Lymphedema: A Growing Problem?

Lymphedema: A Growing Problem?

john connor

Now, I’m all for complimentary comments on my columns, and in the combative world the internet has engendered, the stroppy ones, too. But it’s when you lot start writing to each other that I know I’ve hit something. Which is a good thing, however irrelevant I then feel.

A while back, I wrote about having edema and amassed 55 comments. The most my column has ever attracted. Nearly all were about a shared problem.

I’m 6 feet tall and, therefore, have always had big feet — size 12. (No making up your own jokes, you in the back!) None of my shoes fit me anymore, as I’m now in size 16 clown shoes. As such, I’ve bought a pair of blue Converse kicks. I might as well look the part of a clown! MS may have taken away my ability to juggle (a skill I picked up in my theater days), but I am now at least the master of the pratfall.

MS patients grow so quickly these days. (Photo by John Connor)

Edema is not something I found much about while researching on the Net; there may be loads of info now, but this was in February. My general practitioner (the posh moniker for “your local doctor”) had little to say and put me on water pills (furosemide). Another doctor, while visiting me for something else, advised me to double the dose, from 40 mg a day to 80 mg. Which I obviously did.

Meanwhile, I fought to be seen at an edema clinic. Luckily, before MS, I was always a scrapper, which turns out to be an even more useful attribute when you get ill. It hasn’t been easy — all clinics seem engineered for patients with cancer!

I was first referred to a dermatologist who posed the relevant question of, “Why have you been sent here?” She turned out to be the correct stepping stone. In addition to prescribing me Eumovate ointment for my elongated skin, she referred me to an edema clinic. I needed a consultant to open the correct door. In army terms, the lieutenant sent me to the major who got peeved enough to write to the general.

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It turns out water pills are useless. All they do is dehydrate you elsewhere and put a strain on the kidneys (I’d rather any strain is due to whiskey). Besides water, there are several other things in the lymphatic system. I apologize; there was a lot of information and I can only remember the word “protein.” I’m now weaning myself off furosemide, at 40 mg every two days. Otherwise, my legs will likely balloon up! I don’t have pitting edema, either — if you have it for any length of time, it’s lymphedema.

There is no cure; only exercise is a treatment! They weren’t keen on lymphatic massage, citing cost and efficacy. They were, though, very keen on swimming pools, as the pressure of the water is excellent, and for people like me who can walk in water, highly efficient.

I say “they,” as we had then been joined by the sort of expert who turns up on science fiction shows, earnest and passionate about his subject. He was right out of “Doctor Who.” He even wore a white lapel badge that said “Prof.” Rather conspiratorially, he pointed out there was no scientific evidence for this yet, but they are now thinking that MS itself may encourage lymphedema. The very processes of contraction that make the lymphatic system operate might be affected by MS itself. The British MS Society is presently funding research into this. Also, some of the drugs used for combating MS might exacerbate the issue.

There are only three lymphedema clinics in the U.K., and funded by money for cancer, they are geared up for that disease. I’d fought my way in, and I’m glad I did.

I’ve even done a bit more exercise!

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19 comments

  1. Michelle says:

    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)

  2. Jacqui says:

    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

  3. Cynthia King says:

    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.

    • John Connor says:

      At the mo only have compression stockings – they’re so knackering to get on & off, they tend to stay on till shower/swim time! Was advised to take them off at night but as with many things with MS you’re being advised by somebody who has no idea that something so seemingly simple just isn’t.
      Think I’ll be getting some super-duper compression thang when I go back to the Lymphedema Clinic in Jan next year!

  4. Karen Ransom says:

    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??

  5. Melissa says:

    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.

  6. Karen Gucma says:

    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.

  7. 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.

  8. Catherine McDowell says:

    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 .

  9. Ken says:

    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.

  10. Elizabeth Cohen says:

    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.

  11. Carmela says:

    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.

  12. Lydia says:

    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

  13. M. Lawrence says:

    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.

  14. Lisaann says:

    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.

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