Pain in leg: I have had lymphoedema mainly in my left... - LSN


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Pain in leg


I have had lymphoedema mainly in my left leg for 6 years. Occasionally, I would have pain just under the skin on a part of the leg if any pressure was applied, so particularly when I put my compression tights on. The pain would go within a day so never bothered about it but when I asked a lymphoedema nurse about it she said "lymphoedema isn't painful." Three weeks ago, I woke up and my right leg, which normally has never had lymphoedema, was sore and swollen from top to bottom. I had not strained it or damaged it in any way. The nurse says I now have lympoedema in this leg. It only hurts when pressure is applied and on walking but am wondering why I'm having pain when "lymphodema isn't supposed to be painful." The pain is almost like a stinging rather than an aching. Surely I'm not the only one with painful lymphodema?

13 Replies

I get a nagging ache sometimes but not pain. I do get cording occasionally too which is like a pulling sensation so some people could call it pain. We all have different pain thresholds. If it is cording I think you can be given extra exercises by your lymphoedema nurse. Hope things improve x

A stinging, burning sensation? I get that, obviously I'm not supposed to as like you, I've been told 'it isn't painful'. The burning sensation doesn't make my legs feel any warmer to the touch so I've sometimes been left with the impression that I haven't been believed when the doc's said 'they don't feel hot' - as if I didn't know that. I think maybe the text books need updating as I know others who get exactly the same kind of sensations - and we can't all be imagining it. I don't go to the doc's when I get the burning/stinging sensation, only when my legs are bright pink or red as well - and if I've begun to feel unwell for a day or two.

corey10 in reply to Magpuss

hi there i get the burning sensation all the way on the out side of my leg i can hardly get to sleep it burns like hell and i feel as if someone is jaging me with a huge pin . i keep falling asleep all day when sitting up does any one else do the same kind regards corey 10

Thanks so much for replies. I agree the textbooks/ training needs to be updated. The really depressing thing for me is that for six years I only had lymphoedema in my left leg and it virtually never hurt - and the right one was fine. But the pain and swelling is now in my right leg and worse than it ever was in the left. The lymphoedema nurse assures me the swelling is lymphoedema but no-one seems to know how I could wake up one morning and for it to be like this without any previous injury/ bite etc. I've now had it for three weeks and am beginning to wonder if it will ever change?

I have experienced what I would describe as "surface soreness" which was painful. I'm wondering if it is something to do with the skin being stretched as the leg enlarges. It didn't feel warm to the touch. I too have been told lymphoedema doesn't hurt....

Quick reply, going out. That is what happened to me. Suddenly one day other leg swelled up. Very painful to begin with. Was told by a lymphoedema specialist (much later) that I would have had a vulnerability in that second leg. It probably just about coped and then something like a lymph clot happened and it finally gave up! swollen foot / leg aged 11 and a second one aged 30 (both below knee).

Hi Caroline - did you get checked out for a clot/DVT/blockage in the right leg or pelvis? Always get a medical review if there is a sudden change in your condition. Yes, lymphoedema can spread into other leg. Keep up with your self massage and exercises. What was the cause of you lymphoedema?

Thankfully, GP confirms no DVT issue. I got cancer of the womb and had lymph node removal plus radiotherapy then I was bitten by an insect when I was on chemo. I'd never heard of lymphoedema so didn't know about the dangers. When cancer came back a second time the lymphoedema nurse didn't want to do lymph drainage massage in case she 'spread the cancer around' and I was advised to stop doing the self massage and exercises too. Then I was told the cancer was terminal (this was nearly 5 years ago !) and I thought there was no point in doing them, especially as the lymphoedema had stabilised.Probably need to go back to them.....!

Hi Caroline, might be a good idea to check in with them. It might be a good idea to start back with some self-drainage massage, and some compression on that leg. As a therapist, I'd still advise you to keep moving your lymph around (otherwise it's going to build up, maybe). All the best xo.

Oh, and the lymphoedema can also spread into the genital area - so keep your lymph flowing, up, up and away (so to speak)! The therapists can show you how to work on this area too (deep breathing, abdominal massage, SLD etc).

Hi Caroline, I have pain with the lymphoemeda in my legs, it's like the pressure of it, feels like it's going to burst. I'm still awaiting my first appointment with the lymphoemeda team x

I'm relieved I'm not the only one who has pain from lymphoedema. Flexing my leg by pointing the toe is also painful, so that is in addition to the aching when pressure is applied e.g when putting the tights on. Hope all goes well with your appointment.

I have lymphedema in both legs. But started to get a burning sensation, like I was being poked with a hot poker, down the outside of my left leg. Turns out I have developed Meralgia Parasthetica which is compression on the lateral femoral cutaneous nerve. The lymphedema I have has created congested tissue in both my legs, resulting in this burning sensation. It has since spread to the top of my leg because my congested tissue is so extreme. Not sure if that is what you are feeling. But, whoever told you that lymphedema was not painful clearly has no idea what they are talking about. It is very painful! My feet swell so much it is excruciating as they feel like they are going to split open. Clearly, this person has never had lymphedema.

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