Medications and supplements for Lymphedema
GeorgiaDiva
Posts: 16 Member
List here any medications or natural supplements you use to help your LE.
Michelle
Michelle
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Replies
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Nada. Zilch. Zero. Meaning, I've never found anything that actually works. I'm currently on hydrochlorothiazide, a diuretic, for hypertension and it has no impact on my lymphedema.
I've used compression stockings for about the past 15 years or so. That's the only thing that helps, but I hate the limitations they impose on clothing -- pants only, no cute capris, no skirts or dresses, no shorts.
I'd love to hear from anyone who has had Vodder lymph drainage massage. We actually have a therapist here who is Vodder technique certified, but I'm not sure if it's a waste of money or not.0 -
I know of no medications or supplements that have any effect on Lymphedema. I don't know how Vodder lymph drainage massage differs from the manual lymph drainage massage that I have received at physical therapy. However, I did have favorable results from massage. I have also had laser therapy on my scars and that has helped to keep my swelling at a low level. Of course, I wear a compression sleeve and glove all day and I have a quilted sleeve that I wear at night. Lymphedema is a full time job.0
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Hi YThannah,
While reading your post, I felt like I had found a kindred spirit. I've been dealing with many of the same issues for about 24 years total, but the past 9 have been the most cumbersome. I'm on hydrochlorothiazide as well, and I've never felt that it has made any difference, although I would be a little nervous about getting off it.
I will definitely look up Vodder Lymph Massage, as I have only had the traditional massage therapy a couple of times. Although it made a good difference and fairly quickly, the 6 weeks of having to wear thick bandages every day of the therapy, along with the extra efforts to get to therapy, change my hours at work, and having to wear scrubs to work for that amount of time, (among other things), made it a pretty big pain in the rear. The great results could not be maintained totally, so it's been a sort of see-saw thing for me. I totally agree with mtlkate that Lymphedema is a full-time job. We don't get the luxury of forgetting about it and just doing nothing.
Lately I've found that exercising has made a pretty good difference in keeping the volume down at least in my lower calf, which is the very worst part of my leg, so I'm going to keep on with that. I'm so happy to have found a group that is geared toward losing some weight and at the same time, focusing on dealing with the extra issues we face with lymphedema. Thanks Georgiadiva!
As for supplements that help, I've not found anything, YET, but I am always looking. I've heard that taking at least 2 tsp. a day of Apple Cider Vinegar is good to keep inflammation down, but haven't been able to get into that habit yet. Has anyone tried that?0 -
I have compression socks to the waist beige and black. I actually have the lympodemia pump where the boots go to the top of my legs. I have primary lymphodemiawas born with it. My total sister hood of female elatives with dark hair have it not the boondes. My grandma was a twin her twin blonde did not have it NY grandma dark with red in hair had it. I used to be picked on terribly firvit. My first boyfriend said I looked like Miss America while driving in a car but when I got out it was all over. Nasty. I gave a friend who alyays comments about my kegs. I have had success in keeping them more normal looking due to weight loss. I kept 80 lbs off for 10 years and it helps. I wear nice boots at tines and nice longer skirts. I did gave lymph drainage one time but did not have money to jeep going. Before important events I usevkyvpump.v actually I had phlibitus so much that the insurance paid for it. Yea. I am tired of beating myself up about it. I net a man who said my legs where what attracted him to me. He saw me for a year and half now I found out he goes out dancing every night and gas kits if admirers makes me againfeel insecure so I pray as I go places where single older people are and there he is hitting on someone with normal kegs. I am praying that I don't let ego get in my way so I can keep going with my friends in the same circle. Life is lonely enough at 70. I don't want to sit home.0
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I love how our support group is growing and hoping our group will continue to grow. Having this group will help in so many ways. I have always felt alone with LE and this will help us not feel so alone.
I feel the same way about wearing support stockings and being restricted with the clothes I wear. Pants is all I wear. I'm hoping to get me some full length black support stocking so I can wear cute dresses and boots with them this winter. I've always had a hard time trying to find boots that fit me comfortably, but I want to dress cute.
I have not found anything that helps with LE other than watching the sodium and fat intake. Keeping the weight off is a big help! I'm still having a hard time logging everything I eat. If you all don't mind to share your food diary so we can get ideas and help each other out on suggestions at meal time. It looks like everyone has their Excercises in order. That's great!
My daily treatment is rebounding, body brushing, walking for about 30 mins. I'm getting new support stockings tomorrow and being fitted for night garments. I should have my Flexitouch pump soon. I'm really hoping this will take the swelling down. I haven't tried the Vodder therapy. What is the difference?
I'm so glad you all are fighting LE and getting your life on the right track. It is a full time job managing LE not to mention all the other things we have to do to take care of our families and work 40 hours a week at our jobs. My family and friends tend to forget that I have LE and forget that I'm restricted in going and going like they can, but I try my best to keep up. My legs just get tired easily and it's not easy to put on a swimsuit and go swimming and just wear your bathing suit or shorts all day. I have to stay covered up and hide my legs after being on them without support. I keep my support stockings on all the time. The beach isn't for me, but I love to go with my family. I have found some beach pants I can wear with my bathing suit and still be able to wear my toe less support stockings with them.
I wish all the time that I could just trade in my legs. lol but God gave them to me and I'm dealing with them the best way I know how.
I hope you all stay focused and keep logging your food intake and moving those legs and arms,
Smiles,
Michelle1 -
I should probably have clarified that I have primary lymphedema, lower limb, unilateral (right leg). Onset in my late teens, although flare-ups were intermittent at first, usually only in hotter/more humid weather or when I'd been sitting so that my circulation was compromised.
Anyway, back when I did a lot of research on the subject in medical journals -- this would be about 25 yrs ago, before the internet, lol -- Vodder lymph drainage was the only massage therapy that was medically recommended for lymphedema. I believe it originated in Germany -- coincidentally, this is where my stockings are made -- kinda makes me wonder if the Europeans aren't a bit further ahead on management and treatment than we are in North America.
I've been registered with the national association for years, I occasionally get email newsletters. And I'm on their list as a volunteer for any potential clinical trials... not that I've ever been contacted, lol.
Funny thing is that I've always been sodium-conscious all my life, thanks to having a father with early hypertension (and then my own developed in my 30's) and have never noticed much difference.0 -
I have IBS along with my LE and when I can't go to the restroom I see my swelling worse. I did have MLD Therapy about 12 years ago with the MLD Therapy and Bandaging. At that time I really did see a difference, but I took about 3 weeks off work and went to therapy about 3 to 4 times a week and kept myself bandage 24/7. It's hard to do that with our lifestyles now, so I'm hoping that my Flexi-touch pump and support stockings will keep me maintained. Another things is my doctors are unsure if I have lower leg edema or Lymphedema. My legs are real real tender to the touch and that seem to run in my family, but they have no swelling. Does that happen when you have LE?0
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I'd have to say I have more numbness than tenderness. If I don't wear my stockings, eventually I feel like I'm walking on a wooden leg.0
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I don't feel any numbness. My legs are tender some days worse than others. I thinks its just the inflammation flared up and I get heat in my legs at time.0
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Thanks so much, Georgiadiva for starting this group. Maybe together we can help each other find some solutions. I have a Flexitouch, and I can almost guarantee that it WILL help bring down some of the volume. It's pretty restrictive, though, and I find it a little hard to actually lie down and be unable to go anywhere for a full hour. I have found that you really do need to be horizontal to get the best effect from the machine.
I get the inflammation you described from time to time as well, especially when I'm stressed, which makes me feel like I've been run over by a truck. My leg gets swollen, red, and very hot along with my lower abdomen through the top of my thighs. It's not fun. Luckily, though, it only lasts a few days. It then takes about a week for my leg to go down a little, and seems at times that it never really gets all the way back to where it was. I know this is not a good thing, but my doctor has always told me to make an appointment while I have the inflammation, which is silly for me, since it lasts for only about a day. I take ibuprofen and push through it. I've seen other blogs where people have talked about being put on IV antibiotics with infections like this, and I feel very fortunate not to have been there (at least yet).
It's so refreshing for me to find that I'm not alone in all of this. I know that sounds silly even to say, because I've known that. It just seems so often that I'm the only person in the world who can't go to the beach, can't wear shorts or cute skirts and dresses, and I've worn only wide legged pants (trousers) to work since 2004. Wow! By the way, if you find any boots that might fit over a swollen ankle and calf area, I would love to hear of them, too. I've thought many times that it might be nice to find some nice boots and wear a longer skirt, but just can't seem to find the boots that will fit that plus my extra large calf.
I'm not sure what IBS is, but ever since the very last appointment with the cancer hospital back in 1989, I've had lymph drainage so that I have had to wear a sanitary pad of some type 24/7. I should have stock in one of those companies, as they have made a fortune off me! I guess I'm lucky it doesn't leak from any other place for the most part.0 -
You're welcome!!! I'm glad the support is here for us all. I really think this group is going to benefit us in so many ways.
IBS is Irritable Bowel Syndrome. It causes me to have constipation and then when I get nervous or upset for anything I then stay in the bathroom. When I’m constipated my legs swell because of the toxins not getting released. It’s no fun!!!
You described me to a tee, wearing wide legged pants. In the summer time I wear wide legged linen pants so I won’t be so hot. When I wear my bathing suit I have found some beach pants to wear over it . I usually wear black all the time at least my pants anyway and I wear black support stockings. I try to camouflage as much as possible.
When it comes to my legs hurting and being so tender to the touch and feeling like I have been ran over by a Mack Truck, then I know I have some kind of inflammation going on. I also have pain that shoots through my legs and hips. It’s a weird feeling. I take Motrin 800, and it helps some, but doesn’t help the shooting pain. This happens more around my monthly time. I sometimes have heat in my legs too when all this is going on. In the winter time my legs feel like death they are so cold. I don’t do cold weather either. It makes my whole body hurt, because of me being so tensed up.
When I find some boots I will let you know. I’m going to go to a plus shop to see if I can find some. I see bigger legged people wearing them. Next time I see someone with them on I’m going to ask.
You all have a great weekend,0 -
Hi all,
I also suffer from primary lymphedema which affects my feet and ankles and sometimes my lower legs. l too am on hydrochlorothiazide for BP but it does help move some of the excess fluid. My mother and her twin also suffer this issue but oddly enough no one else in our immediate family does that I know of and it didn't set in for my mom and aunt until they were in their late 20's. I've dealt with this for as long as I can remember and it is definitely a trial. I hate that I can't wear the cute shoes that my friends can and on the rare occasions I do find a pair I can't stay in them for long. I don't usually wear the compression stockings although I probably should but I did wear them when I was pregnant and they did help keep swelling down some. I've been to various doctors but never received any helpful info other than keep your weight down, eat low sodium, and elevate your legs at night. So I'm determined to do just that! I was excited when I saw this group because it is a lonely condition. Thanks for starting this group. I'm glad we have some where to share information, ask questions, and get support.0
