I want to share a recent experience with you that has me stumped (no pun intented). Last June I was unexpectedly hospitalized in California. I went to the emergency room with excruciating abdominal pain, which turned out to be a small bowel obstruction. I dont remember any of this but at the admitting desk they rushed me right in cause I was blue. They hooked me up with oxygen etc etc etc a short time later I "coded" as in CODE BLUE! Scared my daughter half to dealth....I dont remember. At a point in time when I became more coherent I noticed they had big boots on my legs that massaged or pumped. Silly me thought they were to help the lymphedema. Nope! Never addressed that. They had me on IV LASIX which I also thought was for my legs. Nope! Evidently my congestive heart failure was showing itself again so they were giveing me the diuretic. After 8-10 days I nearly flipped out of bed when I saw my legs. They were SKINNY! I do mean SKINNY! And also very very painful. Normally I havent had much pain with my legs. I havent had skinny legs in over 50 years...hmmm make that never! Ugly skin and sore, but skinny! I was excited, thinking about all of the pants I would be able to wear. Finally, after 17 long, terrible days I went home. I watched in horror as my skinny legs started getting "fat" again after only a few days off the IV. So my big question .....Is the fluid in our limbs WATER or LYMPH FLUID? I suspect both but felt disappointed it didnt last longer. I really feel like we are fighting a losing battle.
Please someone out there, give us a success story!
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gramjane
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Good to hear you made it through that frightening ordeal!
In a nutshell, Lymph fluid is part water and part protein. It's the excess protein that builds up in the Lymphatic limb that causes tissue changes (e.g. fibrosis) in the skin which we want to avoid or the skin becomes hard like a thick piece of wood.
Sadly, LE is incurable and there is no quick fix or even long term fix. Diuretics are not the solution and can cause complications if used over the long term as a treatment for LE. Howeve, if you have a diuretic prescribed due to heart problems then you should take them as it targets oedema which is different Lymphoedema.
Thanks CC You have so much knowledge to share, its very helpful. I've asked about the hard skin or leg, no help. Thats why I call my left leg a petrfied tree trunk. It's really horrible. My right leg is still soft but building a hard ridge. Anyway to stop that? Jane
The best treatment and prevention of swift progression of the disease is to engage is daily Simple Lymphatic Drainage you can do yourself, and MLD from a therapist.
Manual drainage to drain away the excess lymph (protein rich fluid) will help slow the damage to the tissue from long term excess/built up protein. The cumulative result of excess protein is the wooden leg effect, and skin that looks and feels like thick grapefruit rind. There are other tools in the LE toolkit, all help to address the effects of excess lymph in the limb. I'm trying to figure ndca way to paste into this post a photo of my long list of LE tools
Strange but I don't have the thick rind like skin, instead mine legs are smooth but they get hard and shinny as they fills. I do have excellent skin treatments as I am prone to break outs of eczema, hence, I have always used Hydromol or Epaderm in my bath in place of soap everywhere and again afterwards when I come out. During the day or before bed, I ensure that my feet get an extra thin coat of hydromol especially between the toes. I do have big legs though and they are an unusual shape. My GP refused me diuretics but I do know that they can work for some people and as I have seen this evidenced thought I would ask if I could have it. My GP at that point in time had always just told me the problem was caused by being overweight and that was the issue that needed addressing. But I went on to tell him that my father was a rake of bones and he had the same problem as me, very large swollen feet and legs full of water. I told him that I believe being overweight is not helping me but my problem I thought was inherited by my gene pool.
To cut and paste. Highlight with a left click and drag down the bits of text you want or pictures you want, then within the highlighted bit click again copy, then go to the the page you want to copy to and right click your mouse twice and a column menu will appear select paste and after a couple of seconds what you wanted from one place should relocate to the new place. Remember to click outside the area to secure your text.
As a teacher whether in or out of work, I do a lot of this cut and paste to create professional resources. Good luck.
Your description of your skin is normal for a lymphatic limb that is not having compression therapy. The skin stretches and get gets shiny as the limb fills with lymph.
Your GP is right to say your LE is exacerbated by extra weight. There is a correlation between obesity and LE - the worlds leading LE specialists agree on this. Obesity can lead to the development of LE. However as your father had it I would think it's very likely your LE is due to genetics but exacerbated by your excess weight as it the lyphatic structures (vessels, nodes etc) are so taxed.
If you are not in compression prescribed by a trained LE nurse or therapist then do ask your GP to refer you to a local LE clinic. If you don't have one local then to a Vascular Consultant who can then refer you to St. George's Hospital LE clinic in London (unless you are not in he UK)
You won't have tissue changes in your other leg unless it also has Lymphoedema. It occurs in the limb where lymph can't drain (back to your heart) properly
Ski boots have the same effect on me. It doesn't last though. The boots also get very painful as the fluid is forced up. In your case presumably you were lying down while in hospital (which always helps me but I can't spend my life lying down) plus they were using some sort of pump. Glad you are home. Hope you are feeling much better.
Thank you AnneBury, you are absolutely right. I was 98% of the time lying down! Maybe thats part of my problem I rarely lay down, sit yes, feet up, no. My legs appeared not even to have any real fat on them and hard stuff was gone too. Too bad, like you say, it didn't last. However, in the process, I also lost nearly all of my strength. By the time I got home I couldn't get up by myself. Not fun!
Short term diuretics act like a magic wand - but long term can exacerbate Lymphoedema - it removes tissue fluid, but leaves behind protein, which builds up over time. MLD and compression can help to alleviate it.
If you you have congestive heart failure, you should be on some form of diuretic - do not stop taking it - it is keeping you ticking!
Thanks Lynora for helping to educate me. How do I tactfully share this with my Dr.? The congestive heart is gone, just Afib now, ugh. But Im on heavy diruetics because the two Drs think it's getting the fluid out. It is out of my body but not my legs and I know I must have the protein problem, now what?
I've only been diagnosed by a vascular Dr. a few years ago. I never went back because he never offered any help. Plus this is what he said when he looked at my legs. "Yup! That's lymphedema, If you lived in Africa it would be called Elephantisis (spelling) and would be caused by a bug bite".
I am taking med for Afib plus warfarin. The thing about weight loss but not off legs is something I read once while trying to research lymphedema. It said no matter how much weight you lose you will never lose it off your legs.
Well he needs a bit more education! It's not a bug bite - elephantiasis is the end stage of filariasis, caused by a filaritic worm which enters the skin of a lower leg, usually from water.. The swelling rarely affects both legs, until very late stages. I do not believe this parasite is common to North America!
Do some reading about lipedema and see if there may be any coincidence with your lifetime of large legs.
Ecactly why I never went back. Really a stupid remark from a profesdional. I will look into lidedema.
I go back to the Dr. again on Thurs, should I question him about the diruectis and what the fluid really is? And is there a way to undo the petrified tree trunk leg?
If they are giving you diuretics in the hope it will reduce lymphedema (or lipoedema) in the lower limbs it ain't gonna happen. However, if they are for a heart problem, you must keep taking them.
Have a look at lymphnet.org - the National Lymphedema Network site in the US - they may have literature available about the use of diuretics - may also be worth joining their patient forum. It's a bit closer than this one!
Have you tried a heavy emollient like Hydromol, Dipro base or Epaderm as these products really moisturise the skin and keep it hydrated and in good condition?
The application of it is also good as you massage away from the fluid build up.
Very similar thing happened to me. Have had left side heart failure for years. Had three operations over a three year period Gall Bladder (ended up having a stroke). Mastectomy which resulted in major lymph problems in my chest then a further operation to remove dead flesh. I have always had problems with my legs swelling, especially with heat, and cellulitis. After operations and constant rest my legs would go back to normal ? size. For operations I had the boots on my legs to keep the circulation going. Six months later I had grossly swollen legs, big green sores and the skin peeling off my legs. They looked like joints of beef and tremendously painful. After finally being allowed to attend The Leg Clinic for wraps I was amazed to see really skinny legs. I have to wear compression socks all the time now unless lying down in bed. Ironically the GP had taken me off Ferusemide a year ago saying it had been proven to be ineffective for lymphedemia. Gradually I have found that I have been having trouble with my breathing again (heart?) so this week have gone back on Ferusemide and it seems to be helping with my wheezing. Will have to see if it helps my legs !!!!
Oh PenelopeW how I feel for you. There are such mixx ed solutions when we have so many health problems. Although the diruetics are not supposed to be effective for lymphedema I hesitate to go off them. Like you I have heart issues ( tho not as severe as yours) and a paralyzed diaphragm, so when I retain too much fliud I feel like I am drowning in my own juices. I went to the doctor last Thurs. where the diuretics dosage was upped. My legs havent responded much but by Monday I lost 9 lbs and breathing is easier.
In light of this post gramjane (not sure I'd seen diaphragm complications in other comments) you are on diuretics for the chest - any loss of fluid from the legs is going to be coincidental. You must keep taking the meds you have been prescribed otherwise you could face CHF again.
I am 73 and have managed milroy's with lasix and the leg pump. I have swelling in my right leg. I would like to have more information on the skin problems, I have developed in the last five years. any advice would be welcome
Hi Lenore, I have Milroys in both legs. 30 years ago I had Holmans Procedure in left leg which was very successful, and 5 years ago I had liposuction in my right leg, which was not. Can you tell me what is LASIX? Also what leg pump you have, how often you use it and whether the results are very successful or just so-so, or just short-lived good result. Like everyone else on this site, I need help!
So clearly am years late here but still someone could find this useful. In the viewpoint of Traditional Chinese Medicine, fluid retention is due to weak kidneys not being able to pump out the excess water. It can also be weak spleen (digestion) or excessive dampness (thick heavy, rich food), weak lung, or combination of these patterns. Diuretics force the water out, but they may over time weaken and tax the kidneys which worsens the problem and doesn't address originally what is causing it. you could google TCM foods to eliminate dampness and water, foods to tonify yang, and try eating well cooked pourridges to boost digestive power. Barley is known specifically to help leg edema in TCM herbology. Pourridge will nourish the muscles also. Just my 2 cents....I hope it is useful to you or anyone else.
Barley, celery, dandelion root and leaves, beans (drink the water they cooked in for a great boost) cornsilk tea, winter melon, watermelon, lettuce, seaweed, are a few things that help with releasing excess water.
Hello maychannel, I dont know why I didnt reply to you way back, but I just found it again. Thank you so much for that good advice. Im willing to try anything because I feel Im being ruined by "water pills". I'v just recently been in the hospital again and of course they immediately hook me up to IV Lasix. Not just for my legs as I do have congestive heart failure as well, but they use my legs as an indicator. They took 20 lbs of "water" off me. I had skinny legs just like the last time they did this. While I was in rehab I was on the diuretic pill. Well Im home now, and as expected my legs are getting bigger each day, even tho I'm still taking the pill. Even with salt restriction. So Im ready for some recipes for the porridge and teas anything you can share with me. Thank you so much and please forgive me for waiting so long . Jane
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