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Wednesday

 

MS Hugs Me, Hugs Me Not




























In the two years following my diagnosis, I had many bouts of chest pain, breathing difficulties, and sharp stomach pains. I worried that some other terrible illness was right around the corner. Four EKGs, three ultrasounds, two pulmonary function tests, and one colonoscopy later I had a surprisingly good bill of health. Off to a counselor I went to deal with possible hypochondria likely brought on by the MS diagnosis.

I was troubled by the lack of conclusive information. After all, I could feel the pain — couldn’t I?  A fiery poker-in-the-gut feeling that morphed pleasant dreams into recurring nightmares of being stabbed with a knife, unable to fend off my faceless attacker or even breathe. I usually woke up from these nightmares in a sweat with my hand pressed to a place just under my ribs. More than once I looked down as though I expected to see a knife. Yep, pretty sure I actually felt the pain.

One day I happened upon an article about the “MS hug” in a newsletter. The National Multiple Sclerosis Society (NMSS) describes this dysesthesia (not normal sensation) as a feeling of constriction around the abdomen or chest. The “huggee” may feel burning, aching, or girdling — not the good feelings associated with a real hug! The MS hug is likely caused by a combination of nerve pain and muscle constriction. Abdominal muscles and the tiny muscles between the ribs may contract and stiffen.

I immediately scheduled with my neurologist who prescribed some medications. Gabapentin, amitriptyline, and nortriptyline are common prescriptions for nerve pain. Baclofen, tizanidine, and diazepam are often helpful for spasticity. Other helpful things according to the NMSS are regular stretching, adequate sleep, meditation, bio feedback, yoga, acupuncture and adequate levels of sodium and potassium. My naturopath tested my mineral levels and put me on potassium, calcium and magnesium supplements. The MS Trust discusses the benefits of  hydration, massage, and wearing loose clothing.  They also state that some people find relief by wearing tight-fitting clothes because the feeling of pressure counters the pain. I’ve also read advice from others who say that distraction by a good book, movie, or other activity is a useful approach.

Understanding that my pain was caused by the “MS hug” allowed me to accept it and not panic. My healthcare team and fellow MS patients provide me with many tools to adapt; solutions to keep the “hug” at bay. It still flares up as it did this week, perhaps brought on by unusually hot weather. Even with my large toolkit I cannot always alleviate the symptom.

Yesterday I tried to come up with how I might “bloom” when I’m not able to entirely banish the “MS hug”. While talking with a co-worker, I became aware of awkwardly pressing my fingers, quite hard, into various parts of my trunk. Just maybe this idea of wearing something tight would help? Obviously the pressure of my hands provided some relief. I put on my creative thinking cap and came up with some blooming possibilities, or ways to flourish into the pain — not despite the pain but because of it.

Perhaps ask everyone I know to give me a real hug?  Or join the steampunk fashion trend, there are some amazing corsets online? I wonder, would my 1992 Lollapalooza Doc Martins go with that? Or try a waist trainer — a half-dozen Kardashians can’t be wrong!  I did have fun searching the internet and got a good laugh when a typo led me to “tight-fitting shorts” instead of shirts. The “MS hug” may leave me better dressed, but my style is probably more “practical shapewear”. If nothing else, it was all a good distraction — and that may have been the most useful approach of all.

In the two years following my diagnosis, I had many bouts of chest pain, breathing difficulties, and sharp stomach pains. I worried that some other terrible illness was right around the corner. Four EKGs, three ultrasounds, two pulmonary function tests, and one colonoscopy later I had a surprisingly good bill of health. Off to a counselor I went to deal with possible hypochondria likely brought on by the MS diagnosis.

I was troubled by the lack of conclusive information. After all, I could feel the pain — couldn’t I?  A fiery poker-in-the-gut feeling that morphed pleasant dreams into recurring nightmares of being stabbed with a knife, unable to fend off my faceless attacker or even breathe. I usually woke up from these nightmares in a sweat with my hand pressed to a place just under my ribs. More than once I looked down as though I expected to see a knife. Yep, pretty sure I actually felt the pain.

One day I happened upon an article about the “MS hug” in a newsletter. The National Multiple Sclerosis Society (NMSS) describes this dysesthesia (not normal sensation) as a feeling of constriction around the abdomen or chest. The “huggee” may feel burning, aching, or girdling — not the good feelings associated with a real hug! The MS hug is likely caused by a combination of nerve pain and muscle constriction. Abdominal muscles and the tiny muscles between the ribs may contract and stiffen.

I immediately scheduled with my neurologist who prescribed some medications. Gabapentin, amitriptyline, and nortriptyline are common prescriptions for nerve pain. Baclofen, tizanidine, and diazepam are often helpful for spasticity. Other helpful things according to the NMSS are regular stretching, adequate sleep, meditation, bio feedback, yoga, acupuncture and adequate levels of sodium and potassium. My naturopath tested my mineral levels and put me on potassium, calcium and magnesium supplements. The MS Trust discusses the benefits of  hydration, massage, and wearing loose clothing.  They also state that some people find relief by wearing tight-fitting clothes because the feeling of pressure counters the pain. I’ve also read advice from others who say that distraction by a good book, movie, or other activity is a useful approach.

Understanding that my pain was caused by the “MS hug” allowed me to accept it and not panic. My healthcare team and fellow MS patients provide me with many tools to adapt; solutions to keep the “hug” at bay. It still flares up as it did this week, perhaps brought on by unusually hot weather. Even with my large toolkit I cannot always alleviate the symptom.

Yesterday I tried to come up with how I might “bloom” when I’m not able to entirely banish the “MS hug”. While talking with a co-worker, I became aware of awkwardly pressing my fingers, quite hard, into various parts of my trunk. Just maybe this idea of wearing something tight would help? Obviously the pressure of my hands provided some relief. I put on my creative thinking cap and came up with some blooming possibilities, or ways to flourish into the pain — not despite the pain but because of it.

Perhaps ask everyone I know to give me a real hug?  Or join the steampunk fashion trend, there are some amazing corsets online? I wonder, would my 1992 Lollapalooza Doc Martins go with that? Or try a waist trainer — a half-dozen Kardashians can’t be wrong!  I did have fun searching the internet and got a good laugh when a typo led me to “tight-fitting shorts” instead of shirts. The “MS hug” may leave me better dressed, but my style is probably more “practical shapewear”. If nothing else, it was all a good distraction — and that may have been the most useful approach of all.

Story Source: The above story is based on materials provided by MULTIPLESCLEROSISNEWSTODAY
Note: Materials may be edited for content and length


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