What does Fibromyalgia feel like?

I was recently diagnosed with Fibromyalgia (FM) after a year of pain and negative tests for everything else from arthritis, to lupus, to multiple sclerosis.

The other day one of my coworkers asked what the pain of FM feels like.  

First, I’ve learned that everyone’s experience of FM is different so my answer is not THE ANSWER to the question conclusively, since it’s a syndrome. It’s sometimes called FMS for Fibromyalgia Syndrome. But for me, this is what I feel.

I have a constant dull headache, which sometimes worsens to the point I had five severe migraines in five days. Before FM, I rarely had headaches. Now they are my daily companion.

My back is always sore, usually an achy feeling, which moves all over my back, but is worst between my shoulder blades. Although massage or heat help somewhat, as did physio, acupuncture, chiropractic care, mostly nothing helps my backache as it’s not caused by any injury.

My muscles are stiff and tight, especially around my upper back, neck and shoulders. I take magnesium and muscle relaxants and though they help somewhat, but the muscle stiffness never completely goes away. Heat eases it somewhat.

I have stabbing pains in the front of my thighs. This is the most acute pain I experience. It happens suddenly and the pain is so intense it brings tears to my eyes (and I don’t cry). It will pass within a minute so I don’t take anything for it. When it happens I don’t touch my leg. I just wait for it to pass. The first few times it happened, before I knew it was related to FM, which I didn’t know I had, I feared the worst. But the fact that it moved around from thigh to thigh and in different areas of the thigh confused me. I knew it couldn’t be a tumour since it wasn’t localized to one area. It was a mystery, until now.

I clench my jaw in my sleep and grind my teeth. I used to sleep with my mouth open, but now my jaw is clamped shut. X-rays show wear and tear on my TMJ or tempero-mandibular joint, which is right at the base of the ear where your jaw opens. I’ve heard many people with FM also have problems with their TMJ. I now sleep with a mouth guard on my teeth, and it prevents problems.  As well I have toothaches and headaches. Jaw clenching, teeth grinding and TMJ problems are common.

My joints are stiff and movement is very slow. I feel like a sloth sometimes. I also used to sleep mostly on my left side. Now I have to sleep on my back as both hips are very tender. I will wake up sometimes and my whole pelvis, knees, ankles and shoulder joints feel like they are on fire. Burning pain is I think the worst type of pain I experience with FM, although the stabbing pains are a close second. The stabbing pains are of shorter duration. The burning pains in my bones and joints are so deep and almost throbbing in their intensity, as if the flame gets turned up or down. I take so long to turn over in bed, even a quarter turn, say from back to side, and I almost don’t want to move because it hurts even more, so I’ll often sleep for hours in the same position, which makes problems of its own. Or I’ll wake up every time I change positon, then I can’t get back to sleep, or I’ll reach over for a pain killer like Tylenol or Advil, so I can try to get back to sleep once the pain subsides.

Sleep disturbances are common as a result and people with FM have trouble getting to the deepest level of sleep. Sleep deprivation then has its own problems and it becomes a vicious cycle, with lowered pain tolerance, irritability and headaches. People with FM often wake not feeling refreshed, and instead feeling like they’ve been run over by a truck.

I also developed anemia, which then made my fatigue, headaches and shortness of breath worse. I also had mononucleosis which made my fatigue more extreme.

I was also recovering from surgery and my pain threshold was lowered. My hormonal imbalance also caused hot flashes which were severe enough to interrupt my sleep, which only added to my extreme exhaustion.

I also had problems with my balance. I almost fell several times. I always use a handrail when I take the stairs. I had also developed a limp, the cause of which was never determined.

I had heart palpitations and could hear my pulse in my ears, especially when I’d be trying to sleep. No cause was found for this either.

I also had chest and left shoulder pain, which was investigated and ruled as non-cardiac pain.

I had abdominal pains, some of which were attributed to gastritis from Naprosyn. I stopped it, of course. An abdominal ultrasound was normal, but the abdominal pain continued.

I experienced weight gain, both from some of my medications and from my decreased activity due to the pain and fatigue.

I experienced mental fogginess (sometimes called Fibro-fog). This was a problem at work (I’m an oncology nurse). I seemed to take longer to do my job and never felt like I finished on time and feared I’d make mistakes or forget something important. I dreaded going to work and just getting through each shift was a chore.

I also developed anxiety. This was new for me and very distressing. Apparently anxiety and/or depression and stress intolerance can occur with FM. I didn’t have depression but I did feel discouraged through my two years of testing without any diagnosis. I knew something was wrong, but every test was inconclusive or negative. In a strange way, I’m happy to at least have a diagnosis so I know what I’m dealing with and can try to find some treatment.

It’s hard having an illness that is so little known or understood. It’s also hard having an illness that can’t be seen. I may look well, but I’m not.

The problem with FM stems from the body’s inability to process pain signals properly. It’s not a fatal illness, and it’s not progressive (meaning it won’t worsen over time) and will not cause lasting damage to any organs. That’s the good news.

The bad news is that every case is different, it takes a long time to diagnose, mostly by ruling out other causes and the presence of pain for at least three months. It often develops after accident, illness or injury. In my case, it started a year ago after I had infectious mononucleosis. It’s still poorly understood by the medical community, difficult to treat and there’s no ‘cure’.

For one glorious month this year, I had no pain. I was on Baclofen (a muscle relaxant) and Naprosyn (an NSAID). I could work freely and didn’t feel like I was missing something. I had energy for projects at home and cleaned out cupboards and painted furniture. I couldn’t have done that before. I was so happy to be pain free. My husband came home and asked his usual, “How’s your pain?” I said, “What pain?” He was shocked.  Then the medication suddenly stopped working and the pain returned worse than before. I was so upset and frustrated. If I would have known I’d only have a month, I’d have done more.

 I felt I was falling apart and no one could tell me what was wrong with me.

My doctor told me it was possible for the medication to stop working. I also stopped the Naprosyn which caused the gastritis (inflammation of the stomach). She switched me to new medication, which took a while to find the right dose. They also caused some dizziness and not quite as good pain control.

I am trying to learn all I can about this illness and what I can do to help myself. I bought a book by Dr. Alison Bested called Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia. I also joined a facebook page support group for Fibromyalgia sufferers called Fibro 360 Community | Fibromyalgia and Fatigue Centers.  All these things help to validate that I do have a real illness with real symptoms. The problem often with FM is that you begin to feel it’s all in your head.

To ask, “Where does it hurt?” is harder to answer than, “Where doesn’t it hurt?” I hurt all over.

There’s the short answer to how it feels to live with Fibromyalgia.