Understanding the Link: Fibromyalgia & Autism Spectrum Disorders
Are you trying to understand whether there's a relationship between fibromyalgia and autism?
Navigating the latest research can be confusing and often overwhelming. In this article, we will explore what fibromyalgia and autism are, whether there's a link between each condition and hypermobility and how closely linked these two conditions are. We will also explore the range of chronic conditions that may be associated with autism and offer strategies to managing fibromyalgia and autism.
What is autism spectrum disorder?
Autism spectrum disorder (ASD), or simply autism, is like a world of different experiences and challenges that can impact the way you communicate and interact with others. Picture yourself in a video game where the rules aren't clear to you, but they are to everyone else – that's a bit like what living with autism can feel like. You might find it tricky to pick up on social hints, such as sarcasm or jokes, right away.
If you have autism, you may have one or more special interests that you're very passionate about and spend a lot of time exploring. The term "spectrum" is used because autism shows up differently in each person – some people may need just a little help while others might need more support with daily tasks. And just like everyone else, people with autism have unique strengths and abilities.
What is fibromyalgia?
Fibromyalgia is a medical condition that is characterized by chronic widespread pain. This pain often affects the muscles and other soft tissues for months or more and isn't localized to one place; it can be on both sides of the body, both above and below your waist.
The pain in fibromyalgia is accompanied by a host of other symptoms, such as fatigue, trouble sleeping, struggles with memory and concentrate, and mood challenges such as feeling down or anxious.
Central sensitivity syndrome
Central sensitivity syndromes (CSS) are conditions such as fibromyalgia, irritable bowel syndrome, and chronic headaches that usually cause chronic pain. They all involve central sensitization. This is when the central nervous system, made up of the brain and spinal cord, becomes more sensitive and starts to amplify normal signals, such as touch, and pain is the result.
Imagine turning up the volume on your stereo – suddenly, even quiet sounds are loud. That's similar to what happens with pain in your body when you have central sensitization.
Sometimes, this condition can start after an injury or an extremely stressful event, but other times, it might develop without any clear reason. Scientists think it's because of changes in how your brain deals with pain and other feelings.
Is fibromyalgia associated with autism?
When we look at autism spectrum disorder and fibromyalgia, it's like finding pieces from two different puzzles that fit together. There's a significant overlap between the two.
People with ASD, especially women, often have a central sensitivity syndrome. In one study, 21% of adults with autism also had a diagnosed CSS10, while another study found that 40.6% of people with strong autistic traits also had fibromyalgia3.
In addition to CSS, the hypothalamus – part of the brain that helps regulate pain and other functions – and the autonomic nervous system – which controls our heart rate, blood pressure, digestion and so on – might be involved in both conditions. Malfunction of the autonomic nervous system is known as dysautonomia or autonomic dysfunction.
How sensory stimuli are affected by fibromyalgia & autism
Chronic pain is common in both ASD and fibromyalgia, as is increased sensitivity to stimuli such as light, sound, and touch, and both can be caused by central sensitization.
People with ASD often feel the world in a different way and feel like their senses are dialed up, so a light touch can feel strong, sounds can be very loud, and lights can seem far too bright. The way your body responds to sensations in fibromyalgia might be similar to how people with ASD hear and feel things. Our neural networks, the way our nerves rely information to our brains and how our brains listen, are complicated.
How fibromyalgia & autism affect the gut
Both conditions might be affected by an imbalance in the gut microbiome4.
The more we learn about our gut microbiome, the more we discover about how it affects all aspects of our lives. Along with the more obvious digestive conditions, such as stomach pain and irritable bowel syndrome (IBS), the link between the gut and the brain might also plays a role in other central sensitivity syndromes, our energy levels and even our mood. It's something scientists are still trying to figure out.
Is there a link between hypermobility & autism?
Have you ever seen someone bend their fingers way back, or twist their arms in odd ways without it seeming to hurt? That's known as hypermobility, meaning their joints are extra flexible.
Many people with autism also have very flexible joints. One study suggested that up to 80% of people with autism might also be hypermobile1.
Some experts believe that in people with autism, collagen (a protein in the body) might be made or used in a unique way, making their tissues and joints easier to stretch and bend2.
Is there a link between hypermobility & fibromyalgia?
There appears to be a connection, indeed. Research has found that individuals with hypermobility, especially those diagnosed with hypermobility spectrum disorder (HSD), have a higher chance of developing fibromyalgia than the average person5.
It's common to see fibromyalgia and joint hypermobility occur together, particularly in younger women. They may also experience symptoms such as autonomic dysfunction.
But there's more to it than just pain. If you have hypermobility, you might also feel tired or have stomach problems, which are symptoms fibromyalgia can cause too. These shared experiences suggest a complex relationship between muscle and joint issues, chronic pain, and other whole-body symptoms that can affect your daily life and wellbeing.
However, it's important to be careful when considering this link. Just because there's a connection between hypermobility and fibromyalgia, it doesn't mean everyone with hypermobility will get fibromyalgia, or that all people with fibromyalgia have hypermobility. So, while there is a relationship, it doesn't apply to everyone.
Is fibromyalgia a form of neurodivergence?
People who live with fibromyalgia are more likely to have a neurodivergent condition6, although fibromyalgia itself isn't considered a form of neurodivergence. That said, fibromyalgia might be connected to how your brain works, just like other conditions that affect learning and attention, such as autism, ADHD, and dyslexia.
Research in this area is ongoing and as we learn more, we may discover clearer links that help us to understand the brain processes in fibromyalgia and other conditions such as autism, ADHD, and dyslexia.
Assessing autistic traits & chronic pain
In medicine, lots of conditions and medical tests are acronyms or confusing names. Fibromyalgia – sometimes referred to as FM or FMS (fibromyalgia syndrome) – and ASD are no different!
To test for autism, a doctor might use diagnostic quizzes such as the Q-CHAT for children and the RAADS-R for grown-ups. And for fibromyalgia, there are questionnaires including the FSQ and the FIQ that ask about your pain and other symptoms. These tools help medical professional to understand your unique situation so that they can get the right diagnosis and best treatment plan for you.
Diagnostic tools for autism
Getting an autism diagnosis is an intricate process, involving a detailed examination of your social interactions, communication styles, and behavioral tendencies.
The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R), serves to recognize autistic adults who may have slipped through the diagnostic net in their younger years. High scores on the RAADS-R, especially scoring over 65, indicates behavior patterns and symptoms that align with autism spectrum disorder7.
This particular tool comprises 80 items spread across different subscales targeting specific areas:
- verbal communication
- ability to relate socially
- sensory-motor function
- focused interests.
If you think you might be on the spectrum, self-diagnosing is not recommended, so chat with your healthcare professional.
Fibromyalgia assessment
Diagnosing fibromyalgia largely relies on patient-reported symptoms, including pain and other symptoms, such as fatigue or sleep disturbances. For a fibromyalgia diagnosis, the person must have experienced widespread pain for at least three months, and other potential causes for the pain must be ruled out.
Previously, the diagnosis process involved checking specific tender points on the body. In 2010, the American College of Rheumatology introduced the widespread pain index and the symptom severity scale to quantify a person's pain and its impact on their daily life. However, the current guidelines from the American College of Rheumatology consider a wider array of fibromyalgia symptoms, capturing the full spectrum of patient experiences. These symptoms can include widespread pain, fatigue, gastrointestinal issues, mood swings, cognitive difficulties known as "fibro fog," and a plethora of other fibromyalgia-related symptoms that individuals may encounter.
Implications for diagnosis & treatment
The complex relationship between fibromyalgia and autism impacts diagnosis and treatment. If you display signs of both conditions, doctors need to be very careful to get the diagnosis right. It's even more important for girls and women with autism, as their symptoms can be different. By understanding these conditions well, doctors can create treatment plans that are just right for you.
Misdiagnosis & comorbidity
It's really important to get the right diagnosis when someone has symptoms that are common in both autism spectrum disorder and fibromyalgia. Doctors need to be very careful, especially since many people with chronic musculoskeletal pain might also show signs of autism.
If you're transgender or non-binary, there's a higher chance of getting an incorrect diagnosis because these groups often have more cases of fibromyalgia, autism traits, and flexible joints8. It's also tricky to tell the difference between these conditions and something called borderline personality disorder. That's why it's key for doctors to look at every detail so they can give you the right diagnosis and help you in the best way possible.
If you feel like you've been given a misdiagnosis, feel uncomfortable in appointments, or you are not happy with your doctor for another reason, it's okay to seek a second opinion. Everyone deserves respectful healthcare, and learning to advocate for yourself is an important skill.
What other chronic health conditions are associated with autism?
Autistic individuals often experience a spectrum of other chronic health issues9, such as:
- gastrointestinal disturbances
- seizures associated with epilepsy
- sleep disruptions
- attention deficit hyperactivity disorder (ADHD)
- heightened anxiety.
People with autism may also experience chronic pain stemming from several conditions such as:
- Coeliac disease
- gallbladder disease
- endometriosis
- syncope
- vertigo
- urinary incontinence
- eczema
- iron deficiency anemia.
Understanding the variety of health issues that can occur alongside autism is crucial for providing comprehensive care. Recognizing these related conditions early can lead to better health results for you.
Treating autism & fibromyalgia
When it comes to tackling the challenges of both autism and fibromyalgia that you might be facing, it's important to understand that everyone is different. A treatment that works for one person might not work for you. You need a plan that's just for you, with treatments that are chosen to meet your unique needs. This plan will likely include a mix of medicines and other approaches that don't involve drugs to help manage the wide range of symptoms you might be experiencing.
Medication
Medication is a key element in a broader strategy for managing pain. It's important to use it along with other methods that support your overall well-being, including education, healthy lifestyle choices, and psychological support.
Here are some types of medications that might be suggested for you:
- over-the-counter pain relievers such as aspirin and ibuprofen
- antidepressants, like amitriptyline and duloxetine, which can help reduce pain and improve your mood
- pain and inflammation modulators, for instance, Low Dose Naltrexone (LDN)
- medicines initially made for epilepsy, such as pregabalin and gabapentin, which help calm down a nervous system that's too active.
It's very important to talk with your healthcare provider to choose the right medication for your specific health situation.
Retraining your pain
It's important to understand that pain isn't just about the physical sensation. It also involves your emotions and how you connect with people. Recognizing what triggers your pain, such as stress, certain thoughts, or your lifestyle, is a crucial step towards managing it. By identifying these triggers, you can start to make changes. Improving your diet, getting more sleep, exercising, and learning new ways to think about pain can all help train your brain to handle pain differently.
Stress management
Stress, you know, is a part of life, but for you, it can make things feel tougher. It can make your senses even sharper, so noises or lights might bother you more. But don't worry, there are ways to get better at handling stress.
You can try things like cognitive behavioral therapy (CBT), mindfulness, or relaxation techniques. These can help your body not react so strongly to stress.
CBT can be helpful to learn about how autism changes the way you feel stress. It also teaches you skills to cope with stress better. Then, you get to practice these skills in real life, which can help you manage when things get tough.
It's also good to have people around who get what you're going through. Friends, therapists, or groups that understand can be a big help when you're feeling stressed out.
Exercise
By adding exercise, such as like walking or swimming and lifting small weights, you can really help ease your fibromyalgia pain. It's not just about making your muscles stronger. It also helps you feel better inside, lifting your mood when you're feeling low. When you mix different kinds of exercise, it's good for your body and mind, making you feel more able to do things and less sad.
More information
At MoreGoodDays®, we have developed a thoughtful approach to assist you in managing fibromyalgia. We understand that this condition can significantly impact your daily life, altering the way you feel and function. To support you, we provide educational resources that simplify the complexities of fibromyalgia and offer practical strategies to alleviate pain and fatigue.
Our commitment is to guide you toward a more comfortable and joyful life, even when faced with the challenges that fibromyalgia presents.
Download our mobile app for free from the Apple App Store or Google Play Store for immediate access to some of our content and to see your support options.
