I am 8 years out and have had lymphedema for about 20 years. I had reached goal and underwent chemo and radiation for stage 3 cervical cancer. The professionals told me that I needed to eat carbs to avoid severe nausea. I trusted them and started eating fruit and rice cakes. Within a few months I gained 50 pounds. I have since given up the carbs but the weight will not come off. There are days that I wake up and my legs are so big that I have struggle with the compression garments unbelievably. I have to wonder if lymphedema ever stays under control for more than a few years. I had an arm lift this past Christmas, now my arms seem to be showing signs of lymphedema, although the surgeon disagrees. I am wearing compression sleeves and don't see any improvement.
Anyone have any advice or feedback?
please forgive me as I'm new to this and I'm not exactly sure how things are suppose to go :)! However, I see that you have been a trooper dealing with all this for 20yrs?? I'm amazed you haven't flipped out on someone yet j/k but seriously I've only been dealing with this lymphedema and cellulitus for about a year now and I can't seem to get a doctor to listen to me. I have spent a week in the hospital about 11 months ago and since then my legs have gotten 10 times the size and I've got sores or hair follicles that seem to be infected and on my left leg it's sooo red and swollen I can't even put any pressure on that leg at all. I all they seem to do is give me more antibiotics and send me home and tell me to put my legs up. I literally am at least 80 lbs heavier because of the lymphedema and no comfort in sight. I don't leave my house at all because people that knew before look at me as though I'm diseased and I haven't been able to work because nobody wants the liability in case I fall or have an episode. Literally I'm at my wits end and I don't have a clue where to start! Any help or ideas for this woman in Michigan would be a great help :). I want to say you are an inspiration to someone like me because if you can handle this horrible disease for as long as you have then I should be able to get it together and stop feeling so sorry for myself ;)!! Thank you so much for listening to me whine and complain hehehee! I'm just afraid if I don't at least joke a little then I'll start crying and won't be able to stop .... Thanks again for allowing me to get some of the stress off my chest and ask some questions.
You need to know that there are steps to preventing a cellulitis flareup. Keep you legs extremely clean, don't wear the same garment two times in a row without washing. Use non fragrance detergents. Keep your legs elevated as much as possible. Prolonged use of antibiotics will cause you to become immune to them. When you are not in flare up, moisturize your legs with non fragrant moisturizers and wrap in saran wrap. Sleep with a pneumatic pump (but not when you are in flare up) See a vascular surgeon to help you with advice. Stay away from chlorinated water as well as lake or ocean water. Do not scratch yourself it will become infected or cause a flareup. If you start itching start more frequent washing, drying and elevation.
I just wanted to say thank you for giving me such great advice. These are the things I believe a doctor should have told me a year ago when this started and then I feel as though it wouldn't have gotten out of hand as badly as it has. Just in the few paragraphs you wrote , those have given me more direction and hope that I have more options then just simply taking antibiotics. I have ordered compression socks and sleeves on my own although to be honest I have no idea what I'm ordering or if it's even the right ones for me and as you can imagine that gets rather expensive but what options do I have when I can't seem to get anyone to listen and do something about my expanding legs and now the swelling is moving up mtp my high thigh area and I venture to guess even my lower stomach seems to be showing signs of swelling now! So you can see why it's so important to find out as much as I can as quickly as I can cause knowledge is power! Please forgive the spelling, this might be a smart phone but I swear it's really just got a mind of it's own lol! Anyhow thanks again for all your help and please ship me any info you might find that I can use :) ....thx Tonya
Make sure you find a vascular doctor that has a lot of experience with Lymphedema, not someone who is just learning. If you build up an tolerance to antibiotic you will be S. O. O. L. and could develop MERSA. Deadly combination. Keep it clean and dry. Be extremely careful not to use compression that don't extend far enough past the area. The elastic ends could cut circulation making it worse. I purchased a full body length compression garment with full length sleeves so as not to bind anywhere. It has an open crotch for convenience. You will need a few, so that you are wearing a clean fresh one everyday. You will be wearing them 23/7 to keep the swelling under control. They are sold on Ebay. Order your first one to find the right size. I wear an XL sized pant, the garment I wear is a 2XL. It should not be so tight as to cut off circulation. Body Shaper Compression Garment Long Sleeve / Post-Op [White,Ankle,2XL]
Item# 321155270132 Also keep in mind that certain spices and foods can cause swelling. Be aware of how you feel after eating. Keep a food log to track what might cause a flare up. Keep your weight under control the best you can.
HI, saw your post this morning. I have had lymphydema since 2008, ayear after my surgery.Iwore compression garments day and night and day. It was kept under control until this year after new job that kept me sitting for 6 hours a day for 6 months which caused me to become immobile. because of the malabsorption of proteins which would help push the fluid out, I will have to have a revision to absorption of this nutrient, With my experience is to take in more protein and trust me when I say, elevation elavation, elevation.I bought an elevator pillow from dr leonards and elevate my legs at bed time. ELEVATION, PROTEIN, AND COMPRESSION GARMENTS ARE THE KEYS TO THIS SWELLING. Pump those feet and watch the swelling go. please be faithful in protein intake. Vitacost.com has 28 grams of protein in 2and a half ounce of fruit flavored juice that can add more protein. Mango,berry, strawberry banana arw3 of the flavors they carry. God bless in your success.
I wear my full length compression garment 23/7, eat protein I believe in excess, my problem is elevation, I work 8 hours a day at a desk job, only get to elevate my legs while home which I try to get at least 11 hours a day. It is not considered to be a disability issue in order to stay home more. I am frustrated to no end.
Carbs make my lymphadema much worse. If I even eat fruit, my legs will swell more. I can easily gain 10 lbs of fluid over night. Have you had Lymphatic massage? It helps a lot. I thought I was gaining but it was just fluid. AFTER I had my thighplasty my legs swell even more, but if I watch my carbs, it lessens. My doctor says, I have "dependent lymphadema" since it's much improved after having my legs elevated each night.
Lost 271lbs with my LapBand in 22 months! My Band malfunctioned and I gained almost 42lbs and then revised to the Sleeve 9/24/12! I lost another 140 lbs with my Sleeve! Loved the LapBand and Lovin' The Sleeve!
It can be considered a disability and used to request work from home. Only you would know if your employer would be open to such a request vs it causing more of an issue. I used keep a foot stool under my desk at work, wasn't always comfortable but allowed some time for leg elevation...but not above heart. Do you have a pump to use at home, or are you able to wrap yourself? That would provide. Come garments just maintain vs treat. So if you've experience more swelling you might need pump or massage and wrapping as you said you've had reduce the swelling then wearing the compression garments maintain the reduction. Any surgery can trigger LE, I think some surgeons don't like to acknowledge LE because they think it's a reflection of their skills, which it is not...LE can't happen for various reasons.