Pain Management

Lymphedema Pain Management

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.

Lymphedema Products can help with all of your compression garment needs.

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.

Compression Bandages

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.

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Comments

  1. 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 .

    1. 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.

  2. My oldest Daughter has lymphedema in her legs. They hurt here pretty much all the time. What pain relief is recommended.

    1. 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.

  3. 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.

  4. 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.

    1. 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.

  5. 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.

  6. 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!

  7. 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.

  8. 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.

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