i suffer from lymphedema in my right leg for 11 years, its so painful and despite wearing support stockings my leg has gotten worse. my district nurse tells me to just 'pull my stocking up' after i told her its constantly falling down, i also suffer with leg ulcers on my left leg and again these have become worse despite being in compression bandages. The pain is unbearable. i have been having tests & scans to see what's causing my stomach to be so big and as yet nothing has been revealed to be causing this which is a good thing in one sense but then again if something shown up as causing the swelling at least the doctors could have something to work on at helping me.
i have heard that lymphedema can go in the stomach & as i hardly know anything about lymphedema despite suffering for so many years with it, any information anyone can give me would be greatly appreciated.
Thanks x
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missyE
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Unfortunately, lymphedema can progress to any part of the body. My husband used to have it only in the calves and now it's moved all the way up to his stomach. It looks like a huge tire around his middle, completely out of proportion to the rest of his body. If you push in, it has the spongy feeling, and sometimes the fluid shifts to where more of it is on one side or the other, and looks like he has a basketball lodged there. It's very uncomfortable, and scary. Are you taking diuretics? If the only problem is lymphedema, diuretics are not the best solution and can make it worse. But if there's another possible cause - like fluid around your heart or lungs - or any type of malfunction, however slight - then diuretics may be necessary. My husband was initially treated with a diuretic for high blood pressure decades ago and it just stayed on his chart as he moved around, even though other doctors added additional non-diuretic BP medicines and the diuretics were no longer needed. When he got some slight swelling in his feet, a new doctor added a 2nd diuretic and it sort of morphed out of control from there. Back then we never thought to question, as diuretics sounded like the right thing to do. His swelling got progressively worse, especially the last couple of years and the last few months it reached his stomach. He's using a product called Circaids on his legs, which are ridiculously expensive but work much better for him than compression stockings, and now we're looking at something for the stomach. He gets regular manual lymph drainage massage which also helps a LOT. If your insurance doesn't pay for it, you can also do the massage yourself or have someone help you. The idea is to gently work the fluid back up towards the heart. There may be instructions online, but if there is a way to post the sheet our therapist gave us I could do that here, or I could email it to you. Bottom line is, the lymph system can become congested just about ANYWHERE, including the stomach. Good luck, we know how frustrating it is.
Hi there Navijan could you please email me the lymph drainage instructions. I suffer from lymphodeama for 5 years and at first I was prescribed diuretics like your husband and then I saw a vascular surgeon after a a few years when those wouldn’t work who prescribed blood pressure medications and I had a specialist physician prescribe compression stockings and physio. And over the years my stomach has become so much bigger like I’m 7-8months pregnant and I always suspected it was some fluid buildup
Could you please email me the lymph drainage instructions, thank you. I have had it in my legs for 5yrs and finally was diagnosed. I use compression socks and the pump. Now my abdomen is swelling. I have discomfort in my chest and abdomen. I sm afraid of it moving more. I just started to see a physical therepist.
Me and three of my grandchildren have intestinal lymphodema. We do have a lot if bowel problems and I was diagnosed with ibs years ago as they couldn't find anything wrong with me. A low fat and dairy free diet does help. My grandchildren are allowed practically no fat and are tube fed at night to supplement their diet. I also have suffered for years and had no treatment just prescribed stockings about 7 years ago
Would be great if Navijan could post treatment on here as I don't think many suffers have access to treatment.
Hi bumpy1. Please visit this site which explains about MLD 'Manual lymphatic drainage' Also you can visit the Lymphoedema Support Network who can put you in touch with a specialist dealing with your problems. mlduk.org.uk/
You're most welcome I have secondary lymphodema which in my legs & pelvic region. Mine was brought on by treatment for cervical cancer but I also thought I had IBS due to immense pain but they couldn't find anything either. I've since found a group on facebook who tell me that my IBS symptoms are most likely to be related to radiation treatment which impacts. I've finally found some support through the group who are linked to a specialist dealing with side effects of radiation treatment. I do hope you and your grandchildren get the help you clearly need. Its invaluable for people like us
I've had this condition since a child (now 59) it started in one leg and then two then stomach and arms. Unfortunately I've never found any compression articles any good as for me all they did was move the fluid to another area and it turn made that area sore. It isn't the stockings that are making your ulcers worse?When I tried the stockings they either fell down and looked like Nora Batty or trying a smaller size I couldn't get them over my ankles. NHS I was told don't provide the massage drainage, they don't see it as a problem! private medical insurance would not pay for it as it was a known medical condition. I've managed to do the pushing and pulling of limbs myself and save to have regular massages which helps. Gentle exercise also helps.
This doesn't help your predictument im afraid but your not alone and we all feel for you. Whatever you try good luck with it and hope it works for you.
my (made to measure*) compression socks fall down too (I was due to see lymphodema nurses again after about 18 months, and was hoping to get new ones, but then my husband died and I had to cancel), and I am realising that when they come down they make ridges elsewhere and that is a big problem - they must be kept smooth - so constantly having to pull them up to make them smooth and supportive.
* the ready made one with elastic at knees was causing little varicose veins around knees to develop, as too tight - and I could not get full length stockings up.
Unless your district nurse is a trained lymphoedema nurse sadly she may be giving you wrong advice - as I had from a well meaning district nurse recently who was srtess a wound on my foot.
I just read someone elses reply to the problem of keeping stockings up so they don't slip and cause tightness which is frustrating and uncomfortable. They recommended a product called 'It Stays' which is mean to be used in situations like this for support hosiery. I'm going to mention it to my lympho'a specialist and see if I can give it a whirl. Maybe worth a try for you too? Good luck
I have lymphedema in both arms. It took me over a year to get correct fitting garments. I know the doctors felt I was a difficult person but I knew there must be something better out there. I ended up going to 4 different places. It does sound as though your stockings are not correctly fitted.
The other thing that has made a huge difference is losing weight.
I am in Uk, and asked for help with swelling in both legs following 3 bouts of cellulitis. I was referred by my doctor to a wound Healing Centre, which is now run by Healogics. I dont know if they are nation wide but it might be worth a look. I had bandaging, measurement, and attend now every 4 months, when 2 new pairs of stoclings are ordered...made to measure. I am feeling very lucky. I now have full length stockingswith excellent grip.They need to be washed everu couple of days to boost the elastication.My calves both reduced in size a lot, they helped witjh m,y swollen knees, but dont help the lipidema, which is genetic, and means my thighs are also very big.I have to say, that the impetus for all this came from me...I said that I was scared that my relatively active days were over and I really needed help.My Dr put it in the hands of his surgery ....I really hope you all keep finding out, and asking...the lady who has helped me also does manual drainage massage, but that is private and I dont have the funds.She just told me to stroke my skin fairly lightly up my body and towards the lymph nodes in my groin. I am fairly big around the waist....but also generally well over weight, so I dont know if lymphodema plays a part. I doubt it...as that pre dates the cellulitis. It is important to be measured for stockings and to try different types of knit....they need replacing at the most every 6 months. I ho[e this is useful to someone...If I discover more, I will pass it on.
I have lymphoedema in left leg and wear fitted stocking. I had a lot of problems with sagging stocking especially when walking outside. Then the clinic gave me a pot of "It Stays", basically a glue which your roll on your leg near the top of the stocking when you put on the garment. Sounds gruesome, but it does the job and I have had no skin sensitivity problems with it. The pot has lasted for several months and a google search shows that I can buy another pot for around £10. I can only say "It Stays" has certainly worked for me. Worth a try for anyone with sagging stocking oroblem.
Hi missyE, I was just reading about Manuka honey and it was mentioned that it can help with the healing of leg ulcers (but not the honey from the pot so there must be some medicinal one). It's meant to be put on the wound itself. My lymphoedema is inmy arm and I received a sleeve that I can attach to my bra. I just wonder whether there are stockings that can be attached to the waist and so be maintained high on the leg without them rolling down. When I complained about my sleeve rollingdown, I was told that I can use special glue. Can special glue be used for stockings too?
There are special honey based creams for ulcers, if you search bed sores, they come up. I know it can be a huge expense but I think the only way to go is made to measure. I am sure/hope if one pushes their GPs enough they should be offered them. They are the same as for burn victims. There is also a new brand, have not tried it but was told it is amazing, called LyMed. Will post update once tried.
Also we need to make sure that all our garments even if bought privately are VAT free.The guidelines are not very clear...
Best wishes to all of us, I only have mild lymphedema as I caught it early but it is a really debilitating and lifestyle limiting condition!
I just fold the top of my stocking sideways, like making a pleat, and then pin it in place with a nappy [diaper in America I think?] pin and it stops it falling down. Simple solution my lymph nurse told me... and it works!!
WestWalesPaul - using any form of metal clip on a compression garment may be OK for you, but should be used 'advisedly' and not as a general rule. If there is a lot of overlap, or excess fabric on a garment, then it needs remeasuring and replacing.
You can also get full stockings that are attached to a waistband like a pair of tights.. they still slip though and cause tightness if not measured correctly for them.
I have lymphedema in my left leg and find that my stomach swells if I stand too much but I have also found that using abdominal compression garments helps and the swelling goes back down quickly. The one I use is what they sell for women after they have had a baby. I also had trouble with the sagging compression stockings but I recently switched to Solidea. The compression is no more than full support pantyhose but I have much better success with my fluid using these. My leg has actually gotten smaller since I started using them. I use the full length.
The stockings are a complex design in that the amount of pressure decreases towards the upper part of the limb, thereby applying a pressure or flow in the right direction. Any additional pressure around the top of the leg by use of a garter or pleat might cause constriction of the lymph flow. My current stocking has the silicone garter built in which works well. Other than that body glue did the trick . If you search "staysput" on ebay you should find it.
There is a support and information group that is excellent called Lymphoedema Support Network. Also to read about Manual lymphatic drainage which is used to support the bandaging process in order to keep swelling down then you can look here: mlduk.org.uk/
I hope this helps
Please be aware that there is 'Primary lymphoedema' which you are born with but may not develop until later and 'Secondary lymphoedema' which can develop after treatment for cancer or surgical trauma. In either case they are treated the same and you will need a specialist lymphoedema professional to help you maintain and care for your condition. You can get further information from the online MacMillan support website or the Lymphodema Support Network for how to contact one. It is absolutely necessary that you get proper help. I know many people who think they can get away without specialist help and refuse to wear their compression stockings but they always come unstuck, you cannot! If you think you have been effected by cancer treatment I am part of a group on facebook called Pelvic Radiation Disease Association and we are survivors of treatment to have this condition and other symptoms to deal with who support eachother with helpful information. It's a closed group and you have to be invited after applying as it is not for publicity scams or spammers. I do hope that you all find the help you need. Please please find a specialist asap to begin improving your life. Val
So sorry to hear of the problems you are having. Do go to the Lymphoedema Support Network (LSN) information pages - you can learn a lot from them. I am concerned you have ulcers that are so painful and wonder if you should be checked for cellulitis - and maybe also for arterial ulcers which are more painful than those caused by varicose veins, say, and are relieved when your legs are down. If it is cellulitis you will need antibiotics. The swelling can go upwards to your thighs and stomach and it may be a god idea to discuss with your Lymphoedema clinic if they can suggest how to deal with it. If you don't go to a clinic, I suggest you ask the LSN to advise you where the nearest one to you is, and ask your GP to be referred. I found The LSN are very helpful over the phone. All the best!
Have your Dr. do an echo to see if you have pulmonary hypertension. My stomach remains swollen, and there it was for 2 years, before they found it. No one looks at the pulmonary artery when nothing is suspected, as in my case, but I carry a football in my stomach. I use ginger oil on it, and it helps a lot.
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I have secondary lymphodema which in my legs & pelvic region. Mine was brought on by treatment for cervical cancer but I also thought I had IBS due to immense pain but they couldn't find anything either. I've since found a group on facebook who tell me that my IBS symptoms are most likely to be related to radiation treatment which impacts. I've finally found some support through the group who are linked to a specialist dealing with side effects of radiation treatment. I do hope you and your grandchildren get the help you clearly need. Its invaluable for people like us 
Newbie here - but not to Lymphedema - how can you know if you have primary or secondary Lymphedema? (and LVA)
Galtyboi just giving an update.
First Meeting with the lymphoedema and cellulitis nurse/Advisor .
