Lymphodema

Not sure if anyone would be able to help?

I got primary lymphoedema in both my arms hands both my feet and legs

up to the knee for the past 9 years I been to hospital 4 times in 9

years and got stocking but never had anything for my hands or arms over

the past 3 months it's got worse.after looking into farrow wraps I

thought they may help as I have problems putting the stocking on.

After going to the drs today I asked about farrow wraps with paper work

I took of Internet sites only to be told that I got no chance due to

cost and she was unsure what would happen to the fluid in my legs and

arms and was worried it may affect my heart I got no heart problems as far as I know also told me to try and

carry on with the stocking.

Am now very fed up about wasting my time going to drs and hospital

Any help would be nice

4 Replies

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  • Ive had leg farrow wraps for 7 months . They did in and slide down bunching at ankles and kill me. Also end up with balloon feet and knees from wraps. I have heard stories of people with arm and leg Lymphoedema having heart issues if all 4the quadrants compressed at once due to ovetload

  • Sorry I am confused are you using stockings now ? I know putting them on is hard have you got yourself a metal frame to stretch the stocking over? It makes it ten times easier and keeps the leg looking good.

    I put my partners on him every day and I wear farrows because of my back although at the moment have gone back to triple bandaging to get the swelling down.

    Good luck

    xgins

  • sorry to hear about your problem.. I have a farrow wrap after to be careful ho i wrap my leg.If a gap appears i get a lump of fluid appear and during the night due to the fluid moving i am going to the toilet about every 50 minutes.Also i am now on blood pressure tablets.

  • Hi honey have you contacted LSN? It is all sounding like you should be measured for arm sleeves and gloves, proper fitting stockings with an aid to help you fit them and also a specialist practitioner who knows what they are doing. It just makes me so cross that you were essentially sent away from the hospital no further forward. Good luck with tracking down proper support. It's just a nonsense that its such a postcode lottery.

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