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What does an M.S. hug feel like?

“People with M.S. describe it as a squeezing, constricting, or band-like tightening in a section of the trunk. Some say it feels like they are wearing a tight garment, like a girdle,” Dr. Wingerchuk says. There’s no doubt about one thing though: It’s very painful. M.S. hug symptoms can involve one or both sides of the torso, and it can start anywhere from the neck down to the waist. Some people who experience M.S. hugs have chest pain and others report that their limbs go numb during the spasm4.

Sometimes, people tear a muscle if they pull against the direction of the spasm. “By pulling against a spasming muscle, you end up with a secondary musculoskeletal injury,” says Dr. Green. This can make your pain even worse. As with many other symptoms of M.S., experiencing M.S. hugs can make daily life extremely difficult.

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What causes an M.S. hug?

Broadly speaking, demyelination (the process of myelin getting destroyed) is what causes an M.S. hug. “The symptom develops only if there is demyelination from M.S. affecting certain sensory nerve pathways in the spinal cord,” Dr. Wingerchuk explains. Although experts don’t know exactly which pathways those are, most agree that dysregulated firing of nerve cells causes an M.S. hug.

Researchers also know that certain events can trigger an M.S. hug: Hyperventilation is a biggie. In fact, before MRIs were available to help diagnose M.S., doctors sometimes induced hyperventilation5 in a patient to determine if they had it, Dr. Green says. Then, they watched to see if a painful tonic spasm (either in the hands or feet or in the form of a hug) occurred.

“The other two things that can bring on an M.S. hug is being overheated or, strangely, getting cold,” Dr. Green says. Many people with M.S. feel overheated before having a flare-up of symptoms. More rarely, some individuals get chilly before an attack and docs aren’t exactly sure why this occurs.

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Does the M.S. hug go away?

Because the M.S. hug is a spasm, the feeling itself should eventually subside. If you experience recurrent M.S. hugs, there are medications that can help. “M.S. hug is actually pretty easy to treat,” Dr. Green says.

Medications to treat M.S. hug usually include:

Disease-modifying therapies (DMTs): These work by targeting the part of the immune system responsible for causing inflammation and myelin damage6. DMTs can help prevent new myelin damage and help alleviate your symptoms, but they can’t reverse existing damage or be taken to prevent M.S. in the first place.

Anti-seizure medications: Treating M.S. is the best way to avoid an M.S. hug. If they’re a consistent problem, Dr. Green says his first choice of medication is carbamazepine, an anticonvulsant (aka anti-seizure medication) that works by disrupting abnormal electrical impulses in the brain, according to the NLM. Phenytoin and Dilantin are other options for people who can’t take carbamazepine for some reason or who don’t respond to it, he says. It’s important to note that medications can reduce the number of M.S. hugs you get, but they may not prevent them from happening 100% of the time.

When you’re in the midst of an intense spasm, Dr. Wingerchuk recommends using relaxation techniques to try to stay calm since stress and anxiety can actually amplify your symptoms, making your pain even worse. “For some people, hands-on therapies like massage or touch are also helpful,” he notes. Of course, these may not always be an option, so implementing other strategies to relax, such as deep breathing or meditation, can be useful. Beyond that, he recommends avoiding any M.S. hug triggers you may have noticed, such as extreme temperatures.

The good news is that if you experience an M.S. hug once, that doesn’t necessarily mean it will become a chronic problem. That said, if you experience an M.S. hug as a new symptom, it’s important to schedule an appointment with your doctor because it could indicate you have a new lesion, Dr. Green says.

Experiencing an M.S. hug can feel really scary and jarring. But there are medications that can help prevent and treat them so you can regain some control over your life.

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Sources:

  1. Cell Journal, Multiple Sclerosis: Pathogenesis, Symptoms, Diagnoses and Cell-Based Therapy
  2. Neurology, The “MS Hug”: Definition, Characteristics, Course, and Misattribution Risk
  3. Journal of the American Academy of Dermatology, Neurocutaneous Disease: Neurocutaneous Dysesthesias
  4. Neuroimmunology Reports, Use of Thoracic Paravertebral Nerve Blocks to Manage Symptomatic Multiple Sclerosis “Hug”
  5. Parkinsonism & Related Disorders, Hyperventilation-Induced Painful Tonic Spasms Secondary to a Structural Lesion of the Pons
  6. BMJ, Disease-Modifying Therapies for Multiple Sclerosis

Related:

Source: SELF

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