1. Community
  2. Health promotion
  3. Other Conditions and General Health

Lymphedema advise

Posted , 4 users are following.

Cagsy48
Cagsy48

I saw a consultant in manchester around 4 months ago who diagnosed me with Lymphedema. Although I am overweight he did not link me lymph to this he gave me a letter to give to my GPs for creams and to order compression stockings I got my creams and was waiting 4mths for stocking I never got after complaining I got told I need special measuring and that would get sorted well a few days ago my GP rang me telling me she had spoken to some lymph clinic in Liverpool and they said I couldn't have the stockings till I lost weight but the original consultant prescribed them my legs are dreadful they also leak really bad , I just don't know what to do now ? My mother had this same condition and I've read it can be hereditary. Can anyone offer me any advice ?

0 likes, 24 replies

24 Replies

Next
  • ladyjack51
    ladyjack51 Cagsy48

    Posted

    Yes Cagsy48

    There is hope...I just you can find it where you are. My leg was 3 times it's size for 3-4 years and then leaked like crazy and caused disgusting wounds. I went to the lymphedema clinic in the hosp that is for low income people that I've been going to for 4 years while waiting for my disability to get approved. She told me I just had to lose weight. I have a hanging belly which I have had since my first pregnancy 25 years ago but now due to immobility, I'm a big girl. That pressure helps to crush your lymph glands in your groin so the fluid cannot get back out of your leg or legs. I was devestated bc i know there are people much bigger than me that manage this. The problem is...there are not many folks certified in lymphoedema and that's a huge problem. But I had a wound turn black and I rushed to a better hosp close by on Aug 29th this year. They admitted me and I just got out on the 7th....Labor Day. But they have a lymphoedema clinic and a wonderful therapist who did a lymphoedema wrap on my leg and it made my leg go down to almost normal size. And so it doesn't leak now and when my wound is totally healed I'll get compression stockings. She taught me how to lightly massage the glands in my neck and collar bone to help drainage in my leg. I lost 36 lbs in fluid and alittle fat bc i could barely eat anything 9 days. I have hope now and I'm going to transfer everything to this hosp and their clinic. That person that told you just lose weight is not fully trained and you need to go to another hospital to find out about their lymphoedema dept. I know how you feel....my husband bandaged me every single day and they would get wet after about 12 hours or so depending on if I was on my feet alot. It was a hot mess. And we used huge abdominal pads but still got wet. I hope this helps...I'm thanking my God now for finding this hosp bc it changed my quality of life and is restoring hope. There's hope for you too.

    Ladyjack51

    • Cagsy48
      Cagsy48 ladyjack51

      Posted

      I'm in the United Kingdom and our health service is a lot different to yours ,I'm losing weight but my Lymphedema is hereditary
    • ladyjack51
      ladyjack51 Cagsy48

      Posted

      Cagsy48,

      As I wrote...I was with a hosp for low income...I had no insurance either. But if you have an emergency like I did on the 29th, any hosp is obligated to treat you, money or not. So the other hosp was a private one but changed my life and they were so nice that they are doing free followup visits with me until my Medicare kicks in. You have to put yourself out there and look. Don't just accept what that woman told you bc she is wrong! Hereditary or not...you still need treatment bc it is a life long disease. Doesn't matter how you got it. Of course losing weight will help but you can be fixed now! I'm living proof.

  • patty42962
    patty42962 Cagsy48

    Posted

    I have had this for around 6 months now and my regular doctor wrapped my legs with bandages once and I lost 7 lbs in water weight and my legs went down 3 inches in my calf. I found these wraps on line that are made out of the material wet suits are made of and really really strong velcro. They come with the part for your foot and a separate part for you legs. I wore them and last week  and my calves went from 23 inches to 18 1/2 inches in about 12 hours. You put them on snug and after about 6 hours they start to get loose so you just tighten them up again. I work sitting down all day and that is the worst thing for me because i am not moving around. They just ache all day until i can put them up when i get home. I am going to a weight doctor on September 28th and see if loosing weight will help any. I sure dont want to spend the rest of my lift wearing these wraps so my legs can go down. I still am not able to wear my shoes because my feet swell and i cant get my feet in any of my shoes. These wraps cost $110.00 per leg but are well worth it. Sometimes i wear them to work so i dont hurt all day. I will get the name of them and the e-mail address of where i bought them after work today and send it to you.
    • ladyjack51
      ladyjack51 patty42962

      Posted

      Patty42962,

      Good to know...but you can achieve the same thing with ace bandages with kerlex gause underneath for a quick cheaper fix. Once you get the leg down then you can buy or be fitted for a compression garment or stocking. My leg was 3 times it's size and like you went down overnight. But we really need the teaching that goes with this disease...like massaging your neck and collar bone areas and so much more. What you did is great but a bit pricey. I just wanted to put it out there that it can be done cheaper. I had a desk job too for years...that's the worst job for lymphoedema patients. It helped to make my leg huge. And once you get cellulitis it's really a nightmare. I had to stop working....filed for disability here in the U.S. Anyway...good luck to you. Ladyjack51

    • Cagsy48
      Cagsy48 ladyjack51

      Posted

      I've had Cellulitis dozens of times I also have to sleep with plastic sheet under my legs because they leak so much I just want some help from my doctor that doesn't seem to care
    • ladyjack51
      ladyjack51 Cagsy48

      Posted

      I totally understand...but clearly they don't know how. There are few who specialize in it and most Dr's don't know much. So...you have to change Drs. Or go to the ER. I also slept with layers of bandaging and still had to put my leg on those "chucks" with the waterproof sides. You just need your leg wrapped tightly and properly and it will go down overnight. If it goes down, it doesn't leak. If it doesn't leak, then wounds heal and you can finally get a compression stocking on. That's how it works. But you need a.professional lymphoedema therapist to wrap it that initial time bc they know what they are doing. She even wrapped my huge sausage toes and they went down with the rest of the leg overnight!!!! Listen to me...go somewhere else. Living like that is making you an invalid and your quality of life really sucks. Sometimes I wanted to cut my leg off or just end it all. But I found help and now I know how wrong they were and your Dr is wrong too. They don't know how to treat it. Please listen to me if you want to get better.

      Ladyjack51

    • patty42962
      patty42962 ladyjack51

      Posted

      ladyjack51 did you ever get on disability? It is so hard to get on disability i was just wondering if you are on it yet?
  • patty42962
    patty42962 Cagsy48

    Posted

    Cagsy48

      The company i got the wraps were from Spectrum Health Care. The product is called BiaCare:Comprefit BK Compression wraps for legs. The phone number is 1-888-210-5576. I use them alot because everytime i have the doctor wrap my legs it costs me 110.00. My co-pay is 55.00 per visit. I have them put on and then taken off a couple days later. I now have my husband put them on and the next day i take them off and i own them. They are great and I can wear them to work also. I am lucky my legs only leak internally not on the outside. I take lasix 20 mg daily to help get the water out. I cant wrap my own legs. Listen to ladyjack51 she knows what she is talking about. I live in Palmdale California and dont know of a doctor that specializes in lymphedema. My doctor said I have Venous Insuffuciency. I dont know if that is different.

    • ladyjack51
      ladyjack51 patty42962

      Posted

      I have poor venous insufficiency too patty53962. It just aggravates the lymphedema bc it's not circulating correctly if you have poor venous circulation. You'll tend to get varicose veins too. Thanks for telling her to listen...there is hope.But you're right, Dr's don't specialize in it but hospitals have lymphoedema depts or clinice and only certified therapists can help you. And there aren't many. But they are associated with the hospital's so she has to call and check a few but definately leave where she is bc clearly they don't know how to help her. I went thru the same thing, but thankfully found this great help at a different hospital.
    • ladyjack51
      ladyjack51 patty42962

      Posted

      What you are doing is great Patty bc only compression will manage this disease. You have to control the size or it leads to hell.
    • patty42962
      patty42962 ladyjack51

      Posted

      That is why i bought the leg wraps so I can use them whenever I want. A couple days ago my calves went from 23 inches to 18 1/2 inches in about 12 hours. I wish they would stay that way. The minute i go back to work they swell up again. Did you ever get on disability???
    • ladyjack51
      ladyjack51 patty42962

      Posted

      Yes...I was approved in July and about to get my check I believe. It goes back 4 years bc they denied me in error the first time. It's been a long hard road. But I also have COPD...However the lymphoedema and cellulitis was a big reason why I can no longer sit at a desk. In the first go round they said I could. Crazy!!! That's the worst job for it! Honestly if you have hardcore lymphoedema and have had the swelling and cellulitis with wounds, you probably should not work anymore bc you have to elevate your legs alot...wrapped or not. The judge was apologetic that I was denied the first time, but they always deny the first time.
    • patty42962
      patty42962 ladyjack51

      Posted

      SO FAR I AM LUCKY I DONT HAVE ANY SORES. MY LEGS AND FEET JUST SWELL UP , ESPECIALLY AFTER I AM AT WORK. IT IS BAD BECAUSE I AM TOO YOUNG TO RETIRE AND TO OLD TO GET ANOTHER JOB. I CANT STAND ALL DAY BECAUSE I HAVE A BACK PROBLEM SO I DONT KNOW WHAT TO DO.
    • ladyjack51
      ladyjack51 patty42962

      Posted

      I know exactly how you feel...I was only 51 and employed when I had to stop bc i was taking pain pills too and that wasn't great at work either but I would go home at the end of the day and could barely function till the next morning. They got the best of me. As long as you keep the swelling down you probably won't get cellulitis which causes the wounds so just keep that in mind. But if you have a husband or anyone that can carry the load for a while...I would seriously consider disability bc this disease is for life and sitting at a desk makes your fight very difficult. You need to have your legs up as often as possible. The lymphatic fluid in your body is the trash fluid and it can easily set up infection if it can't circulate and be disposed of normally. I'm with ya girl....praying for ya too. Ladyjack51
    • patty42962
      patty42962 ladyjack51

      Posted

      You know if so many people have this why do so few doctors know much about it. Do you have your legs wrapped all the time? I find that the swelling goes down really fast when they are wrapped but it doesnt last long. Maybe when i see this weight doctor on the 28th loosing some weight might help. I have found that being heavy doesnt do me any favors. I was always heavy but since over the last 3 years I have been taking insulin i have put on almost 50 lbs. I have never been this heavy. I have a 2 story house and I swear everynight someone keeps adding more stairs to this staircase.
    • ladyjack51
      ladyjack51 patty42962

      Posted

      Bless your heart...lol...at least you CAN do stairs!! I haven't been able to do that in years! However it might be a bit easier now since my leg has gone down. Yes...weight has alot to do with it...especially if you have what I call a hanging belly that is kind of a big flap hanging. I have had that ever since my first birth. Some women get that, some dont. But your weight and the pressure of that flap on your groin area when you sit especially, crushes and closes off the main place there where your lymphatic system circulates and distributes that waste fluid. The biggest area of distribution is the left side and groin but it can go into the right too as you say it is in both your legs. I only have it in the left leg but my right leg was just beginning to swell a bit before I went to the hosp. Now it's fine. It helps to take a water pill too. But that alone won't open up that squeezed area. It also has to do with circulation period and I have always had poor veinous insuffiency in that left leg. They gave me a belly binder that I can wrap around me to help pull my belly up. Haven't used it yet but if I need to I will. So...that's an idea too. I have no clue why Dr's don't choose the lymphatic system as their specialty more often...it's only licensed therapists that manage it usually under a Dr's supervision. Crazy....
    • patty42962
      patty42962 ladyjack51

      Posted

      FOR SOME REASON MY RIGHT LEG IS MUCH WORSE THAT MY LEFT. I DONT KNOW WHY THAT IS. WHAT IS THE DIFFERENCE BETWEEN EDEMA AND VEINOUS INSUFFIENCY???
    • ladyjack51
      ladyjack51 patty42962

      Posted

      Edema simply means swelling. Veinous means your veins and of course insufficiency means not adequate or not enough. So...veinous insuffiency means your veins are not able to circulate blood as fast or as adequately as they should...usually it's in the legs. You may get varicose veins which is a sign of your body trying to use smaller veins and find other paths to circulate the blood but they get overloaded and burst or show at the skin level. Does this help? Ladyjack51
    • patty42962
      patty42962 ladyjack51

      Posted

      I UNDERSTAND. YOU SURE KNOW ALOT ABOUT THIS STUFF. DOES IT GET WORSE AND WHAT HAPPENDS IF IT DOES? CAN I JUST KEEP WEARING THE WRAPS TO STOP THE SWELLING. I HAVE SO MANY SHOES THAT I CANT WEAR ANYMORE BECAUSE MY FOOT SWELLS. WHAT DO YOU DO ABOUT THAT????
    • ladyjack51
      ladyjack51 patty42962

      Posted

      I have a medical background...I only lacked a month finishing nursing school so I have a huge interest in all things medical. I was young and dumb and didn't get to finish...worst mistake ever. But I've worked in the business end of Healthcare ever since...just to be close I guess.

      If you keep the swelling down, you probably will not get infection or cellulitis and then wounds. So keeping the compression stockings on is the key. If you get your legs down to normal, you can be fitted for a stocking so you won't have to wear a heavier wrap. You need to find a hosp with a decent lymphoedema therapist like I did and she will do a lymphoedema wrap on your leg...just takes overnight really but she wraps each individual toe so it gets all the fluid out of your feet and legs. But it takes a licensed therapist who knows how to do this kind of wrap....most hospitals have at least 1 or 2 people who do this. Your Primary Dr can refer you. That's all it takes. Until then, you have got to get your legs up above your heart to get that swelling down. They will teach you soooo much. I was a bit boggled at first bc i thought it was alot...but it's not really alot once you understand and you are really blessed you don't have wounds yet. Now is the time for you to find a hosp with a therapist who does this!! Bc once you get leaking skin and wounds...all that has to be treated first. Plus...it's disgusting.

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.