Arthritis and Lymphodema: Hi, I have had lymphedema... - LSN

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Arthritis and Lymphodema



I have had lymphedema from birth but it has got worse as I get older. I had a hip replacement 2 years ago and the swelling on Right leg is much worse now. The left hip is now really painful and I have been accepted for another replacement. Not being so active due to the pain, I have put on some weight which I know doesn't help and am really trying to lose a stone. Does anyone know if I can get strong pain relief that works in patch form? GP only ever offers NSAIDs. I have never been one for tablets as I fear they will cause digestive problems taken on a regular basis. Also I now experience pain in thighs and lower legs. At 70 I still teach part time and do my own gardening but I am miserable with the constant pain. I have compression tights, as other posts have said-they are difficult to get on and off- legs are actually worse. I feel quite useless.

16 Replies

You are certainly not useless, my mum has arthritis in both knees and can barely walk, she has pain relief patches through GP, not really sure how much help they are for her, she's 84 and got numerous other problems, but it may be worth trying them.after all, nothing ventured, nothing gained, stay strong and I wish you well xxxx

Thank you Jennymary. If your mum is still coping at 84 -what am I moaning about? I will pester my GP for some patches, as you say nothing ventured. I hardly ever visit the GP so it should be OK. Thank you for the pep talk - constant pain while trying to live a near- normal life does get you down BUT I am humbled by the experiences of others who keep so cheerful.

Please try and stay positive being active is so benifical.

Have you tried walking in a swimming pool as I find that helps in keeping the fluid moving as the resistance of the water ensures the leg muscles work harder. Don't worry about having a swim suit on, if people want to stare that's they issues not your's.

See if you can find a way to make getting you're compression garments on as they so so help.

This time of year doesn't help either I struggled to get shoes on this morning because of the over night swelling which is all due to the heat and yes it can get you down. But I get up each morning thinking if this is the only medical condition I have I am the lucky one.

Some mediation might help as you don't want the feeling miserable to exasperate into something more.

Take care keep teaching and gardening


I know how you feel about being in pain all the time. I don't really like taking tablets all the time but it is the only way to have a life. I'm sure you can get patches. Fortunately my lymphoedema is in my arm so it doesn't cause me problems walking. It is only the arthritis and effects of cancer treatment that make walking more difficult. For putting on the compression sleeve on my arm, I have a plastic sleeve which helps enormously - the compression sleeve just slides on over it. I'm just wondering if there might be something similar to help put on leg sleeves? Good luck in your search x

I have had Lymohoedema for 21 years following cancer surgery and seven years ago developed arthritis firstly in my hands then in both hips and both knees . I've been told that they won't undertake surgery due to the Lymohoedema because it won't heal properly will make the lymphoedema worse and be a large risk of infection . It's just pain management fir me . They started me off in diclofenic first for the arthritis but it damaged my stomach so now I can't take any tablets orally for this and am on tablets to try to get rid of GERD as I also have a hiatus hernia . Total walking wreck really lol ! Think I'll look into patches . !

in reply to kHP22

they do operate on people with lymophoedema but you have to find the right surgeon who has experience - as an example at st Thomas hospital London, phil Mitchell operates for knees etc and is under prof Mortimer for the protocol of looking after and operating on someone with lymphedema - also if you read the LSN news, previous issues has someone having knee surgery and he describes what is important to do and mainly it is to loose weight before oepration

in reply to DeborahE

Hi - thanks for this . It's good to have the information for when I might need it . The specialists st the moment have advised me to wait until I have no other option but to replace . I know they can provide antibiotic cover but it's just that I also have major problems with developing blood clots that have been difficult to sort out in the past so the risks to me they say would be very high . At the moment touch wood with steroid injections into my system and pain killers I'm managing to control it under normal circumstances , when I have a major flare up I just have to rest until I can weight bare on it again .

Flowerdancer your name is beautiful and so is your picture. Like rother I am going to suggest the swimming pool. You can ask your pool if they have any women only sessions, some do. You can maybe get different leg compression that is easier to work with. Re your new hip replacement, remind your surgeon about your lymphoedema status and see what s/he can suggest in remediation after op. And pester your GP about the patch for pain relief. Go flowerdancer xx

Thank you so much for your replies lovesradio, kHP22 and Chrissy2 -how nice of you....Yes the long compression socks after the op just made me look and feel like the Michelin Man and I had to use a lot of persuasion to get them removed. I have been waiting for the call to go into hosp. for 3 months now, so I may have to chase them up. I will discuss this with the surgeon as you suggest.

I really must get myself to a swimming pool for regular water exercise -you are right, I know this helps and there must be sessions other than the place where I work. I actually teach dancing as one of my subjects - now I am limited to Linedancing five hours a week: used to teach all theatre dance but I had to accept that the time was over for that! My class is so good that I only have to teach the sequences and then put the music on - I can then observe! Very lucky. I just about manage that - but when it comes to ordinary walking< so painful and the fluid just drops.

I am humbled by other peoples disorders and what they are coping with-and you are all so upbeat. Because of your comments I am pulling myself together and eating correctly before the mood darkens. I believe I can lose some weight if I stop being so anxious and bug my GP for pain relief patches like you say. The asthma kicks in when I am trying to put tights on, but I will take a puff and continue. Losing a stone will help with this as well - I never thought of myself getting like this: but we must all think that!

Love to you all.

I have been given liquid morphine but only use it when I have a business meeting - you cant drive with it

Thanks DeborahE,

Good to know it's available -this at least has a chance of working so the mind can concentrate on something else for a while.

My boss who has severe problems with her back uses joint patches available from Amazon. I'm not sure if you can get them prescribed under NHS I think they're called joint ace

Hi no your not useless I can empathise with you. I'm on pain patches for osteoporosis & once they got dosage right they've worked. I'm by no means pain free but it's definitely improved. I know said don't like tablets but amitriptyline has also helped. Stay strong x

Thank You Lynne-byn,

Clever name!

I did go to GP and saw the nurse, as it was 3 week wait for Doctor! Went for asthma assessment and brought up painkiller request then. Nurse kindly called in the doc who prescribed patches of Buprenorphine. I tried this for 4 days and experience side effects of making asthma much worse (continuous) and Lymphodema worse too, with the additional weight gain. So disappointed as the patch did not touch the pain of the arthritis - nurse will not do asthma assessment without pain being under control. On reading the blurb that comes with patches -the side effects are listed including breathing difficulties and swelling! This would not affect all, so perhaps I was just unlucky. I was nervous about removing patch but breathing is even more necessary - I could not give it any longer to settle.

I am not going to get called for pre-assessment for hip replacement until Nov/Dec so it will not be 'till next year for the op. There are six in front of me.

I am amazed that after 12 hours of removing the patch My weight has gone down 4 pounds and ankles have reduced to tree trunks not Michelin man....AND have not used asthma preventer for an hour! So it was not coincidence. Hey Ho! Nurse is not going to like this.

I was prescribed an 'Easy-As' plastic sleeve. Roll the stocking down over the sleeve to the ankle and then I can push my foot into it. Trying to put it on without this device is well nigh impossible. Checking the web, Cozyfeet do a metal frame version for £20. Good luck.

Had a recent fall and now realize that my thigh weakness made my knee buckle and caused me to trip. I went to an emergency room, no discussion of lymphedema, didn't think about it, and they told me to buy over the counter Aspercreme lidocaine patches. I put one on my chest rib area and the pain was nearly gone from the bruised rib. A few days later, with thigh pain, I put a patch on the thigh and the pain was gone. I have not worn the farrow wraps now for several days but the legs are feeling heavy so am going to put them on now. I live in the US, was in an emergency room near dc, now back home in Florida and will call my MLD therapist and ask for a massage in that area. Now my cane goes with me where ever I am. I am a real estate agent, and this is a tough challenge, being able to take people out.

I don't know if aspercreme lidocaine patches are available in UK but ask your doctor first if it is ok to use them and then ask your pharmacy if they carry them or something similar. Am waiting to see if the thigh pain comes back.

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