Thursday, 22 March 2012

More compression

Monday I went to see my fitter about my Jovipak nightgarment. I wanted to discuss the fact that it's not really making much difference. He was concerned. It is a new product overhere and he had not had this problem before. I don't think he has sold all that many of them yet. He would contact Jovipak in America right away and see what they thought, I'm still waiting for news from him. He said they might take it in a little and see if that would help. I mentioned the Mobiderm nightgarment to him, a lighter garment with little foam squares that I have been thinking about for a while, but that dream ended when he said I would have to do a full wrap over it to get anywhere.
Just to check, he measured my leg and then got a concerned look on his face. The measurements had gone up quite a bit on my lower leg since I got this stocking and the nightgarment. The stocking can't hold things back. I might have to get a knee high, grade 1 to wear when at work where I sit a lot. Darn.

I also mentioned my not-so-good-anymore foot to him and showed him. He said it doesn't have to be Lymphedema but could be venous insuffiency. He said that it is not all that common to see Primary lymphers getting it in both legs. I don't know about that, as I think there are many out there with both legs affected. Perhaps most of them have it from Birth. I'm thinking "who cares if it is venous insuffiency or Lymphedema if I still have to wear compression stockings", but apparently with venous insuffiencency one needs less compression than with Lymphedema. Whatever. Anyway, he told me to cut an old compression stocking above the ankle and use it at night for a while to see if that will do it. I haven't gotten around to do that just yet but hopefully I will manage this weekend.

11 comments:

  1. Hello! i have had lymphedema in my left leg for 10 years. Doctors claim it's congenital. I live in Africa where the disease is quite uncommon and so doctors do not know a lot about it. since it's a 3rd world country, hospitals are not assessible here. each time i go to the hospital, very have to explain my disease all over again and take tests to ensure it's not elephantiasis (a tropical disease that causes legs to swell). so for the past 10 years i have not been treating it. out of frustration, i have given up on going to the hospital about it and just take pain killers when it hurts too much. i bought some pressure stockings when i travelled to france but i have not been wearing them because of the heat and dust here and the fact that it cuts into my ankles and causes my skin to itch). will my condition get worse because i'm not treating it? i have never had manual lymphatic drainage before because they are unavailable here. i looked at some pictures of mine from 5 years ago and it seems the same (about thrice the size of my right leg) thanks

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    1. Hello Kuks, thanks for your comment and for reading my blog :-)
      It must be so frustrating living with a condition and nowhere to get treatment, my heart goes out to you. There are things you can do to treat yourself though. It may take a little time to get the hang of it but I am sure you would see results and feel much more comfortable. You can learn how to perform MLD on yourself, it is not complicated. Check out the 2nd link in the linklist here on the blog. There are also a lot on YouTube. Also, it would be a bit tricky if you don't know how it is supposed to feel but you might be able to teach yourself how to bandage yourself. You can buy the bandages etc. online, let me know if you want me to show you the exact things you need.
      It is hard to say if it will get worse without treatment. Chances probably are it will, but it can get worse even with treatment. It is an unpredictable condition. I do think compression stockings are the most important. I understand it must be horrible wearing it with the heat and the dust, but do you think, you could give it another try? Perhaps the one you got in France is not the right size, material etc. for you. Have a look at www.lymphedemaproducts.com, they have many options.
      Warm regards, please let me know how it goes.

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  2. thank you so much for the suggestions, very helpful. will start watching the self- MLD videos and also search for options in pressure stockings. i didnt realize that the disease was unpredictable and could get worse or better. i was told by some doctors here that it would definitely get worse so i was kind of apprehensive and i had given up hope. but listening to you say it could go either way has made me hopeful and increased my desire to do all i can to stay healthy. Will certainly let you know how it goes.

    Wonderful blog you've got here, by the way!

    Best wishes

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  3. Hi! i returned. thanks for the self mld videos i've been trying them and they definitely make me feel better. please this is kind of unrelated but i wanted to know if having lymphedema causes you to weigh heavier on the scales? would you weigh more the more your leg swells and if so how can you calculate your true weight in order to know your bmi? (i've been checking my bmi because i learnt the more i stay within my ideal weight range, the better my condition will be). thanks

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    1. Hi again, Kuks :-)
      I don't think Lymphedema nessesarily causes patients to gain weight, except for the leg my body seems the same as before. But I get treatment, my swelling is being kept down by compression. Without compression you get more fluid and then your weight increases. Perhaps some gain weight because they are having dificulties exercising like they did before, or some eat more because they are frustrated with the condition. I too have heard that patients overweight for other reasons than Lymphedema surely will benefit from loosing weight. I am not sure how to calculate your true weight. If you loose weight you would see on the rest of the body if it is your ideal weight, wouldn't you?
      Also, I meant to say don't give up, there is a lot you can do! In fact, I would say that most of it is down to ourselves, depending on how severe it is, of course. Mine is really just maintainnance that I mostly do myself. However, you would have to get treatment to get it to a stage where you can just maintain it, but you will be your own doctor - and you can! You can learn to do what the docs and therapists do - compression therapy and skincare. I don't expect mine to get worse, and I think (but I'm not sure) that most people who address it stay the same, more or less. Without any treatment (selftreatment or by pros) it may be a different matter. Well done that you have started your own MLD, taking care of your condition :-)

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  4. Hi, Lymphedema Girl -

    I've had LE in my right leg for about 17 years (I'm 45 years old) and have had a bit of experience with stockings, wraps, bandages, etc. Not that I know anything; I just know what works for me.

    I haven't read through your entire site (yet!), so I don't know everything you've tried, but here's my feedback on your Jovipak sleeve: *nothing* works better than wrapping. I own a pump, a Reid Sleeve (very similar to your Jovipak), wear compression hose, have had Manual Lymphatic Drainage, etc. I was excited about the Reid Sleeve but found that it really didn't help that much. I'll use it in a pinch, but for all of the negatives (it's hot & bulky), I prefer taking a night off of wrapping instead of wearing it. Honestly, wrapping is the only thing I do that makes me feel more in control of my disease. (Unfortunately, it's also the biggest pain in the a#~.)

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    1. Hi Elizabeth, thanks for your comment :-)
      I think what you are saying about wrapping being the most effective is the conclusion I am coming to too. I haven't got what it takes to do a full wrap every night though. It is a lot of work, it takes time and it confronts me with my condition on a level I can't handle emotionally. It is too much. While my nightgarment has been at the fitter to be sorted out I have wrapped my leg to just over the knee most nights, that has been going allright but I am not sure I could do it every night for the rest of my life. I am sorry to hear you have pain from wrapping, I don't - for now. Lymphedema sucks!

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  5. I have been having Lymph edema of the right lower limb for the past 8 years, caused by irradiation taken for cancer treatment in 1985. I am managing it with Compression stockinette wearing it throughout the day , and keeping the leg at an elevated position during sleep. I am quite comfortable and cheerful, at the age of 72.
    t.k.thanthoni

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    1. Hi there,
      thanks for writing :-)
      I too elevate my leg during the night. It is uplifting to hear that you are handling it so well, even at a relatively high age. So good to hear - I hope I can do the same when 72!
      Liz

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  6. Hi to all! I am 59 yrs old, and because of my underlying cerebral palsy, bandaging is not an option for my right leg; I can't reach my leg/foot with my right arm, and am somewhat overweight, don't lose any pounds except if I starve myself, literally. In any case, want to shout an "atta girl" to all of you courageous people. I work and have not had treatment for a long while due to lack of medical insurance and not enough pay. But I am trying to go back to normal after 9 months of unemployment and living in my van...what a year! I wanted to ask one thing: I have two scratches in the side of one leg and back of another, and of course they're "weeping" and don't close. Anyone knows who to go to (wound care doctors are at $300/per office visit!) or what to do with open sores -especially when you need to dress a bit to go to work, etc. Many thanks and thank you so much for creating this blog - better than social networking! Hugs!

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    1. Hi there, thank you heaps for your comment and for your kind words about the blog :-)
      Well done fighting to get back to normal after this long, hard time. You will get there!
      Hmm, I guess woundcare doctors would be the thing but I see what you mean with 300 per visit - ouch! What about your GP? There might be a nurse in the clinic.
      Would like to hear how you go. Take care!
      Hugs.

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