One of the longest held MS myths was that pain is not a symptom of the disease. That myth has since been debunked. Neuropathic pain caused by disrupted nerve signals is quite common in MS, as is musculoskeletal pain caused by muscle spasms or physical stress on joints and muscles caused by weakness or poor coordination. Fortunately, musculoskeletal pain often responds to physical therapy, stretching, spasticity medications, and conventional painkillers such as ibuprofen.
Neuropathic pain can be more enigmatic. The abnormal sensations you might feel, such as tingling, numbness, skin crawling, itching, burning or prickling sensations, are a form of neuropathic pain called paresthesias. These abnormal sensations may be acute or chronic, severe or mild, painful or just plain weird.
In MS, disrupted electrical impulses in the central nervous system and overly sensitive motor neurons can lead to spasticity and/or painful muscle spasms. The musculoskeletal pain caused by neurologic dysfunction can also be either acute or chronic. Acute symptoms that occur suddenly, last a brief period of time, and disappear rapidly are called paroxysmal symptoms. Paroxysmal symptoms may occur once or repeat over a longer period of time. Repeated paroxysms may be a sign of an MS relapse.
One particularly mysterious occurrence of MS pain, nicknamed the “MS hug,” is often described as a banding sensation or girdle pain surrounding the torso. Some people in the online community have referred to the MS hug as the “Squeeze o’ Death.”
Explanations of the cause of the MS hug vary. The highly unpleasant banding sensation occurring anywhere around the torso area could simply be neuropathic pain or dysesthesia (a really “bad” paresthesia). Symptoms of the MS hug can show up anywhere on the torso, on one side or the other, or circling all the way around. Pain from the MS hug may range from mild numbness or tingling to excruciatingly sharp pain or pressure. Each person’s experience is unique and may differ from one episode to the next.
Common pharmacological management of neuropathic pain in MS includes anti-seizure drugs, corticosteroids and topical agent, anti-spasticity drugs, or benzodiazepines. Antidepressant agents and opioids may help to modulate the experience of pain.
In addition to a banding sensation, numbness, or tingling, patients experiencing the MS hug have sometimes described chest tightening, difficulty breathing and limited mobility. In these cases, the muscles of the rib cage, known as the intercostal muscles, may be involved. The intercostal muscles have three layers of muscle fibers that connect the ribs and assist in respiration.
The outermost intercostal muscles contract to pull the rib cage up and out, enlarging the thoracic cavity which, along with the diaphragm, pulls air into the lungs. Contraction of the inner layers of intercostal muscles helps to force air out of the lungs. Muscle spasms, spasticity, or an imbalance in the coordination of opposing muscles could quickly disrupt one’s ability to breathe normally.
If you suddenly experience chest pain or asthma-like symptoms, or you feel like a boa constrictor is trying to squeeze the life out of you, don’t assume that it is your MS. Seek medical attention immediately. There may be another cause of your symptoms or pain. It’s better to err on the side of caution when your health is concerned.
The MS hug could be part of a relapse or exacerbation that may respond to steroids, or it could be a symptom of a pseudoexacerbation brought on by heat, stress, or fatigue. In the latter case, the symptoms may go away when the trigger for the pseudoexacerbation has retreated. In either circumstance, focusing on stress-reduction techniques may help to keep the hug from getting worse.
Although I have never personally experienced the MS hug, here are some suggested treatments and strategies that may help you if you do:
- Treatment for neuropathic pain
- Anti-spasticity medications
- Antidepressants, opioids, or non-opioid pain medication to modify the pain response
- Non-steroidal anti-inflammatory medication to reduce inflammation
- Corticosteroids to treat a relapse and reduce inflammation
- Analgesic creams containing capsaicin or menthol (a word of caution: Test the cream on a small area of skin first to make sure that it doesn’t worsen the sensation)
- Herbal therapies, such as marijuana, may reduce spasticity (another word of caution: Marijuana possession is illegal in some states and side effects may affect cognition)
- Stress-reduction techniques, such as deep breathing, progressive relaxation, meditation, or creative visualizations
- Movement therapies, such as gentle stretching, massage, or yoga
- Body cooling, if heat sensitivity induces the MS hug
- Applied heat to relax and soothe tight, sore muscles and potentially to reduce spasticity
- Reduction of potential triggers for muscle spasms or cramps, such as dehydration, caffeine consumption, or vitamin/mineral deficiency
- Loose clothing to reduce pressure on the torso
- Applied pressure to the torso to modify the squeezing sensation
- I hope that one or more of these suggestions may help you when neuropathic pain attacks and that the MS hug stays an arm’s distance away.
[Editors Note: This post was edited on 6/20/16 to remove drug brand names. Generic and scientific names remain in their place.]
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.