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.
Good News
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 Thresholds
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,
Lymphie Strong
This so well written & spot on with the pain that I would bet is experienced by the vast majority of LE patients. My CLT had an intake form that also included questions about pain, so I too was thankful that she & her LE center acknowledged it can be a part of LE. Wouldn’t it be nice if a copy of your blog could be sent to all LE centers & therapists, as well as all medical schools, so they would change their way of thinking about LE-related pain.
Thanks, Terry. I hope that pain associated with LE is studied in the future.
What a wonderful article. The pain is real!
Thank you
Thank you so much for sharing your journey…it helps me know that I am not alone.
Thanks for writing this piece. I live with pain everyday. Some days are much worse than others, but there is always pain. I do find the weather changes have a big effect on me. I also live with 3 other very painful conditions. It makes no since to me that anyone could look at someone with LE and think there is not pain. When I look at some of our groups pictures, I just want cry, because I know how they must hurt. I hope that more doctors and PTs will open their minds and eyes to what we really go through. I am happy you have found a good place to go!
Thank you for sharing. My Lymphie pain began spontaneously in my right leg 8 years ago. It felt like my leg was on fire and I couldn’t even wear my hose because it was just too painful. Even having clothing or a sheet touch it caused me to scream in pain. After many tests thinking it was something else causing the pain the doctors were all stumped. Thankfully the pain is now just in my foot and upper ankle and not all the way up to my hip. It wasn’t until I joined your group last year that I finally knew what the cause of my pain was. Bless you Vern for sharing your wisdom. I’m sorry you are experiencing pain though.
I too deal with LE pain, and it seems to get worst the longer it goes. I remember as a kid not ever having any pain, i hear myself telling people now that I have no pain when asked. And I think that’s bc at one time I had no pain, and it gradually gets worse, so I just learn to live with it. That and the doctors say there is no pain with LE, therefore what I feel must not be pain. Anyways, this was a great post. I agree that there is definitely pain, it comes in different forms, and can be hard to explain.
Lauren, you add an additional perspective from having had LE since you were a child. One of the many reasons I respect your advocacy and bravery in sharing and helping others. Thank you for sharing. ❤️
I’m only a year-and-a-half into lymphedema after breast cancer and removal of axillary lymph nodes. I no longer drive 50 miles to physical therapy for Lymphedema but it is definitely bothersome. I do my own manual drainage at home and wear my compression sleeve. Probably most upsetting is that one day it seems under control and the next day it’s so painful I can’t lift a coffee cup. It’s comforting that there are other people in this club sharing what helps them. Thank you!
Thank you for this. I’ve been pretty well controlled with the swelling with my compression–but I still get some pain, shooting flashes, in my legs. When my legs get a little swollen, it’s more a heaviness and tightness which is uncomfortable more than painful. Ahh–but the cellulitis. Pain, chills, fever, nausea. Twice in the hospital this year. Have to be so vigilant with all nicks and cuts etc. I carry triple antibiotic ointment with me at all times. I never wear shorts anymore, too scared of a mishap.This year’s bouts were result of surgery that I had for unrelated malady that had a tube up my leg to pump drugs to bust a blood clot. Despite my best attempts at keeping that area clean, I failed and had two cellulltis bouts.
Wow, I never associated the pain in my feet (the feeling of walking on broken glass exactly!) as a symptom of my LE. I have gone to countless doctors describing this pain and nothing they did helped – and no one even thought about a correlation to LE.
Thank you!
Wow, I never associated the pain in my feet (the feeling of walking on broken glass exactly!) as a symptom of my LE. I have gone to countless doctors describing this pain and nothing they did helped – and no one even thought about a correlation to LE.
Thank you!
I am glad you posted the article about pain and LE. I tend to blame my pain on other conditions, but now I know where the pain in my feet and ankles comes from. I feel the pain from other conditions is made a lot worse with the LE. I need to get my knees replaced but the Doctor will not do it due to the LE. My knees did not ever swell before. Now they are swollen and hurt more than ever.
Hello. My mom has LE and I know others that so, too. I just moved to a small apartment in a place that was once a little complex for older independents and folks with some independent disabilities. My new neighbor, that I didn’t know yet, and had never seen, fell in the snow the other day. As I ran out to help, others who got there sooner had her up and walking toward her apartment. Her legs were huge and I’m sure she had this truncated as well. She was so slow in her steps. I mentioned I hoped she wouldn’t have any pain from the fall and she told all of us who were near that she just wanted to die. Two days later she felt nothing in her legs and was rushed to the hospital and flown by LifeFlight to the big hospital. When she gets out, it is hoped in a week, she is being admitted to a nursing home where she will probably get her wish.
What I have heard from the neighbors who appear to really know her and care is that she doesn’t take good care of herself. She has been told no gluten but eats crackers and stuff all the time. I have to say I cannot judge her. Seeing her in what has to be LE all over…I don’t imagine she can stand and make meals and has resorted to a life in a recliner with her feet elevated and simple foods she can eat without getting around. My own mom’s experience has taught me that no one wants to help. Doctors don’t care and sometimes, often, blame everything patients say on being fat, needing to lose weight, needing to just go on a diet. Well, I know how hard this is for my mom to hear. She has been trying for years to find someone to help her, to hear her. Your site is almost the only place she has found for validation and at least encouragement.
What can we do when we have neighbors and friends and relatives who should hear that they prob have LE, but then we don’t have any information to give to them anyway, and doctors don’t care, so why bother? My mom needs help and she is fighting with all she has to stay upright and mobile, healthy goals for her. I want help for my mom. I myself might need hat same help, or mybsisters or my daughter. What do I do? Where do I go to push, to learn, to help?
Good evening: My name is Esther from Virginia. Just joined. Do not usually post on internet, but felt lead to do so now. I have had lymphedema 52 years. Now 70 just found out what i had in 2004 when my mother-in-law’s roommate in rehab had the same kind I have. regular feet, hands, ankles, neck head and hands. I weighed 450 pounds and wore 6.5 shoes and 7 ring. Looks like any doctor would figure that was not normal 450 pound fat lady. Not them. I had the broken glass over 50% of my body. My massage therapist finally agreed, kicking and screaming, to try and move the broken glass. She could actually feel it. Feel it break up and move. That really messed with my head. She finally got it all gone. I felt like she had beat me with a wet towel.,As it got less, I got better. Pain diminished. Thank God. I really have a good feeling about this site. Glad I applied and was accepted. Everyone make it a blessed Easter. God bless.
Thanks so.much for this post. I have several medical conditions as well as my Lymphedema, all of them cause pain. I understand as when I was at my worst, it felt like if someone poked me with a pin, liquid would come out. No one listened, I gained 75 pounds. It was awful. I was in pain all the time and it still took 40 years to diagnose me.
Red Songs, I can’t imagine the pain you endured for so long and continue to endure. Yet, you are one of the most positive members of our community. I admire your strength and tenacity!!
I live with this now about every day. My pain is down my sides of my leg. Reading this I know now I am not alone.
My name is Chris Pifer
Thank you for sharing, Chris.
It breaks my heart when I read or hear that “Pain” isn’t a part of LE. This is a straight out lie/falsehood. I always like to tell people who say something like that, do walk a block in my legs and you’ll ask to be back in yours in less than half a block because of the pain.
Thank you for highlighting this. Very important
Well said, Marie.