- This article is part of this month's package focusing on pain in ALS.
- Exercises, positioning and other strategies can help prevent and relieve pain, says Mary Beth Geise, a nurse with extensive experience helping people with ALS.
For the other article in the series, read Pain in ALS: What the Research Shows for a Q&A with Adriano Chiò, an associate professor of neurology at the University of Turin in Italy who has studied pain in ALS. The article also includes a section featuring neurologist Teepu Siddique, who explains that physicians need to ask people with ALS about pain, and that people with ALS shouldn't ignore their pain.
Pain in ALS is very personalized, says "The ALS Nurse," Mary Beth Geise. "If you're experiencing it, don't ignore it — follow your feelings and seek help."
|ALS nurse Mary Beth Geise
Geise, who has been caring for people with ALS and other neuromuscular disorders for more than 30 years, is a nationally recognized expert on ALS home care. Her website, ALS Care, hosts a comprehensive selection of resources for people living with ALS.
She offers a number of suggestions for people with ALS who are dealing with pain.
- Practice range-of-motion exercises and stretching — either alone or with the help of a family member or caregiver — to help prevent or relieve muscle tightness and joint stiffening, and maintain mobility. Remember to periodically raise your arms above shoulder height, as doing so can help with shoulder pain. Don't ignore your fingers, elbows, hips, wrists, ankles and toes.
- Don’t use your muscles beyond their capability — save them for the activities that are most important to you.
- Use a soft neck collar to help support the weight of the head, and prevent neck pain and strain.
- Take nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, to help relieve inflammation, but stay away from products containing aspirin (unless directed by a doctor) as they can cause bleeding and ulcers.
- Try gently rubbing or applying light pressure to fasciculations, a type of spasm or cramp common in early-stage ALS that can be annoying, painful and keep you awake at night. (The prescription medication baclofen also is commonly recommended to treat fasciculations.)
- Therapy bags filled with rice, flax seed, cracked corn or other fillers can be heated in the microwave or cooled in the freezer. They work particularly well on the back of the neck and across the tops of the shoulders, especially for people who have been sitting in front of a computer for long periods of time.
- Stand daily, alone or with help, whenever you can, as it promotes circulation (particularly to the feet) and helps stretch the spine.
- Elevate your feet to the same level or higher than your heart to help reduce swelling that can be caused by sitting for long periods of time in a wheelchair. (See Don’t Let Leg Swelling Go Untreated.)
- Put your arms up on your wheelchair armrests; it helps expand the ribcage and promote better breathing.
- Maintain proper sitting posture by propping with pillows, blankets or other supports.
- Consider neuromuscular "trigger point" massage. Trigger points are tight areas ("knots") in muscle tissue that can cause pain in the immediate area or in other parts of the body. Trigger point massage therapy is specifically designed to reduce and eliminate pain, using massage on these particular areas. Call around; some massage therapy clinics offer therapy tables that can be lowered all the way to the floor, making it easier for people with reduced mobility to transfer to the table (alone or with help) for therapeutic, pain-relieving massage. Be sure to drink a lot of water after a massage, as it helps flush out any materials broken down and released by muscles during massage, and keeps muscles hydrated. To search for certified therapists by state, visit the National Certification Program for Therapeutic Massage & Bodywork (NCBTMB).
If you’re experiencing pain, it’s always a good idea to speak with your neurologist who may offer solutions or who can refer you to other medical specialists if needed. In order to provide your physician with the most complete picture of what’s going on, it’s a good idea to keep a record or diary of your pain. Geise suggests using a calendar for this purpose.
Include a description of the type and location of the pain, as well as the date and time it occurred, along with any other factors that may be relevant. You may find, for example, that the stomach pain you’re feeling was associated with constipation related to diet, or that cramps are the result of dehydration.
Most importantly, Geise cautions, don’t ignore your pain. Living your best life despite ALS means taking charge and doing everything in your power to feel good.
Editor's note: For more information on dealing with pain in ALS, please read MDA's ALS guidebooks — Everyday Life with ALS: A Practical Guide and the MDA ALS Caregiver's Guide. Both books are available in their entirety on the MDA website, and are free to individuals and families registered with their local MDA office.
MDA provides services and support through 120 local offices in the United States and Puerto Rico.
MDA's medical clinics nationwide, including specialized MDA/ALS research and clinical care centers, are staffed by top health professionals skilled in the diagnosis and medical management of muscle disease, including ALS. Services may include occupational, physical and respiratory therapy; diagnostic tests; genetic counseling; and more.
Local MDA support groups offer emotional and practical support to individuals affected by ALS, their families and caregivers. MDA also accepts donations of gently used durable medical equipment (such as wheelchairs, communication devices, patient lifts, hospital beds and more), repairs these items as needed, and provides them to individuals with muscle disease at no charge to enhance mobility, independence and quality of life.
Visit the MDA website to learn more about the MDA office in your area, as well as the nearest MDA/ALS research and clinical center.