Hi, my friend is 70 and had lymphodema in both legs , she had gel from doctor but that's it , no support . She is in pain, can't stand to cook, doesn't go out at all ! Trapped in her own flat. Her legs are so heavy she struggles to get out of her chair and now doesn't go to bed , sleeps in chair.
Bottom of leg, red and hot and lumpy , top of her legs get cold. Doc says it's her circulation ! Well, obviously but he just leaves it at that !
I've been reading about massage and compression and nurses who come out online , she needs help to try and get a better chance of life .
Any advice ? Wish I could put a photo up of her legs : (
I live in Southport, Merseyside. Not a relative which makes it hard to speak to doctors.
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LDH1
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having found this site, in the first instance i would recommend that you look on the LSN website for a local MLD therapist who would visit your friend in her home, and who can help with a proper diagnosis, advice for her GP and hopefully help with compression garments. Sadly not all GP's are good at diagnosis or referral and it may also be appropriate for her to ask to see another GP in the practice. The LSN website is:
first of all, If i were her, i would try to lift her legs with the help of some cushions. It would alleviate her legs and enable her to go finally to bed. i would follow my lymphie colleague up this message and go to see a specialist. I have not seen the state of her legs so maybe this piece of advice is silly but maybe after starting MLD, a indoor bike would make a difference. If she manages to move her legs a bit, it would do good to her at long term. Swimming or just walking in the water would really alleviate her for sure!
Would you be able to go the the GP with her? you have the authority if your friend gives permission, to speak to her doctor and request a referral,into a local service for a proper diagnosis and treatment. By the sound of it your friend really needs compression to reduce her legs. It may be that there is an NHS service in your area that will accept a referral, not all services do, it will state clearly on thebls.com directory if there is a service available. I would also suggest that she see's a different GP if her usual one does not refer her. Good luck x
She needs a proper diagnosis and treatment, particularly if her leg is hot. Could you go with her to see another GP in the practice or is there an attached district nurse or practice nurse she could ask to see?
Thanks everyone . I managed to speak to her doctor yesterday and he is doing home call today . I've also found a private lymphatic drainage masseur if need be
Once you have the proper diagnosis you are welcome to come along to an Open Day we are doing for the Lympha Press compression therapy massage system at Kew, Southport on Monday 20th October. Please refer to e website for further details of the Open Day: compressiontherapyuk.com NNE
• contact the Red Cross, they can help with the elderly, my mum's 90 & they provided assistance. Tel: 0844 871 11 11 redcross.org.uk
• contact local borough social services & see if they can be of assistance or provide details of local support.
• contact LSN as others have said: lymphoedema.org Tel: 020 7 351 4480. LSN provides information on all aspects of Lymphoedema. Also has useful fact sheets on Cellulitis too which can occur at the same time as Lymphoedema.
I wish you well, & hope your friend gets the support she definitely needs. JMP.
As others have said, if the GP is not very sympathetic, she/ you could consider another GP in the practice who's more responsive to Lymphoedema as she should not be fobbed off with gel with such a chronic condition. The social isolation cannot be helping her emotional state either.
hi i know just how your friend feels doctors have no idea at all im 53 and ive had enough please try the lsn web site you might get some help hopefully take care both of you heather p.s im in kent x
So sorry and very saddened to hear about your lovely friend..thank goodness she has such a wonderful caring friend to fight her corner!
It's simply not good enough that her GP is basically fobbing her off!
For support and comfort I use Credalast below the knee socks to help with my swollen feet/ankles & calves daylong.co.uk (by the way, I am not an Affiliate, I just order from them):
I do think that before wearing anything such as this that your friend is referred immediately to a Cardiovascular Specialist to get the condition confirmed.
Once confirmed and the necessary support garment are prescribed then think about MLD (Manual Lymphatic Drainage): I have read a post from somebody mentioning this can be booked in Southport..I actually discovered their website over the weekend and think this is a super idea and also you can find Specialist who deal in MLD.
Google 'MLD Southport' or 'MLD NorthWest UK', this will bring a list of current practitioners and pay particular attention to any of them that have been trained with the Vodder technique.
I hope this helps a little..please do pass my best wishes on to your friend.
If your friend likes her present Doctor, perhaps he can be recruited to learn more about how to treat this chronic impairment. It is pretty obscure and not a 'magic bullet' ailment.
I'm in the U. S., Connecticut. We have the same ailment and response here.
Thanks everyone. Doc been today, she has infection so getting right treatment now and he prescribed stronger cream and a district nurse coming out. Will see how she goes , I see her next week .
Very sorry to hear of sad state of your friends legs. My companion also has this condition. We have found that it requires care but is not life threatening. At one point he had a severe dermatitis such as your friend has. A Dermatologists recommended that he treat it as follows. Apply a anti bacterial ointment to the rash area. Cover with 'Cling film'. Wrap legs with elastic bandages. Do daily until rash is gone. This worked very well for him.
You can read about Lymphodema on the internet. It is a disorder of the Lymph System. The Lymph System carries fluid around your body and depends on muscle activity to work well. So anything you can do to get your friend to move her legs will help. Naturally she will be hesitant to start, so small steps! But each will help. Wiggling her toes, Lifting her knees, clapping her knees! The important thing is moving the muscles in the legs!! Good luck!!
Hi I am 71 years ans have had swollen legs for over 25 years --told to loose weight and did --to go to the gym-and Weight Watchers nothing worked.
Then my Dr retired and the new one sent me to Bath Hospital who refered me to a hospis that also worked with Lymphodema clinic that treated NHS that had not had Cancer.
I am now 10 weeks in I am lass swollen and am taking Phenoxymethylpenicillin tablets 2 morning and 2 night one hour before food.
Last week i scrached my leg quite badley and it healed up great. So the tablets are working.
I have a long sock that i put on about an hour after creaming and then a wrap --The swelling is down -the pain is gone.
The legs are still far from right they are hot with the sock and heavy i feel as if i have a brick on each leg But it is getting better.The nurse tells me the leg wrap will be replaced with a lighter onein time.
Your friend must go to a Dr who knows somwthing about Lymphodema and she must shout for help.
She also needs help putting the wraps on they are not easy at first ask AGE UK if there is anyone who can help in your area if i lived near her i would call and help.
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