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Lymphland International Lymphedema Online
Lymphovenous Canada:
Pain in the lymphedematous arm following treatment of breast cancer - evaluation and treatment

Michael J. Brennan, M.D.
This article originally appeared in the NLN Newsletter, January-March 1999. Reprinted with permission
from Dr. Michael J. Brennan and the National Lymphedema Network
.

Introduction
Lymphedema is a well recognized complication of breast cancer and its treatment. It has been described as
the most distressing complication of breast cancer therapy. Despite recent advances in lymphedema
treatment and availability of comprehensive therapies, lymphedema remains a difficult to live with and
control. A number of complications have been described in women suffering with lymphedema. These
include infection, limitation in range of motion, emotional distress, and the potential to develop a second form
of cancer, lymphangiosarcoma.

Pain has been described in several clinical reports of women with lymphedema. In addition to the obvious
physical discomfort and potential to further lessen quality of life, pain has been implicated as a potential
contributor to depression and other emotional distress in women with upper extremity lymphedema. The
purpose of this article is to describe those common pain syndromes encountered in patients with
lymphedema, discuss any significant clinical implications, and review the evaluation and potential treatment
options for various causes of pain.

Prevalence
Pain has been defined by the International Association for the Study of Pain as "an unpleasant sensory
experience associated with actual or potential tissue injury or described in such terms." The prevalence and
incidence of pain in lymphedema are not well known. No prospectively controlled data exists, nor are their
any large population based reviews attempting to define the scope of pain in this population. Its prevalence
has been reported as ranging from 30 to 60 percent. However, these numbers are based on small studies of
women receiving therapy for lymphedema. Therefore, these reports may be biased towards over
representation. Clinical experience does suggest that pain is present in a significant number of women with
post axillary node dissection lymphedema.

Part of the difficulty in determining the prevalence of pain is that different types of pain are encountered in
individuals afflicted with lymphedema. Additionally, pain is a subjective experience, evoking individualized
responses and reactions. Furthermore, the taxonomy of pain itself makes for added difficulty in defining the
presence and significance of pain. Thus, "discomfort" in the axilla following surgery may not be reported by
one individual as "pain", whereas another might consider this sensation as being significant pain. Certainly,
several distinct pain syndromes may be encountered. The more common and well known causes include: the
pain associated with infection; pain from surgical changes in the axilla; postmastectomy pain syndrome;
brachial plexopathy; and, various arthriditis. Less common causes of pain include peripheral entrapment
neuropathies; pain from vascular compromise; and, cancer recurrence. (Table 1)

An important question remains unanswered: is lymphedema itself painful, or is pain reported due to
concomitant pathologies in the affected arm; or is pain the result of edema causing increased pressure on
certain structures in sensitive areas, such as the carpal tunnel? There is also a relatively common complaint of
generalized discomfort, often characterized as a sense of "heaviness", "tightness", "fullness", "pressure" or
"stiffness". These descriptors of discomfort, often presaging the actual onset of measurable edema, likely
represent the stimulation of pressure sensitive mechanoreceptors and nociceptors.

Yet, one individual on questioning about the presence of "pain" may volunteer the presence of one of these
sensations, whereas another might not. Another issue clouding our understanding of the prevalence and
nature of lymphedema associated pain is a tendency for patients to under report the presence of pain.
Though this may seem counterintuitive, many individuals with a history of cancer, breast or otherwise, deny
the presence of pain. This stems from fears that pain represents a potentially ominous sign; concern that the
healthcare provider may see the patient reporting pain symptoms as a "bad patient" or as a "complainer"; or,
under reporting may represent a cultural or ethnic bias of the patient.

Pain Syndromes
Several different, well defined pain syndromes exist in women who have undergone breast cancer therapy.
These syndromes, their diagnosis and treatment will be reviewed.

INFECTION
Perhaps the most recognized cause of pain in women with lymphedema is bacterial infection. Cellulitis and
lymphangitis are well described in the lymphedema literature. Not only do infections cause pain in the limb,
but severe progression of swelling may develop either concomitantly or following an acute episode.
Additionally, systemic symptoms such as fever, lethargy and nausea may be present and be associated with
compromise of cardiovascular or pulmonary function. Infection may occur without any obvious cause or
following incidental trauma.

Rapid diagnosis iseasily made based on clinical evaluation. Treatment is typically rendered at home or
outpatient setting with oral antibiotics. However, if the patient exhibits signs of systemic illness, or if oral
antibiotics do not lead to resolution of pain then a course of intravenous therapy may be warranted.

Clinical experience suggests that the erythema that generally accompanies cellulitis may linger well after the
infection has been adequately treated. However, persistent pain, particularly with compression, such as
when assessing for pitting, may be a clinical indicator of residual infection. Blood testing may be warranted
should this discomfort be noted.

MYOFASCIAL PAIN SYNDROMES AND SOFT TISSUE PAIN
Myofascial pain syndromes are due to injury of the soft tissues, typically muscles and connective tissue
surrounding the breast as well as those tissues that make up the axilla. Clinical experience suggests that this is
among the most frequent pain problems encountered in women with lymphedema. The spectrum of
myofascial pain syndromes in this population ranges from simple limitations in range of motion due to a
muscle trigger point to frozen shoulder including adhesive capsulitis.

Myofascial pain may arise from the actual surgical trauma to the soft tissues, the immobilization that occurs
post-operatively or from a combination of these. These problems often are the presenting complaints of
individuals to a rehabilitation service, less for the pain but more so because of the functional impact that
results. Patients note difficulty in fully abducting and externally rotating the arm, thereby making overhead
activities difficult. This is especially pressing when an individual requires proper positioning for radiotherapy
following breast conservation surgery.

Diagnosis of myofascial pain syndromes is clinical. Physical findings of trigger points, taut bands, tender soft
tissues and restrictions in range of motion readily suggest the diagnosis. Occasionally, imaging of the shoulder
may be warranted, especially if there is pain with passive range of motion. This might suggest bone
involvement or destruction. Treatment is multidimensional and includes stretching and range of motion,
antiinflammatory medication and the judicious application of thermal modalities. Proper therapy is important
in so far as lymphatic drainage from the region may be adversely affected with reduction in range of motion
in the shoulder region. Selective use of local injections may be considered in those cases where exercise and
medications are insufficient.

Axillary scaring from node dissection may cause pain and limitations in range of motion similar to that
encountered in myofascial pain syndromes. The scar may harbor neuromas and tender points, and as it
matures cause further stiffness in the shoulder. Scar hypersensitivity from local nerve injury may also cause
discomfort. Treatment includes massage, creams and occasionally injection done in conjunction with range
of motion exercises.

The development of a tough fibrous cord is a well described yet poorly understood phenomenon in women
who have undergone axillary dissection. These cords may occur in the axilla, the upper arm or at the elbow.
Some data exists to suggest that these are lymphatic tissues. Others have reported them as being
inflammatory tissues. Similar to myofascial pain syndromes, these cords my cause restrictions in range of
motion and may be painful. Symptomatic relief with mild analgesics and antiinflammatories is usually
sufficient. Range of motion exercises may aid in the maintenance of joint function. Clinical experience suggest
that these may be self limiting in nature, usually abating in an abrupt fashion.

NEUROPATHIC PAIN SYNDROMES
Post Mastectomy Pain Syndrome is due to surgical trauma of the intercostal brachial nerve. It may be seen
in as many as 10 % of mastectomy patients. It may be seen in breast conservation surgery, though its
incidence is less well understood. Pain is generally in the lateral chest wall, the axilla and medial upper arm.
The pain is often described as burning, dysesthetic and aching. It is often associated with decreased
sensation over the involved area, and frequently, trigger points may be noted in the chest wall or axilla.
Occasionally a neuroma may be palpated as well.

Diagnosis is generally clinical, based on the history and physical findings. No specific testing is required.
Treatment is generally local with massage, TENS, stretching and injections (trigger point or nerve blocks).
Acupuncture has not been studied for this pain syndrome, but may represent an attractive alternative.
Systemic pharmacotherapy with adjuvant analgesics, such as tricyclic antidepressants, anticonvulsants and
oral antiarryhthmics may also be required for more severe cases. (Table 2)

Phantom breast pain has been reported in mastectomy patients but has not been reported in women
undergoing lumpectomy. Local counterirratant therapies, acupuncture, TENS and adjuvant analgesics may
alleviate symptoms.

Brachial plexopathies have been well described in women who have been treated for breast cancer. Two
distinct syndromes have been reported: radiation plexopathy and plexopathy associated with disease
recurrence. Lymphedema is more frequently associated with radiation plexopathy. This syndrome is usually
seen several months to several years following radiation therapy. Patients often complain of pain, sensory
changes, and, occasionally, weakness in the limb. The distribution of symptoms and physical findings is
generally confined to those areas receiving innervation from portions of the upper brachial plexus. This
includes the shoulder girdle, lateral aspect of both the upper and lower arm, and the lateral hand.

Several theories exist as to why the upper portion of the brachial plexus is at particular risk for radiation
injury, and include the amount of exposure to radiation fields and the relative protection offered to the lower
plexus by superimposed anatomy. Skin changes and lymphedema are frequently encountered at the time of
initial presentation. Differential diagnosis includes plexopathies from other causes such as tumor recurrence;
epidural disease; and, peripheral neuropathy.

Patients with complaints and findings suggestive of involvement of the lower plexus must be considered to
have recurrent disease until proven otherwise. It has been suggested that the lower plexus is at risk from
compression by either lymphadenopathy arising in the periclavicular lymph nodes or from lesions in the apex
of the lung. Lower brachial plexopathies tend to cause weakness in the intrinsic muscles of the hand, and
sensory changes in the medial hand and forearm. Additionally, the presence of a Horner's syndrome, ptosis,
meiosis, and anhydrosis, is more likely encountered with a compressive lesion of the lower plexus.

All patients presenting with symptoms or findings suggestive of a brachial plexopathy should undergo either
magnetic resonance imaging or CT scanning with intravenous contrast enhancement. If the imaging study is
negative and symptoms persist, re-imaging every three months should be considered. If a mass is present
then tumor recurrence is likely. If diffuse scarring is seen then radiation fibrosis is probable. However, in
those cases where a poorly differentiated abnormality is noted is noted on imaging studies, controversy
exists as to the next step.

Complimentary imaging may better define the lesion, i.e. MRI scanning as a follow up to CT studies. Biopsy
may provide a definitive diagnosis but may result in additional morbidity. Another option is electrodiagnosis.
Electromyography involves several needle insertions and subsequent probing of muscles. Needle studies will
reveal a characteristic myokymic pattern seen with radiation induced plexopathy, yet absent with a
plexopathy due to tumor recurrence.
However, this author has seen several cases of lymphedema induced by simple needle injury, and therefore
cannot advocate the injudicious use of this test because of the potential to cause or exacerbate lymphedema.
This is a personal bias. Treatment of pain and any functional impairment due to a plexopathy is typically
multidisciplinary in nature. Adjuvant analgesics, TENS, occupational therapy and bracing may all need to be
employed.

Peripheral neuropathies may be divided into several categories, including polyneuropathy where symmetrical
involvement of nerves are found such as seen with chemotherapy, and entrapment neuropathies such as
carpal tunnel syndrome, where only single nerves are compromised. Polyneuropathy may arise from a
variety of causes including chemotherapeutic agents, vitamin deficiencies, diabetes, and renal failure.

Polyneuropathies typically present with sensory complaints and may be seen in limbs not affected by
lymphedema. In fact, the lower extremities may have symptoms first. Treatment is with supportive and
functional care. Pain is addressed with adjuvant analgesics.

Certain entrapment neuropathies may be seen in women with upper extremity lymphedema. The most well
known is Carpal Tunnel Syndrome, entrapment of the median nerve at the wrist. This is a common cause of
pain and numbness in the hand. Patients may also complain of forearm pain as well. The initial presenting
symptoms may be dysesthesias that awaken the patient from sleep that rapidly improve with shaking of the
hands.

Tapping of the wrist over the course of the nerve will produce tingling and pain into the lateral hand. Phalen's
test, maximal wrist flexion, will often reproduce symptoms in less than one minute. Nerve conduction
velocities will provide definitive diagnosis in borderline cases. Treatment includes bracing, edema reduction,
vitamin therapy and exercise. In some patients, specifically those facing functional compromise, minimally
invasive carpal tunnel release may be necessary.

One author has reported no substantial swelling in a series of cases so treated. Clinical experience suggest
that individuals undergoing treatment for lymphedema who also have carpal tunnel syndrome should avoid
therapies that might significantly increase the pressure within the carpal tunnel. Specifically, intermittent
pneumatic compression should be avoided. Other entrapment neuropathies of the median nerve have not
been reported in patients with lymphedema.

Ulnar nerve entrapment in the medial forearm or the elbow may produce pain in the medial hand and
forearm. This is a very unusual cause of pain in this population and must be differentiated from a brachial
plexopathy. Nerve conduction studies will provide definitive diagnostic information. Treatment includes
bracing and edema reduction.

Other exacerbating factors should be addressed to try and ameliorate symptoms. For example, proper
positioning with the elbow avoiding maximal flexion may lessen symptoms.

VASCULAR PAIN
Deep vein thrombosis may cause pain and swelling in the arm. A severe form of venous occlusion which
may be associated with venous thrombosis is the superior vena cava syndrome. Axillary vein or more distal
veins of the extremity may become obstructed and produce pain and swelling. The limb generally has
evidence of venous outflow obstruction including distended superficial veins, a dusky or bluish color and
swelling. Pain may develop either acutely or gradually.

Diagnosis may be readily made with ultrasound evaluation of the major venous structures. Treatment
involves compressive sleeves, anatiinflammatory medication and occasionally anti-thrombotic therapy.
Certain forms of lymphedema therapies such as intermittent pneumatic compression should be avoided
during active therapy of a deep vein thrombosis.

ARTHRITIS AND JOINT PAIN
A variety of joint pains may be seen in women with lymphedema. Osteoarthritis, rheumatoid arthritis and
certain oligoarthopathies such as gout and pseudogout not only cause pain but have the potential to worsen
edema. Acute inflammatory arthopathy may be difficult to differentiate from trauma or infection. Careful
history and physical examination supplemented by appropriate imaging and blood work should be able to
make the proper diagnosis. Treatment requires appropriate use of nonsteroidal antiinflammatory
medications. Bracing and applications of modalities may also bring about symptomatic relief. Systemic
agents may be of benefit in cases of inflammatory or deposition arthropathies.

Evaluation of pain in the lymphedema patient.
Queries concerning the presence of pain should be made at the initial and all subsequent follow up visits. If
pain is identified, the clinician should attempt to identify the likely cause and then devise an appropriate
treatment strategy. Areas that should be reviewed when inquiring into a pain complaint include its location,
quality and severity; factors that worsen and ease the pain; and, whether it is progressing, easing or static.
Accompanying symptoms such as sensory complaints and weakness should suggest a possible neuropathic
pain (plexopathy, entrapment neuropathy). Fever, warmth in the arm and a history of trauma may suggest an
infectious cause. Acute joint swelling and pain may be due to gout or joint trauma. Finally, detailed
assessment of functional and daily life activities should be made.

Pain therapy may be done in concert with most edema reduction techniques. As described above, certain
therapies need to be avoided with certain pain etiologies. For instance, intermittent pneumatic pumping
should be avoided with the presence of carpal tunnel syndrome and venous thrombosis. It is also to be
avoided while in the acute treatment of an infection. These conditions though are likely not contraindicated
with complex decongestive therapies, and, this treatment modality may in fact be salubrious to infection and
entrapment neuropathies.

Conclusion
Pain appears to be a frequent complication encountered in the management of lymphedema. Certain qualities
of pain may suggest its etiology. Evaluation and treatment should be done as quickly as possible so as to
lessen any unnecessary suffering and treat remediable causes before edema worsens.


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Table 1.
Common Pain Syndromes in Lymphedema
Infection

Cellulitis
Lymphangitis
Myofascial Pain Syndromes

Frozen Shoulder
Neuropathic Pain Syndromes

Postmastectomy Pain Syndrome
Phantom Breast Pain
Brachial Plexopathies
Peripheral Neuropathy
Chemotherapy
Entrapment Neuropathies
Carpal Tunnel Syndrome
Ulnar Entrapment
Vascular Compromise
Deep Vein Thrombosis
Arthritis
Degenerative
Inflammatory
Table 2.
Adjuvant analgesic classes useful in the treatment of nerve pain
Tricyclic Antidepressants
Anticonvulsants
Oral local anesthetics
Antispasticity agents
Neuropleptics
Capscacin
Dr. Brennan is Chief of Rehabilitation Medicine at the United States-based Bridgeport Hospital and works
for the Ahlbin Centers For Rehabilitation Medicine.

If you have concerns about your condition, please consult your doctor or a specialist in this area.
http://www.lymphovenous-canada.ca/paincan.htm