Lymphedema and Pain

I just want to state that this is just my personal experience with pain and lymphedema. I believe that every person’s experience with lymphedema is unique and therefore what I feel may not be what anyone else feels. I do know that a lot of doctor’s do not have a clue when it comes to lymphedema and pain. I have met a few that said people with lymphedema do not have pain. I hope they are reading this. Feel free to comment on this post about your own experiences with lymphedema related pain.

I decided to write about the pain because over the last 2 weeks I have had more pain and extra swelling than I have ever had. My life has gotten really busy and my family is down to 1 car so I have not been getting as much leg elevation as my legs like to have.

I live with a constant level of pain on a daily basis, even on my best days. I can actually ignore it. What I feel on these days is just like a mild throbbing headache, but in my legs.

When I am on my legs more than usual, my legs swell more and I can actually feel the pressure of the fluid stretching my skin. When I stand it feels like my skin is going to break. When I say “on my legs” that means when I do not have my legs elevated. I consider sitting in an office chair as being on my legs because, for me, that is just as bad on my legs as standing is. I find that walking does not make my swelling worst. It is much better than standing or sitting.

This week I seemed to reach a new level of pain. I have been on my legs for 18 hours a day without a day off of them. I am having pain without even standing on them. It feels like there are hammers inside my legs trying to break out. The swelling is going up behind my knee making bending them really difficult and causing even more pain. Every step I take makes me hold my breath as I try to manage the pain. Monday night I was in such pain by the time I got home that I ended up getting the shakes and I could not get warm and I felt like I was going to throw up.

Then there are the infections… that is a totally different type of pain. For me, I have been very lucky. I can feel  the infections early before I need to get IV antibiotics. The minute I feel the itchy pain in my legs I start taking antibiotics and it clears up in 10 days or so. Other people suffer a lot more with the infections and  cellulitis than me.

I know that when people read this they are going to ask “Why does she bother to go to work when it causes her so much pain?”. I tried staying home for 2 years and I hated it. Yes my legs were not hurting as much and my house was cleaner but I hated it. I felt like my life was passing me by and I basically had no life. I love being a real estate agent. I love where I work and the people there.  I love looking at houses and meeting new people and helping them sell their home and/or find a new home. Working actually helps me forget my pain.

Do you know what the odd thing is? Most people do not know that I am in pain. Of course my family knows and lately I have let a few other people know (certain coworkers, my trainer at the gym, friends). I have had lymphedema for so long that I can put a smile on my face no matter how much pain I am in.

I, personally, do not take meds for lymphedema pain. I figured that as I get older and my lymphedema gets worse my pain would get worse so I would have to continually up my meds. Instead I use music to ease my pain (other people may use books, tv, movies, etc.). Music can transport me to my happy place and it usually works for me.

I don’t want people to treat me differently so I am not even sure I want to post this…

(after showing  it by my niece Taff (who also has lymphedema and has been told by doctors that it doesn’t hurt) she told me to post it so I did)

4 thoughts on “Lymphedema and Pain

  1. Oh my gosh! I love when people post their stories. I feel like this is a mirror image of me! However, my lymphodema puts me down with elevated legs every day. The moment I put my legs down, the swelling creeps up. I thought I was a wierdo with the shakes, not being able to regulate my body heat and the nausea! Thank you again for sharing.


  2. Hi again Karen, I applaud you for being determined to continue working! I found that even with staying home and telecommuting I could not remain productive enough to do a full days work, what with having to elevate my legs, or move around periodically to shift the pain. Do you have leg weakness too? A cane really helps with my walking, so maybe a cane would help you too? Thanks again for your blog; am so glad I found it.


  3. Karen – thank you for your brave, gutsy & courageous comments & story. We never really know what any of us may be going through because either we do not have the time, busy lives, or have not been there & done that, so we haven’t a clue. It greatly humbles me to read your words & the words & stories of others who have Invisible Illnesses. I pray there will be a new medicine that comes your way to alleviate the majority of your pain & swelling & that of others so they can live a normal life – whatever that is. I myself know pain, but mine is associated with CFS and there are days I simply want to hide in a hole and bury myself. So, hang in there & keep writing & sharing, it’s thereputic & blesses others…… thank you again. – Christy S –


  4. I just read your stories of your illness and the chronic pain that you suffer. I too suffer with chronic pain. Recently I went through detox to get off all addictive pain meds. You are absolutely right about the escalation of your body needing these pain meds in order to survive. I now understand this to be the truth. If at all costs to all who read these posts, Get Off Pain Meds and try other forms of treating your condition. I love the idea of Music because it really can transport you and your mind and soul to a much more positive place. There may be exercises that you can do, mind exercises also, meditation, diet, therapy, chiropractic services, ect. ect. I wish all sufferers of pain and the various conditions, all the best in your daily lives.


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