Lymphedema Pain

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 .

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

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

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!

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

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.

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

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.

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