How is Fibromyalgia so painful and what does the pain feel like?

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I’m often asked if Fibromyalgia is as painful as people say, and if so what does that pain feel like? It’s not an easy question to answer because Fibromyalgia and the resulting pain are complicated. However:

Yes, Fibromyalgia is incredibly painful

It’s not one type of pain, there are multiple ways of feeling that pain.

Muscle pain with Fibromyalgia

This is probably the most familiar kind of Fibromyalgia pain. It’s when your body aches all over, and you couldn’t possibly decide what hurts the worst or the least. It feels like the worst flu you ever had, and it doesn’t go away. You wake up in the morning feeling like someone beat you up the night before, but there’s not a mark on you. It’s a different kind of pain than what happens to muscles if you exercise too much, somehow it feels more piercing, deep into your body, and more all-encompassing. Instead of lasting a few days, it never stops.

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Fibromyalgia is painful because of Hyperalgesia

Increased pain from a stimulus that usually provokes pain

This is when something hurts you more than it should. For example, When somebody pokes me it should be momentarily painful, but the pain from their touch may last me another ten minutes. Or when I run into the corner of the counter (which happens way too often), it should hurt for a few seconds, but I’m hurting for a good thirty minutes. Or when I go on too long of a walk, my muscles should be sore, but I shouldn’t be stuck in bed for a week with unbearable pain.

In one research study,¹ 22 women with fibromyalgia, 24 with CFS/ME, and 21 without had needles inserted into their upper arms. The researchers measured electrical activity as they pressed the patient’s arms with differing amounts of force. Women with Fibromyalgia reacted to even the gentlest of touches, most likely because their nervous symptoms were sending signals to their tissues to remain on high alert.  Interestingly, the CFS/ME patients tested the worst in both pain and fatigue.

Patients with Fibromyalgia react to even the gentlest of touches, most likely because their nervous symptoms are sending signals to their tissues to remain on high alert. Click To Tweet

Central Sensitization/ Allodynia

Pain due to a stimulus that does not usually provoke pain²

One theory is that people with Fibromyalgia are more sensitive to pain and other sensations, such as noise, flashing lights, smells, chaos, etc. With Fibromyalgia our bodies can have a hard time processing things all at once. We’re unable to tune things out and our senses are bombarding our brains with information that they can’t handle.  One study conducted by the University of Michigan found that the pain levels of people with Fibromyalgia were directly linked to their sensory systems. The more sensory symptoms, the higher the pain score, and more capacity is reduced. To learn more about dealing with sensory overload with Fibromyalgia, check out this post,

Fibromyalgia patients are more sensitive to pain, noise, flashing lights, smells, chaos, etc. because their bodies have a hard time processing things all at once. Click To Tweet

Allodynia

With allodynia the slightest touch is painful, and clothing feels like torture. You can even feel the pain as you lay in bed at night because the sheets and the blankets feel like they’re attacking your skin. Even though you know they’re supposed to be soft, they feel like they’re trying to make your pain worse. Similarly, TMJ is another part of central sensitization that can make minor problems feel like torture.

There’s no permanent escape from this pain. There are a few medications out there for Fibromyalgia, but many aren’t especially effective for pain (and you’ll never get access to opioids, which actually do work for many). Cannabis helps some people, but until it’s federally legal, it doesn’t count as an option in the U.S.

Abdominal and Pelvic Pain

Abdominal and pelvic pain also belong under central sensitization. Some studies found a relationship between fibromyalgia and other chronic pain conditions listed below.

Chronic pelvic pain: vulvodynia

What is vulvodynia? It’s chronic pain most often located in the vulva, though some women may experience pain in multiple areas. The pain lasts longer than three months and isn’t caused by skin disorders or infection.

Irritable Bowel Syndrome

Another often overlooked side effect of FIbromyalgia is abdominal pain. Almost half of Fibromyalgia patients (48%) live with IBS (irritable bowel syndrome), yet many of us found out that information with no doctor guidance, and gastroenterologists are rarely involved in Fibromyalgia treatment. In theory, Fibromyalgia patients’ IBS could be related to “pain sensitivity” and autonomic nervous system dysregulation, and immune dysfunction, but this hasn’t been studied in-depth yet. Other theories stem from good ol’ “psychological and emotional stress” often thrown at women with Fibromyalgia.³

48% of Fibromyalgia patients live with IBS (irritable bowel syndrome), yet gastroenterologists are rarely involved in Fibromyalgia treatment. Click To Tweet

Interstitial Cystitis

Other overlooked symptoms that pertain to only women are pelvic pain and/or Interstitial Cystitis. IC is a beast I deal with, and it can ruin your life. Imagine having a permanent bladder infection and not being able to do anything about it. The constant pain and urge to pee feel like torture because there is no mechanism for pain relief. I lived through many miserable years before I found a way to control it. For me, that means no soda, lots of water, and keeping my stress level down. However, every time I huge stressful event occurs in my life, it will flare-up. Hurricane Harvey a few years ago was a traumatic long-term stress event, and I was miserable for months. Needless to say, doctors have not been helpful when it comes to IC.

The list of possible comorbidities with Fibromyalgia seems endless. The types of pain that people with chronic pain can feel also seem neverending, and I didn’t even cover all of them in this post. No wonder so many Fibromyalgia patients are physically miserable. Though research about Fibromyalgia is becoming more common, it’s clear that we are a long way from understanding and treating it.

Fibromyalgia is extremely painful because there are so many different types of pain that are possible.

  1. Klaver-Krol EG, Hermens HJ, Vermeulen RC, et al. Chronic fatigue syndrome: Abnormally fast muscle fiber conduction in the membranes of motor units at low static force load. Clin Neurophysiol. 2021; 132 (4): 967-974. doi: 10.1016 / j.clinph.2020.11.043
  2. https://www.thelancet.com/journals/laneur/article/PIIS1474-4422%2814%2970102-4/fulltext#:~:text=Allodynia%20(pain%20due%20to%20a,in%20patients%20with%20neuropathic%20pain.
  3. Kim YS. Why should gastroenterologists know about fibromyalgia? Common pathogenesis and clinical implications. J Neurogastroenterol Motil. 2011; 17 (1): 1-3. doi: 10.5056 / jnm.2011.17.1.1
  4. https://vitality101.com/newsletters/2015-11-04
  5. Wong F, Rodrigues A, Schmidt S, Vierck CJ, Mauderli AP. Extreme thermal sensitivity and pain-induced sensitization in a fibromyalgia patient. Pain Res Treat. 2010;2010:912513. doi:10.1155/2010/912513



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