Lymphedema is getting worse in my legs as I get older: Tips?

Hello @msm123, Welcome to Connect. I noticed that you posted this discussion in May. Sorry I didn't see it sooner. I'm 82 now and was diagnosed with lymphedema in my legs back in 2018 when I was a youngster 🙃. I wear compression socks as a treatment. When I first started with them they worked great to control the swelling during the day but were really difficult to put on in the morning and take off at night. It took me about six months to find a solution which was to buy compression socks that have zippers on the side.

You mentioned it's getting worse as you get older. Do you wear compression socks? Does the swelling go down at night? Have you discussed the getting worse with your doctor? ...sorry for so many questions!

msm123,

Sorry to hear. I am new I am new to lymphedema, whereas you have been dealing with it for decades. When was the last time you saw your therapist, and did they have any suggestions? Maybe increasing the level of compression (eg. 20-30 mmHg to 30-40 mmHg). Just a thought.

I’m sorry your lymphedema appears to be worsening. My therapist prescribed Juzo pantyhose for me, which has been very helpful. Mine is 20-30. I replace them every 6 months. She also measured me for, and prescribed, a Jobst knee-high night garment. This one only needs to be replaced every 2 years. Medicare covers most of the cost.

For a while I was using a Tactile Flexi-touch pump for an hour a day, but I don’t seem to need it now. I will, however take it with me for long road trips or airline travel. Medicare also covered this.

Wishing you all the best!

I have lymphedema also and leg wraps but it doesn't do much good. Can anyone recommend a good online store for lymphedema items? Open to trying new things if anyone has a suggestion, Thanks in advance!

@swf4263 Comfort Care is who I use. Theybbill your insurance company. I use Solaris/L&R velcro wraps.
I also use Tactile Medical for Flexitallic System.

I am relatively new to lymphedema therapy, wearing therapist-ordered thigh high compression stockings daily and a softer night stocking. These were all ordered by the therapist from comfort & care; manufactured by Jobst. I also have the Velcro wraps for day or night wear options. A pump is under consideration based on the results of my next check-in.
My instructions from my OT are to reorder the stockings in 6 months if they are working ok. If not, I need to get my doctor to write a new script for lymphedema therapy to be re-evaluated by the therapist. It sounds like this is where you are at. Good luck!

@johnbishop
I was same as you, but finally found a lymphedema clinic a in Savannah, Ga. at Candler Hospital, where they are great, I am 81 , they did the wraps there two times a week for several months, then ordered stockings and wraps from tactile, after that they prescribed a machine for me, which Medicare paid for. The therapist there I had was great, and the therapy tec from Tactile came up from Jacksonville, Fl to demonstrate and teach me how to use machine, this has helped me greatly, now my legs very rarely hurt and when I get up in the morning they are half the size they used to be and I don't wear anything at night, and some days I can get by just wearing the long socks for the day. The tech from Jacksonville, had medical training that some of degrees I had never even heard of, she was very knowledgeable and wanted you to ask her anything you might want to know, or call if something else came up. They call from there and check up with me to see how things are. I had gone to ever type specialist you could think of, till I found the advertisement from the hospital. So if you need help maybe you could call there and they could refer you to other clinic's like theirs. I have even lost a lot of weight. And things are so much better now. Hope this helps. It has been a life changer for me after all these years dealing with all the swelling especially at ankles.

@mabet
How can you test for lymphedema? What doctor do you see. My right leg has been slightly bigger than the left for years, but as i get older, it’s getting worse. I do have osteoarthritis in my knee and shin.

I went to about 6 different kinds of specialist's plus my family Dr. who had kept saying don't worry about it, { have changed Dr.'s now, and she is great.} But my legs kept swelling and my feet were so swollen it was hard to wear shoes, and I would buy a size larger than usual in shoes, then my legs started really hurting and burning , I was miserable, then when my legs got worse I got some type infection because they started to have rash's that were itching me to death. So after none of Dr.'s knew what to do I started looking on internet for any type information. I even called Mayo, in Jacksonville, but the receptionist did not speak English very well at all so I never got a correct answer, even though Mayo has a Lymphedema department or clinic, and about that time saw a ad from Savannah, at Chandler Hospital about a clinic and I called right away and got an appointment. I didn't have to see a Dr., there is one or more therapists working there, that are specializing in just Lymphedema and they did everything for me. I went twice a week for several months, and he would clean and wrap my legs with elastic bandages, I was to keep them on till he redid my legs each time, and gradually my swelling started going down, and each visit he would do specific measurements and when my legs got down to a certain size he put in an order to Tactile Medical in Jacksonville, for long elastic socks and wraps, with Velcro, then I wore those and my legs went down even more, then he put in an order for a machine that has two legs with zippers that come up to my thighs, and I also got the trunk part that also zips up and it is hooked up to a machine a little smaller than a regular shoe box, it is pre-programmed for what was recommend for me. I sit there and use leg part for 45 mins and trunk part has a different time amount, you can use them together or separate. A highly trained technician, with all types of degree's ,I had never even heard of brought machine and did all settings to my needs, that way all I do is push a button and everything is pre-programmed. Before you get machine they take all kinds of your measurements, where it is made to fit your body. and when machine came in, she came back and showed me how to use and answered all kinds of questions and things, she leaves her phone number if you need other information, and they call along to make sure things are good. The long elastic socks I got are very elastic, is all I can say, but tech at Chandler had already shown me how to get them on without a lot of trouble, they are not hard to get on like the surgical hose are. when I get up in the morning my legs are half the size they were. Now they don't hurt and haven't had anymore rashes. I can't say enough good things about the clinic and techs, I got some of their brochures to pass out to other Dr.'s., and the tech's at Chandler , spoke with my current Dr., as she wanted information to help other people when they come to her with same problem.
I know I did not answer question about how you know, ..........different Dr.'s had looked at my legs and told me what it was but, did not know what to do. I do not wear anything to bed , just use machine in evening, and put socks on next morning with wraps. But have learned , some people, if condition is not treated can have some very serious medical problems resulting from condition. After I already found information I went to a foot and ankle Dr. and they knew about the clinic. Where none of all specialist's I went to, knew what to do, they just ran different tests. Sorry was so long winded, but was trying to give details that might help you. Don't know where you live but if near a Mayo, you might try them.

@sizwhatitiz2 My lymphedema in the legs was diagnosed at Mayo Clinic Rochester. I had all of the tests mentioned on the diagnosis & treatment page here - https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687. The most memorable part of the tests for me was the Lymphoscintigraphy - During this test, the person is injected with a radioactive dye and then scanned by a machine. The resulting images show the dye moving through the lymph vessels, highlighting blockages. After they dye was injected in my toes I had to walk around for awhile before having the MRI.