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3 Tips for Living with Erythromelalgia

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Erythromelalgia is an extremely rare condition that’s recognized as such by the National Organization for Rare Disorders (NORD). It affects an estimated 1.3 out of 100,000 people in the United States. But as rare as it is, it can be debilitating for the individuals who have it. 

If you or a loved one has erythromelalgia, finding answers is obviously your greatest priority.

What is Erythromelalgia?

Erythromelalgia is extremely uncommon. However, for those who suffer from the condition, it’s a painful condition that commonly affects the feet and (sometimes) the hands. People with the condition describe it as an intense, burning pain that can be both episodic or continuous. Some people experience sudden flare ups, while others have a more chronic form of the condition.

“In most individuals, it is episodic/intermittent, with episodes of red hot feet and/or hands intermittently,” NORD explains. “Symptom onset may be gradual (insidious), with the condition potentially remaining relatively mild for years. However, in others, it may have a sudden (acute) onset, possibly spreading and becoming severe over weeks.”

For those interested in the etymology of the word, the prefix erythro means “redness.” Mel means “limb.” The suffix algia is typically used to indicate “pain.” So the term, while difficult for most to pronounce correctly on the first attempt, quite literally means painful red limbs.

Other names and related conditions for erythromelalgia include erythermalgia, Mitchell disease, Weir-Mitchell disease, and Gerhardt disease.

Doctors generally discuss erythromelalgia in two classifications: primary and secondary. Both tend to have similar symptoms, including burning pain, itchiness, redness, warmth to the touch, sores on the feet, and even radiating/shooting pain.

Primary erythromelalgia has no known cause. It’s most commonly seen in children, but can technically impact anyone. Painful symptoms and discomfort usually affect both sides of the body and get worse in warmer weather. Primary erythromelalgia attacks begin with itchiness that then progresses into severe burning pain. These attacks may last anywhere from several minutes to days.

Secondary erythromelalgia is diagnosed in people who have other conditions and diseases, like autoimmune diseases. This type of erythromelalgia is more commonly seen in adults and usually begins in middle age. The symptoms are pretty much identical to those of primary erythromelalgia.

Tips for Living With Erythromelalgia

Since most doctors know very little about erythromelalgia, there are no known cures. Most people just have to learn to live with it. Having said that, there are certain things you can do to treat the symptoms and make flare ups less likely.

 

  • See the Right Specialist

 

As frustrating as it is, most doctors simply don’t know much about erythromelalgia. And if you think about it, who can blame them? With just 1.3 out of 100,000 people suffering from this condition, they could go years without seeing an erythromelalgia patient in their office. Thankfully, there are specialists who are very familiar with this condition.

When choosing a specialist, look for someone who knows this disorder in and out. Untamed Iona, for example, has a specialist who actually has the condition herself! You can even book an online call with her (so it doesn’t matter where you’re located).

 

  • Try Medication

 

Again, there’s no perfect medication that works for everyone with erythromelalgia. There are, however, effective options that can work. You must be open to trial and error.

Oral medications include options like magnesium selective serotonin, calcium antagonists, tricyclic antidepressants, reuptake inhibitors, and others. Topical medications include compounded creams (gel of 1 percent amitriptyline and 0.5 percent ketamine), capsaicin cream (Zostrix), and lidocaine and menthol (Lidoderm).

 

  • Consider Surgery

 

While it’s definitely a last resort option, there are surgical treatments that can provide relief. The procedure, known as a sympathectomy, cuts nerve endings that send pain signals to the hands and feet. This procedure does come with the potential for serious side effects, including infection, bleeding, and permanent nerve damage. Thus it’s never an ideal choice.

Live Your Best Life

While there might not be a cure for erythromelalgia, there’s still plenty of hope. Just because you haven’t found relief yet doesn’t mean you never will. It’s a matter of speaking with the right people and trying a number of options until something works for you. Whether it’s eliminating a certain factor that seems to cause flare ups, using a specific medication, or even exploring surgery as an option, there are plenty of treatment methods. Don’t give up on yourself. You are your greatest advocate!

Michelle has been a part of the journey ever since Bigtime Daily started. As a strong learner and passionate writer, she contributes her editing skills for the news agency. She also jots down intellectual pieces from categories such as science and health.

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Health

How to Know if You’re Depressed

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Are you depressed or just feeling down? Sometimes it’s hard to recognise where we sit on the depression scale. If you’re constantly experiencing feelings of sadness, emptiness, and hopelessness that can last for weeks, months, or even years; you may benefit from seeing an expert psychologist in Melbourne. This article should hopefully shine some light on the symptoms of depression, how to get help, and where to find support.

What are the symptoms of depression?

Depression is often defined as “a mood disorder that causes a persistent feeling of sadness and loss of interest”. It’s more than just a bout of the blues, and it’s not simply a case of feeling sad after experiencing something upsetting. Rather, it’s an ongoing low mood that interferes with your everyday life and prevents you from enjoying activities that you used to love.

Symptoms of depression can include:

  • Feeling persistently sad, anxious, or “empty”
  • Loss of interest in activities or hobbies that you once enjoyed
  • Feeling hopeless, guilty, or worthless
  • Difficulty concentrating or making decisions
  • Fatigue and decreased energy levels
  • Sleeping too much or not being able to sleep
  • Appetite changes or weight gain/loss
  • Thoughts of death or suicide

How do I know if I’m depressed or just sad?

While it’s normal to feel sad from time to time, you may be suffering from depression if these feelings last for more than two weeks and are interfering with your ability to live a normal life. Depression can also be accompanied by physical symptoms, such as fatigue and changes in appetite. If you’re unsure whether you’re depressed or just sad, it’s best to see a mental health professional for an assessment.

What causes depression and how can it be treated?

There is no single cause of depression, but it can be triggered by a combination of factors, including genetic predisposition, brain chemistry, hormones, and life events (such as trauma or loss). Depression is often treated with a combination of medication and psychotherapy. In some cases, Electroconvulsive Therapy (ECT) may also be recommended.

How can I help a loved one who is depressed?

If you think a loved one may be depressed, the best thing you can do is encourage them to see a mental health professional. You can also offer your support and understanding, and let them know that they are not alone. If you’re worried that they may be suicidal, it’s important to talk to them about it directly.

With the right help, depression can be treated and you can regain your lease on life. If you or someone you know is struggling, please don’t hesitate to reach out for support.

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