Road to Fibromyalgia- Hell on Earth pt. 2

What does fibromyalgia pain feel like?

20th September 2016.

Please note:

(I am not a doctor or a specialist in any medical field. This article is a personal account of the 6 years and counting I’ve experienced dealing with the sudden onset of fibromyalgia symptoms.)


The pain related to fibromyalgia is absolutely relentless. I wouldn’t wish it upon my worst enemy. Despite the ideal that it is an overactive response to pain, the pain is absolutely real. There is a misconception that such pain is “all in our heads,” which could not be further from the truth. You see, I don’t look sick, so people can assume I’m a hypochondriac.

My muscles feel extremely tight all the time. The tightness is all over the body but most notably in my arms, shoulders and neck. I usually know when the symptoms are going to flare up as I will start to feel a tightness around my head, like someone is pressing hard with their hands around my forehead. My head will also start to feel really hot and then the fatigue kicks in.

The tendons feel tight, as if they could easily snap and always feel on the verge of injury. Such is the case, as I have had repetitive strain injuries to both elbows, both feet, wrists and both shoulders since the onset of symptoms. I try to stretch often but it doesn’t help the situation in the slightest and it really hurts to try. The joints ache, grind and pop all the time.

Sometimes I don’t have have control over my movements, with small switching occurring in my muscles causing certain limbs to very slightly move on their own. I get sharp, shooting nerve pain that can be quite shocking and if I get a small bump or scratch it tends to hurt a lot more than it normally would. This is the suspected overactive response to pain that is often spoken about by those who study fibromyalgia. I first noticed this happening when Keely would sit on my lap and it really hurt more than it used to, like she had put on 20kg when in fact she had lost weight. I am heavily tattooed and can only get more tattoos when the symptoms are in remission, otherwise the pain can be excruciatingly intolerable.

I often do not realize that my muscles are so tense that my wrists are curled over and my jaw is clenched, I have to literally concentrate to stop myself from doing it. There is no “relaxing” when it comes to fibro, no matter how long you spend in bed. In fact, it is very difficult to sleep because I can’t lie on my side for very long because it hurts the muscles on the side of which I am lying. When i roll over in my sleep I have taught myself to throw my body weight over because it hurts too much to roll on my shoulders. As a result, I have to sleep on my back most of the time because it is less painful.

I have headaches almost on a daily basis, most of the time if I don’t take pain killers they will get worse and won’t subside. When I do take pain killers the headaches come back again when they wear off. They usually occur more often straight after exercising. Sometimes it even hurts to move my eyes. I take pain killers almost everyday which is a huge concern for me, it’s why the ketamine infusion treatment has been suggested by the specialist as the pain relief is meant to last 6–12 months if not forever.

A lot of the time the “pain all over” is similar to when you get the flu, but then other times the pain moves around the body, or hurts with movement, and sometimes it feels like I have injuries everywhere. The pain is much worse when resting, so I try to keep moving when the fatigue isn’t so bad. I often relate the pain to inflammation and describe it as “my blood feels like acid,” which isn’t an exaggeration.

There is a misconception with “tender points.” These are described as being in particular areas, such as neck, shoulders, elbows, shoulder blades, waist, knees, wrists and feet. This is definitely true, but the typical diagnosis is for doctors to press on these areas to see if they are painful. I can tell you right now that you don’t need to press on these areas as they are already painful. Sometimes they aren’t painful at all and sometimes only some of them are. But most likely we are already in a great deal of discomfort before there is even any “pressing” going on. For me, these tender points are accompanied by large muscle knots.

Physically I can still work, I can still work out and exercise when the pain and fatigue is at a tolerable level. Like I said, once I start moving I tend to warm up and the pain can be somewhat tolerated.

I hope this helps explain the type of pain that fibromyalgia sufferers may feel. I can’t speak for everyone because everyone is different, but as you can tell, it’s a lot more complicated than just “feeling sore.” It’s extremely taxing, difficult to deal with and a daily battle. It’s all the more frustrating when you’re still able to function like everyone else (to an extent), you just have limits to how much and when. The worst part is that pain is just one of the many symptoms.

In my next article I will discuss the fatigue and how it affects my daily life.

(If you think you may suffer from fibromyalgia consult your doctor).

About the Author:

Rob. C. Taylor

I’m a film director, editor and visual effects artist living in Melbourne, Australia. I have a degree in film production and you can view my work at www.phanterrorvideo.com

Follow me on Twitter: @rob_c_taylor

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