Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. People with ALS experience muscle weakness, atrophy, and eventually paralysis due to the death of motor neurons. Back pain is not a typical symptom of ALS, but some people with the disease do experience back pain for various reasons.
What is ALS?
ALS specifically affects motor neurons, which are nerve cells that control voluntary muscle movements like walking, speaking, swallowing, and breathing. In ALS, both upper and lower motor neurons degenerate and die. Upper motor neurons originate in the brain and extend down to the spinal cord, while lower motor neurons connect the spinal cord to muscles throughout the body. As motor neurons die, the brain loses its ability to initiate and control muscle movement.
The exact cause of ALS is still unknown, but research suggests that genetics, viral infections, environmental toxins, and other factors may play a role in triggering the disease. ALS usually strikes people between the ages of 40 and 70 and affects more men than women. There are two forms of ALS:
- Sporadic ALS – Most cases (90-95%) occur randomly with no clearly associated risk factors.
- Familial ALS – About 5-10% of cases are inherited. This form of ALS is associated with mutations in genes such as SOD1, TARDBP, FUS, and C9ORF72.
Regardless of the type, ALS causes progressive muscle weakness and paralysis over time. It eventually affects the muscles needed for breathing, swallowing, and other basic functions, which can lead to respiratory failure. Though ALS itself is not painful, it can cause multiple issues that result in discomfort and pain.
Common symptoms of ALS
The early symptoms of ALS often include:
- Muscle twitches (fasciculations)
- Muscle cramps and stiffness
- Difficulty walking or tripping frequently
- Difficulty holding objects or weakened grip
- Slurred speech or difficulty speaking
- Fatigue and muscle weakness
As ALS progresses, symptoms get worse and may include:
- Muscle atrophy, especially in hands, feet, arms, or legs
- Difficulty swallowing (dysphagia) and excessive saliva
- Shortness of breath
- Impaired speech and voice changes
- Cognitive and behavioral changes such as dementia, anxiety, or depression
Does ALS cause back pain?
Back pain is not considered a primary symptom of ALS. However, some people with ALS do experience back pain for various reasons:
Muscle cramps and spasticity
Muscle cramps and spasticity in the back muscles are common in ALS. As motor neurons die, the remaining neurons become hyperactive and trigger muscle twitches and spasms. These involuntary muscle contractions can range from mildly uncomfortable to quite painful.
Postural changes
ALS leads to muscle weakness and shrinkage, which often causes posture changes like slouching or leaning forward. Poor posture strains the muscles and joints in the back and neck, resulting in chronic tension and pain.
Muscle atrophy
As back and spine muscles atrophy, the skeletal structure loses support. This places more stress on the vertebrae, disks, nerves, ligaments, and tendons. Damage to these structures can manifest as back pain in ALS patients.
Mobility impairment
ALS patients eventually lose the ability to walk and become wheelchair bound. Sitting for extended periods can cause back stiffness, swelling, and discomfort. Lack of movement also leads to loss of muscle tone, worsening back pain.
Bone fractures
ALS patients are prone to falls and fractures due to muscle weakness and balance problems. Vertebral fractures in the spine may also occur spontaneously due to osteoporosis, which is common in ALS. These fractures often cause acute back pain.
ALS medication side effects
Riluzole is the only FDA-approved medication for ALS. Up to 13% of patients on riluzole report back pain as a side effect. Other drugs like baclofen used to manage ALS symptoms can also sometimes cause back pain.
Risk factors for back pain in ALS
While back pain affects 30-60% of the general population at some point, certain factors may increase an ALS patient’s risk:
- Advanced age – Disk degeneration increases with age
- Osteoporosis – Weakens vertebrae
- Obesity – Strains the back
- Sedentary lifestyle due to disability
- Respiratory insufficiency – Reduces oxygen supply to muscles
- Using a wheelchair – Can cause postural pain
- Side effects of medications
- Muscle cramps and spasticity
- History of back problems prior to ALS diagnosis
Localization of back pain in ALS patients
ALS patients may experience pain in various parts of the back depending on the underlying cause:
| Area of pain | Potential causes |
|---|---|
| Lower back (lumbar region) |
|
| Middle back (thoracic region) |
|
| Upper back (cervical region) |
|
When to see a doctor about back pain with ALS
It’s important for ALS patients to consult their doctor if they experience:
- Severe or persistent back pain that impairs mobility or sleep
- Pain after a fall or injury
- Pain accompanied by fever or neurological symptoms
- Pain that begins soon after starting a new medication
- Unexplained weight loss along with back pain
- Pain not relieved by over-the-counter medications
These signs may indicate an underlying condition that requires medical attention. Prompt diagnosis and treatment can help improve pain management in ALS patients.
Diagnosing the cause of back pain in ALS
To determine the exact cause of back pain in an ALS patient, the doctor may conduct:
- Medical history review – Symptoms, medications, lifestyle factors
- Physical exam – Muscle wasting, posture, range of motion, neurological function
- X-rays or MRI – Assess bones, vertebrae, discs for damage
- Electromyography – Evaluates nerve function
- Bone density scan – Checks for osteoporosis
- Blood tests – Infection, inflammation, nutritional deficiencies
These tests help diagnose muscular, skeletal, vertebral, and nerve root causes of back pain specific to each patient’s case of ALS.
Treating back pain in ALS patients
Treatment focuses on relieving symptoms and improving quality of life. Options may include:
Medications
- Non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen or naproxen
- Muscle relaxants such as baclofen, tizanidine, or diazepam
- Analgesics tramadol or pregabalin for neuropathic pain
- Topical creams with capsaicin, lidocaine, or menthol
Physical therapy
- Stretches and gentle exercises to improve mobility and flexibility
- Transcutaneous electrical nerve stimulation (TENS)
- Heat or ice therapy
- Assistive devices for posture, mobility, sleeping
Surgery
- Spinal stabilization for vertebral fractures
- Deep brain or spinal cord stimulation for refractory pain
A multidisciplinary approach including the ALS patient’s neurologist, physiatrist, palliative care team, and physical therapist helps optimize back pain treatment.
Preventing back pain in ALS patients
While not always possible to prevent, the following strategies may help reduce risk of back pain:
- Maintain proper posture during sitting and standing
- Use lumbar support cushions or aids like braces
- Exercise within limits to build muscle strength
- Stretch routinely to improve flexibility
- Apply heat or cold therapy for muscle spasms
- Take medications as prescribed to minimize cramps
- Ask for physical or occupational therapy referrals
- Use transfer aids properly to avoid injury
- Get up and move every hour if in a wheelchair
- Optimize nutrition and avoid obesity
- Stop smoking and limit alcohol intake
Making lifestyle modifications, staying active within abilities, and using assistive devices can help stabilize the spine and joints.
Coping with back pain in ALS
Living with progressive back pain can significantly impact mental health and quality of life for ALS patients. Some helpful coping strategies include:
- Joining a support group to share experiences
- Expressing feelings through counseling or journaling
- Practicing stress-relieving activities like meditation
- Engaging in enjoyable hobbies and distraction
- Spending time outdoors or in nature
- Listening to music or audio books
- Focusing on the present moment through mindfulness
- Seeking comfort through spiritual practices
- Communicating with loved ones and asking for help
- Maintaining a sense of hope and gratitude
Seeking professional mental health support can also help patients adjust to living with pain and disability.
Conclusion
While back pain is not a primary characteristic of ALS, it is a common secondary problem experienced by ALS patients. Muscle cramps, postural changes, fractures, osteoporosis, medications, and reduced mobility can all contribute to back pain. Diagnosing the underlying cause through medical evaluation enables specific treatments including physical therapy, medications, assistive devices, and lifestyle changes. A multidisciplinary approach provides optimal pain relief and allows ALS patients to maintain quality of life despite progressive disability. With proper support, most patients can manage back pain well and focus on enjoying time doing meaningful activities with loved ones.