I love hugs. I love giving hugs. I love hugging my husband, my son, my cats, my family and friends. I’ve even been known to hug a dish of homemade chocolate ice cream drenched in hot fudge sauce.
But an MS hug? That is one hug I could easily live without.
After living with MS for 26 years and tolerating a seemingly permanent MS hug, I rarely notice the tight squeeze around my stomach.
Would I like to live without it? In a New York minute.
A common symptom of MS, the MS hug, is like MS itself. It’s different for each person. Yet it continues to be one of the most common questions among patients.
What exactly is an MS hug?
An MS hug feels like a band, or girdle-like, sensation tightening around your waist. People sometimes describe it as annoying. Others say it can become quite painful.
After searching the web, I could not find statistics on the number of people with MS that experience this sensation. If it were classified in the category of pain, up to 75% of people with MS experience some type of pain.
The hug is an abnormal sensation that is caused by a lesion on the spinal cord. This neuropathic pain1 is called a “paresthesia”2. It is a result of tiny muscles (holding our ribs together) located between each rib that goes into a spasm.
The hug itself is different for everyone, and it can also differ within one person every day, week or month. It may not only occur in the stomach region, but can also occur low in the waist or high in the chest. It can give you trouble on one side of your body or both. Stress and fatigue may trigger it. It can last for minutes or years. The hug can range anywhere between a slight tickle to a stabbing pain.
Some people may experience an MS hug requiring a medical professional. Their breathing becomes painful, and mimics symptoms of a heart attack. Call the doctor immediately, or go to the nearest emergency room if this happens. Make sure to tell them you have Multiple Sclerosis.
An MRI or steroids may be prescribed if your hug is caused by an exacerbation. There are also various medications that may be prescribed. They include antispasticity medications, such as Lioresal, Valium and Xanaflex, and neuropathic pain relief medications, such as Lyrica and Neurontin.
I have heard stories from patients that tried Botox, which has been shown to be effective in the short term to relieve the MS hug. These patients have reported it as being fairly effective, yet it is not a cure.
I know from personal experience that the MS hug doesn’t necessarily mean someone is having an exacerbation. It could also be a pseudoexacerbation. My hug worsens if I’m feeling overly tired or I’m experiencing a lot of stress. What do I do to help manage it?
- Meditation and deep breathing.
- Cool off (sometimes with the help of cooling vests).
- De-stress (I read, write, knit, watch old movies).
- Take breaks while working.
- Stop worrying!
Do you experience MS hugs?