Lymphodema or similar?

runefinder
runefinder Posts: 26 Member
in Health and Weight Loss
Is there anyone on here who like me have lymphodema? Mine is in my legs and tummy. It is so frustrating when weight loss doesn't always show on the scales because the lymphatic fluid is hi. Feeling very fed up about it today xxc

Replies

  • Ricksh1000
    Ricksh1000 Posts: 88 Member
    I have it, but not bad. It affects my lower legs and in particular my left foot. Over the course of my weight loss i have noticed the swelling has lessened. I have a six-monthly checkup next week and i'm interested to see if it has improved any when they measure. I've lost 28lbs since i was last checked.
    Don't lose heart over the scales, you will see the weight come down if you are doing the right things regarding measuring food intake. It can only have a positive effect on the lymphoedema (at every check up they told me to lose weight)

    Regards,

    Rick
  • runefinder
    runefinder Posts: 26 Member
    Yes. I was told the less fat I carry the better. And the first three and a half stone fell off. My Dr told me I could be carrying up to two stone in fluid so I.never know how much fat I'm carrying. Oh of course I can see it so know I need to lose more fat. But the scales often don't show much of a loss even tho I'm counting every calorie I consume. Does your lymphodema go up.and down like mine? My legs can be absolutely huge. Then after rest they go down a lot but never completely. I.had my lymph nodes removed dye to cancer 15 yrs ago and have had this ever since. Thanks for replying xxx
  • Ricksh1000
    Ricksh1000 Posts: 88 Member
    Wow well done for losing the three and a half stone, that is an achievement!
    Yeh my swelling can be bad when i've been on my feet a lot, and when it's really bad my foot aches. Like you, with rest and elevation it improves, but only til the next day :/ Mine came along strangely! One summer (4 years ago) I was sitting with my son and noticed my swollen foot. I thought i had been bitten / stung. Months and months of tests later i had the test for lymphoedema and then diagnosed.
    With your weight loss so far it sounds like you're doing the right things. How long is it since you last lost?

    Regards,

    Rick
  • runefinder
    runefinder Posts: 26 Member
    Oh I've been yo yo dieting since the big loss which was six years ago. I.did lose another stone but it tool twelve months at weight watchers to lose it! I got very very disheartened and the leader didn't understand the fluid problem. So I left. I maintained my weight at 14 St. For a year then this year the scales kept going up and up even tho I was still counting points. Everyone said stop weighing yourself it's your lymphodema. But I was childish and stopped pointing and went up to15. 9
  • runefinder
    runefinder Posts: 26 Member
    Half my reply disappeared lol. I think I was writing a book lol. I'm down to 15 2 now. I'm sorry you have it too. It's s horrid condition to deal with. How's your weight loss going? Do you find it hinders you at all?
    Best wishes
    Mary Rose
  • Ricksh1000
    Ricksh1000 Posts: 88 Member
    edited September 2016
    Hi,
    It's great to hear you have lost again! I would use that loss and the resource here to spur you on; you are definitely going in the right direction :) I have read a LOT here about everyones' struggles whether it be medically-related, psycological, or just plain approaching weight loss all wrong. It just proves for the majority, weight loss can be hard initially. This is what kept me going.

    My lymphoedema: i try not to let it affect me and so live a fairly normal life, even with the swelling and aches. I tend not to wear the compression garments i get every 6 months. With weight loss, i've taken the same approach and discounted it from my mind. So far (touch wood), it seems to be going ok. I started out May 2nd at 13 stone 4 pounds and am now 11 stone 3 pounds (target 10 stone 6 pounds), so 11 pounds left to go. I go to the gym and do some weight training and a lot of stretching at home, but nothing major just to help. I am strict with food types and try to get a balance of nutrients each day.

    I have to be honest with you, until your post i did not consider the fluid retention side of things! But my weight loss has been pretty consistent so far. I will be asking some questions at my check up this coming Wednesday, I'm so glad you posted!
    Do you manage to get any excercise in? Apparently it is supposed to help greatly with our condition.

    Regards,

    Rick
  • runefinder
    runefinder Posts: 26 Member
    Oh I'm sorry I didn't see your reply till now. You are doing so well!! Nearly there. Yippee go you. I have to stop being a slave to the,scales. I really do. I've shrunk bit the,scales are stuck or even go up some days. It must be the lymphodema as I am being diligent with my diary. I.dont exercise atm. I have sciatica and am hobbling about.lol Waiting on an mri result atm. So when
    that is,resolved I will go walking
  • runefinder
    runefinder Posts: 26 Member
    Agh. Cut my message up again. Grrrr. Good luck for your appointment. Let me know how it goes. Xxx
  • Ricksh1000
    Ricksh1000 Posts: 88 Member
    Hi, sorry to hear about your back!
    I imagine you are feeling pretty frustrated at the mo, not to mention the pain. I hope it alleviates soon. I too am on the backend of a disc problem, which stopped everything for 8 weeks initially. Dieting is hard when you are inactive as I found out, I hope you don't lose the momentum of the progress you've made so far. Those scales, they WILL move, its just a matter of time and patience (not to mention your dilligence with the calories). Even through the pain, frustration and sometimes boredom of inactivity, you are still in control :)

    I went for my checkup today and got weighed as usual before measurement / visual checks.
    My last recorded weight was 87kg and today I weighed at 72kg (it was after lunch etc). The nurse was shocked and asked if it was planned weight loss! After measurement she said that I had lost a litre of fluid from my legs since the last measurement. With the skin check she said there was a lot less visual fluid (obviously hasn't gone away but a big improvement).

    So overall losing the weight has had a BIG impact. I know it will always be there but for the first time I know there IS something that can improve things. They tell you this every time, lose weight, more excercise, look after your skin etc. But until now I hadn't seen it first hand.

    Keep going with the diet, you will most definitely start losing!

    Regards,

    Rick
  • ronjsteele1
    ronjsteele1 Posts: 1,064 Member
    I have lymphadema in my left ankle/leg from a severe broken leg and torn ankle tendons and ligaments. During surgery they removed a lymph node in the process of trying to repair my ankle. Since mine is injury related I always have it but it does go up and down based on heat/cold, sodium, etc. It's not been a factor in my weight loss b/c there is probably only a pound or two of fluid when it's at its worst. What I do use it for is a gauge for how much water I'm holding in general. I am a water retainer all over just naturally so if my ankle and calf are really loaded then I know the rest of me is holding quite a bit of fluid as well (usually confirmed by my rings, etc). So for me, it's more of a gauge for how much water I should drink to try and shed some fluid, etc. I've only lost 15-16#'s so far but I would definitely say it has helped the fluid retention in my leg and ankle overall.
  • LizPalen412
    LizPalen412 Posts: 38 Member
    ronjsteele1 wrote: »
    I have lymphadema in my left ankle/leg from a severe broken leg and torn ankle tendons and ligaments. During surgery they removed a lymph node in the process of trying to repair my ankle. Since mine is injury related I always have it but it does go up and down based on heat/cold, sodium, etc. It's not been a factor in my weight loss b/c there is probably only a pound or two of fluid when it's at its worst. What I do use it for is a gauge for how much water I'm holding in general. I am a water retainer all over just naturally so if my ankle and calf are really loaded then I know the rest of me is holding quite a bit of fluid as well (usually confirmed by my rings, etc). So for me, it's more of a gauge for how much water I should drink to try and shed some fluid, etc. I've only lost 15-16#'s so far but I would definitely say it has helped the fluid retention in my leg and ankle overall.

    I basically could have written this - sounds identical to my situation, except mine is in my right ankle/foot. Also due to an injury and subsequent surgery back in high school. Looking forward to the weight loss having a positive effect on the swelling... I hate it!
  • mykaylis
    mykaylis Posts: 320 Member
    I had it in pregnancy and my husband has it chronically. I found it very painful. Activity helped but I could only walk if I got on my back and put my feet up the wall for half an hour. Then I would put on my compression stocking so and walk. Luckily mine went away.

    Cutting carbs into the keto zone made my husband lose 9 lbs in a week and his calves are noticeably better with no tight skin or inflammation.
  • mburleson0520
    mburleson0520 Posts: 4 Member
    I am glad to find others who have that mental struggle with swelling due to medical reasons. I have chronic DVT in my left leg from initial clots when I was 21 (I'm 26), and they messed with the lymph nodes while they were doing multiple thrombectomy surgeries. I have a stint in my groin, and my inner and back of my thigh swell constantly, and activities cause my calf and ankle to swell. I wear the LOVELY compression stockings that go up to my thigh, but I went a long time without wearing them recently. Seeing the scale jumping up due to this retention is extremely disheartening sometimes.

    I find taking inches and going by them instead of the scale helps. My roommate and I are the same height (5'8) and just an inch apart in all areas (except left leg and thigh), but I am 188 while she is 168. It can be maddening!
  • runefinder
    runefinder Posts: 26 Member
    edited September 2016
    Oh I'm so glad I came on here today. Scales three pounds up. Tears etc. It's obviously fluid. Xxxx

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