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Chrissie2811 profile image
13 Replies

Hello, I've recently been diagnosed with lymphoedema in both legs and can't exercise as I'm waiting for a total knee replacement so if anyone has any suggestions I'd be grateful. Also I've heard that they wont operate with my condition, is this true? I hope not as am having to use a walking stick now and can't walk or stand for more than about 15-20 mins. before having to sit down because of the pains. I've got Graves Disease as well and wonder if it could be the cause of the lymphoedema? I'm not getting much info. or help from the doctors as to self help or treatment and have just been given compression stockings and moisturisers for the dryness of my skin.

I hope someone has some suggestions.

All the best.

13 Replies
kHP22 profile image

Hi there . I've had lymphoedema in my legs for the last twenty five years and have now developed arthritis in both hips and both knees for about the last three years . I was referred to a specialist for potential hip and knee replacements but told the following information . They said that the main intention of any replacement surgery was to firstly remove the pain of the arthritis and secondly to regain movement in that joint and limb . My consultant felt that the lymphoedema could make me very high risk of the wound not healing or of getting infection and on my very bad left leg then they wouldn't consider it . As I also had a constant element of pain already from my lymphoedema taking the risk of surgery wouldn't give me full benefit .

I have recently had another flare up of my arthritis in my better right leg which resulted in a locked knee which caused excruciating pain and very little movement in the whole leg . It has taken about three months for me to get this leg any where near normal where I can weight bear on it . During this time I saw physics who gave me very easy excercises to do to strengthen the muscle above my knee cap . This involved lying flat and pulling the toes of my right leg upwards towards my body whilst trying to push my knee cap down . This causes the muscle above the knee to tighten and then release as you lower the toes . I've built up the number of times that I can do this now and try to maximise it at about thirty bends at a time . I also do excercises where I put a cushion under my knee and clench the top part of my outer thigh and buttock and this helps . Finally I lift my leg straight in the air and try to hold it for a few seconds . Circling the ankles also helps . These are very simple excercises that can be done anytime that you have a few minutes and I've found them really beneficial .

Finally I'd say make use of your walking aids . I'm a very young minded person in my early sixties who didn't want to go down the road of being reliant on anything but I've learnt the hard way that you are better being sensible . I use an arm crutch rather than a stick as I find that this gives me more support than a stick and I bought one off the Internet in bright turquoise !! I keep it in my car and use it whenever my legs are feeling extra tired . I also have a modern looking wheelchair that I take all over the world with me . I use it for distance walking . Most of the time at the moment I push it myself and use it as a walking aid . If I get tired I stop and sit in it for a while as I find standing quite difficult . My husband before his death then used to push me back when I got tired . Now that I'm on my own I still use it but I just can't go as far. I've learnt not to worry about what I think people must think of me . If it helps me to get through the day then I'll use anything that I need .

During my recent knee licking experience the consultant I saw at a different hospital said that he wouldn't necessarily rule out surgery on my better leg so I think it's worth getting expert opinions . Whether I would totally be able to take the chance of the surgery is another matter having experienced how ill I was previously from an infection i. I wish you all the best however .

Chrissie2811 profile image
Chrissie2811 in reply to kHP22

Many thanks for your reply, it is very helpful and comprehensive. I certainly will push for some sort of physio especially as the lymphoedema is spreading further up my legs. Your exercise suggestions sounded very familiar - I had to do the same ones after my first knee replacement in 2002 so I know how to do them. I should have added that I've had to have 3 operations on my feet in the past too (bunions, hammer and claw toes and instep bones broken and reset as they were badly bowed) they said it was bad luck as I appear to have been born with very thin bones (not osteoporosis thank God). Unfortunately the bunions have come back so you can imagine walking is near impossible at the moment. As I say, I'm desperate to regain some degree of mobility especially as my husband is wheelchair bound and I'm having to be his carer with some help from council carers. Again, thank you and I wish you all the best too.

harpy1 profile image
harpy1 in reply to kHP22

Thank you so much for posting this. I had to double check to see who posted it and not me! I need a hip replacement on left hip and knee replacement on right knee. Right hip will need doing eventually. I have been wondering if the stalling by doctors has been because of the lymphedema and the likelihood of infection and making things worse having cut through the skin and damaging the lymphatic system somewhere else. Good for you for getting around and doing the best you can. It is not easy at the best of times and certainly is not when you no longer have someone else to support you. Best wishes for the future.

kHP22 profile image
kHP22 in reply to harpy1

Thank you for your kind comments and best wishes .

Lynora profile image

Have you been referred to a Lymphoedema Clinic? If not you must make a fuss to be seen at one. Also, contact the LSN (contact details are on this page somewhere) and speak to one of their advisors - they have articles and leaflets they can send you about exercise and surgery.

Chrissie2811 profile image
Chrissie2811 in reply to Lynora

Thank you for your kind reply and your suggestions re a clinic appointment which I will definately do. All the best to you.

clown profile image

No such thing as I can't. Try and build up your walking time. I was in agony and had visions of becoming disabled and completely dependent on others. I hated the thought. I walk every day and now can walk for half an hour. I also have an exercise bike at home. I began with 20 secs and can now do 15 minutes. - I was advised to cycle by a lymphedema specialist - both arms and legs are affected.

Chrissie2811 profile image
Chrissie2811 in reply to clown

I should have said about my feet problems too but if you read my other replies it explains a little better why exercise is such a problem for me but as I say I can't live my life like this and am determined to improve as much as I can. Like you, I've always been fiercely independant and active until the last 10 years or so, so this is all very alien to me. Thank you for your help and suggestions and I wish you all the best in the future.

Brandish54 profile image
Brandish54 in reply to clown

I do a lot of gardening to keep me active just pottering about no heavy lifting though as I have LBB ( left branch block heart condition) . Plus lyphoedema in both legs so I brought myself a treadmill just to do steady walking because I was told it would help with circulation in my legs yet to give it a go. I will say though when I went to lymphoedema clinic seven years ago I was told by nurse to walk 5 miles a day that would cure my problem stupid woman I take it she had her daft head on.Like you I do not like to have to depend on people I am not one of these people that says I cannot do it I always give it a go first . No doubt there will be a time when I will have to take help . I understand there is a lot of people out there worse off than me and my heart goes out to them .

AnneBury profile image

As Lynora says please contact the Lymphoedema Support Network lymphoedema.org . As well as a website they have a telephone help line. They have information on operations in affected lymphoedema areas. I have primary lymphoedema in both legs/ feet as does my sister (& one of my brothers). Both my sister and I have had our bunions done, on both feet. In my case I was put on antibiotics for 2 weeks before the operation and kept on them until my wounds had fully healed. The main risk was infection / cellulitis but all was fine. The other issue was the fact I couldn't wear my compression garments while recovering. All settled down to my normal pretty quickly, though. My sister's swelling (in her worst leg) took longer to get back to her normal size but it did.

Chrissie2811 profile image
Chrissie2811 in reply to AnneBury

Hello and thank you. Your reply was very reassuring and has given me some hope of getting a satisfactory outcome and hopefully some improvement. I don't expect miracles but can't accept these restrictions on my life and am just wanting to get about a bit easier. I hope all goes well for you in the future.

AnneBury profile image
AnneBury in reply to Chrissie2811

Hello Chrissie2811. Very pleased to hear you are feeling much more positive about things. Taking managed risks having my bunions done was just great. My bunions were very painful and having a big impact. It is now about 8 years since I had them done and the result has been great - and that is not about the cosmetic issues, it is the lack of pain, the ability to wear my compression garments much more easily and everything that goes with that. My lymphoedema first showed when I was 11 so I have had plenty of opportunity to get used to it! Good luck.

Chrissie2811 profile image

Thank you all who replied to my post re my knee op. you've been very helpful and reassuring about this with regard to how to get over the problems with my lymphoedema. I feel more hopeful now that I may be able to manage both problems. Thank goodness for this site - it makes it so much easier to get info. straight from the horses mouth as it were. Again, thank you and I hope all goes well with your individual problems.

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