Category: fibromyalgia

Treatment & Rehabilitation

March 23, 2020

In English, the term “rehabilitation” sounds harsh – like a 12-step program to quit drinking – but it is the most correct term for what I’ve been doing for the past three weeks: I’ve been at a facility called Vikersund Bad & Rehabilitering (pictured above). It is a treatment and rehabilitation facility for a myriad of conditions, including those causing chronic pain and fatigue. I was there for my Fibromyalgia.

For the past three weeks, I’ve done mostly two things: I’ve had a lot of theory – essentially lectures – about varying topics regarding living with a chronic condition, such as stress management, sleep management, communication and boundaries, what is chronic pain, and so on. And I’ve done activities – from fairly intense workouts (HIIT-45) to walks around the area, to – wait for it – video games. Yes. Video games. Even a Virtual Reality one. It was fun! Got HELLA dizzy – but it was fun. The facility (also) caters to older patients, and patients recovering from stroke, so some of the activities are low intensity, which honestly suited me perfectly… I’ve also had a lot of talks with my designated physiotherapist and social worker / contact person to figure out the way forward.

To a chronic pain Spoonie, the whole shabang can be quite grueling, since you are meant to push yourself a little physically. For an introvert, it can seem overwhelming, since you’re around (a lot of) people all day every day. But – the major selling-point for a facility like this is the staff; how they customize everything to fit you – the patient. This means that if you for whatever reason are unable or unsure of a certain activity, you can either drop it – or have your physiotherapist along with you for support.

I mention that last part because the text-book “solution” to anything Fibromyalgia is warmth – either by doing exercises in a warm-water pool (which they have at the facility) or by the person preferring warmer climates to alleviate the chronic pain. Guess who reacts badly to both cold and warm? Me. My Fibromyalgia flares up in both winter (which is common) and summer (…apparently less common). Although the flare-ups are slightly different depending on the time of year, they still result in pain in some way, shape or form. This meant that anything in the warm-water pool was either out of the question, or I could only attempt it (to see if it had any effect at all) with my physiotherapist present. Sadly, though, circumstances lead to me never venturing into the pool at all. This also meant that my physiotherapist had to get creative, hence me waving my hands around one morning while wearing a set of VR-goggles, playing virtual 360-degree Squash. (She was honestly just happy with me upping my daily average steps-count, and at the brink of literal tears when showed just how much that daily average had increased.)

Even with the recent outbreak of the novel Coronavirus (COVID-19) and subsequent stricter regulations in the dining hall and elsewhere on the facility grounds, I am seriously impressed by the staff and what they accomplished amidst it all. They still provided 4 nutritious and tasty meals every day, and still managed to uphold any and all dietary restrictions any patient might have. Some staff had to be quarantined, and a lot of uncertainty pertaining to the daily grind could be felt, but nonetheless – they kept going.

Essentially, I used both my brain and body more these past few weeks more than I have in years. At the time of writing this, I have been at home for about 3 days, and I’m still exhausted and recovering from the delayed onset muscle soreness and fatigue. I’ve learned quite a bit, and I’ve made a plan of sorts for how to cope with everything in the future.

My takeaway from it all is this: I do a lot of things “right” when it comes to dealing with my brain and body sometimes not cooperating. I know a lot of the theory behind the practices already, and I know what I am supposed to do. I may have pushed myself a tiny bit too hard, though, and I’m suffering the consequences now – but I did not collapse completely, which is something.

I spent three weeks living in a sort of weird Spoonie-bubble, and now I’m readjusting to a new weird normal where everyone around me is terrified of this new virus and doing all the things I already do on the daily. Which is kind of amusing, in a way: Now – suddenly – everyone knows what it’s like to be susceptible to illnesses (from being immunocompromised) and taking the necessary precautions accordingly.

May 12th – Fibromyalgia Awareness Day

May 12, 2019
Purple Awareness ribbon that says “Fibromyalgia”

Today – May 12th – is the International Fibromyalgia & ME Awareness Day. In light of that, I thought it fitting to write a post about Fibromyalgia, as it is a chronic illness I live with.

Fibromyalgia (or fibro for short) is a medical condition characterized by chronic widespread pain and an heightened pain response to pressure. In layman’s terms, this means that people with fibro experience persistent moderate to severe pain 24/7 in all four quadrants of the body, and if someone were to put pressure on any part of their body, they would experience more pain than the norm. Another common trait of the illness is that symptoms get worse with shifts in weather, much like arthritis.

It is a complex chronic illness, in that it is diagnosed by exclusion: When no other cause for the potential 200+ (as reported by patients with the illness) symptoms is to be found, the likely diagnosis is Fibromyalgia. There is no definitive test that can be done to check if you have it (as of yet), and there is no cure – only management of symptoms. The cause of it is unknown, but it is believed to be partially genetic and partially environmental factors that trigger it.

Widespread chronic (meaning present for most of the day, every day, for 3 months or more) pain is the most common symptom. Other major symptoms include chronic fatigue, disturbed / poor sleep, heightened pain response to tactile pressure, digestive problems, periods of cognitive dysfunction – often called fibro-fog or brain-fog – and several other reported symptoms associated with the illness. For many, anxiety and depression also occur as a symptom or co-morbid condition.

Living with Fibromyalgia is exhausting, painful and stressful. Managing it is a matter of dealing with the pain, light exercise to prevent muscle atrophy, maintaining a healthy diet, and regulating sleep to help prevent flare-ups of symptoms. Everyone with the condition is different, and require specialized treatment / management plans for their specific set of symptoms and flare-triggers, though. Finding what works, and at what intensity (as with exercise, for example), is a lengthy process.

Most of us living with Fibromyalgia are experts in hiding our symptoms. It’s called an invisible illness for that very reason. Just by looking at me, you most likely can’t tell that I’m in so much pain just from standing up for more than a few minutes that I could pass out. I look normal, I look fine.

This is why Awareness Days are important, in my opinion, especially for invisible illnesses, as they are largely overlooked – including by health professionals. Getting adequate treatment for such is a never-ending battle where the person has to “prove” time and time again that they are in fact chronically ill, in spite of looking “fine”.