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Old 08-29-2011, 10:16 AM   #1
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lulu28 HB User
Lymphedema in both Feet/Legs

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Primary Lymphodeama
I have suffered with chronic swelling in both ankles/legs for over 30yrs.
I have to keep my legs elevated for as much as possible as sitting down and standing for a long periods causes me problems and makes the condition worse. Although I have prescribed compression stockings which are hard to get on. They have to be put on as soon as getting out of bed before the skin starts to swell. But in the summer months the legs get very hot and swollen so I am unable to put the stockings on as they are too tight. And the legs are very sensative. Both ankles are very painful at night so I take Co-codamol to ease the pain and enable me to sleep. I have now been told no more operations from the waist down as this could cause more problems with infections.
Does anyone else have the same problem?
How does this affect your daily life?

 
Old 10-09-2011, 02:35 PM   #2
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kje45 HB User
Re: Lymphedema in both Feet/Legs

Hey Lulu.
I have lymphedema in both my feet/legs as well. It started in one foot so i was very self-concious about it for along time. now it is in both but still worse in 1 foot. It started for me because I got infections in the tissue of my legs and now very prone to them.
Mine is not as advanced as yours, as i can comfortably go with my compression socks (although they do help if i wear them). however I do have the same problems (swell a lot when standing for long periods, selling with hot waether etc)

My feet have come down alot so I have 2 suggestions for you:
1 = lymphatic drainage massage. Iv been having this for a few months now and it has helped quite a lot. I definately recommend it. My feet have improved heaps -and other people have noticed as well (not just me)
2 = I dont know you (obviously) but 1 issue for me was being overweight. Iv lost 12kg now and that has helped as well. Think its to do with the extra weight bearing on your legs.
I lost the weight before I started massage so I can say they both worked.

Im sorry to hear you have it so bad but as I've learnt recently it really is about maintaining it and its something we will have to deal with for the rest of our lives. we can just try to do our best....

 
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Old 10-10-2011, 01:54 AM   #3
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lulu28 HB User
Smile Re: Lymphedema in both Feet/Legs

Thankyou for your recommendations and helpful comments.
I am now 13st was 10stone I understand that the extra weight does not help it is a big struggle the only way I can lose the weight is to go on the Cambridge Diet full of good nutrients and vitamins as I have a very low immune system.

The compression stockings were starting to hurt me as the swelling in my legs were fighting against the compression stockings so I have left them off for a while I daily rub into the legs and feet Epaderm Ointment which softens the skin which is very good.

What I am experiencing now is the front of the calfs stinging like thousand of insect bits and sometimes a strong intermediate pain so I take penicillien daily.

I find it very frustrating and get very depressed when people look at my ankles when they are not covered up.

 
Old 10-16-2011, 08:46 PM   #4
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kje45 HB User
Re: Lymphedema in both Feet/Legs

oh wow! thats awful. I cant imagine it being painful you poor thing.
Have u looked @ lymphatic drainage massage? the girl who does mine had a client with lympodema who lost 25kg of fluid over a year or 2 just from getting the massage...thats alot so might be worth looking into (if you havent already)
I am not suprised u feel self-concious. people used to look at my feet a lot when only one foot was swollen. i used to get comments like "oh my god have u been stung by a bee or something are you ok?!?!" .
Im assuming you have seen some specialists? have they recommended anything for the pain?
i hope things get better soon!

 
Old 10-16-2011, 11:50 PM   #5
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kje45 HB User
Re: Lymphedema in both Feet/Legs

oh wow! thats awful. I cant imagine it being painful you poor thing.
Have u looked @ lymphatic drainage massage? the girl who does mine had a client with lympodema who lost 25kg of fluid over a year or 2 just from getting the massage...thats alot so might be worth looking into (if you havent already)
I am not suprised u feel self-concious. people used to look at my feet a lot when only one foot was swollen. i used to get comments like "oh my god have u been stung by a bee or something are you ok?!?!" .
Im assuming you have seen some specialists? have they recommended anything for the pain?
i hope things get better soon!

 
Old 10-17-2011, 12:07 AM   #6
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lulu28 HB User
Re: Lymphedema in both Feet/Legs

I take Co-coadamol 30/500 (2 upto 4 times @ day)
and Penicillin Tablets 1 daily morning and night to stop infections as my immune system is non-existentant in 2010 I had cellulitis and it took 5months to clear the infection I was really ill.
Now I have to carry a medical card with me in case
I hurt myself as I am not allowed any injections below the waist.
Due to the pressure of the swelling the backs of both my heels hurt they say I damaged the achillies tendons so I have to put up with the shooting pains as they do not advise me to have an operation as could cause complications.

I did the Cambridge Diet for 6months and lost 2stone but saddly I put the weight back on I will go back on it now as it helped a lot as you get all the vitamins you need.

I also get very tired in the afternoons so I must have at least 30mins to an hour rest. Having the legs elevated over the arm of the settee help a lot.

The arches underneath both feet are very painful when pressed if someone giving my foot massage not sure if this is due to selling or having a high instep.

When things get really bad I see Macmillian Nurse for advise and treatment of compression stockings but I find they are hard to get on and as the day goes on as the leg swells the stocking fight against the swelling and I can't wait to get the stockings off.

Do you find it difficult finding shoes to fit you.
My feet are very wide EEEEE or D+ so I have some leather Boots which were made by the NHS with velcore straps they are comfortable to start with but feel heavy after wearing them for sometime. Unfortunately the shoes are not that brillant I was wearing flip flops even in the rain at one time not a very good idea but you have to wear something. Any ideas

Last edited by lulu28; 10-17-2011 at 12:15 AM. Reason: added more info.

 
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