Let’s talk about the “P” word. The one word in healthcare that seems to be acceptable everywhere in medicine except the world of lymphedema. Drum roll…
P A I N
If you gather around a group of Lymphies online or in person, this subject inevitably comes up. When listening to a person talk about it in person, I find myself unconsciously touching my worst of my two LE legs. Sometimes I lean forward and rub my back. Almost like a self soothing defense mechanism. The proverbial placation “There, there. It will be okay.” When I was at the NLN, my fellow Lymphies talked about the flight impact to our bodies in varying degrees. This conversation included pain.
My father talked about lymphedema pain long before I ever experienced it for the first time. He did not complain, but he did acknowledge it and warned me about it. I think his biggest pain was from his cellulitis bouts. The annoying pain for him was barometric pressure changes. I scoffed at this when I was young and early on with my LE. I thought it was some kind of old wive’s tale. Now I experience it myself, and it is very real.
There are some doctors and physical therapists that subscribe to the school of thought that pain and lymphedema do not go in the same sentence. The first time I heard this, I was stunned. If I were to show the feature picture of this blog post on how my swollen feet looked in 2014 to any person walking down the street and ask “Do these feet look like they are in pain?” What do you think the answer might be?
DUH! YESSSS!! To have legs like this feels like your skin will split open. Can you imagine your skin splitting open?
Inflammation in most circumstances equals pain. Sprained ankle swelling and post surgical swelling are all inflammatory responses. Why is lymphedema swelling pain not universally acknowledged?
Let’s face it, if I showed a 3 yr old my swollen feet picture, they’d say something along the lines of “You have an owie.” It honestly boggles my mind that today in 2017 with all of the information instantly at our fingertips, people still debate whether LE is painful.
This is why I was so happy at my CDT evaluation yesterday to learn that my hospital had adopted a NEW patient intake form specifically for lymphedema patients. Happy dance!!!! This form also included the holy grail of all intake questions.
- Do you experience pain with your Lymphedema?
- On a scale of 1 to 10, what is the severity?
- What, if anything, eases your pain?
Wait. What?? Let me tell you I wanted to jump up and kiss and hug the powers that be that approved this change. Someone somewhere actually wanted to know about MY pain. I began to scribble fiercely and in detail. YES, I HAVE PAIN!!!
Pain is unique and highly individualized. Pain is PERSONAL. Pain can make you feel alive. It can bring you to your knees. I had an outpatient surgery once where I was sent home without taking the pain medicines in advance. I threw up on the side of the road from so much pain. I literally saw stars, white lightening, and felt like I couldn’t breathe.
Be that as it may, I know I will never know the pain my Dad experienced with over 20 years of cellulitis bouts under his belt. When he was Stage 4 metastatic cancer unbeknownst to him, he was still taking Tylenol. His doctor took off his glasses and looked at me incredulously. Staring me straight in the eyes he said, “Your Dad is one tough man. I’ve seen people with scans like these that can’t even move, and he’s still walking to the bathroom. Don’t count him out yet!”
Since it’s so personal, it’s tough to talk about in that sense. I would say I have a high threshold for pain because I live with it every day. It’s just part of my existence. Lymphedema is not the only incurable lifelong condition I have. I’m sure there are others out there who feel the same. Obviously there are others with more severe and complex cases that deal with a much higher degree.
There comes a point when you just can’t take it anymore. I’m at that point right now. The picture with the red pants above are my legs back in February, but they don’t look like that right now.
My right leg, LE since ‘94, has been giving me problems since July 2017. At first I chalked it up to typical summer heat exacerbation. Then I attributed it to what I call “old LE”, my own made up term. Finally I went to the doctor and said enough is enough. The swelling, as pictured below, is slowly creeping back up despite my best efforts. It affects my entire leg to the hip.
Speaking of “old LE”, I didn’t have pain in 1994 when I i first presented! Not 20, 15, or even 10 years ago. Heaviness, tightness, and discomfort but nothing like this. Like a migraine in my leg that never goes away. The pain I have today did not surface until 2010, so at that point I was 16 years in and bilateral. Sometimes it feels like I’m walking on broken glass.
Now that I also have truncal LE, it’s hard to go a day truly pain free. I cherish the pain free days dearly when I have them though.
Everyone is so different. It’s impossible to say whether all patients will experience pain with LE, but conversely it’s irresponsible to say no patients experience any pain or lymphedema is not painful. That’s simply not true. Anecdotal or not, it’s very real.
At this point, I combat my pain with my lymphedema toolbox and CDT. However, I am not naive enough to believe that I will not need pain medication in the future.
My Pain Has a Voice
I’m so glad the new LE patient intake form was adopted at my hospital. I felt much better talking about and voicing my concerns with my CLT. It gives me comfort that my pain is being tracked and recorded as part of my medical records.
At the end of the day, we just want to be acknowledged and validated for what we feel. We may appear to look normal on the outside, but that’s not necessarily what we feel on the inside.
Be kind to all for we know not what internal battle another person is facing.
This is why I always close my videos with the line, “I’m wishing you great lymphatic health, and I hope that you are pain and cellulitis free.” Rest it peace, Dad. ❤️
Drop your thoughts on pain in the blog comments below.
All my Best,