Living with Upper Limb Spasticity (ULS)
If you have muscle stiffness in your arm or hand, then you may be experiencing symptoms of a debilitating, yet treatable condition called upper limb spasticity. Upper limb spasticity is common after stroke, affecting approximately half of stroke survivors, according to National Stroke Association. However, upper limb spasticity may also affect people who suffer a spinal cord or traumatic brain injury, or adults with multiple sclerosis or a history of cerebral palsy.
If you have upper limb spasticity you may have:- A clenched hand in a tight, balled up fist
- An arm is twisted, and “stuck” against your chest
- Flexed or bent elbow or wrist
- Disfigurement in your fingers
- Tightness and stiffness in the muscles of the elbow, wrist or fingers
- Uncomfortable contractions of the affected arm and hand
Unfortunately, most people don't know they have upper limb spasticity and that there are treatment options available.
It's important to talk with a physician specialized in spasticity because there are ways to help manage upper limb spasticity.
It's also important to know that you are not alone in your struggles. The Open Arms educational campaign was organized specifically for the people affected by spasticity in the upper limbs following a stroke.1 Through Open Arms educational campaign, you can learn more about upper limb spasticity and treatment options available. Most importantly, you can find inspiration in the stories of others who are managing the challenges of this condition.
Talk with Your Doctor
Unfortunately, upper limb spasticity is under-recognized and under-treated because it may develop weeks, months or even years after the person's original injury — often after the person has left the hospital or is no longer being treated by medical specialists familiar with the onset of the condition.
For example, in the case of someone who suffered a stroke, medical care is focused on saving the person's life and preventing another stroke. So, while a person may be receiving routine medical care when upper limb spasticity first presents, it's possible that he or she has stopped seeing his or her neurologist, physiatrist or rehabilitation therapist, who are more familiar with the onset of the condition. That's why it's important to raise any concerns about upper limb spasticity with your primary doctor, so that you can be referred, diagnosed and treated as soon as possible.
Unlike many of the conditions that lead to upper limb spasticity, the condition itself is not life threatening. However, this doesn't lessen the impact it can have on your life and your ability to perform even simple, daily activities.
While there is no cure, treatment options are available, which is why it's important to talk with your doctor or rehabilitation therapist. They may refer you to a neurologist (a doctor that diagnoses and treats neurologic disorders in the nervous system) or physiatrist (a physician specializing in physical medicine and rehabilitation). Ask your doctor about treatment options.
"Open Arms: Raising Awareness for Upper Limb Spasticity" Educational Campaign Advocacy Partners. Sponsors of the Open Arms educational campaign do not endorse any specific treatment for upper limb spasticity
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BOTOX® is a prescription medicine that is injected into muscles and used to treat increased muscle stiffness in elbow, wrist, and finger muscles with upper limb spasticity in people 18 years and older.
It is not known whether BOTOX® is safe or effective for other types of muscle spasms.
BOTOX® may cause serious side effects that can be life threatening. Call your doctor or get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX®:
- Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months.
- Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including: loss of strength and all-over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice (dysphonia), trouble saying words clearly (dysarthria), loss of bladder control, trouble breathing, trouble swallowing.
There has not been a confirmed serious case of spread of toxin effect away from the injection site when BOTOX® has been used at the recommended dose to treat severe underarm sweating, blepharospasm, or strabismus.
The dose of BOTOX® is not the same as, or comparable to, another botulinum toxin product.
Serious and or immediate allergic reactions have been reported. These reactions include itchy rash, swelling, and shortness of breath. Tell your doctor or get medical help right away if you experience any such symptoms, further injection of BOTOX® should be discontinued.
Do not take BOTOX® if you: are allergic to any of the ingredients in BOTOX® (see Medication Guide for ingredients); had an allergic reaction to any other botulinum toxin product such as Myobloc® or Dysport®; have a skin infection at the planned injection site.
Tell your doctor about all your muscle or nerve conditions such as amyotrophic lateral sclerosis [ALS or Lou Gehrig's disease], myasthenia gravis or Lambert-Eaton syndrome as you may be at increased risk of serious side effects including severe dysphagia (difficulty swallowing) and respiratory compromise (difficulty breathing) from typical doses of BOTOX®.
Tell your doctor about all your medical conditions, including if you have: plans to have surgery; had surgery on your face; weakness of forehead muscles, such as trouble raising your eyebrows; drooping eyelids; any other abnormal facial change; are pregnant or plan to become pregnant (It is not known if BOTOX® can harm your unborn baby); are breast-feeding or plan to breastfeed (It is not known if BOTOX® passes into breast milk).
Tell your doctor about all the medicines you take, including prescription and nonprescription medicines, vitamins and herbal products.
BOTOX® may cause loss of strength or general muscle weakness, or vision problems. If this happens, do not drive a car, operate machinery, or do other dangerous activities.
Other side effects of BOTOX® include: dry mouth, discomfort or pain at the injection site, tiredness, headache, neck pain, and eye problems: double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of your eyelids, and dry eyes.
For more information refer to the Medication Guide or talk with your doctor.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Please see full Product Information, including Medication Guide for BOTOX®.
- Allergan data on file; Global Literature & Information Services