The Pain in My Neck Turned Out to Be Fibromyalgia


As told to Jacquelyne Froeber

I was lifting weights at the gym when I felt something rip in my neck. I wanted to scream, but the sudden burst of fiery pain took my breath away. “Don’t panic,” I told myself. It was probably just a neck strain or a pinched nerve.

I went home and put ice on it.

The fire continued to burn.

The year was 2000. We’d all survived Y2K. I was 26 years old and two finals away from surviving my first year of medical school.

I expected the pain in my neck to get better as finals week went on — but it got worse. I studied human anatomy with a ring of fire supporting my head. Then the flames started to spread down my back and continued moving south.

Somehow, I made it through finals, but there was no relief from the burning pain. It was officially time to panic.

What the hell was wrong with me?

I went to medical school in Boston so there were a lot of fancy healthcare providers and specialists to choose from. One by one, appointment after appointment, everyone said the same thing: “We don’t know what’s wrong with you.” There was nothing to see on my scans. No neck injury to speak of.

To add insult, some providers said I was imagining the pain. Others said depression was the problem. Everyone said I needed to exercise more.

I was already exercising — hence the gym injury — and I tried to do more. But fatigue had set in, and I was so tired all the time. I woke up exhausted as if I didn’t sleep at all during the night. I was also stiff and sore — like I’d run a marathon and then gotten hit by a truck on repeat.

I was running on fumes by the time school started again. I had just enough in me to study. I knew I couldn’t go into a hospital environment and work with patients when I felt so bad. So I took a medical leave of absence my third year — which was basically unheard of — but I knew I didn’t have a choice. I had to get better or give up on my dream of being a doctor.

By this time, I was desperate. I’d spent every penny I had on alternative medicine, specialists, acupuncture and herbs. Nothing helped.

Someone along the way suggested I see a chiropractor so I made a half-hearted appointment. During the exam, he pressed on a spot in my upper body and I almost fainted. “That’s so painful,” I cried out. He pressed on other areas with the same result. “I think you have fibromyalgia,” he said.

“Fibro-what?” I asked. I’d never heard that term before in medical school — or ever. It was the first time someone gave a name to the pain. It was the first time in years I had hope.

I practically sprinted to the bookstore and headed to the health section. I made my way to “F” and found one copy of “Fibromyalgia and Chronic Myofascial Pain: A Survival Manual.” I clutched the book in my hot little hands and spent the next 24 hours reading about fibromyalgia.

Everything in the book described me. I was nodding along with every line. The burning, the pain, the brain fog — it was all me. It was exciting — thrilling — to finally have some answers. It was devastating, however, when I learned that medical treatments were basically nonexistent at the time.

Back then, fibromyalgia was considered a “wastebasket diagnosis,” which meant that healthcare providers thought the symptoms were either fake or all in your head. And there wasn’t much doctors could offer as far as treatments.

Learning what the medical community thought of my condition lit a new — different — fire within me. I knew I had to get better enough so I could help other people find a better way to live.

Over the next few months, I used myself as a guinea pig and tracked the things that made me feel better. I was sensitive to dairy, so I changed my diet. I prioritized stress management and sleep hygiene.

A type of therapy called myofascial release was the pain changer for me. The technique involves stretching the tissues around the muscles that can be inflamed for people with fibromyalgia. After the first treatment, I felt a small amount of pain relief in my neck. I knew I was on to something big.

The combination of lifestyle changes and myofascial release therapy brought my pain down from a 7 to a 3. I felt good enough to go back to med school.

Even though I had an idea what the medical community thought about fibromyalgia, hearing it in person almost broke me. Early on in the school year, a teaching physician announced that fibromyalgia didn’t exist. Other colleagues said people with fibromyalgia were making it up to get disability benefits. The consensus was that people with fibromyalgia were lazy. Hopeless. A waste of “our” time.

I wanted to yell at the top of my lungs that no one had a clue what it was like to live with fibromyalgia. But I kept to myself. If this is what my colleagues thought about my condition, what would they think about me?

At the end of school, I had to do a presentation in front of all my peers, physicians and teachers. I presented a case study on fibromyalgia and revealed, at the end, that it was about me. I started weeping right there at the podium. I sobbed uncontrollably in front of hundreds of people and I couldn’t stop. For so long I’d been hiding this secret. I looked fine on the outside, but on the inside, I was going through hell.

Most importantly, I wasn’t making it up. And I wasn’t alone.

After the presentation, I was shocked at the amount of people who lined up to thank me for talking about fibromyalgia. So many people said they had family, friends or patients going through a similar situation. The reaction was so positive — it gave me hope that things could change.

Ginevra Liptan, M.D. 2023

After school, I dedicated my career to fibromyalgia and pain conditions. Thankfully, the medical community changed and fibromyalgia is a recognized chronic condition and there are FDA-approved medications available to help treat it, along with a variety of alternative treatments that can be helpful.

The problem is that fibromyalgia is far more complex than just taking medication. Each person is different and some people really struggle to find any relief. I’m lucky in the sense that medication and lifestyle help me stay around a 2 or 3 on the pain scale. It’s manageable. And in the absence of a cure, that’s all anyone with chronic pain wants — to feel good enough to do the everyday things you have to do.

In 2016, I published the book, “The Fibromanual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor,” inspired by that desperate trip to the bookstore so many years ago. The information still holds up today, but there’s also so much new research and insight into fibromyalgia out there. It gives me hope that one day soon all of us with fibromyalgia can defeat it.

Have a Real Women, Real Stories of your own you want to share? Let us know.

Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

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Facts About Digital Therapeutics – HealthyWomen



If you’re sick of hearing about all the ways technology is bad for us, here’s some good news to consider: Prescription digital therapeutics (PDTs) are among the latest digital health products helping to increase access to quality healthcare.

PDTs and digital therapeutics in general are used to help prevent, treat and manage a range of mental and physical conditions via mobile devices like your smartphone. The difference between PDTs and other health apps is that PDTs are authorized by the Food and Drug Administration (FDA) and require a prescription from your healthcare provider (HCP).

PDTs offer unique options not traditionally seen during your typical office visit. Some PDTs provide custom treatments such as a video game for ADHD and a wearable device that uses vibrations to interrupt nightmares. Other PDTs use cognitive behavioral therapy (CBT) to help with conditions such as insomnia or irritable bowel syndrome. The evidence-based treatments backed by clinical research can be used alone or in combination with other treatments.

The current PDTs approved by the FDA apply to both mental and physical conditions. These include:

PDTs may be especially helpful for women and people assigned female at birth considering many of these health conditions affect more women than men. For example, women are nearly twice as likely to be diagnosed with depression compared to men. The latest PDT approved by the FDA in April treats major depressive disorder.

Through the app, people are asked to identify and compare emotions displayed on a series of faces as part of cognitive-emotional training. Research shows this type of therapy may help stimulate the parts of the brain involved in depression and have antidepressant effects.

Read: The Life-Changing Hope of New Treatments for Clinical Depression >>

PDTs may also be particularly beneficial for people with substance use disorder. A recent study of people with opioid use disorder, mostly women, found that those who used a PDT had significant reductions in medical care visits, including inpatient stays and trips to the emergency room.

Benefits of prescription digital therapeutics

In addition to unique treatment options, PDTs can offer benefits including:

  • Convenience. You can access treatment on your schedule wherever you want.
  • Access. People who have a difficult time getting to in-person office visits can still get the care they need.
  • Equality: Digitized therapies that rely on a standard, evidence-based format ensure that people who use them receive the same quality and level of care.
  • Privacy: PDTs offer an option for people who feel stigma or shame about their health condition.

Although PDTs can help increase access to quality care, health insurance coverage for PDTs can vary and insurance may not cover them at all. And despite the FDA stamp of approval, some experts say more research is needed before making PDTs a mainstay in the healthcare system.

If you’re interested in PDTs, talk to your HCP about your options.

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The Importance of Obesity Treatment



It’s always a successful day at the office for
Fatima Cody Stanford, M.D., M.P.H.,M.P.A., when she can look at a patient’s chart, see a diagnosis of diabetes, high cholesterol or hypertension, and see progress in their health or resolution of a health concern.

Shanna Tucker, M.D., an obesity medicine specialist at NYU Langone Health, has a similar standard. If she can reduce the dosage or stop prescribing medication for one of these diseases, she knows her patient is on the right track.

When
obesity medicine specialists help patients with weight loss, their overall goal is far greater than achieving lower numbers on the scale. By treating a patient’s obesity, specialists are also helping patients manage and resolve other chronic conditions that threaten their overall health.

“Most of my patients have been with me for a decade or longer, so this is a lifetime commitment to their chronic disease that is obesity,” said Stanford, an associate professor of medicine at Massachusetts General Hospital and an obesity medicine physician-scientist. “I want to help them delete diagnoses from their chart — from their obesity itself to diseases associated with their obesity.”

Obesity can
reduce life expectancy because it generally increases the risk of other conditions and chronic diseases, including diabetes, heart disease, kidney disease and liver disease. And it can also contribute to sleep problems, joint pain, mental health issues and some cancers. It was also found to be a top risk factor for Covid-related hospitalization and death.

Growing rates of obesity have created a significant public health issue in the U.S. More than
1 in 3 adults and 1 in 5 children are living with obesity, and the U.S. spends more than $147 billion a year on obesity-related healthcare.

Tucker said many patients come to her in frustration because they’re already eating well and exercising. They’ve lost some weight, but they can’t seem to lose any more or their weight has started climbing. They’re also struggling with chronic health conditions made worse by obesity.

“Not enough medical providers may understand that sometimes additional treatment is necessary for many patients,” Tucker said.

The benefits of anti-obesity medications

Obesity medicine specialists tailor plans for patients that can include a combination of lifestyle management, medication and, in some cases, surgery.

Anti-obesity medications (AOMs) have been getting a lot of attention in the media, with many public figures attributing their weight loss to the use of these medicines. While anti-obesity medications aren’t new — the FDA first began
approving them in 1959 — the current class of GLP-1 medications like semaglutide have become household names (Ozempic/Wegovy and Mounjaro/Zepbound) for their ability to help people achieve significant weight loss.

While the weight loss achieved through GLP-1 medications makes headlines, obesity medicine specialists have a broader view of the medications’ benefits and see how they can offer quicker resolution to chronic diseases. A
meta-analysis (a review of many studies) shows that anti-obesity medications can contribute to a significant reduction in cardiovascular events, like heart attacks and strokes, and hospital admission for heart failure in people with Type 2 diabetes.

Tucker said people living with obesity don’t have to lose a lot of weight to see results. Even just a
5%–10% drop in weight can help improve high cholesterol or high blood pressure. Weight loss can also be important for quality-of-life improvements, such as allowing people to move more easily, sleep better, experience less joint pain and have more energy.

“I know a lot of people don’t want to start a new medication, but by treating obesity, I’ve had patients who’ve had a significant amount of weight loss and were able to start decreasing the dose of their diabetes medication or even stop their high blood pressure or high cholesterol medications,” Tucker said. “I say to keep the big picture in mind about the potential benefits of anti-obesity medication.”

Barriers to obesity treatment

Although effective obesity treatment can improve health outcomes and yield substantial savings for the nation’s healthcare system, many Americans don’t have access to obesity care.

Not enough healthcare providers are trained in obesity medicine, Tucker said, and the cost of the medications themselves can prevent patients from being able to get them. There’s also no guarantee that the medication will be covered by insurance or available to Medicaid and Medicare recipients.

“I think we’re really doing a disservice to these patients,” Tucker said. “They’ve already sought help and have made an appointment and come into my office. To get that far and not be able to prescribe a medication because of insurance is very disappointing.”

Since each state Medicaid plan has its own policies for obesity treatment coverage, many people don’t have access to anti-obesity medications. And, at the federal level, Medicare Part D still prohibits coverage of AOMs for most patients, even though people covered under the Veterans Affairs/Department of Defense and Federal Employee Health Benefits plans do have access to the full continuum of care for obesity. Stanford said she’s hoping the Treat and Reduce Obesity Act, first introduced in Congress in 2012 and reintroduced each session since, will become federal law to help expand coverage for Medicaid and Medicare patients.

Watch: Congressional Briefing: Ensuring Patient Access to Effective Treatments for Obesity >>

Stanford said she’s seen older adults who’ve made significant progress getting rid of chronic conditions through treatment lose all of their progress when they enroll in Medicare and can no longer afford their medication if they lose coverage for their medication.

Stanford also pointed out other disparities in who’s most likely to have access to treatment.

“The populations most likely to benefit, particularly racial and ethnic minority populations here in the U.S., are struggling to get these meds,” Stanford said. “We have to get past the idea that people just need to eat less and exercise more, which is founded not on science. I want to change that narrative. We can do better to help those who need it.”

Still, for people who are struggling with obesity and other chronic health conditions, Tucker said it’s worth talking to your healthcare provider to see if some type of obesity treatment can help.

“I know some patients may want to avoid the topic, and I can understand why for many reasons,” Tucker said. “There’s a lot of obesity bias or weight bias in the medical community. I do encourage people to at least ask their [healthcare provider] what resources are available if they’re interested in losing weight so they have all the information and resources to help them make the best next step.”

Help Us Increase Access to Obesity Treatment >>

This educational resource was created with support from Novo Nordisk, a HealthyWomen Corporate Advisory Council member.

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What Is POTS? – HealthyWomen



If you’ve ever stood up too fast and felt dizzy for a moment, you know how disorienting that can be.

This happens because your blood pressure drops and your blood moves to the lower part of your body when you stand up. Sometimes, it can take a second for your system to increase your heart rate and get the blood flowing to your brain — which is why you feel lightheaded.

An occasional spell of dizziness when standing up is usually not cause for concern. But for people with postural orthostatic tachycardia syndrome (POTS), standing up can cause a wide range of problems including fainting, and it can have a serious negative effect on your quality of life.

As many as 3 million people in the U.S. have POTS, and most of them are women and people assigned female at birth. If you think you may have POTS, or know someone who does, here’s what you need to know about this health condition.

What is POTS?

Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart rate to go up more than 30 beats per minute, and your blood pressure to go down when you stand up.

Basically, the disorder affects the autonomic nervous system, which is responsible for regulating things like your heart beat and blood pressure. It may not sound that serious, but people with POTS can experience debilitating symptoms including rapid heartbeat (tachycardia) and extreme fatigue among other chronic problems.

What are POTS symptoms?

In addition to an increased/rapid heart rate, people with POTS can have a range of symptoms. These can include:

  • Extreme fatigue
  • Lightheadedness
  • Brain fog, including focus and memory problems
  • Nausea
  • Headache attacks
  • Sweating
  • Shakiness
  • Exercise intolerance (unable to do physical activity)
  • A pale face
  • Purple-tinged hands and feet when they are lower than the heart

The symptoms of POTS can get worse if you’re in the heat (even taking a hot bath) or standing a lot. Some women experience an increase in symptoms before their period starts and these can get worse if you’re not hydrated or if you need more salt in your diet.

What are the types of POTS?

There are three main subtypes of POTS. These are:

  • Neuropathic: The small nerve fibers in your abdomen and legs have trouble carrying blood up from your lower body. This causes swelling in the legs, discoloration and less blood flow to organs around the stomach area can cause gastrointestinal problems.
  • Hyperadrenergic: Standing up makes your blood pressure and norepinephrine (the fight-or-flight hormone) levels go up. This makes you feel dizzy and short of breath in addition to other symptoms.
  • Hypovolemic: You have less blood in your system and fewer red blood cells. This can cause weak muscles and problems during exercise.

How is POTS diagnosed?

With all the different symptoms, it can be hard to get a diagnosis for POTS. For women and people assigned female at birth, the condition can be misdiagnosed for years and lead to a significant delay in care. Research shows women with POTS wait at least five years for a diagnosis compared to three years for men.

Two common tests used to diagnose POTS are a 10-minute standing test and a head-up tilt table test. The standing test is pretty much exactly like it sounds: Your healthcare provider (HCP) will measure your blood pressure, heart rate and other levels as you stand up from a relaxed position and continue to stand for 10 minutes.

The head-up tile table sounds more like something out of a magic act: You’re strapped on a table lying flat and the table is raised to an upright position. Your HCP will check your heart rate, blood pressure and other levels to see if you may have POTS.

Other tests and blood work may be ordered to look at the nerves that control the heart and control sweating.

POTS treatments

Since the exact cause of POTS is unknown, treatments can vary depending on symptoms. Treatment options to help manage POTS can include:

  • Adding salt to your diet
  • Staying hydrated and drinking about 64-80 ounces (about 2-2.5 liters) of fluid a day
  • Wearing compression garments to push blood deeper into the veins
  • Taking medication including beta receptor blocking agents
  • Eating a high-fiber diet
  • Incorporating exercise (or starting physical therapy if you have exercise intolerance) including isometric exercises to help push blood back toward your heart

What are POTS medical devices?

You can monitor POTS at home to help you identify triggers and lifestyle changes that may help with symptoms. You may want to consider getting a:

  • Blood pressure monitor
  • Heart rate monitor
  • Finger pulse oximeter
  • Smartwatch or smart ring to track your heart rate

Tips for POTS self-care

In addition to diet and exercise, there are some things you can do to help your overall well-being and minimize symptoms of POTS.

  • Get enough sleep
  • Try yoga or meditation to work on breathing techniques
  • Join a POTS support group or consider counseling to talk about your condition

POTS can be difficult to diagnose and every case is different. If you’re experiencing dizziness, rapid heart rate or any other symptoms of POTS, talk to your HCP as soon as possible. Many people with POTS can manage symptoms with the right treatment plan.

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Family Planning with a Chronic Illness



Erica Lemons knew her path to motherhood wasn’t going to be easy. But she wasn’t going to let her chronic health condition stop her from getting pregnant.

“My doctor told me to talk to him before I got pregnant because of possible complications, so that’s the first thing I did,” she said.

Lemons quickly learned that trying to get pregnant with a chronic disease was going to be even more complicated than she thought. For starters, she had to stop taking the medicines she was on for her chronic illness and had to wait months before she could get pregnant.

“I was shocked — I didn’t realize how long I had to be off the medicines before I could even try,” she said. “My advice for anyone thinking about getting pregnant is to talk to your doctor sooner than later. You may have to wait longer than you think.”

Nearly 3 out of 10 women and people assigned female at birth in the U.S. are living with multiple chronic conditions. These conditions usually require medicine, which is why it’s important to talk about family planning with your healthcare provider (HCP), even if it’s just a possibility for the future. Your HCP may be prescribing more aggressive treatments that may not be the best option if you’re considering pregnancy in the future.

Unfortunately, not all HCPs are asking about pregnancy planning. This may be because of many factors, including a lack of time, knowledge and skills to start the conversation. In one review of pregnancy planning and women living with chronic conditions, the women said their health information needs were not being met. And they wanted to have better discussions with their HCPs.

What is shared decision-making?

Shared decision-making is when you decide on your treatment path after a thorough conversation with your HCP. This is especially important for people with chronic health conditions who are planning a family.

HCPs manage your health before, during and after pregnancy and provide guidance that may influence family planning. “Some diseases worsen during pregnancy and some improve, and knowing this would help you determine a good time to start trying to become pregnant,” said Connie Newman, M.D., adjunct professor of medicine at NYU Grossman School of Medicine and a member of HealthyWomen’s Women’s Health Advisory Council.

Chronic health conditions last more than a year and can include a wide range of diseases from multiple sclerosis (MS) to diabetes to high blood pressure. Both the condition and the medicine can affect pregnancy and your ability to get pregnant in the first place. Some medicines can cause serious problems during pregnancy, such as preterm birth and birth defects.

Read: Can Living in the U.S. Increase Your Risk of Preterm Birth? >>

“Patients should tell their HCP about their plans for pregnancy and ask the HCP whether the prescribed treatment is safe during pregnancy. If the answer is no, then the patient can ask about taking a different medication that is safe to use,” Newman said. “Patients should also ask whether the disease will worsen during pregnancy, and how their medications should be adjusted.” Changes may include the dose, how many times you take it and/or a different medicine altogether.

Questions to ask your healthcare provider about chronic disease and pregnancy

If you haven’t talked to your HCP about your plans, you may want to schedule a preconception counseling visit. During the appointment, your HCP will review your treatment plan and how pregnancy may affect your health overall.

Newman said it’s a good idea to write down questions you have about pregnancy and bring them with you to your appointment. These can include:

  • Will my disease get worse during pregnancy or improve? And when will this happen (first, second or third trimester)?
  • Will the medicine I’m taking be harmful during pregnancy, including very early pregnancy before I may even know I’m pregnant?
  • Can you describe the risks of the medicine?
  • Will I have to stop the medicine or switch to a different medicine when I’m pregnant? Should I do this when trying to get pregnant or after the pregnancy test is positive and I know for sure I’m pregnant?
  • Can I breastfeed while taking this medicine?

You can also talk with your HCP during your well visit if you haven’t already done so.

Weighing risks and benefits of treatment options

Weighing the risks and benefits of treatment are a crucial part of the shared decision-making process. “The HCP and the patient should discuss the risks and benefits to determine a plan for medication use during pregnancy,” Newman said.

Outside of talking with your HCP, Newman said women can read about potential effects of treatment options using reputable online sources, including the patient information part of the drug label or the drug labels written for prescribers.

Managing chronic conditions can also mean involving specialists and other HCPs in your family planning process. Lemons said her HCP connected her with a fertility specialist, for example, and other HCPs along the way. She said she appreciated all the frank conversations they had and that his support meant so much during a time when she felt so overwhelmed.

Lemons gave birth to a healthy baby boy in 2012. She said all the planning and waiting and anxiety wasn’t easy. But nothing is exactly easy when you’re pregnant and managing a chronic condition. “Just remember to be kind to yourself and your mental health,” she said. “Put yourself first.”

This educational resource was created with support from Viatris, a HealthyWomen Corporate Advisory Council member.

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How MS Affects the Body



Slide 1

How MS Affects the Body

MS affects everyone differently and can impact many parts of the body

Slide 2

Multiple sclerosis (MS) is a disease that affects the central nervous system, which is made up of the brain and spinal cord.

MS happens when the immune system attacks the myelin sheath, the cover that protects nerve fibers. The damage complicates communication between the brain and the rest of the body. As a result, MS can affect many parts of the body.

Slide 3

Brain

Damage to myelin and the nerves underneath can disrupt the brain’s ability to send signals to the rest of the body.

About 1 in 2 people with MS have problems with thinking, called cognitive problems, including trouble concentrating and poor memory.

Slide 4

Eyes

MS can cause inflammation in the optic nerve, which connects the eye to the brain. This inflammation may lead to vision problems, including blurred vision and pain with eye movement.

Slide 5

Throat

MS can damage nerves that control the muscles required for chewing, swallowing and speaking. MS may also cause throat numbness that makes chewing and swallowing hard.

Slide 6

Chest

Nerve damage to chest muscles can cause breathing problems.

Nerve damage can cause a symptom known as “MS hug” (aka “girdling”), which is the feeling of a tight band around the chest or ribs.

Slide 7

Arms

Muscle weakness in the arms and legs is a common MS symptom.

Many people with MS also get a “pins and needles” feeling or numbness in their arms and legs.

Slide 8

Bladder and Bowels

Nerve damage can lead to problems with bladder and bowel control.

Slide 9

Legs and Feet

Weakness in one or both legs is a common symptom that can make walking or balancing hard. Leg and foot pain, numbness, and tingling are common as well.

Some people with MS get “hot feet” (erythromelalgia), which is when their feet feel hot and swollen even though they look normal.

Slide 10

MS affects everyone differently, and symptoms can be hard to predict. A healthcare provider can help you decide if treatment is an option for managing your individual MS symptoms.

This educational resource was created with support from Novartis.



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En qué forma afecta el cuerpo la EM



Slide 1: Title Page

En qué forma afecta el cuerpo la EM 

La EM afecta a cada persona en forma diferente y puede impactar muchas partes del cuerpo 

Slide 2: Intro page

La esclerosis múltiple (EM) es una enfermedad que afecta al sistema nervioso central que incluye al cerebro y a la médula espinal. 

La EM ocurre cuando el sistema inmunológico ataca la vaina de mielina, la capa que protege las fibras nerviosas. El daño complica la comunicación entre el cerebro y el resto del cuerpo. Consecuentemente, la EM puede afectar muchas partes del cuerpo. 

Slide 3: 

El cerebro 

La lesión de la mielina y de los nervios que se encuentran bajo esta puede alterar la capacidad del cerebro de enviar señales al resto del cuerpo. 

Aproximadamente 1 de cada 2 personas con EM tiene problemas de la actividad mental, conocidos también como problemas cognitivos, incluyendo problemas de concentración y mala memoria. 

Slide 4: 

Los ojos 

La EM puede causar inflamación del nervio óptico, el cual conecta el ojo con el cerebro. Esta inflamación puede causar problemas de la vista, incluyendo visión borrosa y dolor cuando se mueve el ojo. 

Slide 5:  

La garganta 

La EM puede dañar los nervios que controlan los músculos requeridos para masticar, tragar y hablar. La EM también puede causar adormecimiento de la garganta, lo cual dificulta las actividades de masticar y tragar. 

Slide 6: 

El pecho 

Lesiones de los nervios de los músculos del pecho pueden causar problemas respiratorios. 

Las lesiones de los nervios pueden causar un síntoma conocido como el “abrazo de la EM” (también denominado “sensación de presión”), que se siente como si una banda apretase el pecho o las costillas. 

Slide 7: 

Los brazos 

Debilidad muscular de los brazos y las piernas es un síntoma frecuente de la EM. 

Muchas personas con EM también tienen una sensación de “alfileres y agujas” o de adormecimiento en sus brazos y piernas. 

Slide 8: 

La vejiga y los intestinos 

Las lesiones de los nervios pueden causar problemas con el control de la vejiga y de los intestinos. 

Slide 9: 

Las piernas y los pies  

Debilidad de una o ambas piernas es un síntoma frecuente que puede dificultar el caminar o el equilibrio. Dolor, adormecimiento y cosquilleo de las piernas y de los pies son síntomas frecuentes también.  

Algunas personas con EM tienen “pies calientes” (eritromelalgia) que es cuando sus pies se sienten calientes e hinchados independientemente a pesar de que su apariencia es normal. 

Slide 10: 

La EM afecta a cada persona en forma diferente y los síntomas pueden ser difíciles de predecir. Un proveedor de atención médica puede ayudarte a decidir si algún tratamiento es una opción para manejar tus síntomas personales de la EM. 

Este recurso educativo se preparó con el apoyo de Novartis



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Consejos para una vida con esclerosis múltiple (EM)


Vivir con esclerosis múltiple significa que tendrás que hacer algunos cambios en tu vida, incluyendo administrar tus cuidados personales. ¡Estos son tan importantes como tu tratamiento médico!

Según la neuróloga
Le Hua, M.D., entre más pronto abordes los asuntos relacionados con tu estilo de vida, más fácil será controlar tus síntomas o incluso reducir la velocidad de su progreso.

Nutrición

healthy diet with ms

Una nutrición sana promueve alimentos saludables y limita los que no son tan sanos, tales como alimentos procesados con alto contenido de grasa y de azúcar. Hua recomienda la dieta mediterránea como un buen plan alimenticio para la mayoría de personas con EM. No solo se enfoca en alimentos saludables, sino que también es considerablemente asequible. Los alimentos recomendados son, entre otros:

  • Frutas
  • Vegetales
  • Productos lácteos bajos en grasa
  • Pastas, cereales y panes integrales
  • Frijoles
  • Frutos secos y granos
  • Alimentos marinos y aves de corral
  • Aceite de oliva

Ejercicio

Podría parecer que hacer ejercicio o incrementar la actividad física aumentaría el cansancio que se produce por la EM. Sin embargo, el ejercicio de hecho reduce la fatiga e incrementa tus endorfinas, las hormonas que “te hacen sentir bien”. Lo que debes hacer después de tu diagnóstico de EM depende del nivel de estado físico que tenías antes de dicho diagnóstico. Si solías participar en maratones y si vas al gimnasio todos los días, seguir con ese nivel es útil. Si nunca has hecho ejercicio, empieza a realizar actividades físicas en forma gradual. Incluso caminar alrededor de la cuadra es útil. Recuerda, trabajar en el torso es útil para el equilibrio y reduce las caídas. Algunas actividades que pueden mejorar el estado físico de tu torso son:

  • Yoga
  • Pilates
  • Ejercicios con bandas de resistencia
  • Estiramiento

Sueño

sleep with MS

Muchas personas con EM sienten mucho cansancio. No dormir suficiente causa incluso más fatiga, pero los problemas de sueño debido a EM pueden tener diferentes causas:

  • Angustia, especialmente justo después del diagnóstico
  • Dolor
  • Levantarse frecuentemente para orinar

Cosas que puedes hacer para promover un mejor sueño:

  • No uses dispositivos electrónicos, no veas televisión, no hagas ejercicio ni participes en actividades que estimulen tu cuerpo o mente de dos a tres horas antes de ir a la cama.
  • Haz algo relajante, tal como escribir un diario, colorear o cualquier actividad que te dé calma.
  • Toma siestas estratégicas que no duren más de 15 a 20 minutos.
  • Habla con tu doctor si el dolor o ir con frecuencia al baño hace que te mantengas despierta.

Controla tu peso

El tejido adiposo, también conocido como células grasas, es inflamatorio. Esto incrementa los síntomas de la EM. La pérdida de peso debería basarse en cómo te sientes, dijo Hua, no en lo que muestra la balanza. Así que no te enfoques en eso. Enfócate más en mejorar tu nutrición y en el ejercicio. Comunícate con un nutricionista para obtener orientación y apoyo si es necesario.

Deja de fumar

Fumar empeora los síntomas y resultados de la EM, así que dejar el hábito del tabaco es importante. Fumar incrementa la inflamación de tu cuerpo y también afecta negativamente a los medicamentos para la EM. Dejar de fumar puede reducir la tasa de progreso de la EM y disminuir las recaídas. Pide ayuda a tu doctor o comunícate con grupos de apoyo. Podría tomar varios intentos, pero cada vez, estarás un poco más cerca de tu meta.

Cuida tu salud mental

woman practicing yoga to help with MS

Ya sea que escribas un diario, que medites o que hables con un profesional o grupo de apoyo de la salud mental, el cuidado de tu salud mental es una parte importante de vivir bien con EM.

Este recurso educativo se preparó con el apoyo de Novartis.

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