Lymphedema Pain

Hi all!

I have Lymphedema in both legs for two years as a result of Lymph node removal having had cancer!

I seem to have the swelling down due to wearing compressions tights every day however,

Almost every night I am kept awake with uncomfortable legs sometimes pain!

My nurse advised I see the Dr as she said Pain is not a usual side effect of Lymphedema

The pain seems to go in the day any thoughts?

Thank you

31 Replies

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  • Well I don't know where she gets that from !! I've always had a dull toothache pain with my Lymphoedema . Sometimes worse then others but when things are really bad depending upon what I've been doing my legs can have a burning pain , my ankles can hurt . Sometimes they throb so much I feel as though I could chop them off lol . I've been told that pain with Lymphoedema can vary from person to person but it's not true in my experience to say that it can't be a usual side effect . As lymph seeps into the muscle structure it's got to be painful as the leg swells . Hope you manage to get some relief , I've been given co codamol for my pain but I try to only take it at night if my legs are really aching purely so that I can sleep as I don't want to get addicted to pain killers . If I responded to every pain I had I'd be taking tablets daily . Some types of pain I can live with until it reaches a certain level but others I need help with . Mines been complicated a bit now for the last four years as I have additional arthritic pain on top .

  • Ps I've had Lymphoedema for 21 years . I find movement helps in the daytime but I have to balance this with the rest I need as well . Unfortunately I have one leg much bigger than the other even though I wear compression garments regularly but I suppose that's the years that I've had it and not been able to fully control it .

  • It makes me so cross when medical professionals say Lymphoedema isn't painful!!! For many Lymphies it is tremendously painful and painful Lymphoedema is documented throughout all the Lymphoedema chat rooms. I'd say painful Lymphoedema is far more common than non-painful based on anecdotal evidence. That nurse should be ashamed for making such a careless and uninformed, totally incorrect statement to you!!!

    I have bilateral primary LE of my legs. As for your night pain - my legs feel differing types of pain at night nut one type of pain is frequent - think its because my muscles are inactive (muscle fibre contractions move Lymph while moving about in the day), and because I go for several hours without doing any drainage. Sometimes it's a pulsing throbbing type pain at night which keeps me awake but reduces after I spent 8-10 minutes doing leg drainage/self MLD and drain my trunk. I find it's worth doing a drain that starts with 10 diaphramatic breaths to help stimulate the upward flow of lymph. I do a lot of breath work in the day both whilst sitting and waking as I can feel the positive effect it has on stimulating/drawing lymph up my legs and moving stagnant lymph out of my lower trunk to drain into the thoracic duct which the diaphram is a part of.

    Sorry for the long answer perhaps it may help a bit

    Take care

  • Thank you for that tutorial as Im basically on my own. I have no Drs who know anything here. So thanks for that help. Gramjane

  • they need to know what they are talking about, I had a lot of pain and was on analgesia from my gp when I needed it so don't hesitate to mention it.

  • I also suffer from Uncomfortable left leg and can toss and turn trying to sleep but my doctor has given me AMITRIPTYLINE TABLETS and I have found they have helped me. I take one an hour before bed and it helps with jumpy/painful leg. Hope this is of help

  • Are you sure your jumpy painful legs are from lymphodema? Could you possibly have Restless Leg Syndrome? I suffer from that and without medication I would be suicidal. I take a generic med for Mirapex, it calms your legs and arms as well if it has progressed as mine has. Please dont suffer, ask your doctor!

    Gramjane

  • Well, this is the thing maybe the actual pain is caused from Restless legs and maybe this is what the Lymphedema Nurse was meaning!

    I will need to speak to the Dr and take it from there!

    Thank you for your reply

    😄

  • Hi my leg is better since I started on AMITRIPTYLINE tablets and it is a mixture of pain and restless leg syndrome I suffer. ( only started when my leg got a lot bigger)

  • Just one comment to add to other replies - just check you have no signs of cellulitis which is very painful and needs antibiotics as it is an infection in the skin. Signs of cellulitis include reddened patches, spreading, often with a clear edge, feeling hot and painful. All the very best!

  • Yes, will be vigilant on looking for these signs,

    Thank you

  • Thank you everyone

    Grateful for all replies as haven't really found any Lymphedema sites that could answer my question!

    So, judging by your replies pain is part of Lymphedema!

    I will take on board all your comments thank you once again 😀

  • I'm a therapist with some knowledge of Lymphoedema (but not living with it). Night pain can be for a variety of reasons - yes, it could be from Lymphoedema - but there could be other reasons - 'restless legs', neuropathy, circulation, infection, spinal, cancer, ... Lots of good ideas here. Don't ignore new pain - check in with your doctor/team. And if it is unexplained and getting worse, keep pushing for answers. If it is pain from Lymphoedema, you could try - deep breathing and self massage and exercises before you sleep and on waking to stimulate circulation of lymph. All the best! :)

  • Hi, I can relate to all the previous replies ( I have primary/ both legs) I wear compression all day and if my legs are particularly swollen I sleep in some old compression stockings which aren't so tight.

    I also have a foam wedge in the bed to rest my legs on and find it very comfortable, it also I believe helps the drainage!

    Best wishes

  • Hi Mitzie

    What kind of foam wedge do you have and where did you get it?

    I've been looking for a foam wedge and need a fairly wide one as I have primary LE in both legs so need both slightly elevated at night. I've been using large pillows but as they move easily I'd prefer a large foam wedge.

    Thanks for any info you can give :-)

    Cat

  • Hi Cat,

    I too searched high and low after my previous wedge virtually disintegrated after many years use!

    I now have one 72cm long, 40cm wide and 16cm high with a removable blue padded cover bought from eBay a year or so ago... unfortunately I have no record of the seller but if you search on eBay for a foam wedge ( there will be many!) And trawl through...some are far to small but hopefully you can find the right size. From memory I think I paid about £20 but well worth it.

    Good luck with your search.

    Best wishes

  • Thank you, I will see what I can find on eBay !

    Take care

  • Hi, I have just been searching ebay and although I couldn't find my transaction for a foam wedge if you search " contour foam wedge" you will see the one I use (turquoise) ...however they seem to be a bit more expensive now !

    Good luck

    Regards Mitzi

  • Thank you for the helpful information!

  • Hi Cat I need to elevate my legs also and like you found that pillows moved easily so I put them under mattress, works a treat 😀

  • Hi Mitzie

    I feel like I need the tightness of compression tights during the night ( if that makes sense)

    Maybe I could wear an old pair as a tester!

    Chocolate-e-clare

    Yes, I will ask for Drs opinion maybe it is restless legs as you mentioned or circulation!

    I will try deep breathing and self massage too!

    👍🏽

  • I have pain in my legs every night. They feel heavy and achy and just very restless. The swelling presses on nerves. Anyone that says there is no pain hasn't had lymphedema. I use purchase peppermint oil from Dotterra or use other brand and mix as bottle says. Peppermint really helps. The other thing I find that helps are lidoderm patches. Good luck.

  • Thank you

    Really appreciate any advice / suggestions!

    I do have peppermint oil so will definitely give that a try too!

    😄

  • I have this ugly affliction in both legs. I just turned 69 and was only diagnosed a few years ago. There are no knowlegable Drs here so I go untreated. I dont have pain as you do, but my legs are quite tender and there is plenty of pain if they get bumped or accidently kicked. They sure are ugly though!! I have begun elevating and brushing with a large, soft paintbrush. Most everyone who posts on this site are from the UK. I live in Oregon, USA. There are many places to get treatment but not where I live. If I were wealthy I might travel but alas I am not so endowed! I hope you find help and relief. I probably wouldnt be nice, tho, I couldnt stand the wrappings and support hose.

    Nope! Take care. Gramjane

  • Oh that is not nice at all to think you cant get treatment!

    One of the good things about living in the UK were lucky having the NHS!

    I did find some cheaper medical compression tights on amazon ( although I know you have to have them measured and fitted properly)

    You also have said you couldn't stand them :-(

    Do you keep them well moisturised ( I keep getting advised to do this)'

    Just wish you were able to find sone way of getting treatment as it seems so wrong and unfair

    Best Wishes 😀

  • Hi gram Jane, I live in USA too. California. Treatment is hard to find. Most doctors don't know what lymphedema is. Therapists are very hard to find. Sad. If you don't like the stockings, have you tried the circaid wraps? Do you have family that can help you with MLD. They have many you tube videos on how to. Hopefully you have some help.

  • I've had lymphedema in both of my legs since age 14 and it can be extremely painful. It has caused me to have severe neuropathy in my right leg and osteoarthritis in my knees.

  • Almost everyone seem to be saying the same thing Lymphedema and pain go together!

    Sorry to hear youhave neuropathy and osteoarthritis too it must be dredful x

  • My lympodema therapist disagrees with your nurse.

    I have MLD once a week. This reduces the measurements on both legs. The measurements are taken every four centimetres along each leg.

    As the day goes on the lymph fluid invades the muscle structure, the legs increase in size and in my case they are massively increased by around 5pm and painful.

    Whenever I sit down I raise my legs which eases the pain but doesn't take it away.

    When I go to bed I raise my legs and leave them raised whilst in bed. This helps to reduce the swelling for the next morning.

    Unfortunately I have GP like your nurse. His ignorance of the condition results in him telling his patients they are simply fat and lose weight even though they have a healthy diet and don't drink!

    There is simply too much ignorance of this painful and debilitating illness.

  • Hi

    Bottom line is you have pain whether the nurse says so or not.

    We are all individuals and symptoms & what works to help can vary a lot

    Me

    R leg effected for 3years now following surgery for cancer

    Only now am I starting to understand what works for me

    Stockings ++++

    Stocking & bandage at night - I struggle with this one but it helps a lot

    Moisturise at least once a day

    Elevate as much as possible

    I tried the massage - for me it didn't work so well but I Know from this website that it helps others

    Water aerobics are fab for me- not swimming - again everybody different

    I run & do weight training - surprising how much this helps me but - had to learn my limit and elevate afterwards

    Try not to sit for too long -keep the lymph flowing , when I have been in my feet for a lot it aches so much and is very heavy

    Eating a healthy diet - if I stuff my face with rubbish then I feel sluggish the next day - lymph system is the waste removal of the body so your body working harder than most already

    Good luck, keeping a diary of what you have done & eaten as might help you to find your levels

  • I think you are spot on there saying everybody is different!

    I think that is just it,

    Knowing what works for us as individuals,

    I try certain things and find my legs ache more so it is getting to discover what is suited to me!

    Thanks for reply :-)

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