I have never really been a fan of Lady Gaga’s music, but I do think she has some fantastic qualities as a person. I certainly sat up and took notice when she met with His Holiness, The Dalai Lama for a discussion on kindness and peace. If you have a cause to promote, you definitely would want her on your side. Being the mega-star that she is, I certainly never expected to have anything in common with her, but all that changed just a few days ago.
A September 12th tweet from the lady herself revealed that the chronic pain she has been suffering from was actually Fibromyalgia. And just like that, with a just a few short words, she joined me—and millions of others—as a Fibro Warrior.
Social media erupted. All of sudden, people are asking questions, posting, tweeting and instagraming about Fibromyalgia. Daytime TV has doctors and experts giving us the lowdown on all things Fibro, and suddenly the condition that I have quietly battled for 28 years is headline news.
So, what exactly is Fibromyalgia?
Fibromyalgia is a chronic (long-term) condition, one that is often widely misunderstood. Often referred to as the “invisible illness”, the origins of Fibromyalgia are not known, but it affects more women than men and typically develops between the ages of 30 – 50. Children and the elderly can also be affected. It is estimated that Fibromyalgia affects up to 5 million people in the US.
The condition very often goes hand-in-hand with many other illnesses, such as irritable bowel syndrome (IBS), chronic fatigue, arthritis, lupus, migraines and depression. Symptoms can—and typically do—vary dramatically between sufferers. Many can function pretty well on a day-to-day basis, but others can be classed as disabled, and, in extreme cases, may be confined to bed.
The symptoms are wide and varied, but, in general, sufferers will experience some (if not all) of the following symptoms.
- Widespread pain, particularly at 18 specific trigger sites
- Increased sensitivity to pain and even touch
- Overwhelming tiredness
- Tight muscles and stiffness, similar to flu-like symptoms
- Sleeping issues, invariably waking up still tired and not refreshed
- Problems with memory and concentration (known as “fibro-fog”)
- Headaches, often accompanied with neck and shoulder stiffness
- Irritable bowel syndrome
- Depression (easy to understand when you are suffering with an invisible illness)
Diagnosing Fibromyalgia is difficult. Patients are often referred for what feels like endless tests, scans and x-rays, most of which invariably come back showing everything is normal. (Hence the “invisible illness” tag.) In many cases, this is what leads the sufferer into depression, as he or she knows that they are unwell, but the medical evidence will often contradicts this. Therefore, sympathetic and supportive health care professionals are crucial, as are understanding, non-judgemental family and friends.
Fibromyalgia in most cases is finally diagnosed by a process of elimination, and the tried-and-trusted trigger point test.
The criteria to diagnose Fibromyalgia, as defined by NHS UK, is as follows:
- You either have severe pain in three to six different areas of your body, or you have milder pain in seven or more different areas.
- Your symptoms have stayed at a similar level for at least for at least three months.
- No other reason for your symptoms have been found.
- The extent of the pain is assessed by applying gentle pressure to certain “tender points” where any pain is likely to be at its worst. They will normally look for a reaction from 13 of the 18 trigger points.
There is no cure for Fibromyalgia and the usual treatment at the moment appears to be somewhat limited. Doctors will often prescribe mediation and recommend lifestyle changes. In my experience, a healthy diet, gentle yoga and meditation have proved the most beneficial, and have allowed me to remain medication-free. The good news is that the condition is not thought to be progressive, and will not cause damage to the muscles, joints or internal organs.
While I would never wish this condition on my worst enemy, I am excited at the prospect of having Lady Gaga as our ambassador. I believe that she will empower the rest of us to share our Fibromyalgia journeys and to help raise the awareness of this most challenging of conditions. Right now, I am at least grateful that finally, for the moment at least, Fibromyalgia is no longer the “invisible illness”.
(Read more about my personal Fibromyalgia story here.)
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