of 1 to 2 cm in the legs. My leg actually reduces and feels better overall after jogging as long as I practice good maintenance with compression garments, elevation, and low sodium foods. But my question is what type of garment or bandage would you recommend during jogging that would help the leg maintain compression, yet breath, and be flexible for an even. less “robotic” (more comfortable) stride with my other leg? It just feels so stiff when I wear my 30-40 compression stocking. Any suggestions?

    • Joachim Zuther

      If your lymphedema predominantly affects the lower leg, you may try to wear a 30-40mm/HG knee high stocking during your jogging activity.

      • kimberly

        No, my lymphedema involves the whole leg and I wear a thigh high. I should have mentioned this. Maybe a lighter compression during exercise? But I’m afraid it will not be enough.

        • Joachim Zuther

          You may try using a lighter compression during exercise. Should it be insufficient to keep the swelling down, you can always go back to your current compression thigh-high

  • Mia

    3 June 2014 LAVH with lymph nodes removed. Cervical Cancer. A year later and my left leg looks like it belongs to someone else. Went to ER and was told I have Lymphedema. Anyone else have this happen? I’m so angry.

  • Kimberly

    Thankyou for getting right back to me. I realize this issue is minor compared to those that are writing to you with very serious medical consequences. You treat every comment and question with respect and courtesy. I appreciate this as I’m sure everyone else does. I’ll try a lighter compression and report back to you on the results. Thanks again. I’m not alone in this after all. And it is refreshing to find someone knowledgeable that cares.

  • Toni

    I just found out 2 years ago I have lymphedema in both of my legs,I’m on 120 mg Lasix a day with potassium pills I also have a flexi touch machine that I wear to try to control and to get rid of some of the fluid I have wrapped my legs with the bandages and Iv propped my feet and legs up but nothing seems to be working Iv gained like 100 pounds and I’m over weight I do watch what I eat and I only drink water nothing else I go to the dr about every 2 to 3 months or sooner I’ll weigh in and my weight is high and I’ll go back and cut back even more on eating and what I eat but my weight is even higher I have three kids and Iv never in my life been the weight I am now not even when I was prego this is very stressful to me now I’m on depression medication and anxiety medication I don’t even want to go out of the house because of the way I look now before this I was somewhat heavy I had all the curves the hour glass figure with the perfect butt this is a life changing experence for me Iv been thinking about looking into have the lap band surgery does anyone have any thoughts on this , please I can use all the help I can get ! Thanks

  • Kimberly

    Lighter compression during jogging is the answer for me! For the first time in 8 years I felt the muscles (especially my calf) in my left leg respond and contract with every step after switching from 30-40 compression with 28% spandex to 20-30 compression with 20% spandex for exercise. I’m also experiencing much greater fluid return, more mobility, and less pain at the joints while jogging. Lighter compression only during exercise followed by firmer compression at all other times along with healthy eating, low sodium choices, and elevation at night and life is much better. Thankyou Mr. Zuther for your advice.

  • Maria

    I excercise 3-4 times per week and it seems to help. I have had lymphedema for 7 years on my entire left leg. Although I have noticed infections when i overdo the squats or leg excercise. I am getting LNT surgery at the end of the month, praying it helps!

  • Sitt Rees

    I have had progressive swelling in my right leg for about a year now, I started wearing compression socks about 6 months ago and they do help. Im probably a grade 0 as I do not have pitting edema as i don’t swell that much – its just chronically aching, which is annoying cause I have to sit and study A LOT.

    I’m a medical student so I really should be more proactive and actually go get my lymphoscintigraphy done so I can actually get a diagnosis. I have had a duplex U/S already to rule out CVI.
    Would you recommend a fMRI and map the lower lymphatics so then I can pinpoint the source of abnormality ?

    Also have you heard any recent news on whether low level laser therapy is beneficial for peripheral lymphedema, I have been reading some journal articles but the results are divided.

    Furthermore to mention geography, I live in Perth, Australia and was wondering if it is worth getting tested for Lymphatic Filariasis, however rare that could be as I have lived in Thailand and realise that time for nematodes to reach adulthood could take years, during which you could be asymptomatic.

    Lastly, would you recommend a lympho-venous anastomosis as I am in the early stages and that is of course the best time to have one done.

    @Kimberley – I will try your idea of wearing lower pressure compression socks when exercising as I to like to exercise and it swells a little bit more when I wear tighter ones (20-30mmHg).

    ps – sorry for the million questions.

  • Stacey

    Thank you for this website! Our daughter was born with primary lymphedema probably(Milroy disease)We did not have much guidance on what to do for her. Of course when she was born the doctors ran every test thinking it was something worse. She has been a healthy, smart,active girl and we are just getting her fitted for a compression sock. I try to find support and not look at too many pictures because as a mom I do get scared on how it could progress. She is aware and always called it her “fat foot”. We are trying to educate her on taking care of her foot and giving massages. I am hoping the compression will help her and help her to know how to manage as she gets older. We have never kept her from an activity and she loves soccer and dancing.I hope she always feels like she can do anything. If you have any other tips for young kids I’d love to hear.

    • Joachim Zuther

      Stacey: I suggest you consult with a trained and certified lymphedema therapist. You may use the above link labeled “Find a Therapist” in order to locate a therapist in your area.

  • Rish

    Hello, thank you for this page.
    I your article, you have mentioned to Avoid Heat. Recently, a friend of mine suggested me to try using Heated Compression Stockings. What would be your suggestions? Is far infrared radiation therapy good for lymphedema patients? Thank you.

    • Joachim Zuther

      Dear Rish: I am unclear of the potential benefits of heated compression stockings. Since any form of heat increases local blood supply and therefore increases “lymphatic load”, heat should generally avoided by patients affected by lymphedema. However, if other conditions exist in combination with lymphedema, heat may be beneficial. In these cases the potential benefits of heat need to be weighted against the potential aggregating effects of heat to lymphedema. The same goes for FIR; FIR wavelength is too long to be perceived by the eyes, however, the body experiences its energy as a gentle radiant heat which can penetrate up to 1.5 inches (almost 4 cm) beneath the skin. In other words, the temperature and thereby the blood supply in the lymphedematous extremity would increase. Here is a link to an article on FIR: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3699878/
      Here is also a link to a discussion forum on the topic – please read all comments: http://www.lymphnotes.com/bb/showthread.php?t=771

  • Lerato

    Hi

    Just yesterday I was in hospital and I have been diagnosed with lymphedema and I’m so scared because I’m only 22 years old and a female. On my left leg I have swelling and I’ve started using the stocking. I’m afraid it won’t work even though it’s stage one . People look at me like I’m crazy and have pitty it’s annoying. Does it go down?

    • Joachim Zuther

      Dear Lerato: I would suggest you consult with a trained and certified lymphedema therapist. Please use the “Find a Therapist” button on top of this page to locate a therapist in your area.

  • Holly

    I was diagnosed yesterday as having lymphodema in my right ankle and foot. If I wear flip flops it doesn’t swell in the ankle, only the foot. If I wear tennis shoes, it swells about 4 inches above my ankle amd partly the door but it hurts on the lateral border if my foot. I have seen one orthos, said it was from my back and nerve damage and nerve test showed no sciatic nerve damage so they ruled that out as being cause. Saw ortho for ankle, was told posterior tibial dysfunction and wore boot for 10 weeks and then he said I was healed. I was now swelling on outside of ankle more. Whole foot and ankle changed from eversion to inversion. Mri negative. Although keeps foot still and doesn’t look at biomechanics of ankle in motion. I feel the aso brace damaged something as I now have tingling superficially. Could this be the lymphatic system breaking down? When I got diagnosis yesterday, was told nothing could be done. Live with it. Where do I go now? What type of dr do I see? I just ordered compression hose on my own and hope it helps. Should I see a dr to see where it is coming from? I have never had any previous foot and ankle problems so wouldn’t I need to know where the lymphatic system is disrupted? Just need thoughts due to negligent medical care. Thank you

    • Joachim Zuther

      Dear Holly:
      I would suggest you consult with a trained and certified lymphedema therapist to have the origin of the swelling evaluated. If it is indeed lymphedema, it should not be difficult to get under control. In order to locate a therapist in your area, please click on the “Find a Therapist” button on the top menu of this page.
      Below is a link, which lists MD’s specialized in lymphedema treatment.
      http://www.lymphedemapeople.com/phpBB3/viewtopic.php?f=25&t=5

      You may also go on our website http://www.acols.com and cliick on the “Find a Therapist” link in order to locate a therapist in your area.

      Hope this helped,

  • Tia

    I was in the past two months diagnosed with primary Lymphedema, both legs with the left initiating the symptoms 6 years ago. I had a SPY test showing little lymphatic structure beside foot on L side and damaged structure the entire length R leg. I have been doing MLD and bandaging with short stretch bandages for the past 4.5 weeks. The question I have is that the volume of legs has gone down significantly, except for my toes and top of both feet. My therapist wants to move me to thigh high compression 40-50 and took measurements. Since the top of my feet continue to be swollen despite continued bandaging including the toes should I switch over to stockings? I don’t want to be in bandages forever and they seem to not address the tops of my feet. Also, I am a healthy mobile 33 year old, my therapist has never given 40-50 due to the difficulty getting on, should I try lesser compression with a knee high on top? Thanks.

    • Joachim Zuther

      Dear Tia: Has your therapist try foam pieces/chip bags on top of your feet to decrease the swelling? If not, I would suggest trying that first. As for the compression stockings. If the swelling is more pronounced on the lower portion of your legs, you may certainly try a 30-40 mm/Hg compression thigh high with a compression class I knee high stocking on top of it.

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