Hi all

Here I am yet again worrying!

Further to my recent post about a lower footstool at work, I mentioned this to my Cancer nurse during a check up ( 3 years in remission) the nurse agreed that it did sound like this was the cause for the pain the fact my legs are dangling for almost 8 hours a day and very little movement involved,

She then went on to say 'I don't think it will be cancer related!'

This caused me to panic as I just presumed it was pain from lymphedema ,

She advised me to ask my Lymphedema nurse but the thing is the nurse always says I should not be experiencing pain and last time advised me to see the Dr as it could be some other cause!

I don't appear to have swelling ( which I thought was always the case)

But it's almost like a feeling of fluid moving up my thigh into my groin with intense pressure!

I wear support stockings all day!

Sorry for the long post

11 Replies

  • Can you get an assessment for your workplace setup? Sounds like your work station may need some adaptations.

    Move about on a regular basis - such as at least every 25 - 30 minutes? Just for a couple of minutes - very important for the lymph movement in the lower limbs. Drink more water - then movement could be incorporated into trips to the loo!

    As for the old chestnut about 'Lymphoedema should not be painful' - makes my blood boil. Total nonsense. Many people experience pain and discomfort as a result of lymphoedema - primary and secondary. If it causes you concern, and makes you anxious, talk to your GP. I know many people who find benefit from regular analgesia (paracetamol) and in some instances, muscle relaxants and mild tranquillisers.

  • Yes, I am going to ask about adaptations and I really think I need to move more too!

    Yes, the Lymphedema nurses don't seem to accept that pain does seem to be a big contributing factor with lymphedema !

    Thank you for your reply 🙂

  • Any one that says you don't get pain with lymphoedema obviously doesn't know what they are talking about. Some days the pain in my legs is really bad and it has been like that for years.

  • Yes, this seems to be the case with a lot of people,

    I can have weeks with just the feeling of pressure but then weeks of pain keeping me awake at night!

    Thank you for your reply 🙂

  • I am in total agreement - you do experience pain with lymphoedema. Just as an example, (I have primary) I have been up now a couple of hours, done some ironing, loaded the dishwasher and a few other household tasks, and I am now sitting with my feet elevated as I have pain in my feet, toes and lower legs and all this before 9am and this is a good day! Take care. X

  • I agree totally Anne, I have primary lymphoedema too if I have to stand in the same place for 20 mins I begin to feel pain in my legs.

  • Hi I also have lower extremity LE and was in the same situation as you a few years ago with legs hanging for hours - even with periodic stand/walk around breaks I was still in extreme pain from hugely swollen legs. Gravity pulls lymph down which compounds LE in our legs.

    I then had a workplace assessment by the DWP. In the UK we are entitled to this assessment - self referral. You can google the tel or obtain it from HR.. The DWP assessor was very thorough and took on board all the information I gave her despite never having heard of lower limb LE. She wrote a thorough report with clear recommendations for my employer to modify my workstation. Now I have a workstation that caters to my Lymphie legs with a chair and leg rest that is very comfortable for my legs; and my workload is adjusted down to allow for 30 minute self-MLD breaks twice during my working day.

    I didn't expect the DWP workplace assessment would result in much but thankfully I was wrong! x

  • Whoever says that lymphoedema is not painful is welcome to swap places with me for a day !!!!

  • Sorry to read about your pain and workstation issues. I had a similar problem when I returned to full time work after cancer treatment. In the end my employer with advice from occupational health arranged for me to have an adjustable desk so I can alternate between sitting and standing and I found that helped quite a lot. I understand the desks are coming down in price all the time and available in a range of styles and prices. I believe it cost my employer less than £500 to get this in place for me and that seems a small price to pay to offset long term health issues. Good luck, I hope you can get the support and adjustments you need to improve things at work.

  • I can't understand why they say you don't get pain with lymphoedema! I've had pain in my arm. It's minimised when well controlled with compression but can still ache sometimes. If I use my arm too much, I get pain. So many people report pain with lymphoedema- clearly it is common.

  • Thanks all for your replies

    I've got my old footstool back and had my legs more elevated today which has helped!

    It does seem overall that pain is definitely associated with lymphedema.


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