Spasticity

Fatigue, pain, and other unpredictable, invisible symptoms shape every decision of daily life.

For me, muscle spasticity means muscle tightness throughout my body 24/7, causing fatigue and spasms. A lot of our (my wife and I) lives, routine and re$ource$ go toward controlling this one symptom — which is completely invisible from the outside and impossible to even measure.

During MS Awareness Week, I’m joining the @National MS Society in revealing the unseen realities of living with MS.

Understanding and support matter. See the disease for what it is and learn how you can bring us closer to ending MS together:

www.nationalmssociety.org/how-you-can-help/get-involved/rais...

#MultipleSclerosis #MightyTogether #Caregiving #ChronicIllness #newlydiagnosed #autoimmune #Disability

In the mornings, and other times too, I sometimes feel a tickle-twitch-minispasm-tightness on my side, right under my ribs. It doesn't feel bad exactly — but slightly uncomfortable + good + weird all at the same time. It makes me think of a Beatles* song, and I raise my elbow and call down (in John Lennon's voice), "Hey Junior, behave yourself!"

It might be the "MS hug," a combo of muscle spasticity and dysesthesia or misfiring/confusion of signals and sensations due to nerve damage. Dysesthesia causes the feeling of tightness across the torso that is the typical MS hug, but may also cause the tremors in my legs, or the icy feeling in my friend's face (who otherwise had no other symptoms).

Often I can chase Junior away with blankets & heat, exercise, or muscle-relaxant baclofen. But if it's winter, I know that rascal will probably find his way back again.

* US singer Larry Williams wrote and sang the original.

#MShug #dysesthesia #MultipleSclerosis #MightyTogether #ChronicIllness #Caregiving #newlydiagnosed #autoimmune #Disability

Tomorrow's Ask an MS Expert can help: "Enhancing Sleep Health," 1-8-26 at 12-12:30 p.m. ET

Sleep is crucial for people with MS dealing with fatigue, spasticity or cognitive changes. Learn about the 4 domains of sleep health and the science behind good sleep from Katie Siengsukon, professor of Physical Therapy, Rehabilitation Science and Athletic Training at the Kansas University Medical Center.

Streaming on Facebook, YouTube, and Twitch. www.nationalmssociety.org/how-you-can-help/get-involved/cale...

This program originally aired on May 8, 2025. All programs are recorded and available at the MS Society's YouTube channel.

#sleep #MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune

Like a car in wintertime, it doesn't want to turn off = tremors.

Sit down —> engine knock

Cross my legs —> engine knock

Sneeze —> engine knock

Things that have helped: Heat/warmth (a blanket, sunning yourself). Stretching or exercising the leg. Holding or pressing the knee in place. Oral baclofen.

What has finally stopped it was getting a baclofen pump. Like what has helped country star Clay Walker (search for our recent post about him), this hockey puck-sized implant feeds powerful micro-doses of baclofen (a muscle relaxant) directly to your spinal cord. If the tightness, pain and fatigue of spasticity starts taking over your life, ask your specialist about this option. I've had this for eight years and it has changed our lives. Hit me up if you have any questions.

#MultipleSclerosis #Disability #Pain #Spasticity #Caregiving

“The surgery gave me a lot of hope,” said the 56-year-old singer of "Live Until I Die" and other hits. “Am I walking perfect? No. Am I walking better? Absolutely."

After 30 years of living with MS, Walker said that the disease was starting to progress and affect his day-to-day life. Due to MS, Walker experiences spasticity, a chronic tightness in the muscles that often results in good fatigue, pain and mobility problems. MS causes different symptoms in every patient but spasticity is a common one.

“At the beginning of the year, I noticed I was having a lot of difficulty with balance and walking, and it really started to worry me,” Walker said. “I knew I had to do something.”

In a procedure that has been around for decades, the surgery implants a hockey-puck-sized baclofen pump that periodically releases muscle-relaxant medicine to help with muscle spasms and tension. The pump is set to individual, very personalized doses and schedules to release baclofen into the system throughout the day and night, as needed. Baclofen is most often taken orally in tablets, but when that is ineffective, the pump is a great alternative to get hold of out-of-control pain and spasticity tightness. While the baclofen tablets often contain 10 mg or so, the pump feeds baclofen directly into the spinal fluid and requires only very small but powerful doses.

For Walker, the results speak for themselves. "I got on a treadmill the other day without a harness holding me up to keep from falling, and I walked for five minutes," he said. "That is progress."

He acknowledges that he still has issues with balance, but he's working through with the resolve of someone who has managed remaining relapsing MS since 1996. His Clay Walker Foundation throws a huge benefit in Houston every year, helping those with MS afford the services they need.

Source: "Why This County Star Feels ‘Blessed’ as He Battles Multiple Sclerosis" by Gavin Boyle, Movieguide.com.

#PainManagement #Spasticity #Baclofen #BaclofenPump #ClayWalker #MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune

Heat used to be my kryptonite. Too much summer heat would turn me into a dishrag and make me literally delirious. One of the incidents that sent me to the doctor in the first place was when I collapsed during a summer hike in the Great Smoky Mountains of Tennessee and my girlfriend (now wife) dragged me a half mile to the car.

Now, many years later, I'm more sensitive to cold, which triggers muscle tightness from spasticity. I'll shy away from fans, or wear long sleeve shirts until it's well into the 80s F. From decreased circulation because I don't walk anymore, my hands and wrists are often cold. So you'll find me basking in the sun like a lizard on a rock. The sun thaws my wrists and relaxes all of the low-grade spasticity-tension going on in my body 24/7. Now I know why seniors flock to Florida.

My friends say, “Man, aren't you hot?”

Goldilocks says, “This temperature feels juuuust right.”

#MultipleSclerosis #MightyTogether