Tag Archives: National Lymphedema Network

Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit

 

Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit  

National Lymphedema Network – Educating Patients Online 

Part 3b of 3b 

Exercise and Compression Garments:

Lymphedema Remedial Exercise as a part of CDT requires compression garments or bandages.3-5 There are no studies on the use of compression garments when performing stretching or flexibility exercise alone.

Our visiting young cousin from Norway rode her first recumbent trike in Silverdale and wore "What is COPD" tee shirt while she was here.
Our visiting young cousin from Norway rode her first recumbent trike in Silverdale and wore “What is COPD” tee shirt while she was here.

My young cousin, Malin from Norway is included here because COPD (Chronic Obstructive Pulmonary Disease) began in 1997 for me and led into my long ride into medical conditions – one after the other and my gathering weight attracted lymphedema as surely as fresh bread and butter sticks to peanut butter and strawberry jam. 

“The NLN Medical Advisory Committee (MAC) recommends using the guidelines for aerobic and resistance exercise to guide use of compression during flexibility exercise since flexibility exercises may be combined with other forms of exercise. 

The amount and type of compression for exercise should be decided with input from a professional knowledgeable about lymphedema. There is no strong evidence basis for the use of compression garments during exercise; however, most experts in the field of lymphedema advise the use of compression during vigorous exercise for people with a confirmed diagnosis of lymphedema.

Melissa showing me the latest fast, protective lower leg support
Melissa showing me the latest fast, protective lower leg support

Melissa Mercogliano, Center for Orthopedic & Lymphatic Physical Therapy in Port Orchard, WA. recently showed me a new and easy way to add support stockings…easy except for we Tub’ettes.

“One study suggested that individuals with lymphedema who do resistance exercise without compression may increase swelling. 

20 Resistance exercise may reduce limb volume when used as an adjunct to compression therapy in people with confirmed lymphedema.

8 One study showed that aerobic and weight-lifting exercise was safely performed without compression in women at risk for breast cancer-related lymphedema.

9 That study showed patients who developed lymphedema could continue to exercise with compression garments. Compression garments should be measured by an individual trained and experienced in fitting compression garments for lymphedema and should be at least Class I compression for upper extremity. Higher classes may be required for more severe lymphedema and for lower extremity lymphedema.

 1-IMG_29033-IMG_29074-IMG_2909

Custom sized, each leg. This pair is old...notice the crinkles below the rubber dotted band. The replacement compression stockings are black.This pair is about one year old.
Custom sized, each leg. This pair is old…notice the crinkles below the rubber dotted band. The replacement compression stockings are black.
This pair is about one year old.

I throw the stockings in a little zippered mesh cloth bag and into the washer on a short cycle, regular soap, extra rinse – cold water and smooth out and let them hang to dry.

I prefer the toe less stocking so my toes don’t get scrunched up and have two different kinds. The little rubbery tips around the tops of both help them from sliding on down my leg and cutting off circulation.  Ask your doctor. 

“A hand piece (gauntlet or glove) is recommended when exercising with a sleeve to avoid causing or exacerbating hand swelling. 

Definition of Individuals At Risk for Lymphedema:

Individuals at risk for lymphedema have not displayed signs and symptoms of lymphedema but may have sustained damage to their lymphatic systems through surgical lymph node removal or radiation therapy.

Additionally, individuals at risk may have surgical incisions in the vicinity of lymph transport vessels.

Individuals who have family members with hereditary lymphedema may also be at risk.

An individual’s risk of lymphedema may change over time depending on factors such as weight gain, age, and changes in medical condition. 

It is the position of the NLN that:

Exercise is a part of a healthy lifestyle and is essential for effective lymphedema management

Before starting any exercise program, individuals should be cleared for the program of activity by their physician.

Lymphedema Exercises (also known as Remedial Exercises) are specific rhythmic muscle and breathing exercises used as a part of lymphedema treatment in Phase I and Phase II

Complete Decongestive Therapy (see the NLN Position Paper on Diagnosis and Treatment). http://www.lymphnet.org/pdfDocs/nlntreatment.pdf 

In Phase II lymphedema maintenance, these exercises can be combined with or integrated into a regular exercise program.

After intensive treatment with CDT, the person with lymphedema should work with the certified lymphedema therapist or qualified lymphedema specialist provider (MD, NP) to adapt their remedial exercises into their fitness and weight management program at the time they are moving from Phase I (treatment phase) to Phase II (self-management).

Individuals with or at risk for lymphedema can and should perform aerobic and resistance exercise in a safe manner.

The individual with or at risk for lymphedema may benefit from working with an Exercise Physiologist and/or Personal Trainer. The person with lymphedema should inquire if the trainer or exercise physiologist has experience working with lymphedema and other medical conditions. Certification for personal trainers varies. Patients who are unsure of about the qualifications of a community exercise practitioner should work with a certified lymphedema therapist or health care provider to assist them in finding a community exercise program or professional.

In general, individuals with a confirmed diagnosis of lymphedema should utilize compression garments or compression bandages during exercise.

Individuals at risk for lymphedema may or may not utilize compression garments during exercise; this is an individual decision to be made with guidance from a care provider and/or therapist based on risk, activity, and conditioning level.

Individuals at risk for lymphedema will benefit from most forms of exercise tailored to their individual needs.

Individuals at risk for or with a confirmed diagnosis of lymphedema should avoid repetitive overuse of the affected part. Sudden increase in an individual’s usual exercise duration or intensity may trigger or worsen lymphedema. It is likely that a program of slowly progressive exercise for the affected body part will decrease the potential for common daily activities to result in overuse.

Exercise should be started gradually, increased cautiously, and stopped for pain, increased swelling, or discomfort.

The risks of exercise for the individual with or at risk for lymphedema must be balanced against the risks of deconditioning that undoubtedly results from not exercising. A deconditioned body part with or at risk for lymphedema can do progressively less without risk of overuse. As a result, exercise is recommended for those with and at risk for lymphedema.

The NLN cannot specifically determine the safety of exercise for any individual. The guidelines in this Position Paper provide general principles, but do not substitute for medical evaluation and recommendations from a health care professional. It is the responsibility of all individuals with or at risk for lymphedema to consult with their health care provider regarding their own specific needs. 

References:

1. Tidhar D, Katz-Leurer M. Aqua lymphatic therapy in women who suffer from breast cancer treatment related lymphedema: a randomized controlled study. Support Care Cancer. 2010;18(3):383-392.

 2.Moseley AL, Piller NB, Carati CJ. The effect of gentle arm exercise and deep breathing on secondary arm lymphedema.Lymphol. 2005;38(3):136-145.

3.Boris M, Weindorf S, Lasinski B, Boris G. Lymphedema reduction by noninvasive complex lymphedema therapy. Oncol (Williston Park). 1994;8(9):95-106; discussion 109-110.

4.Földi E, Földi M, Weissleder H. Conservative treatment of lymphoedema of the limbs. Angiol. 1985;36(3):171-180.

5.Földi M, Földi E, eds-in-chief. Foldi’s Textbook of Lymphology for Physicians and Lymphedema Therapists, 2nd ed. Munchen, Germany:Urban & Fischer; 2006.

6.Bergmann A, Mendes VV, de Almeida Dias R, do Amaral E Silva B, da Costa Leite Ferreira MG, Fabro EA. 

Incidence and risk factors for axillary web syndrome after breast cancer surgery [published online ahead of print October 17, 2011].

Breast Cancer Res Treat. doi:10.1007/s10549-011-1805-7.

7.Fourie W, Rob KA. Physiotherapy management of axillary web syndrome following breast cancer treatment: discussing the use of soft tissue techniques. 

Physiotherapy. 2009;95(4):314-320. 

 

NLN • 116 New Montgomery Street, Suite 235 • San Francisco, CA 94105

Tel: 415-908-3681 • Fax: 415-908-3813

Infoline: 1-800-541-3259 • Email: nln@lymphnet.org •

Online: www.lymphnet.org 

Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx 

Several years ago, I called Harrison Medical Center and asked if non-cancer patients with lymphedema could attend their support group meetings.  At that time, it was limited to cancer patients.

Yesterday I called the following number to be certain it was still up to date.  It is and the closest Lymphedema Support Group I know about.

If anyone knows of more, let me know – I can post it here.

 

Kitsap County Closest Support Group 

Northwest Lymphedema Center

Kent, WA (24.11 miles * Meeting times: Date varies  Phone: (206) 575-7775 

 

Tub’etts! 

I’d like to be part of a support group of fatties who NEED to lose weight for their health’s sake – with or without current medical issues. No dues – a scale and occasionally health professionals willing to talk to us – to educate us – to motivate us – guest speakers. 

I have been told that I’m not a good candidate for bariatric surgery…so, before I push that particular button – is there anyone beside me, who wants to be part of an obese/tubby support group to work together for weight loss and good health? 

To lose weight through good nutrition and exercise is my goal. 

We are dying of too much fat, fellow Tubby Ones.

Will you join me in our battle to shed the fat and live healthy?  Let me know…

 

Thanks for reading… Sharon O’Hara familien1@comcast.net

Kitsap County Library System has educational Lymphedema books for the layperson – just ask.

National Lymphedema Network urges the American College of Surgeons to …

Greetings… Following is a copy of an email plea from the National Lymphedema Network to the Journal Of American College of Surgeons.

I’ve produced it here almost verbatim because I have leg lymphedema and it is one of the most painful difficult to live with diseases I have.  Last year it flared again and oozed, taking  about 10 months to heal, including a month in Harrison, a month at Martha and Mary Rehab Center, and months of my husband daily cleaning and re-wrapping my lower legs and feet.

Breast cancer survivors need to be educated to the risks of getting lymphedema.  I can promise – as a patient with lower leg lymphedema – nobody should get this disease if it can be avoided.

Patients, please talk to your doctor about lymphedema.  If she/he will not discuss it, find a doctor who will.

 

“National Lymphedema Network

In response to an article published in the March issue of the Journal Of American College of Surgeons (http://www.journalacs.org/article/S1072-7515(12)01312-9/abstract) the NLN Medical Advisory Committee is responding to a Press Release released on February 25, 2013 (http://www.facs.org/news/jacs/lymphedema0313.html)  in the Journal of American College of Surgeons, “Breast Cancer Patients Fear for Developing Lymphedema Far Exceeds the Risk

Respectfully:

Saskia R.J. Thiadens RN

Executive Director

 

“March 1, 2013

On 2/25/2013 the Journal of American College of Surgeons released a statement entitled, “Breast Cancer Patients’ Fear of Developing Lymphedema Far Exceeds the Risk.” The press release was in response to findings from a single-site study published in the March issue of the Journal of the American College of Surgeons noting that some breast cancer survivors take extraordinary measures to try to prevent lymphedema that may not be necessary. The rate of development of lymphedema in the limbs of the study patients (N=120, followed to 12 months) was similar to reported incidence in the medical literature. Three percent of patients having a sentinel lymph node biopsy developed lymphedema and 19% of patients having an axillary lymph node dissection developed lymphedema. The study indicated that patients with sentinel lymph node biopsy worried and took precautions as much as those who had axillary node dissections.

The National Lymphedema Network agrees with the statement in the press release that “future research should be aimed at better predicting which women will develop lymphedema, thus allowing for targeted prevention and intervention strategies and individualized plans for risk-reducing behaviors for each woman during and after her breast cancer treatment.” However, since this type of risk stratification and broad education does not currently exist, it is important for patients to be given accurate information by their doctors and oncology care providers on reasonable approaches to reducing the risk of developing lymphedema.

The American Cancer Society estimates that in 2013 there will be about 232, 340 new cases of breast cancer in the US and there are approximately 2.9 million breast cancer survivors in the US. If 20% of those who have axillary dissections, and, conservatively, 3% with sentinel lymph node biopsies, are at risk of developing lymphedema, this is still a very large number of women who have reason to be concerned about their risk of developing lymphedema.

Lymphedema is a progressive, debilitating condition that is not merely swelling, but an immune system dysfunction. When recognized late in its course, or inadequately treated, lymphedema leads to chronic infection and progressive disability. Women who are at risk for lymphedema have reason to be concerned and these concerns should not be minimized.

The National Lymphedema Network advocates a reasonable approach to risk reduction guidelines, given that a large population of women is still at significant risk of developing lymphedema. In the NLN Position Paper on Risk Reduction, revised in 2012 and available at www.lymphnet.org , a risk stratification approach is detailed so patients can take appropriate precautions according to their medical situation. Every breast cancer survivor deserves accurate information about her or his risk of developing lymphedema and reasonable precautions based on the available scientific evidence.

The American College of Surgeons, and all providers of care to breast cancer patients, are encouraged to provide every breast cancer patient with accurate information about lymphedema, so patients can make informed choices. Given the imperfect state of the science on risk reduction for lymphedema, there are many reasonable, healthy suggestions for patients at risk of lymphedema to reduce their risk, such as weight management and exercise. The Position Papers on the NLN website on Exercise, Risk Reduction and Screening for Breast Cancer Related Lymphedema were written by a panel of medical experts in the field of lymphology and lymphedema treatment.

The National Lymphedema Network urges the American College of Surgeons to endorse the NLN Position papers, provide them to their members, and acknowledge that a large number of breast cancer survivors are at risk of or currently have lymphedema. These patients need education and information that will allow them to take precautions that are reasonable and not excessive.  Education is the key and then what each one does with that information is a personal choice and a part of personalized health care.”

…NLN Medical Advisory Committee  *  Hotline: 1.800.541.3259

National Lymphedema Network | 116 New Montgomery St. | Suite 235 | San Francisco | CA | 94105

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Best wishes and thanks for reading …   Sharon O’Hara <familien1@comcast.net>