How Do I Empower Myself to Deal with Multiple Sclerosis?
Maximizing your potential to live well with multiple sclerosis should be the goal. Get informed about the symptoms of MS such as fatigue, numbness and bladder problems. Explore our site to learn more about your options to minimize or overcome these symptoms so you can feel and function better. Granted we don’t have a way to repair old injury yet, but there are many options to help deal with the day-to-day symptoms. Develop a partnership with your healthcare providers to address these specific symptoms is so you can live well.
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Evidence suggests a Mediterranean diet (especially olive oil) is associated with less disability from MS. Modified paleo diet and intermittent fasting may have benefits as well. Eat lots of fruits and vegetables and minimize saturated fats. Plenty of water is important. Many people restrict water to prevent bladder accidents but end up with worsening constipation and dehydration.
Low Vitamin D blood levels have been found to be a risk factor for the development of MS. In one study, individuals with MS who had higher blood levels of Vitamin D were more likely relapse-free. In contrast, people with low levels of Vitamin D were more likely to have more MRI activity and disability.
Critical in MS! The saying "use it or lose it" applies. If you have minimal or no physical disability, aerobic exercise like walking and running are great. Avoid the heat of day or the end of the day which can limit your endurance. If you have mobility challenges, consider water therapy or yoga. Both are also good for people with balance issues. Swimming also keeps your body temperature cool.
If you have trouble walking, try a recumbent bike with ten minutes episodes of alternating exercising and rest. People with physical disability should strongly consider a course of physical therapy. A physical therapist can frequently help you learn to walk better and more safely as well as develop a customized exercise plan for you. Many devices are available to help assist your gait. A medication called dalfampridine can improve walking speed in some people living with MS but has a small risk of seizures.
Your attitude can make a tremendous impact on how you live with MS. A good mindset will help you focus on your goals in life and not let MS define you. A positive attitude will help you take your medication regularly, exercise, and eat well. Turn to family and friends for support. If you don't have much support, consider joining an online or an in-person local MS support group.
Depression is common in MS, affecting up to 50% of individuals. Depression may be due to the impact of MS on the brain, a reaction to having the disease, or even an interferon treatment side effect. Signs of depression include increased irritability, trouble sleeping, crying, more withdrawn, appetite change, feeling of worthlessness or suicidal. If you feel depressed, call your doctor as soon as possible. Therapy can be very useful. Anti-depressants are generally very effective. A psychiatrist and/or psychologist may be involved in the treatment plan.
Fatigue is a huge issue in MS, affecting 90% of people. Different types of fatigue can occur with MS such as reduced muscle endurance or overwhelming tiredness despite a good night's sleep. Exercise reduced fatigue in clinical trials. Short breaks or naps during the day can help. Plan physical activity in the morning and try not to over-schedule. Seek treatment for poor sleep due to anxiety, restless legs, sleep apnea (snoring/stop breathing), muscle cramps and frequent urination.
If fatigue is interfering with your life, cognitive behavioral therapy can help. Oral medications such as modafinil, amantadine and amphetamines can significantly provide relief if needed.
Fix Bladder and Bowel Issues
The most common MS bladder symptom is the need to urinate right away called "bladder urgency." Not being able to make it to the bathroom in time can lead to a loss of urine accidentally or "urinary incontinence." Mild bladder urgency can be controlled by relieving yourself regularly and before activities (especially before going for a drive). Avoid caffeine which can worsen bladder urgency. If the urgency or incontinence is problematic, anti-cholinergic and beta-adrenergic medications can be very effective. Botox injections in the bladder can stop bladder urgency for up to 6 months.
Some people with MS have the opposite problem; they have trouble emptying their bladder. The inability to void completely is called "urinary retention." Sitting for a while on the toilet to urinate or having to go back to the bathroom in a few minutes to empty the rest of your bladder can be signs of urinary retention. Frequent bladder infections can be another sign since bacteria tends to grow in urine sitting in a partially filled bladder. Usually, a visit to a urologist is needed to test for urinary retention using either an ultrasound or catheterization after urinating. Treatment can be medication to relax the sphincter or sometimes catheterization 4-6 times a day using a clean technique.
Constipation is common with MS. Regular bowel movements are daily. For constipation, first try increased water and probiotics. If these options do not work, consider over-the-counter medications such as Miralax. Sometimes suppositories are required to have a bowel movement. Some people living with MS have very little warning before having a bowel movement called "bowel urgency" or sometimes accidents called "bowel incontinence." Frequently, bladder medications that help tighten the sphincters for bladders work for bowel urgency and incontinence.
A healthy sex life is important to many of you living with MS. MS can lead to sexual dysfunction, especially when the spinal cord is significantly attacked. A new change in genital sensitivity, erection ability or the ability to have an orgasm may be due to an acute MS relapse, which can be treated like other attacks with I.V. steroids. For women, extra stimulation is sometimes needed to overcome reduced sensitivity. Many men respond to oral medications for erectile dysfunction such as sildenafil and tadalafil. Penile injections can be very effective for erectile dysfunction. Be aware that many medications such as anti-depressants can cause sexual dysfunction, especially a delay in orgasm.
Physical limitations from MS can be addressed by trying new positions. The morning is generally better since you can have more physical energy and less fatigue. Be creative in satisfying your partner. You may need to explore options you had not previously considered such as using sexual aids. Have an open discussion regarding your needs and listen to your partner's desires and concerns. Especially deal with emotional issues for not having sex, but physically able.
Relieve Painful Sensations
MS can sometimes be very painful. Pins and needles and burning sensations are common. Some people have electric bolts of pain in their face called trigeminal neuralgia. Electric shock-like sensation down the spine with neck movements is called "Lhermitte’s sign." To help relieve nerve pain such as burning and pins-needles, medications used for nerve pain frequently work. Gabapentin (Neurontin), pregabalin (Lyrica), duloxetine (Cymbalta) and amitriptyline are often used "off-label" since they are not FDA-approved for MS pain. For trigeminal neuralgia, carbamazepine (Tegretol) or oxcarbazepine (Trileptal) are also very effective options.
Muscle spasms and cramps, especially in the legs, can be severe. Muscle relaxants such as baclofen and tizanidine can help reduce stiffness or "spasticity." Sometimes these medications cause drowsiness and are taken only at night. Stretching exercises can help. Botox injections are another potential treatment option.
New onset balance problems should be treated as a relapse with I.V. steroids. Gait imbalance may be associated with other neurological symptoms such as spinning sensations (vertigo), hand tremor, coordination problems, ringing in the ears (tinnitus) and double vision (diplopia). Prevention of falls is key so assessing your mobility needs is important. Some people need a cane or walker, at least temporarily.
A physical therapist can address ways to compensate for imbalance and help you come up with exercises to try to improve your balance. Yoga can be useful to learn how to better try to control imbalance. MS yoga classes are available even if you have a fair amount of disability.
Cognitive issues occur in half of people with multiple sclerosis. Short-term memory loss, multitasking problems and word-finding difficulty can lead to challenges at work and home. Controlling your disease with the available MS medications is the best way to prevent progression. A new change in thinking abilities may be a relapse that can be treated with I.V. steroids. Stopping smoking is highly important to help preserve brain heath with multiple sclerosis.
To fight short-term memory loss and multi-tasking problems, get organized! Take more notes, buy an electronic organizer, and use emails so you can go back and retrieve information. Have a large family calendar on the refrigerator. Rely on written "To Do" lists rather than verbal instructions. Minimize distractions when trying to focus on a specific task. Medications for dementia such as Alzheimer's have not yet been proven to work in MS. Hopefully, new research will lead to ways of repairing memory.