MHE and Pain

For too long, too many adults and children with MHE have been told that MHE does not cause pain, leaving them feeling trapped and hopeless living with pain that affects the quality of their daily lives.

Not every person with MHE will experience pain, or have pain that interferes with their daily activities.  However, for many with MHE pain affects their quality of life and their ability to function.


The management of pain in MHE provides many challenges for the patients and for the doctors treating them.  Because of the nature of the disorder, MHE patients may suffer from many different types of pain, in many different parts of their body, each which may require a different type of treatment.   Finding a combination of treatments to address each pain issue can be a daunting task.

Types of Pain


The following is a list of some of the different types of pain that might affect a person with MHE. In some cases, the patient has a combination of several types of pain.


Acute Pain

  • The American Pain Foundation defines acute pain as pain that “occurs suddenly due to illness, injury or surgery.   This type of pain is short lived and tends to go away when the injured tissue heals.”  People with MHE may experience different types of acute pain, including:

    • Exostosis catching or hooking onto surrounding tissue, causing irritation, inflammation and pain.  Pedundulated tumors (smaller, pointy growths) can even cause laceration of surrounding tissue, or catch on nerves, causing excruciating pain.

    • Injury to area where exostoses may be hit, causing pain

    • Post-operative pain.  Many MHE patients undergo numerous surgeries and go through painful surgery and recoveries.

Chronic Pain

  • The American Pain Foundation describes chronic pain as “pain that lasts long enough (after normal healing or for at least three months), or is intense enough, to affect a person’s normal activities and well-being.  Failure to treat acute pain quickly and appropriately when it is first a problem may lead to ongoing pain. In such cases, pain signals remain active in the nervous system for weeks, months or even years.”

  • Many people with MHE suffer from a combination of causes of chronic pain, sometimes affecting the entire body. Such as:

    • Compression of surrounding soft tissue by exostoses

    • Pain from laceration caused by exostoses

    • Joint pain caused by presence of exostoses surrounding joint; sometimes preventing proper fit of bone into joint

    • Musculoskeletal pain caused by compensation for mobility problems caused by exostoses

    • Pain when breathing due to exostosis growing inward toward lung

Night Pain

  • Many children and adults with MHE have difficulty sleeping, something which is not difficult to understand when realizing how hard it is to reach a comfortable sleeping position when you are lying on exostoses, causing further compression.  Pain can also be more difficult at night, because there is no distraction from it.  


Neuropathic Pain


  • Pain started or caused from alteration of the nervous system.

  • MHE patients may experience neuropathic pain as a result of nerve compression or entanglement by exostoses

  • MHE patients may also experience neuropathic pain following surgery

RSD (Complex Regional Pain Syndrome)


  • There have been many cases of MHE patients developing Reflex Sympathetic Dystrophy Syndrome, also known as complex regional pain syndrome, most often following surgery. According to the U.S. Department of Health and Human Services, RSDS “is a chronic condition characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch

  • If RSD is suspected, it is important to obtain treatment, including physical therapy, as soon as possible.


Current Treatment Options


There are certain treatments which are more or less standard in the treatment of MHE: 


  • Surgery is often the first line of treatment, removing the exostoses causing a particular problem.  Many with MHE undergo numerous surgeries; however, removing all exostoses is usually not an option, and there may be complications and pain resulting from surgeries.

  • Medication, either over the counter or prescription, is used by many patients to try to relieve pain.  Physical therapy and other treatments may also be prescribed

  • Self-help Options:

    • For many, a warm bath or heat pack helps relieve aching bones and muscles. 

    • Others prefer ice packs. 

    • For some, trying to keep active with gentle stretches, walks, or modified exercises, helps relieve pain and stiffness. 

    • One of the most important self-help measures is finding a comfortable mattress or mattress topper.  Many people find memory foam mattresses help alleviate night time pain. 

    • Mobility aids can help prevent, or at least lessen, pain.


Each person needs to identify their pain issues, and then try to find options that can help them



Sometimes family members and friends may doubt that a person is really in severe pain, or is suffering from fatigue debilitating enough to interfere with plans or chores.  Some physicians may doubt that the child or adult is in debilitating pain, due to older medical literature that describes exostoses as “painless masses”.    This description fails to take into account the impact of these masses on surrounding soft tissue and nerves, or the impact on joints.    


Generally speaking, orthopedists treat the type of pain that can be resolved by surgery, or short term use of medication (anti-inflammatory and pain medication).  Family practitioners, pediatricians, rheumatologists, may attempt pain management, but be overwhelmed by the numerous challenges to be overcome in overall pain treatment, and are not familiar with the various options and combinations of drugs and treatments that might offer some relief.  Referral to a pain specialist may be the optimum choice, but not everyone has access to a specialist.  Even pain specialists can be baffled by the combination of pain issues that might need to be resolved in one patient.  In addition, some of the MHE patients most in need of pain management are unable to work, are without insurance and cannot afford treatment.  Even patients with insurance may struggle with co-pays for medications, physical therapy and specialist appointments.


There are no easy solutions to this problem, and there is a very real need for the MHE community to better communicate the effects of these many different types of pain.  It is important to relate pain to function.  For example, a child may have bumps in his fingers that make it hard to hold a pencil.   A teacher may see only sloppy handwriting and make the child write more, not realizing that pain is keeping the child from writing correctly.  A child in pain may fidget in his seat at school, to try to distract himself from the pain.  This action can be seen by a teacher as not paying attention, rather than a signal that a child is experiencing pain.  Behavior problems can arise when a child’s pain becomes so severe that he acts out in class, perhaps becoming disruptive or hurting another child.  


An adult may seem withdrawn and distant, but in fact be in pain that is interfering with function and the ability to relate to other people.  


When communicating with your medical team, let them know that the pain is interfering with your normal activities (or your child’s), and give examples.  The more information you can provide the better.

​© 2015 by MHE Coalition.

Proudly created with

Thank you to Nicole Wynn for designing our logos and contributing her original artwork to our website and our hand-outs.  Nicole is a talented graphic designer who just happens to be living with MHE... you can visit her website at

  • w-facebook