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When I had the “MS hug” the first time it came and went over the course of several weeks and ranged from an annoying pressure to abject pain. It sometimes went as high as my chest or as low as my waistline. It was sometimes very localized on one side and other times went all the way around my torso. It is truly one of the most annoying and painful symptoms that I have ever experienced.
Since I had this symptom before I was diagnosed with MS, I visited several doctors (two internists, an infectious disease doctor and an orthopedist) and received the following diagnoses:
- Scoliosis (nothing like finding an unsuspected problem on the way to an MS diagnosis)
- Intestinal infection (given a course of Cipro, which made me feel so bad that I temporarily forgot about the girdle-band pain)
- Mitral valve prolapse (another new problem turned up on the way to MS)
- Stress (no comment)
I have decided that whoever coined the term “MS hug” must have: a) never experienced this symptom; or b) had a really bad sense of humor. In my family, we refer to the feeling as the “grippies, “ which is more descriptive and less cloying, anyway.
How Common is the "MS Hug?"This is hard to say. Up to 75% of people with MS will experience pain as a symptom, but statistics on the MS hug are difficult to find.
What Causes the "MS Hug?"It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.
What Does It Feel Like?Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:
- As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
- Focused in one small area (usually on one side or in the back) or go all the way around the torso
- Worse when fatigued or stressed
- Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
- Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure