For many lymphedema sufferers, their condition is more of a nuisance than a crisis. While certainly not welcome, some patients find that lymphedema is a condition that can be managed, at least. For example, lymphedema of the arms, which may affect the upper arm(s), lower arm(s), and/or hands, is not uncommon among women who have undergone treatments for breast cancer. For others, lymphedema pain management can be an ongoing issue.
Chemotherapy, surgical removal of lymph nodes, and/or radiation treatments can all affect the health of the lymphatic system in the arms, or elsewhere in the body. Symptoms may emerge not just within weeks of treatments, but sometimes within months, or even years following successful treatment.
Characterized by swelling, changes in the range of motion, and even pain, this condition is chronic. In most instances, it is also progressive, although evidence suggests that aggressive and vigilant management of symptoms can help slow or even halt this progression among some patients.
Does Lymphedema Hurt?
When confronted with the possibility of lymphedema following cancer therapies, many patients ask: Does lymphedema hurt? The short answer is: yes, it can. A more nuanced answer might note that while lymphedema can be painful for some patients, it is not always necessarily so. Nevertheless, when patients experience lymphedema pain, what are their options for lymphedema pain management?
To begin, it should be noted that lymphedema, whether painful or not, requires careful management to minimize symptoms, limit progression, and perhaps, to avoid the development of pain and loss of range of motion. In the case of breast cancer treatments — and the lymphedema that may subsequently result — medical professionals are now proactively addressing the risk of lymphedema by limiting the number of lymph nodes that they remove.
Fewer missing lymph nodes tend to translate into a correspondingly lower risk of developing lymphedema in the first place. This more careful approach to identifying “sentinel” lymph nodes allows doctors to identify affected nodes, and to make inferences about possible metastasis of the disease beyond the breast. In the past three decades, surgeons have discovered that they can remove about one-tenth the number of nodes they routinely removed in the past, sparing healthy nodes and thereby curtailing the risk of subsequent lymphatic disorders such as lymphedema.
Experts note that the total removal of all lymph nodes in the underarm area, for example, is associated with up to a 60% chance of lymphedema risk. Another promising advance involves cutting-edge procedures to re-route lymphatic channels. Known as lymphovenous bypass and vascularized lymph node transfer. These microsurgical procedures promise to further reduce the incidence of post-surgical lymphedema among breast cancer patients.
If you suddenly develop pain associated with your lymphedema, it’s extremely important that you consult with your doctor to rule out the possible reemergence of breast cancer. Assuming your pain is not due to re-emerging cancer, there are steps you and your doctor can take to limit your pain and discomfort due to your lymphedema.
Treatment
The first step toward effective pain management involves treatments to limit the scope and progression of your lymphedema. Doctors may prescribe light exercises to encourage good blood flow and lymphatic drainage. This represents an evolution in medical wisdom. In the past, lymphedema patients were discouraged from engaging in exercise. Now the opposite is true. Appropriate, exercise is considered an important way to help limit lymphedema progression — and the pain that may accompany it.
The second step typically involves a prescription for medical-grade compression wear. In the case of arm lymphedema following breast cancer, this ordinarily involves wearing a graduated compression sleeve, and/or a glove or gauntlet (fingerless glove), which must be worn during waking hours.
These items help coax lymph away from the extremities and back toward the heart for recirculation. Another approach may involve a type of massage therapy called manual lymph drainage. This hands-on therapy also helps encourage the drainage of fluid out of affected tissues and back into lymph vessels, for recirculation back toward the heart.
Experts may also prescribe complete decongestive therapy. This is a sort of comprehensive approach to management that involves the use of manual lymph drainage, daily bandaging, skincare, exercise, and compression. Research has shown that this approach can achieve “significant volume reduction” in affected limbs, as well as improvements in pain and other symptoms.
In some instances, your healthcare professional may recommend pneumatic compression. Unlike a graduated compression sleeve, which relies on passive compression, this device is connected to a pump, which inflates and deflates at regular intervals, helping to encourage the movement of lymph fluid away from the extremities.
In some cases, bandages may be recommended. These are tightly wrapped around the affected area to exert pressure on underlying vessels and help force lymph out of tissues and back towards the trunk.
Lymphedema Pain Medication
It should be noted that the above treatments are considered first-line therapies for the prevention or reduction of lymphedema-related pain. By reducing swelling, and minimizing the progression of the disease, it is possible to avoid — or minimize — the pain or discomfort associated with lymphedema.
Of course, in some instances, your physician may be willing to recommend over-the-counter medications, such as non-steroidal anti-inflammatory drugs (NSAIDs). Examples include naproxen, ibuprofen, acetaminophen, or aspirin. A recent study examined the use of the NSAID, ketoprofen, for the control of skin changes associated with lymphedema. Available in both over-the-counter and prescription strengths, this drug was found to limit the adverse changes in skin that accompany lymphedema. Although pain reduction was not specifically studied, patients experienced significant reductions in undesirable skin alterations, which investigators interpreted as a positive outcome, suggesting that the drug helped limit the progression of the disease.
It should be noted, however, that NSAID use is associated with an increased risk of gastrointestinal bleeding, especially with long-term use. In cases of severe pain, your provider may be willing to prescribe a stronger, prescription pain medication. Always check with your healthcare professional before taking any medications.
References
Avrahami R, Gabbay E, et al. Severe lymphedema of the arm as a potential cause of shoulder trauma. Lymphology. 2004 Dec;37(4):202-5.
Panchik D, Masco S, et al. Effect of Exercise on Breast Cancer-Related Lymphedema: What the Lymphatic Surgeon Needs to Know. J Reconstr Microsurg. 2019 Jan;35(1):37-45. doi: 10.1055/s-0038-1660832. Epub 2018 Jun 23.
Stanley G. Rockson, Wen Tian, Xinguo Jiang, Tatiana Kuznetsova, Francois Haddad, Jamie Zampell, Babak Mehrara, Joshua P. Sampson, Leslie Roche, Jinah Kim, Mark R. Nicolls. Pilot studies demonstrate the potential benefits of anti-inflammatory therapy in human lymphedema. JCI Insight, 2018; 3 (20) DOI: 10.1172/jci.insight.123775
Yesil H, Eyigör S, Caramat İ, Işık R. Effects of complex decongestive therapy on quality of life, depression, neuropathic pain, and fatigue in women with breast cancer-related lymphedema. Turk J Phys Med Rehabil. 2017 Nov 13;63(4):329-334. doi: 10.5606/tftrd.2017.779. eCollection 2017 Dec.
Comments
I have lymphedema in both legs , from radiation I had anal cancer. My legs hurt , from the knee down they get really cold. It’s hard to remember what it was like not to have discomfort .
I have Lymphedema in my right lower leg. And let me say this it does hurt especially when your stage 4.. I am in some level of pain or discomfort all the time. Not only is it very painful but I also have random deep shooting nerve pain. That makes me jump and wanna scream. I am planning on asking my Dr about amputation. I’m tired of it. It’s more a pain in the ass. Im 51 and a grandmother of 10. The rest of my body just wants to go go go.. but I am so debilitated with this leg. It would be healthier for me. Better for my physical and mental health. To amputate by choice.
My oldest Daughter has lymphedema in her legs. They hurt here pretty much all the time. What pain relief is recommended.
I have Lymphedema in both legs. I hurt different time. I have bought a pump from flexitouch that I use pretty much everyday I am in pain. It helps the pain for a few days at a time. I notice that if I pump on leg one day and the other the next day it takes away from the pain and pressure. It is only temporary but it is worth to take away the pain for a few days. It makes me walk without pain. I do also take (nsaid)once in a while if I know I have to move around a lot for the day.
I have lymphodema in left arm. Painful most of the time. Helps to keep it elevated.. Compression sleeve helps.. I have cold fingers a lot of the time.
I have it in both legs, lower. I hurt. I want to cry. I am active. I get more swollen the more I am up and walking . NOW what do I do. I have no relieve with over the counter drugs, seeing physical therapist once a week. I have stockings but even they hurt sometimes because my legs continue to swell. I take laxis 40 mg, they bumped me to 80mg for 3 days agywe that my legs went down some. Now since back on 40mg and doing therapy they are going back up.. they hurt. I elevated, do ice packs, everything, no help. Ps never had cancer.
Hi Paula,
I hear you. I’ve never had cancer and have misdiagnosed for months. I was at wit’s end why I wasn’t getting better. I had all this edema and Lasix wasn’t helping. My doc sent me to the ER for IV doses of Lasix, nothing. My cardiologist, nothing. I didn’t get any relief until I went to the vascular surgeon who handled my varicose veins several years earlier. I thought I had peripheral vascular disease and was sure the ultrasound on my legs was going to show venus stasis. I was scared.
When I saw the vascular surgeon, she came in and right away told me my legs were ok. I looked at my legs and then looked at her. That’s when she told me it was lymphedema. I was happy to hear we, at last, had a diagnosis and it could be managed. While I was waiting to meet with a therapist from Tactile medical, which manufactures a pneumatic device for lymphedema patients, my doctor applied unna boots, which is a dressing. Instantly, it started making me feel better. Until my device comes, every week I go and get my bandages changed.
I know how you feel when you say you want to choose an amputation. I sit at my desk and cry because I am in so much pain. It sounds like you are not seeing the right medical team. What I’ve learned is you need a pneumatic device (look up Tactile Medical. This is what I use), unna boots (Its a dressing and you can order them from Amazon), physical therapy (I’ll be starting that soon), and a pain management doctor (changing the one I had). I was misdiagnosed for a few years. I was told it was diabetic neuropathy and was treated along those lines by every doctor. I now feel liberated that I’ve been diagnosed.
I’m 53 years old. I’ve been an ER nurse for 33 years, former attorney, writer, pilot, skier, and now finishing my education as a nurse practitioner. I’m also a grandma. I don’t want to lose my life, nor do I want to lose my legs. I’m not advocating any treatments, but I’m letting you know what is working for me. Finding the right treatment team is what is most important.
The therapist from Tactile gave me good advice. When you are using all of your therapies, life very well may get back to normal. What you have to remember is when you are feeling good, you still have to do your therapies. It is when you are feeling good, you know that your therapies are working.
I had a biopsy, lower back area, Nov. 2013 for non-Hodgkin’s lymphoma and my left leg swelled up and was very painful within a couple days. (My hematologist was perplexed.) Had the first round of chemo right before Thanksgiving and finished treatment Apr. 2014 and was in remission.
Around 2018, my left leg got infected, swollen and VERY painful. This happened about 3 more times over the next year, even though I kept hounding my doctors that I believe I had Lymphedema!
My palliative care Dr. finally sent me to a PT for wrap, massage, and measurements for compression socks and pants.
Just recently my left leg has been swollen and painful again, albeit it’s not as large, but the pain is unbearable and it’s keeping me awake at night!
IT FEELS AS IF MY LEG IS ABOUT TO EXPLODE!
I’m trying to get back in to see a PT for therapy, but was wondering if anyone here has tried Inversion therapy for lower body Lymphedema…? (IE: The inversion table things like Roger Teeter advertises…)
Thank you and keep up the fight!! 💖
I’m so sorry you are in so much pain. I’ve never had cancer nor am I obese &. I have stage 1 lymphedema in my legs.I have the Tactile Medical FlexiTouch pump which really does help. The medical grade compression garments really hurt. I prefer the bandage wrapping.
I did learn from the LE&RN network and a physical therapist that diuretics make lymphedema worse. They explained to me that your body needs the fluids to help push up the proteins up and back out to be drained.
Paula: I too have it in both legs. Do not know why lyposuction cannot be used? Very painful and NSAIDs cause stomach bleeding? They must investigate more options because my pain is unbearable.
I have lymphedema in my right leg and it hurts badly
I have lymphedema in both my butt cheeks and an area at the top of my thigh that I got from mrsa when I had back surgery in June.
Neither my neurosurgeon nor infectious disease doctor would help me. They kept telling to go to my primary and get a water pill. I complained constantly about the swelling and the pain, they just blew me off. I started researching it on my own and that’s when I figured it out. Thank God for Google! just this week I was able to get a confirmation on my research. I finally got to a vascular Dr. who has referred me to a specialist. I haven’t gotten an appointment yet but I can’t wait! the pain is unbearable and keeps me up all night. Not to mention that I still have chronic back pain. I don’t think the surgery worked. I’m in worse shape now than I was before surgery. They ruined me! They are going to pay!
Are there any pain creams a person with diabetes and lymphedema can use with it not interfering with diabetic medication and high blood pressure medication is there any kind of cream for pain with this condition.
Look into a homeopathic medicine from Europe called I TIRES. There is a cream to apply & drops you put in water. They both work wonderfully for lymphedema, lymphatic stagnation or swollen nodes. The cream you put directly on the area that hurts & it actually helps immediately to improve flow & lessen pain or cramping. The drops have lessened my swelling & pitting drastically since taking them daily.
I have lymphedema secondary to Dercums disease & any amount of swelling is extremely painful. This is one of the only thing that helps- the other is aquatic physical therapy- I highly recommend it- the water takes off the weight so you can move more freely & get some needed exercise – & while in the pool you get some relief from pain (& gravity!)
Can you copy the TIRES and drops method to me?
Please repeat or send this article and/or any other information to me. I’m so in need of help and all the doctors for five years just don’ have answers. shaking their heads, etc.
You can get a 5% lidocaine cream from Amazon. They are also known as hemorrhoid cream or tattoo cream. But get the 5%.
Are there any side effects with leg wraps?
I have had lymphedema since my breast cancer surgery in 2015. it hurt when it swelled in the beginning. Then it calmed down. Now today the pain came on strong and fast. No doctor informed me of this. They didn’t tell me anything except wear a sleeve. So here I am in the middle of the covid pandemic and I have this shooting pain in my left arm. The sleeve is long gone as it went through the wash and shrunk. My arm is hot and I have no idea what to do with this. I just want to thank /Cleveland clinic for its ineptness. I don’t want to go out and catch covid, but this really hurts like hell.
I developed lymphedema in my left arm and on my left side under the arm last September following a lumpectomy, radiology treatments and taking Anastrozole. Have had two seromas in the last year each of which had to be aspirated multiple times, limiting my ability to do physical therapy exercises. Pain became constant and miserable a few months ago. Now using a pump sleeve from Biotab which helps my arm but pushes lymph fluid in to underarm area making that worse. Asked to be put on Ketoprofen after reading about studies done at Stamford, 75 mg 3 times a day. My surgeon looked into studies and agreed that I should try it. Started 10 days ago. I am not cured but the results have been nothing short of spectacular so far. The pain decreases every day, the swelling is reduced and I am back to exercising which helps tremendously. Part of the problem is that drugs that suppress estrogen production (like Anastrozole , Exemestane etc. often prescribed following breast cancer surgery )have been shown to suppress lymphatic drainage putting many of us are in a Catch 22 situation. Ketoprofen is an NSAID and has various side effects, (particularly problematic for those with heart issues) so cannot be taken by everyone. Stamford Studies done by Dr. Stanley Rockson and articles for those interested were published in 2018-19 and are on line. I wish the best for all and sincerely hope that those in pain will find relief.
The following must be prescribed by your physician: sigvaris Compreflex Transition INELASTIC WRAP-CALF [for] VENOUS DISEASE, WOUND CARE, LYMPHEDEMA & LIPEDEMA
Medical Device
Adjustable compression device for the calf
Available in various colors
Not made with natural rubber latex
Manufactered by: SIGVARIS, INC., 13055 Riley St., Ste. 30, Holland, MI 49424 USA
FYI: Sigvaris sells various products for treating lymphedema of the body
Once your doctor places the first order with the medical supplier, you can call back and order more in different colors of your choice.
Tactile Medical
FLEXITOUCH®
The Flexitouch Plus system is clinically proven to stimulate the lymphatic system. FYI: I want this, but the U.S. Department of Labor, OWCP has NOT approved my years-old request. TV Talk-show Host Wendy Williams uses this or a similar pump to treat her secondary (2° ) or acquired lymphedema.
Tyler Morton with Tactile Medical tried to assist me and my doctor in getting the US DOL to approve the purchase of a Flexitouch Plus for me, to NO avail.
Addendum: I prefer taking a long-acting version of a drug if one is available, unless contraindicated for the patient. I personally like having a longer, steady-state of the drug in my body ’cause I don’t experience those peaks and valleys of pain relief like I do when I have to take my doses of immediate-release ketoprofen, etc. every 6-8 hours. On that note, ketoprofen is the generic for brandname Orudis. I personally take the generic version: ketoprofen ER (extended-release) 200-mg capsule by mouth once daily (every 24 hours) for secondary (2°) or aquired lymphedema (LE). Note: Some generic companies are owned by the original (brandname) manufacturer of the drug.
Can you copy the TIRES and drops method to me?
Please repeat or send this article and/or any other information to me. I’m so in need of help and all the doctors for five years just don’ have answers. shaking their heads, etc.
I have lymphedema in both legs and feet. I had both knees replaced, then shattered my left femur in 6 ways, so know that leg has a plate down the side of the femur and 14 screws. Just had my right hip replaced a year ago. All the metal isn’t helping any. I don’t for more than 2 hours at a time due to the pain. I have compression socks, but my legs swell so much they start to cut into my legs. Does anyone else have the weeping of the skin. I just wish I was able to describe the feeling and pain to others. It is like most people just think it is swollen. If they only knew.
I’m a guy 79 years old. Since 2019 I have had seven knee surgeries on my right knee, including fusing the knee instead of amputating above the knee.
In 1966 motorcycle accident my left foot barely hanging on just by the skin. All the bones and ankle bones femur., tibia were broken. 1996 I had that ankle fused.
Infections, staphylococcus aureus, MRSA, cellulitis, etc.
Lucky me I got them.
I document in my log the exact time I take Norco (opioid)for the pain in both lower legs.
For a year or two, I was leaking lymph profusely as well as blood.
My friends could not understand the pain I was in thinking that all I had was knee surgery. So stop complaining about pain.
Excruciating pain.
I wore navy blue over the calf compression socks, for maybe 30 years underneath my suit going to work. They no longer fit. I was very very active as a weekend warrior bike riding, and tennis drills.
I have now found my own miracle cures. Maybe it will work for you. I bought compression sleeves for my legs on Amazon that are open on both ends that I cut to 34 inches long for the left and right lower legs. And then I apply Vaseline petroleum jelly to minimize the dry skin eczema, and how easily I bleed by taking Eliquis the blood thinner for AFib. .
Then I apply 6 inch wide Ace elastic bandages, laundered without soap, from just above my toes to just below my knees. and keep my legs at least level if not elevated most waking hours.
6 foot two and was 230 pounds. Now, deliberately, I am down to 175. Easier on my knees and everything else.