Does anyone else’s medical professional tell you that lymphoedema isn’t painful? I have had 3 lymphoedema nurses now tell me it isn’t.
For a start how would they know?! Also pain takes lots of different forms. Heat, sitting and standing too long makes my leg fe extremely heavy and yes I would call that pain, not ten alt or ten but is hurts! Throbs!
Sometimes at night my leg is very uncomfortable bordering on painful and disrupts my sleep.
If I haven’t got my compression on propeely (sometimes happens for no reason!) causes pain. When I’ve been bandaged or sometimes with my wraps on I can feel pain… burning or rubbing ir just extreme heaviness.
Sorry for rant but it does hurt and at best it is always uncomfortable. I can always feel it so it feels very dismissive when they say this.
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Ernie2608
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Have you had a thorough assessment (e.g. Doppler scan) to check for vascular problems which can cause pain?
I've have secondary lymphoedema in one leg/foot/hip since 2017. An early diagnosis and MTM compression has meant my swelling is mild. I occasionally get pain, mainly in my foot, which I associate with the lymphoedema. Certainly it gives me a great deal of discomfort throughout the day, for various reasons, and I frequently have to make adjustments to get comfortable(ish).
I always find it uncomfortable, and I sometimes have pain. (Interestingly the pain always seems to occur right before any improvement - around my elbow, where the fluid builds up. One lymphoedema nurse suggested that the pain was down to the fluid moving...)
having had lymphoedema for 20 years (everywhere) I think any pains are relating to things on top of it rather than the actual lymphoedema / swelling. For example I get a pain in my foot and it hasn’t been there the entire time, which is more likely related to nerves - probably damaged from all the compression I’ve been wearing! The other pain I get is if my compression level is too high (for example class 4 on legs and 2 on toes overlapping is A LOT). I never get pain on my arm, upper leg or face for example.
Having said this, everyone’s lymphoedema is different and a dr or nurse should definitely not discount it! That’s not fair
That is the stock comment from the medical profession. I have had secondary lymphoedema for more than 10 years. I have pain in the offending leg and I convince myself that it is pain resulting in the effects of lymphoedema . I have found resting the leg, such as extreme elevation, has helped to relieve the pain.
Yes, that's a good way to describe it - and I get it under my arm, too, where lymph nodes were taken out, when fluid builds up there. Squeezing with a ball helps relieve it.
this! I’ve had lymphoedema since I was born and always had lymphoedema related pain - yet any health professional I’ve spoken with dismisses it, almost 10 years ago my GP prescribed me a painkiller for nerve pain and it did nothing, yet to be offered an alternative. I find lymphatic drainage massage really helps but having to pay privately for these sessions means I haven’t been in a long time and all the lymphoedema service can offer is compression stockings and the loan of a pneumatic pump Atleast once a year - it really isn’t good enough more needs to be done to help those of us in such discomfort.
I have had primary Lymphoedema in both legs for almost 70 years and would say definitely that Lymphoedema ‘causes’ pain at various times and for various reasons, tiredness, issues with compression and sometimes for no apparent reason!! So unless you have the condition I don’t thinks you can comment on the pain someone with the condition may experience…….keep on smiling x
I have pain in both legs and was told it does not hurt. So I also have neuropathy and guess it's that that is hurting me. Wraps seem to add to the pain also. Pump does not so I like my legs in pump as much as I can.
It is so rich when people who don't have Lipedema tell us it isn't painful. A PT literally wrote that to me in a message when I complained about how tender the tissue is in my legs. Screw them. Every pain you feel is real and legit. Sorry you have to feel it! My pain is less when I eat low/no carbs, when I drink more water, and when I move. Good luck!
Your post caught my interest and raises several interesting points.
Pain is defined as 'An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.' (with such a definition all lymphoedema is probably an unpleasant emotional experience and therefore painful). However 'pain' means a wide range of things to different people and is hard to pin down. It is very much something 'felt' by an individual and impossible for another person to appreciate if pain is there and how it is felt (ie someone cannot tell you that you have no pain). Lymphoedema in classic medical teaching is not painful however that doesn't say it is never painful. In my experience about 10-20% of patients will describe some sort of pain associated with lymphoedema. Often it is described as a dull aching type pain, often at the wrist, but there is a wide range of descriptions. (The English language doesn't have good descriptive words for pain so it is often described vaguely and with some difficulty by the patient). It makes sense to me that if there is swelling and extra fluid, then there can be extra physical pressure on nerves or tissues which elicits a pain response. This is different to pain caused by treatment eg compression. (As an aside we have had patients treated with LVA who have had only slight volume improvement but their pain has disappeared - I have no scientific explanation for this but probably something to do with pressure or fluid somehow). Lymphoedema causes a mild inflammation reaction in tissues and the cells of each tissue behaves differently in the presence of this abnormal cellular environment. eg fat cells increase in size, skin becomes thicker etc and maybe sensory pain nerves become more sensitive? As with many things about lymphoedema, medical science doesn't have all the answers.
Pain is difficult to treat and so there is no one way that can treat all pain. Generally in medicine if we don't have a good treatment, medics tend to ignore / downplay some symptoms / diseases. Pain (and lymphoedema and mental illness) is a classic example. So if you are taught lymphoedema is not painful and you don't have a good treatment then generally medics won't go overboard on interest in lymphoedema pain.
Limbs can be painful due to issues not related to lymphedema and it is worth excluding other conditions.
Being dismissed by the profession is very upsetting for patients but unfortunately common in lymphoedema. In life the more you learn about a topic, the you realise there is even more things you don't know about it. Most GP's get very little training on lymphoedema and so sometimes have a simplistic knowledge and don't realise the subtleties and nuances of the disease such as the small number of people who do have pain.
In summary
Pain is lymphoedema is real
Pain is difficult to describe
Pain is difficult to treat
The medical profession is not perfect
Don't miss another diagnosis
Good luck and I hope you find a way that alleviates the pain that works for you.
I completely agree with you. My leg is always feeling heavy and a dull ache. I wear compression almost constantly My toes swell to the point I think they’ll pop sometimes and the throbbing around my ankle is constant
I felt very aggrieved reading Dr Miriam Stoppards write up on lymphoedema saying and I quote that ‘it’s a painless swelling ‘!!
To be honest I was furious. Not only is it not ‘painless’ the anxiety associated with it and the psychological side of dealing with it can make it completely unbearable at times. Summer which should be a joy is a nightmare!
I have dreadful pain at the end of a day in my left foot. My right foot has lympoedema too but is nowhere near as bad as my right. The left foot feels tight and frozen so moving it is difficult. I feel this right down through to my toes which also swell and look chubby. I have a dull ache and nervy pain or twitch in my left buttock that goes down my leg on the outside edge, I believe it may be vascular or a circulation problem in addition to the build up of Lymph fluid.
Resting sometimes ensures that the swelling goes down, but it swells right up as soon as I am on my feet again. Up and down all day.
On days when I am in the classroom teaching, I feel like screaming as I have to wear shoes, and although they are flat, It is still hell for my feet. I am not allowed to wear anything that looks like a trainer, I also don't drive, so I can not wait to get out of school and into some crocs. Crocs are the most comfortable of all footwear, but are not accepted in school. As crocs don't fit the corporate business image the school has. Sandels are not allowed either.
I can't wear compression as the pain is worse and this definitely causes my blood supply to stop. I have tried.
Heat and waving my foot around in front of the fire helps a lot to ease the pain and loosen up the ankle joint. If I could reach my feet I would love to massage them and cover them with a heat pad, as the heat really works to unfreeze the ankle and allow movement.
There is a machine called Revitive I am tempted to buy, which says it improves circulation and reduces swelling. But then a contraindication states it should not be used with asthmatics or those with COPD, but I am still tempted to take a risk and try it.
Has anyone else tried one of these machines out?
If someone has tried one can you let us know whether it has worked for you, to relieve pain, reduce swelling, to release frozen joints and to improve circulation. I would love to know.
Are you in the UK? The school has a responsibility to make reasonable adjustments for physical conditions and I would make the argument that appropriate footwear would be included in that. I am also a teacher and i am sure that my school would find trainers, crocs or similar completely acceptable if it was necessary for my comfort. I’m sure if the footwear was black it wouldn’t be noticeable either and would fit in with corporate wear (which is quite an outdated policy in my personal view as most corporate workplaces no longer subscribe to stuffy dress codes).
Maybe speak to the school again or if they are standing their ground have a word with your union rep.
I have bought black but they have a white base. I have also bought navy and they too have a white base. They were'nt cheap shoes as they are sketchers, I did have them stretched a bit, by a cobbler, so my ankles would not feel too constrained by the shoes as even these were fine on the foot but tight at the ankle. Where the ankle and foot form a marker at the base of your leg. Years ago my GP recommended I should wear trainers to support my feet. But I found most trainers too heavy and cumbersome and very uncomfortable due to the high part of the tongue and tie in. But these were not allowed in school either.
Schools that have become academies are run by trusts who are a group of businesses who run and manage a school. They employ all the teaching staff and any other related staff to teaching or the actual running of the school They want to have a corporate image. So the recommendation is smart blouses and trousers, or smart skirts and matching blouses, smart dresses and matching jackets. Low healed court shoes for the ladies. For the men a smart suit, or smart casual wear, a tie is optional and for shoes smart Brogues or normal black polished shoes. Uniforms for the kids must be as defined by the school colours, badges etc and again sensible shoes.
In all the schools I have been in, trainers or sketchers are only acceptable in the gym or outside on the playing field.
I am going to buy a clothing dye and see if I can paint the base of my sketchers black, so it makes them look more like a shoe than a trainer. If tried this once before but the dying process needs to be done regulary so that when they scuff, white soles don't show.
A shame crocs will never be accepted even if they are navy or black as they are the most comfortable shoe of all. I also remember once asking if I could wear sandels and the answer was no. The other reason the school argues about wearing a normal covered in black shoe or court shoe,is appparently to do with health and safety. Strange as this to me has got to be wrong, as the only shoe suitable then would be a safety trainer or proper safety shoes. incidently I have a pair of the latter and they are the most uncomfortable shoes you could ever wear, but at times when working with construction students have become a necessity.
I think for a lot of people who have lympoedema finding comfortable shoes is a nightmare.
I’m really sorry to hear that the school will not accommodate a simple change to the dress code that would make a big improvement to your well-being! I’ve worked in a range of schools and academies over the years and have always been able to wear what makes me feel comfortable even if it doesn’t subscribe to their dress code- including foot wear (although I couldn’t wear open toe in one school for health and safety). I think most schools are happy to accommodate the needs of their staff - especially as there are laws to protect workers.
Teachers are in such short supply at the moment- maybe a different school would be more obliging!
I've had comfortable shoes from DB widerfit: big range of styles, easy returns if required and frequent sales if cost is an issue: widerfitshoes.co.uk/womens-...
Thank you Perido. The problem with me and shoes is one foot when swollen is bigger than the other and also the lymphoedema swelling in my ankles show that one foot is much larger than the other. It's like I have feet belonging to two different people.
I guess if I was measured when my feet are swollen and at there worst, I would be a size 8 in my left foot and a size 7 in my right foot. In terms of width my left foot is wider than my right foot. However, in the morning when I wake both feet are the same size. But after two hours or so they are both swollen. I am up and down all day and at the end of my day, my entire left leg and foot is aching and tingling from my left buttock down to my feet and my right foot is in agony around my ankle joint.
Lying down and doing regular exercise for my legs and feet does seem to help for a short while, as does heat, as the heat seems to unfreeze my left ankle, but in the work place, I just have to tolerate the agony I am in, until I get home.
In late autumn, cool winters, cool and dry spring days, my feet improve drastically and my shoes are no problem, but come the warmer weather, and along comes hell. Crazy.
Your feet problems sound similar to mine. I wear compression toe caps on my lymphie foot which helps a lot to keep the swelling down. Even so getting comfortable and suitable footwear isn't easy.
I've been in tricky work situations myself, regarding rules which compromised my health. I second Angelil's suggestion about seeking support from a union rep.
Hi Ernie 2608, I am 83 and was born with primary lymphoedema in both lower limbs, including feet. It is painful all the time, just some days it is less painful than others. The main problem is the older one gets the more fragile the skin becomes and that, today anyway, is where I am feeling the most painful. My toes are becoming more painful but apart from continuously taking painkillers, there does not seem to be anything, in my case anyway. that makes it easier. I've lived with this all my life, so to a certain extent, I just have got on with it. Good Luck and take care of yourself.
Yes it does hurt. Never let anyone including professionals tell you what you are feeling. I experience different levels of pain/discomfort. When swelling increases after a long day working, travelling abroad or a hot day here in the uk that heaviness and stiffness is unpleasant.
I experience awful pain esspecially during the colder temperatures when I walk, or attempt a brisk walk. My circulation of the lymph can not handle it. I am not sure exactly what is going on but I experience the most intense burning, itching, like a trillion insects are crawling under my skin. It’s so bad I cry and have done in public. Sunday morning strolls in the countryside are ruined. It stops when I can go inside to somewhere warm, a shop, a cafe etc I take Gabapentin now. It’s not enough as sometimes even the slowest walk brings the pain on…
Yes I wear my compress every day too. Off at night to allow my skin to breathe after I moisturise.
Wishing you well, and everyone of us Lymphies ❤️🤗 x
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