Lymphedema: A Growing Problem?

Yay! Being your own advocate is the best thing I've ever. Good luck.

I am a lap swimmer and I do notice the days that I swim which is about 3 times a week. Any puffiness I had in my feet is gone.

Hi just read your post thx you for sharing.
I had lymphedema arms and legs early this year was really bad was a size 8 and ended up in a size 12 now back at a size 8/10 with the help of massage and adding baking soda to my drinking water worked for me good luck ( RR MS)

I have had lymphodema since 1998. I started with water pills as well. They are useless. My current treatment is lymphodema wraps for my legs. They work the best and help to keep the lymphodema ulcers and weeping skin under control. I would not wish this on my worst enemy. It makes sense that MS causes it to be worse. Mine has gotten worse as my MS progresses.
Jacqui - SPMS

Now I don't feel that bad. My feet swell terribly during the hot weather. I have done nothing but return shoes this summer. I was at a party and someone told me I needed a pedicure. I need more than that, that's the definition of putting lipstick on a pig. The only shoes that fit are Birks. I only bothers me after I've been on my feet and they feel really heavy. But they look horrible.

Do you use compression socks during the day, or compression bandages at night?

I always thought the two were related but no one ever listened to me. I started with the swollen feet and ankles, and then the numbness and tingling in my legs. Back then (1985), my doctor "guessed" that I had MS but MRI's weren't available yet. The MS symptoms went away but the swelling never did. I was finally diagnosed with MS in 1999 after a pretty bad relapse. I have RR MS but always have lymphedema. And, no, diuretics do not help! Why has no one in the U.S. researched this??

It looks like my feet, I have lyme disease. Many, many people with MS and Parkinson's, Alzheimer's, etc, are finding out it's actually lyme causing their problems. And they are taking antibiotics and getting better.

I really liked your article; although you use words that are hard for me to understand. At first I was going to ask my doctor if I have diabetes but now I know better. I use Epsom salt gel then put socks on to make my feet feel better. It works for a little while but needs to be repeated a couple times a day.
There is an apparatus to help put compression socks on. It really does work. I only wear the socks for about 8 hours then back to regular ankle socks at night.

It was devastating to me. Of all my 69 years, and 45 years as an obediant full-time American worker on my feet in the retail industry, then 30 years as an English professor, I NEVER had swollen feet. Then, 3 months ago, my beloved neurologist -- I say that in candor, she's truly the greatest -- prescribed a moderate opioid first for the sudden progression into agonizing neuropathic pain, and BINGO, between a thursday night and Friday morning, I wake up with pigs knuckles for feet and ankles. Devastating, demoralizing, at first, scary as hell. Could barely get into my shoes. Contacted her immediately, switched me to Lyrica and Naltrexone, and over time, better but not 100%; I'd say 90%, I can actually make out same veins again. No water pills for me, brother. I make it a point of taking a walk daily, that helps, at least a half a mile in a Target close by so out of the heat, with facility for emergency, entertained by all the merchandise, nice people, always. A plus for us struggling to walk: use a shopping cart as a walker, it's aces. At present, my neuro and I are working with some alternative meds to get me off the Lyrica, and when that may happen, the 10-15% edema might go away, miraculously, for a morale booster which we all desperately need. With that, Blessings to you all.

Thank you all for your comments and thank you for this editorial on a lymphedema I’ve been having issues for the past 3/4 years with my feet swelling up really bad and not knowing know why, awls I do is sit on my butt and keep my feet up to try to keep the swelling down and there’s times I had to do that to get to feet down to be able to put the pressure socks on Dr. ordered water pills also for me with potassium . when they swell up three times the size it normally our quest normally I’m a 6 1/2 I had they also hurts. One suggestion my daughter made was get a really cute pair of slippers to be able to wear out in case your feet swell up , i’m learning to take them with me when I go out, but sometimes they swap so big I can get the slippers on. You have to watch your salt intake the humidity bothers my feet , etc. etc. etc. I got so desperate a couple weeks ago because of the heat and I blew up I didn’t drink water for like a couple days just so I could get the feet down I actually saw the veins and everything but it came back with a vengeance .Yes toss this up to MS I guess I also have spinal stenosis. Not to mention the more inactivity I have the more weight I’m gaining so I can’t win this freaking battle the matter what I do. And add depression tall that, and you get a ticking time bomb .

Thank you for addressing this. I believe that this is another symptom of ms that is underreported. My GP suggested a diuretic trial but after a few weeks with no improvement I stopped. Neuro suggested massage and wraps. Considering wraps as a trial. Anyone with successfull treatment options please provide input. I’ll report the results of the wraps.

I have lymphedema mostly in my right leg because I drag that leg. When you don't walk properly and flex your foot, the fluid cannot get back up your leg so it collects in foot, ankle and calf. The only thing that works is compression. Some of the good compression hose that are toeless come with a small slippery piece of fabric that fit over your toes and make it easier to get the hose on; unfortunately you have to have someone help you get them off, or at least I do. One other thing that helps reduce the swelling is clean eating: no sugar, gluten, dairy or processed foods. When I eat just fruit and vegetables, my legs do not swell. Must eliminate all foods that cause inflammation. Do not take water pills--they make the lymph fluid hard as it removes the fluid but it is then even harder to get rid of.

Interesting. I have swelling in my left foot which is the side affected by MS. I thought it may be due to the brace but this makes more sense. Also the skin on my left arm and leg are always noticeably cooler than the rest of my body. There may be some vasomotor dysfunction there also.

So interesting to see this here. I only have a problem with my left foot. It turns purple and swells up. The swelling isn't nearly as dramatic as yours. I kept looking and looking for what it might be and finally decided it had to be lymphatic so started doing exercises as if I had lymphedema. Then I saw this article which definitely seemed to confirm. https://bigthink.com/robby-berman/surprise-scientists-discover-the-human-brain-has-a-lymphatic-system

Great observation! Perhaps the lymphedema is secondary to demyelination of preganglionic sympathetic nerves (spinal level T1-L2) which would in turn compromise the normal constriction of pre capillary arterioles in the skin. When one stands, these arterioles normally constrict, preventing heightened flow into the thin walled capillary beds of the skin of the legs. When the constriction fails, the capillaries and venules are flooded, leading to fluid and protein leakage into the surrounding skin. Normally, the lymphatic can pick up some excess spillage and return it to the bloodstream; however, the constant, unregulated leakage overwhelms the lymphatic system’s ability to do so. The unregulated intravascular flow also floods the lower extremity venous system leading to venous hypertension which also contributes to protein and fluid leakage in the skin of the leg. Diuretics don’t help this but compression and sometimes, elevation helps. Calf muscle contractions cause venous blood to move from leg back to heart; so, If you have weak leg muscles or minimally used leg muscles, you may be more prone venous hypertension and lymphedema. This can occur if you have spinal cord involvement (L2-5) which has demyelinated motor pathways.

Thank you thank you thank you. Ive been on a cancellation list to see a vein Dr. Well I'll be bringing this article with me! Along with dragging my swollen leg too.

I find all of this very interesting. My husband has horrible edema in both of his legs, for many months now. He's been through all of the tests, where everything shows fine, but his poor legs, feet, and other areas are huge. He was referred to a lymphedema clinic today, so we'll see if that helps. So far, the compression stockings and water pills haven't. I did a google search on lymphedema and MS, just to see if anyone else thought they may be related. I'm so sorry you all are going through this, but actually relieved to know it may be MS-related. Thank you!

How interesting that "they" wouldn't think that Manual Lymphatic drainage would be important. That plus bandaging are some of the most effective ways to get a reduction in swelling.

I personally also use Electro-Lymphatic Drainage along with compression bandaging to reduce swelling and it is like a 1-2 punch. See info here: https://haltmyswelling.com/therapies/electro-lymphatic-therapy

Of course, swimming and exercise are very important parts of therapy, but I would not skip out on lymphatic drainage.

Shannon G.
Certified Lymphedema Therapist
Albuquerque, NM

I have PPMS and had been suffering very badly with Edema, the tops of both feet and wide ankles, more so my right foot...well I was until we had our very hot and dry summer this year, then I was told to up my water intake, cut out caffeine teas, oh and of course I was offered water tablets but straight away turned them down..had myself an Epsom Salts foot soak and all seem to have done some magic on me these last few months...My feet still feel tight but the feet and ankles are looking more as feet should be looking..I also suffer Erythromelagia, at least that's my version as they turn red but dont turn blue...the medics records have it ( before my MS diagnoses ) as Raynauds Phenomenom...

My MS Dr said to lie down and put your feet on a phone book. My GP
did have my legs checked for blood return with ultra sound. No problems. Two weeks ago I saw my PT/OT therapist. She has both degrees. I went to see her for lack of feelings in my hands and then showed her my feet. She immediately said I had lymphedema. She worked on my hands and told me to try and walk a little more and drink lots of water and said she would look for some way to stop the swelling since I could not get compression socks on or off. After a week of looking she came up with three different feet/leg compression wraps. One just for the foot and another for the leg and foot called a Circaid Juxta Fit Essential Long Lower Legging. This is a wrap with 5 velcro bands around that you can adjust the compression to 20-30mmHg to 50mmHg. Adjusting the pressure is easy and quick with the band system.. The leggings are open so easy to put on. They are available from amazon, a little expense at $158 per one Leggin. I ordered 2 and they will not be here until sometime late next week. I will try them and report back after I try them late next week or when I see my therapist the following week. I have SPMS and both legs are affected, one more than the other and can walk only a little since I was not able to walk period 4 weeks ago. I thank God because I didn't think I would ever walk again. Thank you all for the good information. Lots of articles on the web.

Thanks guys for the piece of information.

it couldnt have been said better, lost of detail is sited in this piece of information it will certainly be of help to many.

thank you for sharing this information, i will surely be of help to many

to all you are making efforts to enable people get more awareness regarding this complication thanks bunch.

all i can is thanks for making the information.

this piece of information will surely help a bunch out

some times there exists so many complexities that we know not of , thank you for promoting awareness regarding this specific subject matter.

This has been incredibly helpful.
I'm in a wheelchair now with SPMS and take care to do as much as I can but my right leg and left arm both have Edema now.?