i have primary lymphedema.

[codieriley123]

I have primary lymphedema and had leaking legs which ended up turning into an ulcer with green discharge. thankfully that has now healed and I have made to measure compression stockings which has helped to reduce the swelling a lot. The problem I now have is my ankles just do not seem to have gone down and still make walking or standing for more than a few minutes very painful. I have managed to loose 35 lb in weight since middle of November and take 4 furosemide water tablets daily . (depending on if I need to go out). any help regards reducing my ankles would be appreciated as I am having to wear mens canvas shoes .

[codieriley123]

ive been taking water tablets for approximately 12 years for water retention . slowly increased from 1 to 4 a day which I now take. it was only last year I was actually diagnosed with lymphedema after having blisters leaking and ulcers. The only treatment ive had is my stockings and never had massage treatment. I am due to go back to clinic next month so will be asking about both these thank you xx I will also have a look at the shoe you suggested so thank you again xx

[peterwhitecrier]

I stopped taking water tablets after 25 years when the research LSN had sponsored was explained to me i.e. they don't help lymphoedema. I did that with consultation with my GP but just relying on compression hose means the condition has not worsened. But it makes life easier not being on those tablets.....

[bound90]

Hello, MLD is the ONLY way to help you, your body needs help to flush out the fluid and this gentle massage will get your system going, along with wearing strong compression stockings, taking any fluid retention tablets is not good, it just upsets the balance, and YOU WILL NEVER GET BETTER USING FLUID RETENTION PILLS. Drink lots of water, eat celery, radishes, avacado. Look at YOU TUBE, there are lots of massage that you can do yourself to aid natural movement of fluid. Walking when you start to feel better, 15 /20 mins 2 or 3 times a day, exercise bike will also help as it DOES NOT PUT PRESSURE ON LEGS. A little at a time.

I have primary lymhedema so i understand the frustration.

Alma.

[HelenRC]

HI: I want to add my confirmation as others that manual lymph drainage is a must for lymphedema. I had it for a few years until my therapist moved away but must find another one. I have primary as well as generalized which means its all over the body. I've had this over 54 years. The doctors prescribed diuretics for many years which made the condition worse - as others have stated. About 27 years ago I saw a specialist who told me, no more diuretics. Howver most doctors and endocrinologists still recommend diuretics. Since this recommendation, I tell my doctors that I have seen a specialist and I am to no longer use diuretics. This works for most doctors. Also, it is so important to change your diet; that is, take processed foods out of your diet as much as possible. I have learned through experience, that processed foods increase the edema. Good luck in getting some help. I should also mention that some people can handle compression stockings or wrappings, while others can't. For myself, the compression stockings give me shortness of breath as the lymph fluid moves into the abdoman and towards the heart. Lymphedema is so unknown and misunderstood by many health professionals. I hope you can find one that understands as it is not just the enlarged limbs, etc., but pain and discomfort, walking with difficulty and the emotional stigma. There are a lot of us online who understand. Keep happy.

Helen

[alisonlouise4444]

Hi i agree with bound90 my excercise bike really helps me to push the fluid up the leg it may seem daunting to start with when you feel so unwell i would start with just a few mins on a low setting and build it up over time. LSN sell a very informative dvd how to massage yourself its really helped me its simple and to the point very easy to follow.MLD is definatly what you need by a specialist nurse on a regular basis but this dvd would be helpful for you to massage inbetween appointments as i do. Also when your sitting keep your legs up and supported and when applying your cream always brush in upward strokes.Congratulations on your weight loss this will help our condition.Let us know how things go goodluck i hope you start to improve soon

[valkerry24]

I would ask your specialist lymphoedema nurse/consultant who measures you for the made to measure stockings. Tell them it's important to you that you reduce the area around your ankles and they should be able to tailor make a suitable way of reducing them such as using soft foam cut into shape which can be used in conjuction with light bandaging but done properly so it doesn't cause swelling below or above it. Also, having your bed raised at night is massively helpful to me. However you can manage to do that would be good. Good luck

[valkerry24]

I agree, water tablets are a no no.. as far as it's been explained to me. I have secondary lymphoedema though, not primary.