Hi. My son is three years old and has primary lymphoedema in both feet (Milroys). He is always saying he is tired and seems unhappy quite often. Maybe not unusual for a three year old you might think!! That said, I feel it's more than that and even his preschool teachers have commented on it. I was just wondering whether anyone could explain to me how it feels to have lymphoedema in your feet please. I know everyone is different but I'm just wondering whether my son has any symptoms that he is unable to express or may not even realise he has as it is all he has ever known. Thanks in advance.
How does it feel to have lymphoedema in your feet? - LSN
How does it feel to have lymphoedema in your feet?
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KH509
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Is he under the care of a paediatric lymphoedema clinic? They will be able to put you in touch with other parents.
I know it's tough to deal with a child with this condition - do you encourage him to eat 'healthy' as sugary snacks and treats can cause tiredness in people with a compromised lymph system?
He is under the care of a lymphoedema team. They have assured us he won't actually be in pain from his condition.
That is good advice re the healthy eating. I do try to encourage this, but he is most definitely a picky eater. It is interesting to hear that sugary snacks might have more of an impact on him.
Thanks.
That's a hard question because a lot of adults on here who will have suffered like your son wouldn't have been diagnosed as a child.
So how it felt as a child we would probably have blocked it out.
Has his bloods been checked as there maybe something else that needs looking at.
For me yes there isn't any direct pain but it's very uncomfortable and he maybe struggling to differentiate between pain and discomfort, especially at his age.
Keep him moving, get him swimming and running about (if he can) and maybe do some courses on the topic so you have a better understanding of the condition. I know it certainly helped me. This also allowed me to challenge what I was being told.
He will
Get tried at night I know I do, I have a cut of time around 6.30 7pm and can be a serious bear with a sore head if I can't get settled.
Support stocking have been my life line and I am bad for not wearing them in the heat but it's silly. Oh and yes heat makes us more grumpy as well.
I do wish you all the best for you both and ask if you wish to know anything else.
I have also Primary LE in my legs and feet. My right foot and ankle is more acute and has more swelling due to no working lymph values (according to the specialist ICG Lymphology scan, Feb '16). The valves are not sealing off the backflow of lymph fluid resulting in significant swelling in my foot and toes. I also have an absence of lymphatic vessels in my right leg, as well as nodes in rift and left groin effectively acting as damns like in a river, preventing normal flow of lymph fluid
Consequently, with my compression garments (which are Jobst Elvarex flat-knit bespoke garments and toe-cap) walking can be mild to severe discomfort. Standing still can quickly become painful after a few minutes, and sitting in a chair with legs hanging down is also very painful after 2-3 minutes. I keep my legs elevated on foot stool or chair whenever I'm sitting in a chair Gravity hugely compounds back flow of fluid that is already struggling to uptake through the legs into the trunk/upper body.
I have two types of pain in my feet and ankles. One pain relates to a type of neuropathy than can co-occur with lower limb LE called Erythromelalgia. I was diagnosed with this at St George's Hospital Lymphoedema Clinic. It's rare and often not diagnosable by doctors who aren't familiar with it (all 5 GPs in my practice had never heard of it). It occurs in those of us with LE. It causes a burning pain in the bottom and sides of my feet and in my toes. When I have flares of pain it feels like someone is holding flame/blow torch to my feet. There is a medicine that often turns down the pain volume, called Gabapenten. LE pain for me is very different than burning Eruthromelagia pain. LE causes a pain that I describe as sharp prickling, like hundreds of pointy tips of steak knives quickly and continuously striking my ankles, feet, and lower legs. I have heard from other Lymphies that this is a common type of pain.
As your son is 3 he doesn't yet have the vocabulary to describe the LE sensation in his feet. It may be he's feeling something similar to what I've described, or it's different for him but he can't articulate it. I empathise with you as his parent waiting to help him.
I have days when my LE does make me very weary and I feel run down even though I haven't done anything strenuous. Although I have Primary LE I didn't have acute symptoms or diagnosis until in my 40's. Before my LE was full blown I was an extremely athletic active person with endless energy. That has hugely changed, as I physically can no longer do any sport (cycling, running, tennis, skiing etc) due to LE making it far too painful. Also, I just don't have the same energy and find I need to have rest periods on some days. I have bad days and good days. Most Lymphies say they have some days that are 'bad' days when symptoms are more severe/painful. This is especially the case in summertime hot temperatures and humidity as heat exacerbates lymphatic swelling.
Since having full blown LE in my feet and legs, I find I need more sleep as LE really does tire my body out. With impaired Lymphatics it makes sense that the body is not functioning optimally and consequently feels tired more quickly.
I'm not sure if anything I've said is helpful. I imagine it's very difficult for you as the parent of a Lymphie as you want to help your son but can't relate to what he's experiencing or tangibly help him, apart from implementing medical advice.
Lastly, do ensure he's wearing the most appropriate compression garments as advised by a LE specialist nurse or doctor knowleable about types of garmants (as there are many types). The wrong garmants can compound pain and swelling. This happrned to me when first diagnosed - the Vascular surgeon advised circular- knit garments; he knew nothing about types of garmants as it turned out but I didn't realise that at first. The LE specialist nurse at my local LE Clinic has been fantastic as working to ensure the best garmants for me through trial and error. Also, if you have access and can afford regular Manual Lymphatic Drainage therapy (from a qualified MLD therapist) it would also help relieve pain your son may be having.
All the best to you and your son.
Catherine
Thank you for response. It is helpful to hear how it feels to have lymphoedema.
Our son has MLD once a month and he really enjoys it. I was very surprised a three year old would sit still for half an hour but he does!
Wishing you well.
Thank you Catherine for your help. I also struggle with this. Is that St George's hospital in London that deal with this issue as I really need help. Getting burning sensation under foot and hard to walk.
Hello Londongirl
Do you have lower limb LE and the burning in your feet? If you have both then you could seek a referral to see Dr Gordon at St George’s Hospital LE clinic. Dr Gordon is a LymphoVascular Specialist and clinical lead - she is knowledgeable about nerve difficulties exacerbated by LE (and she’s super lovely).
You can only be referred to the LE clinic by a Consultant (of any discipline). If you live in Wandsworth your GP can refer but not if you live outside of Wandsworth.
Ten weeks ago I changed from the medication prescribed by Dr Gordon two years ago to Cannabidiol aka CBD oil. During my April 2018 appointment with her and her Fellow Dr Ho, it was discussed as an alternative for nerve pain relief, but to date no trials conducted only anecdotal evidence of Cannibis Oil and CBD oil providing excellent pain relief.
I started taking a very high quality CBD oil (I thoroughly researched this oil for use myself and anyone reading this should do the same). Sadly, GPs are in the dark about CBD oil which I discovered upon asking 3 GPs in my local surgery - they looked at me blankly upon my asking if they knew anything about CBD oil. Historically, it was used for thousands of years in cultures the world over as a pain relieving oil (it’s sourced from Hemp and Marajuana/Cannabis plants). Hemp/CBD oil is legal in thd UK but not Cannabis oil, not yet but will likely be in the years to come.
I was sceptical CBD oil would help but after 4 weeks I went off the prescription drugs entirely and only taking CBD oil. The pain relief is better than when I was on the drugs and I have no horrendous side effects that come from prescription drugs!! It’s something that anyone who has nerve pain to consider trying in light of thd prescription drugs eg Gabapenten having SO many awful side effects.
I’m not sure if any of my reply is helpful!?
Whilst I don't get pain exactly, I'm often aware of an uncomfortable tightness in my affected leg / foot, especially after a lot of standing or sitting still with my leg down. It's better if I can elevate my legs while sitting and keep moving while standing rather than being upright and still.
I also find walking more tiring than other people seem to, which I presume is because of the extra weight I'm lugging about in that leg.
I'm sure your son will get better at communicating his feelings as he grows, but well done to you for doing all you can to understand him.
I am so sorry to hear about your son. Here is what I can tell you. There are mornings when I don't even want to put my feet on the floor and dragging around extra weight is tiring. On the days when I can jump right out of bed, by early afternoon I'm tired and my feet are really hurting. The pain radiates up the legs. Because of the swelling, it can throw your balance off which can cause the balls of your feet to just scream in pain. It also can cause your shins to hurt and throw your back out of alignment. As the day continues my shoes get tighter and cause pain but sometimes it doesnt registrar right away. Suggest you ask him how his feet feel during day and also check them. Sleeping can be very difficult. I realise that if I sleep on my side the weight from one leg on top of the other cause a deep ache. Suggest a pillow to put between knees. I find that when I rub peppermint and gaba lotion on in the am and again during the day it helps some. I canticipate express to you enough just how much your feet can hurt after just a few hours. I find i need a lot more sleep. StandingStanding in one place for to long is hard on feet and legs. Also walking without proper shoes on tile flooring can cause pain. I had to get certain tennis shoes. Can he elevate his feet and legs when he is at school? I hope this helps you some. At his age it is so hard to articulate exactly what he might be feeling. Maybe in hot weather put ice on his legs for a little while. Good luck.
Thank you for your response. I will definitely try to be aware of encouraging him to sit with his feet up and hope that helps. I must say he is not keen on walking for long, I don't know if that is because it is uncomfortable or just because he knows mummy will pick him up!
Wishing you all the best.
I also read that you said pediatrician says it isn't painful. I was told that to and it is just plain wrong. If he says his feet and legs hurt then they hurt.
Hi, I do have the lymphedema in my feet which has spread from my legs, I am constantly tired and at times I do have sharp pain like needles going into my feet and legs. In my opinion your little boy is brave, and it is no wonder he will be unhappy at times, as the pain is continuous and you learn to live with it, I must say I do have my off days when I could sit and cry, it must be awful for him. Brave little soldier.
Hi gilly123 I'm 54 and I feel the same as you. Milroy's since birth. Very tiresome!! I'd love to discuss treatments/pain killers etc. God bless 
Kenton
Hiya, I am not sure that I can help you but I will give you any information that I can.
Pain killers, I take many, l take Tramadol x 2, 3 x day, Gapapentin x2 ,2x day, Paracetamol 3x every 4 hours, I also wear morphine patches 1@25grammes x4days apart. These painkillers just keep the pain stabilised at a level I can tolerate. My legs are a major problem the pain is so bad some days I am so miserable, the lymph nodes have broke through the skin, I am on antibiotics to keep infections away and antihistamine to stop itching. Every day I must wash, cream and bandage my legs, I cream my feet and tubegrip my feet, this makes it very difficult to buy shoes, at this time I an waiting for shoes to be made for me through the NHS, this will be a blessing. I don't know if this is of any use to you or others reading it, any questions please ask, I will try to answer them. 🌻🌼🌞
Gill xx
So sorry you are going through this. Please could you give me more info about how to get shoes made by the NHS? My feetcare very small but mega wide and swollen plus arthritis and ultra sensitive. Currently have multiple layer bandaging on. Can only walk few steps in kerraped shoe for bandaged feet. Thank you.
Me too !
Hi Anne16,
I'm not sure what you mean by me too, and who is was meant for.
God bless 🙂
I can't recommend swimming enough. It will be fantastic for him, for his feet, and who knows, he might even become a champion!
Thanks for the suggestion. He loves swimming and I try to take him every week. You have just encouraged me to stick with it! Thanks.
Hello there KH509.
I've had Milroy's since birth in both feet and now legs and more. I think that possibly your son is being bugged/bullied and he feels bad that he's not like everyone else. I was and it affected me. I have many of the symptoms of all your previous replies. I also have extra eyelashes/distichiasis. I'm very light sensitive. I hope this helps!
God bless you and your son
Kenton
Thanks for your response. That is interesting that you mention light sensitivity as that is definitely true of my son too.
You mention that you now have lymphoedema in your legs as well as your feet. So am I correct in saying your condition has worsened over time? We have been told we should be able to manage his condition but obviously we worry about it worsening over time.
We have had no contact with anyone else with Milroys so thank you for responding.
Hi there KH509
Thanks for your reply. I'd love to be any help that I can. My daughter has it in one foot only she's 24 now and managing okay. You are correct about my condition. It is getting worse. I swell constantly. I'm still learning how to manage mine. It's funny that a person that suffers from fluid retention should drink lots of water!
My email address is
Golfislikelife@gmail.com
If you'd like to communicate more
God bless!
Kenton
I really like all of the comments here. I find it amazing the lack of knowledge about lymphedema in the medical community. I am sure the comment the poster mentioned regarding her doctor indicating lymphedema is not painful is not uncommon. I have lymphedema in my left left and foot. I do have a constant feeling of pressure and tightness especially in the top of foot and between the toes and a general heavy feeling in the entire leg. If i was to describe lymphedema its like your limb is wrapped in a heavy rubbery blanket that you cannot remove.
Saying there is no pain is stupid these people no got a clue as they have never experienced it them self I would say also nobody is the same some have hardly any pain others a short walk they find unbearable .Many years ago when I started suffering with this it did not stop me I would tackle many tasks . I loved walking gardening decorating but five years down the line it all gradually got harder now after 20 years everything is a struggle .Your poor child to be suffering with this at such a young age I do hope all goes well for him in the future and it does not be too much of a burden for him god bless you both
Thank you replying. I am sorry to hear things have become a real struggle for you.
At the moment my son's condition is very well managed and obviously he is young which no doubt helps. We do worry about how things will progress in the future.
God bless you too.
It does hurt and any medical person who says it doesnt us just plain ignorant and annoying. Ive had mine since ten and am about to turn 40. I cant remember not being in some kind of pain or discomfort. Some says r good some are bloody terrible. If he says hes tired and xant walk he's not being a sook, i wish i had someone to carry me some days. I also find im perpetually exhausted and any illness affe ts my whole body even if it isnt inmy liegs it justs seems to overload the system. Most important thing is his mummy caresabout him enough to ask. Hugs from australia.
Thanks very much for replying. I actually feel like you have described what I see in my son. He seems to take ages to get over colds and is lethargic for a long time after getting one. I started giving him kiddie vitamins as I thought it just can't be right that a simple cold knocks him out so much, but maybe it's the lymphoedema. It has really helped me to read these responses as I feel it has given me more of an insight into the day to day challenges.
Wishing you all the best from England!
I'm now in my 60s, I was born with this condition. I remember some mornings waking and not being able put my feet to the ground as they hurt so much. My mum would sometimes push me in a pram even though I was 5. Being a girl it was embarrassing that I could never wear pretty shoes and sometimes even had to wear boys shoes to school as they were wider. I was quite clumsy and would fall often. I couldn't run as it felt like heavy weights on the bottom of my feet. I learnt to push through the discomfort and did run but was always last.
Over the years I've learnt to manage what I can and can't do. Nothing has stopped me, I've just adapted. My shoes are now bought from Internet still not as flattering as I would like but not too bad. Consultants still are rubbish at giving advise and do not know how to deal with this condition. The biggest best thing that helps me is massages and drainage techniques. I don't wear stockings (even though medical profession says yes) I've found they never have helped me, they are the most uncomfortable thing going and having been born with it I haven't known anything different. The only thing my GP told me that was good advise was to make sure I drank plenty as this condition can affect your kidneys. (More so than someone without this condition) don't forget I'm in my 60s, so things are beginning to go wrong as you would, expect with the years but my kidneys are still going strong!
Having fat feet and legs has never stopped me doing what I want to do, I've only ever seen it as a nusciance not a disability. I hope your son doesn't have too many obstacles to overcome. Yes exercise is good but within reason if he aches then stop, massage and rest. X
Thank you for sharing how you have been managing your condition. My son's consultant described the condition as 'a nuisance' which we thought at the time, well we can handle 'a nuisance' which is a whole lot better than some other conditions they originally thought he had.
We don't treat him any differently to our other son and we hope the condition doesn't stop him from doing whatever he wants to do. I hope we will just be aware of his needs until such a time that he can explain them himself.
Wishing you all the best.
Hi KH509,
A trampoline or rebounder is a great way to stimulate lymphatic flow.
Enjoy your day 🙂
Hi all. Just an update to see if anyone has experienced similar. My son is poorly with a cold today and is wiped out by it. It is his third cold in four weeks and I just feel it's not right. We're off to the doctors this afternoon. I know they are building up their immunity at this age but I feel he can't quite seem to get himself back on track and I am going to ask the doctor if it could be in any way linked to having lymphoedema.
Poor little chap. His feet will feel heavy, hot, uncomfortable and not supple. Make sure his skin is well moisturised and keep an eye on any broken skin. Your GP should refer him to a paediatric clinic.
Similar to Chris 21 I am in my 60s and have had LE since birth, not understood by the Doctors/consultants I was given electric shock treatment for my 'flat feet' !!! However my younger years weren't so bad and I managed to wear ordinary shoes and even boots and sport etc was fine, it's as Ive got older that it has become more of a problem. In hot weather my feet and lower legs feel like the skin is stretched so tight that it is very painful and Ive had cellulitis several times.
Encourage your son to keep active and watch his weight as he grows, massage regularly and use cream to keep the skin supple this will help- drinking water often as well and taking action if he gets any cuts or scratches with antiseptic spray etc to prevent cellulitis.
I cant answer for anyone else but I do have a tendency to get bad chest infections if Im near anyone with a cold- may not be related but that's why I try to control cellulitis without taking anti-bs as it destroys your immunity.
I wish you and your son all the best.
Hi KH509
Just read this and wanted to reply as I imagine you must be so anxious about your son.
I don't have Milroy's but developed primary lymphoedema in my legs in my twenties. I'm now 39 with 2 pre-school age boys. Whilst my condition has gradually worsened over time by spreading to my feet, I have rarely experienced much pain. Getting the correct type and fitting of compression garment has been crucial (the only real pain I can recall over the years was from ill fitting toe caps).
I know I am lucky compared to others on here but I just wanted to share my experience in case it may help ease your anxiety a little.
I was lucky to be referred to a proper lymphoedema service very early on so have been managing my condition from an early stage, and I'm sure that has helped enormously. Excessive exercise or extended periods of standing makes my legs feel tired and they ache. Hot weather makes me grumpy as that's when I can feel the swelling the most (and I can't wear sandals or shorts to keep cool! Although that's just through vanity really, if I'm at home I'll wear anything!). And since becoming a stay at home mum I'm on the go much more, I've realised the impact sitting at a desk all day had.
Compression, looking after the skin, exercise and rest, weight management - these are all the things that a good lymphoedema service will tell you about. l don't have any experience of Milroys, but if his lymphoedema is managed well from early on, whilst it must be tough on him and you I am sure he will still be able to enjoy the things that all 3 year olds do. I was never offered any MLD so if your son is getting that from an early age too then that's a really good thing.
Do keep us posted on how he's getting on.
Wishing you both all the best.
Oh and if it's any help my 3 year old has been going through a phase of being tired a lot too (no evidence that he's inherited the condition so far).
Thanks so much for your response. It is good to hear that, in some cases, it can be well managed and not impact your enjoyment of life. That said, I can only imagine how tough the summer must be as my son does get properly sweaty when wearing the compression socks, bless him.
Thanks also for mentioning that your three year old has also been tired. I hope it's all part of normal development for my son.
Best wishes to you too.
KH509 Bless your little one. It really is horrid, your feet swell, tingle because of the fluid build up, even your toes, the soles of your feet feel so so sore, fluid again. Just can not walk some days through discomfort. It can make you cry (yep, adults too), feel very depressed, it hurts and stings like nothing on earth and it does make you very tired indeed. Only relief is when your feet are up (mine are up quite high) during different times of the day. It burns and stings like hell when you put them up because you can feel the fluid draining back down.
Not at all surprised your little one is sleepy at school. He is very very brave because it is that uncomfortable. It does make you cry believe me.
Hope our comments have been a little help to you, take care xx
Oh I feel sorry for your little boy. I hope he gets all the support he needs as this condition can make you feel very tired, So let him have a nap to rebuild his energy.
I have primary LE in both feet and legs. In my very early years Mine started in my feet and ankles are extremely swollen which get worse as the day goes on. I get extremely tired as my feet ache so much and the burning pain when walking my feet are extremely sensative and to wear shoes is a nightmare as they make the swelling and condition worse. When I was younger I would wear wide trainers but now I where Birkenstock flip flops as my feet get so hot and are badly swollen I have both legs elevated whenever I sit down to ease the pain and help to reduce the swelling and my bed is elevated with a support cushion for my legs. Or you can use a bricks on the base of the bed to raise it up. Years ago that is what I had to do before I could get a support cushion.
I now wee alot every hour I need to visit the loo so if I have to go anywhere I can not have a drink unless I am near a toilet.
Walking has become very painful its like walking on sharp pieces of glass and cycling was the same.
Can you learn to do massage on his feet and legs as soft stokes to the skin will help him to relax and help the fluid to move around his body.
Hi! I am currently 28 and have Milroys it was present at birth and officially diagnosed at 2 years of age, I also have a son who is now 19 months who was diagnosed at birth based on his presentation and my history. As a child myself I used to really struggle with walking and would complain about my legs hurting, the same is true with my condition today, I wouldn’t say it’s pain that is unbearable but pain like a constant ache which I find gets worse as the day progresses and with more activity, they say excersize is good for lymphoedema and moving the fluid which I believe is true but at the same time there’s a balance between the activity he’s doing and getting his leg up for some much needed rest. When I was little I was advised to sit with my legs out in front of me (not crossed) and I used to elevate at home and still do, I bought a triangular pillow to go at the end of my bed to raise the mattress and that provides great relief at the end of the day but would recommend checking with one of his professionals if that’s okay, mine was recommended to me when I was in primary school by my physio but I know you have to be careful with little ones when raising their legs above the level of their heart. My little boy has only just started walking and we’re finding the swelling has started getting much worse but I am yet to think he is experiencing pain with it, I hope this helps and if I can be of any more help to you and your little one let me know xx
hi everyone’s
I am 31 hoping to get pregnant.diagnosed with primary lymphedema in both legs. Will appreciate any advise prior to pregnancy and during it,
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