Multiple sclerosis (MS) can often lead to muscle or joint pain due to nerve damage, either as a direct cause or residual effect of MS. According to one study of 115 people with MS, the shoulders and upper back are commonly affected areas of pain in those with MS. (The researchers also noted women were more likely to report pain in these areas.) Each person experiences pain differently, including those in diagnosed with MS. For some, shoulder pain may feel sharp and sudden, while others may feel a dull, steady ache that lasts through the day.
Whether you experience chronic (long-lasting) or acute (short-term) shoulder discomfort, such pain can impact your day-to-day activities and quality of life. Knowing how to recognize and treat your pain can help lessen your symptoms of MS and make it easier to go about your normal routine. Here, we explore how shoulder pain can affect those with MS, what this pain can feel like, and pain management options.
There are different types of pain that people with MS can experience. No two people feel pain quite the same way, and shoulder pain is no exception. One MyMSTeam member reported feeling “tuckered out” due to MS spasms in their shoulders and shoulder blades. Other team members have described having lots of neck and shoulder pain. One even likened their pain to that of a dislocated shoulder. Another member said their pain was in both of their shoulders and paired with arm spasms. That member posted about “bad nights” with little to no sleep, and being tired in the days that followed.
Just like there are countless ways those with MS may experience pain, there are many different treatment options to manage and minimize shoulder pain specifically.
It’s important to keep in mind that even if your pain may be similar to someone else’s, their pain management methods are not guaranteed to work for you. Ask your doctor for different pain management options to see which ones serve you best. And, before you try any new pain-management technique or treatment, first consult your neurologist or other health care provider.
Over-the-counter pain relievers, such as ibuprofen (a nonsteroidal anti-inflammatory drug, or NSAID) and acetaminophen (an analgesic) can often manage the musculoskeletal pain commonly associated with MS. But, depending on the severity and prevalence of your shoulder pain, your doctor may prescribe stronger medications. This underscores the importance of discussing your treatment options with your doctor long before the pain hits.
One MS team member posted they knocked out their pain with two acetaminophen (Tylenol) pills. “My shoulders have really been bothering me,” they wrote. “And it’s been hard to sleep, because I am a side-sleeper.” Doing physical therapy and applying a menthol-based cooling gel (Biofreeze) made little difference, they continued. But, they shared, the simple over-the-counter acetaminophen eased discomfort.
Another popular pain-relief option includes topicals: pain creams, ointments, gels, and patches. However, members have reported varying levels of success with these products. Some have found the treatments temporarily alleviate their pain, while others report no relief with them. Some members reported they had allergic reactions after applying certain products, like those with corticosteroids (steroids).
Common nonsteroidal, over-the-counter topical pain relief options include those with active ingredients such as:
Steroid medications are another potential treatment choice for those dealing with MS pain. Doctors tend to prefer steroid injections and intravenous (IV) steroids to surgery in certain situations, especially for those with MS. Injected or IV steroids are less invasive than surgery and offer briefer recovery periods than surgical procedures.
Many members have weighed in on their experiences with steroid medications. One member shared that steroids are a common treatment among people with MS — especially among those experiencing a flare that causes very intense shoulder pain.
“In my first 20-plus years with MS, I was prescribed an oral steroid two or three times a year due to an MS relapse,” posted one MyMSTeam member. “I then went into remission and have not required steroids since. Steroids can be considered a ‘miracle’ medication. However, they can also present difficult side effects.”
The member continued, “After a few days on them, you are feeling OK. Then you go through a period when you say, ‘Get me off of these steroids.’ I continue to be mobile today because my neurologist’s treatment for me included steroids.”
That member is correct: You may experience the side effects associated with steroid medications. Some MyMSTeam members have reported experiencing sleeping problems while on steroids. Another member reported they felt a burning sensation in their feet. They said this sensation came from the diabetes they developed while treating their MS with “massive” amounts of steroids. Ultimately, they posted, the injected and IV steroids did little to ease the brunt of their pain.
If you experience mild discomfort or stiffness in your shoulder muscles or joints, your doctor may recommend muscle relaxers. These can treat both spasticity and muscle tightness. One MyMSTeam member said over-the-counter muscle relaxers loosened what they called their “frozen shoulder.” Muscle relaxers can be a convenient fit for those experiencing pain that they consider as being less severe. At that pain level, steroid injections and surgery might be overkill.
Some people find that using an ice pack or a warm compress eases their MS-related shoulder pain. While these do not treat the underlying problem that causes the pain, they can soothe. Applying hot or cold packs can both ease discomfort and relax numb, aching, or cramped muscles. A hot bath can be helpful, too, but do not overdo it — heat can cause symptoms to worsen in many people with MS.
Chronic pain and other MS symptoms can make lying or sitting down for long periods preferable — if not necessary. However, it is beneficial to move around as regularly as you can. If you experience difficulty when you move, ask a loved one or physical therapist for help with gentle stretches and/or regular exercises. Try a moderate approach, though, as too much exercise can intensify your MS symptoms.
Adjusting your posture can have a big impact on shoulder pain and back pain. When sitting, place a small cushion or a rolled-up towel at your lower back to align your spine and shoulders and to maintain that proper position. When upright, you might use a device called a standing frame. Standing frames support you when you stand. Use them correctly to improve your posture and reduce strain on your muscles and ligaments.
On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, more than 183,000 members come together to ask questions, give advice, and share their experiences with others who understand life with MS.
Have you had shoulder pain with MS? How have you managed it? Share your experience and tips in the comments below or by posting on MyMSTeam.