I’m standing on my soapbox today, so bear with me.
As early as 2008, studies began to show that Fibromyalgia was an illness with ties to “extra” nerve endings and neurogenic inflammation, though the primary culprit is considered to be “altered signaling in the brain and spinal cord.” These are physical and chemical issues within the body which generate widespread pain, tenderness in specific locations, and a host of additional symptoms. The pain of Fibromyalgia can occur in any body site (face, low back, neck, upper limb, thorax, abdominal, pelvis, urogenital region), or in a combination of body sites (widespread pain).
The following symptoms may also occur with fibromyalgia: Digestive problems, including irritable bowel syndrome with gas, and alternating diarrhea and constipation, dizziness, dry mouth, painful menstrual periods, problems with balance, tension or migraine headaches, tingling or numbness in the hands and feet, and even urinary frequency caused by bladder spasms. Fibromyalgia is also often associated with sleep disturbance, and comorbidities (such as depression, anxiety, anger, guilt, fear, and a range of chronic medical conditions).
It’s important to note that Fibromyalgia has symptoms that resemble those of some rheumatic illnesses, including rheumatoid arthritis and lupus (systemic lupus erythematosus).
I’ve got a lot to say about my experiences with Fibromyalgia and the other chronic medical conditions I suffer from, but today I want to focus on treatment options for Fibro. I’m given no treatment, as I refused to attend cognitive behavior therapy and the doctor at the Mayo Clinic, where I was diagnosed, doesn’t believe in treating Fibromyalgia with medication. He’s not alone.
The science journal Annals of the Rheumatic Diseases recently updated an article they published in July of 2016 which focuses on the management of Fibromyalgia. This article is interesting because it consists of 19 doctors from 12 countries combing through 2,979 studies to determine the absolute best treatment options for those who are suffering from this debilitating disorder.
Their conclusion? The only treatment they STRONGLY RECOMMEND is exercise. They decided that management for these patients, who are suffering the same as patients with similar chronic ailments, should only involve patient education and a focus on non-pharmacological therapies, mainly exercise.
Now I know and you know that exercise is a wonderful tool for regaining our health, but there’s a problem here. A big one.
Researchers from the Oregon Health & Science University recently published their own study. It concluded that four in five people with fibromyalgia do no aerobic exercise. They were started to find so many of them refusing to participate in even low-level activity, so they questioned the patients and asked why they wouldn’t exercise. The responses?
An increase in pain and fatigue was the most common reason given for not exercising.
I am one of those patients. I do exercise when I can; walking has had the least impact on my health but even that can cause major setbacks that leave me in bed for weeks– so why are doctors ignoring this? Why are they refusing to treat patients with Fibromyalgia as if they have a real illness? Let me repeat something I shared earlier:
It’s important to note that Fibromyalgia has symptoms that resemble those of some rheumatic illnesses, including rheumatoid arthritis and lupus.
My youngest son put this is in really easy to understand terms. Its as if there is something jamming the internet at your house, so the techs recommend you upgrade the jamming device.
Can you imagine a patient with RA being told they couldn’t have relief from their pain and that they should just take up Yoga?*
This is shameful.
For those interested in reading the article, here’s the full citation:
Macfarlane GJ, Kronisch C, Dean LE, et al EULAR revised recommendations for the management of fibromyalgia Annals of the Rheumatic Diseases 2017;76:318-328.
* Not that those patients don’t get their own helping of garbage from doctors, from the ridiculous run around trying to get a diagnosis to the constant fight for proper medical care. Not trying to diminish any other chronic illness; ijs.
Update: For a continuation of this rant, read this.