Legs like jelly or noodles, or legs that feel heavy like cement. These are some of the ways MyMSTeam members describe leg weakness, a common symptom of MS. Leg weakness can come on suddenly and may happen after exertion.
For people with multiple sclerosis (MS), leg weakness can contribute to problems with walking and make it harder to avoid falls. In a survey conducted among over 1,000 MyMSTeam members, two-thirds reported struggling with walking, mobility, or balance. Leg weakness can also contribute to feelings of tiredness and fatigue that are common in MS.
Leg weakness can be difficult to describe, and people with MS may experience it in different ways. Members of MyMSTeam often use metaphors to explain how leg weakness affects them.
However MyMSTeam members describe their leg weakness, they agree it is a frustrating and often debilitating symptom of MS.
Leg weakness in multiple sclerosis can be a result of one or more causes. Leg weakness can be caused by:
Lack of use of muscles. When you don’t use your muscles enough, they begin to atrophy, or shrink. If your leg weakness is due to atrophy, getting more exercise may help strengthen your muscles and improve leg weakness.
Fatigue. About 80 percent of people with MS experience fatigue, and it may be the most prominent MS symptom for many. Fatigue can contribute to leg weakness, and vice versa. If fatigue is causing your leg weakness, resting may help.
Damage to the nerves. MS causes damage to the myelin coating of the nerves as well as the nerves themselves. Damage to the nerves controlling the legs may result in weakness. If your leg weakness is due to nerve damage, exercise and rest will not help.
According to the Multiple Sclerosis Association of America, 55 percent of those with MS have weakness as a symptom. Depending on where nerve damage occurs, people with MS may experience generalized muscle weakness that affects multiple body parts. If damage occurs in the spinal cord, the result may be weakness in the legs only.
According to an article in BMC Neurology, people diagnosed with MS who are also sensitive to heat or cold find that extreme temperatures worsen leg weakness. The experiences of MyMSTeam members echo this research, especially when it comes to hot weather. One MyMSTeam member stated, “If it is hot outside and I try to do a lot, my legs will give out or become like Jell-O.” Another said, “When I get overheated … I get those ‘jelly legs.’" A third member explained, “Midwest humid summer days promote heavy MS legs for me.”
Other MyMSTeam members notice leg weakness getting worse with stress, like many other MS symptoms. One member wrote, “When I get too stressed, my legs start to feel like cement blocks.”
For others with MS, fatigue or too much physical exertion are triggers for an episode of leg weakness. “I usually get jelly legs when I am severely fatigued, like today,” said one MyMSTeam member. Another said, “This is most definitely a sign I have been doing too much. If I push myself, I get pins and needles in my arms and my legs go to jelly.”
Leg weakness can create problems with walking and balance and lead to falls. Finding ways to manage leg weakness is important for preventing broken bones or other injuries from falling. MyMSTeam members often share tips for coping with leg weakness.
Some MyMSTeam members focus on exercise or physical therapy to help strengthen weak leg muscles. Physical therapy can help people with MS manage leg weakness by improving strength and balance. One member described their experience with physical therapy: “My right leg is so weak that I couldn't stand up without help or a cane. I have been going to physical therapy twice a week for three weeks now. Physical therapy kicks my butt. I am learning to use muscles that I haven't been able to use in years. The object of physical therapy is to make the muscles strong enough that they can help with walking.”
Another MyMSTeam member was prescribed exercise by his neurologist: “I told my neuro that my legs were getting weaker. He just said keep on walking. I use a rollator which is a walker with wheels and brakes. Actually the more I walk with it, the stronger I get. Just keep moving.”
One MyMSTeam member touts exercise for muscle weakness even when progress might not be obvious: “Exercise, like yoga, walking, and even squats, will help maintain muscle even though it doesn’t feel like there is improvement.”
On bad days, when leg weakness is severe, MyMSTeam members use assistive devices to help prevent falls. “Sometimes an assistive device like a wheelchair or cane is necessary,” said one member. Another wrote, “On good days I can walk straight. On bad days I need a cane.”
“I use a cane everywhere, but when [my legs] are heavy, I use my walker,” explained another MyMSTeam member.
Using a disability placard for the car can be helpful for those whose “jelly legs” come on suddenly. “I get Jell-O legs quite often,” one member said. “I don't know when it is going to happen. I have a handicap sticker and I get so many looks — I don't know if I am going to need it until it happens!”
Some people with MS worry they will become dependent on a cane, walker, or wheelchair if they start using one of these mobility aids. In reality, these devices can be used to save leg strength for when it really counts. Leg weakness can increase throughout the day as fatigue sets in. Using a mobility aid in one situation — like using a wheelchair at the airport — may mean legs are stronger later in the day for some other activity.
In some cases, rest and pacing physical activity are the best options. One MyMSTeam member commented, “I know that when my vision starts to alter, my legs go all Jell-O-like, and I have word-finding problems, it's time to slow down and take a rest for a few hours, possibly days.”
Another member said, “After a few good days, I’m back to my legs feeling like Jell-O. At least I have no appointments today. What I’ve learned is that, when I feel like this, the only thing to do is rest!”
By joining MyMSTeam, the social network and online support group for those living with multiple sclerosis, you gain a support group more than 150,000 members strong. More than 38,000 MyMSTeam members report weakness as a symptom on their member profiles, and leg weakness is one of the most discussed topics.
Do your legs ever feel like jelly, noodles, or cement? What are the best ways you have found to cope with leg weakness? Share your experiences in the comments below or directly on MyMSTeam.