Tag: Fibromyalgia

July 17, 2025 / Elise Carlson / 0 Comments

My most delayed thing after long covid in 2022 was planning to travel. Navigating with autism and ADHD alone can be overstimulating, tiring and frustrating. But with a Fibro diagnosis, I now have to plan not only for autistic sensory needs and ADHD challenges, but for low physical energy, high risk of chronic fatigue and pain. So whether you’re travelling as or with an autistic person, ADHD person, or someone prone to fatigue and pain, I’ll attempt to unpack the factors I think you need to consider to minimise stress, fatigue and pain and to maximise comfort on your trip.

Sensory Challenges

Road Works, Construction & Obstructions

As navigator and driver, for me navigating unknown roads with roadworks is like navigating with one eye blindfolded and someone poking me repeatedly in the arm. My brain processes a row of cones, construction workers in their fluro clothes, trucks and other equipment as ‘big mass of stuff.’ I don’t want to look at ‘big mass of stuff’ because its overstimulating. So if the entrance to the venue, or my turn is next to or beside, behind or otherwise close to ‘big mass of stuff’… I struggle to process said venue/ turn’s existence.

I will miss the turn, because I’m so busy juggling not being overstimulated with not crashing into traffic moving at a different speed and direction, that I have zero processing power to perceive the second road. I’ll walk right past the entrance because I don’t see an entrance, just ‘shit ton of visual info, brain is jamming, look away!’

Obstruction Management Tip 1: Reduce Stimulation & Pressure

To locate the venue when roadworks, construction sites or other obstructions are present, I suggest navigating as near as you can by car. Then park the car. Now you don’t have to worry about crashing, so you can consult your phone and compare it to reality under less pressure. If you have to turn back into traffic and drive further; that’s fine. Its better than crashing. Its also better than a verbal argument with your navigator because you’re visually overstimulated and stressed.

Obstruction Management Tip 2: Reduce Stimulation & Pressure With Help

If your brain is already jammed with sensory overload, or fogged by covid, fibromyalgia or other condition, and you can’t connect your phone’s navigation directions to geographical reality… ask someone on the street. Or a customer service person in a shop.

Sometimes our brains fail us (I’ve navigated with moderate brain fog, moderate fatigue and severe ADHD and could barely navigate a supermarket, let alone New Zealand.) Don’t be hard on yourself, don’t persevere if your brain will not co-operate or is otherwise being an arse. Just ask someone else when its clear reality, your map and brain are not co-operating. This will save time, frustration and spare you the exhaustion of doing something very draining, because you’re attempting it while cognitively and or physically impaired.

For advice on minimising visual overstimulation at home, see this post.

Do You Have the Right Travel Companion?

To the able bodied, neurotypycal reader, if you’re travelling with someone who struggles with navigation/ overtimulation, and you struggle to be patient with that; I suggest don’t travel together. There are too many factors with the potential to cause tension, stress and frustration on both sides. If you don’t understand and or can’t be patient with the other person’s struggles; you’re likely making a challenging situation worse.

To the neurodivergent/ disabled reader, if you suspect your travel companion(s) do not understand why navigation is so difficult/ frustrating/ stressful for you; can you manage better on your own? I often travel solo, so I KNOW its more work. But depending how much strain travelling with a companion puts on you, is it ultimately less stressful/ less exhausting to travel solo? (You could just meet them at your destination.)

Navigation Communication Challenge: Noise

If you’re travelling with an autistic person, please bear in mind that we can hear you, and the conversation next to and behind us, and birds chirping and traffic and car horns and- If you are travelling with an ADHD person, they may be listening to you, then that song they love pumping out the window of a passing car, or something funny the person behind them said.

Communication Tip: Seek Quiet

For autism, be prepared to step into a quiet laneway, shop or somewhere less noisy, so the autistic person you’re speaking to is processing what you, and no one else is saying. We can’t receive the message ‘lets go into that museum’ when its competing with ‘(insert lyrics),’ ‘Mum I want an icecream!’, ‘Hi Steve!’ Bang, thud thud, DRILLL! from the construction site.

So to give an autistic (or ADHD) person the best chance to hear what you’re saying about where to go next; say it somewhere quiet. Turn off the radio. Ask the back seat passengers to stop speaking when a passenger is giving the driver directions.

Minimising noise makes audio directions or suggestions easier to access and respond to. It also saves you having to repeat yourself umpteen times every time you want to say, ‘I need to go to the toilet first.’

Sensory Overload

City’s are fun. They have buildings from many eras, and people from all over the world moving through their streets. They’re also busy, noisy and jam packed with visual information. I love walking city streets, listening to foreign accents, and taking photos of historic buildings. But as an AuDHD person; I NEED balance in my site seeing. I DO NOT WANT to site see in a busy, crowded, noisy city multiple days in a row. There comes a point where every hour I get tireder, more overloaded and more easily frustrated. Where city site seeing has become a tiring struggle to process ‘big wall of sound and visual info overload’.

Site Seeing V.S. Sensory Need Balance Tip

My favourite way to let my overstimulated brain and tense body relax, is to punctuate loud, crowded city site seeing with quieter, peaceful breaks. For example, spend 30 mins or more wandering a state library. Spend an afternoon at the zoo, or a morning wandering the city’s botanic gardens. I love gardens and animals, and tend to visit at least either in every city. I find it makes for calmer, more relaxed, more enjoyable travel.

View through grubby windscreen of a bend lined with protective metal fence, right pointing arrows, pretty gum trees and green slopes down to pale blue and cloudy horizon.

Avoiding ADHD Time-Fail Tax

Last year I navigated New Zealand’s North Island with moderate brain fog, moderate fatigue and severe (undiagnosed and unmedicated) ADHD. My biggest learning was; do NOT book morning anything unless staying within a 15 minute drive of that activity. I was one hours drive away from one activity, gave myself two hours to get there and still missed it. My ADHD got distracted, and missed a turn. Then I lost track of time, and drove 20 minutes beyond the turn before realising I’d missed it.

ADHD Booking & Time Tips

Use a Physical Calendar, with days of the week and dates labelled to write bookings on manually. (Days and dates DO NOT correlate in my brain and a device offers too many distractions. So I have an A4 weekly calendar notepad and its a huge help to my school holiday and travel planning.)

2. Dates: double check the month, year and 24 hour timing when you book. (Yes, I did drag my family to the air port 12 hours early to see me off the first time I flew to England. Better 12 hours early than 12 hours late!)

3. Timezones: check your device for local time before you plan your next step. Especially before you go buy food at an airport. (Yes, they may refer to flight number but not destination when changing your gate just before boarding. And not page you to the new gate when you don’t board on time).

Tours and Accomodation Tips

Morning Activities: Only book a morning anything, which doesn’t allow for mis-navigating the countryside, if you’re staying a SHORT distance from the morning activity.

Extra Time: If your drive is theoretically 30 minutes, give yourself AT LEAST one hour to get there. (To allow for factors you forgot to consider that could delay you, like traffic, road works, finding a car park etc.)

If there’s one thing you really want to do/ see, plan your trip so if there doesn’t end up being time for it today; you’ve got time tomorrow. Flexibility was essential to my last solo, unmedicated ADHD trip!

Low Spoons Travel (Pain/ Fatigue/ Chronic Illness)

I’ve just come back from a road trip with my mum. I put my back out on day one, just before we got in the car. Constant back pain quickly became fatigue. It mean difficulty getting in and out of the car and difficulty walking. It meant I burnt through energy quickly, and got tired and frustrated swiftly. These latter are things I have to be aware of all the time, because I have fibromyalgia, and that (permanently) predisposes me to brain fog, fatigue and chronic pain.

Low Energy Management; Snacks

Normally we try to cut back on snacks because we’re eating too much period, or too many calories. This DOES NOT apply to me when I travel. On my recent 9 day road trip, I didn’t just need breakfast, lunch and dinner. I either needed a substantial breakfast, lunch, afternoon tea and dinner, or breakfast, morning tea, lunch and dinner. Any one big physical activity, like an hour long walk, needed to be followed by eating and drinking. I might not notice I was hungry, but a meal made me feel better. Food and drink as fuel run out faster for me when I travel.

Low Energy; Pace Yourself

Even when my back recovered on my road trip, I still had to pace myself. If the slope was steep, or there were too many stairs, or I walked for longer than an hour, a flare of burning back pain and or fatigue (due to fibro) were likely. (When I say fatigue, my feet/ legs/ lower back feel A LOT heavier than usual, like I have to peel my feet off the ground and actively fight gravity to take each step).

Low Energy; Rest Breaks

What if I wanted to spend two hours walking around the botanic gardens/ nature trail/ city centre? This happened in Adelaide recently. I was able to walk for several hours; mostly because in the middle we sat at a cafe for a good forty minutes. I sat in a chair with proper back support and sunk into it, letting my body recharge. (And used this as the snack and drink recharge mentioned above). After that sit down; I could keep walking.

Another option when travelling solo for me is that with my seat adjusted to support my back sufficiently, sitting in the car driving helps me physically recharge.

Low Energy; Mobility Aids

The thing about invisible illnesses is you can’t see the bastards. Vision impaired people can get glasses, and hearing impaired people can get hearing aids. But do people with fatigue or chronic pain need mobility aids?

This is a conversation I didn’t have with my doctor, not when diagnosed with long covid, or fibromyalgia. But with back pain from putting my back out, my mother, having her own back issues, knew I wasn’t able to walk. So she did some research, and found that walking polls can provide physical support, while also helping a person build their core body muscles. (This article is aimed at hikers, but consider how more even distribution of your weight and the strain of making it walk can aid low energy movement.)

My mum bought me walking polls in Adelaide, which I used on nature trails. I found them especially helpful to reduce the strain on my body and my proneness to pain and fatigue when walking uphill, and up or downstairs. They were also great for longer walks, where I wanted to go further, but was tired and or fatigued.

So if you’re prone to chronic pain or fatigue, I suggest discussing mobility aids with your GP.

Blue edged, pink, orange and yellow rainbow scroll with text: Get blogs in your inbox & updates from Elise every second month. Join my Fiction Frolics. Select this image to learn more.

Disability Community

It might seem odd starting with community when this post is mainly about developing awareness of your condition and potential issues navigating medical professionals. But when (to everyone else’s knowledge) you’re the only person you know who, in my case has; ADHD, autism, Fibromyalgia and in 2022 Long Covid; community is important.

This is especially true if you weren’t born with a disability. If, like me, you were just living your life, in my case running 4km multiple times a week, then one day you could barely walk, breathe or think (this is me from able-bodied to Long Covid). For chronic illness later in life, and I imagine any disability resulting from an accident or degenerative disease, its a BIG adjustment. And suddenly a major impact on your life falls outside the knowledge and understanding of most people in it (perhaps everyone you know). That’s where community comes in.

Disability Community- Get One

I learnt a lot about Chronic Fatigue limitations and managing my long covid from 2022 Twitter’s Disability community. I’m now learning from, connecting with and enjoying speaking to people on Blue Sky’s ADHD & Autism Feed, Neurodiverse Feed, Chronic Illness and Disability Feeds. These are totally informal round ups of individual people’s posts, which make it easier to share experiences, complain, commiserate, celebrate with and ask questions of people who ‘get it’/ us.

When I first realised I had Long Covid, it felt less scary seeing that others were in the same boat. This was a new illness, the medical profession had only just begun scratching the surface , no one I knew in real life had the faintest clue, but other people were suffering from it. Other people were living with it. Seeing their posts and reading articles encouraged me that we would find our way. (Took me 2.5 years but I got there –cutting back to part time work was the KEY).

Reading ADHD traits in other people’s daily lives was also validating for me as I sought an ADHD diagnosis, and it helps me feel connected now. Meanwhile seeing what other’s say about how autism impacts them and how I do and don’t relate to other people with autism is also helping me develop my self awareness.

For all four all four types of disability I’ve personally experienced, community has helped. I recommend seeking it on your choice of social media by searching relevant hashtags/ keywords. If relevant, you might want to seek out online or local formal support groups as well.

A Good Doctor

I know, they’re so hard to find —especially in rural areas. And if you have multiple disabilities, there’s the issue of finding a doctor who competently and open-mindedly supports you in managing them ALL. And who does so without being skeptical of one’s existence or biased toward misdiagnosing the other one(s).

For fellow spoonies, there’s also the issue of finding the energy to find a good doctor, if yours isn’t fully adequate. And there can be the need for a doctor who understands the links between conditions. For example maybe that woman doesn’t ‘need’ antidepressants and maybe her anxiety isn’t random, maybe she (and the world) need to adjust to her having autism or ADHD, or both? And maybe her back pain isn’t muscular, maybe its stress from the strain of the above?

Sure, this is just my observations as a person with only personal and second-hand knowledge of such things, but the more I learn, the more it seems your mental, emotional and physical health are interrelated. That any one of those three having an issue can stuff up one or both the others. So if you’ve got multiple ongoing disabilities, you NEED that good doctor who gets the BIG PICTURE for all diagnosis and relevant treatment/ management reasons.

My Doctor Wasn’t Good

I thought I had a good doctor. He listened, he was reassuring, he made me feel comfortable about some other issues that could have been quite serious, but turned out not to be. Then I got long covid. He got me to do standard medical tests, like bloods and an ECG to check my heart ect. When standard tests did not indicate standard (pre-covid) medical conditions, he handed me a survey to ‘explore other options’. Said survery basically asked ‘are you depressed’? in ten different ways. No, I wasn’t depressed. But having my GP try to misdiagnose my obviously physiological illness as depression did cause me anxiety about finding treatment for unknown condition.

He Had to Go

At this time I was fatigued, in chronic chest and back pain and brain fogged. I was teaching full time and very low on spoons. But I was lucky. It was 2022. I knew scientists were only just beginning to study, research and learn what the bloody hell long covid is and what it does to the human body. I knew many doctors could still be very ignorant of this.

But I hadn’t expected to come up against prejudice blocking my path to diagnosis. Luckily my doctor let slip enough for me to suspect that he had long covid, and didn’t want to admit it. And that that bias was compromising his judgement in diagnosing me. It was very clear I needed to walk away. Friends and my mother, whom I spoke to when I had the spoons, backed me fully and I felt empowered to seek a new doctor.

My Experience of Medical Prejudices & Biases

Enter doctor two. Consultation one, my most troubling symptom (which she mainly wanted to hear about, as opposed to symptoms which clearly pointed to long covid) was chronic pain. So, despite my insistence that my mental health was good and depression made zero sense, she prescribed me valium. She pretty much tried to convince me it was depression. One’s a coincidence, two’s a pattern.

This is how I learned there are doctors who prefer to diagnose based on the conditions they personally are most familiar with. That some will ignore any symptoms you name that disagree with their diagnosis (I didn’t have the spoons to test it with doctor two, but for doctor one this was certainly the case). This is when I became aware of doctors who misdiagnose physiological illnesses like long covid and Chronic Fatigue Sydrome, as psychological. Maybe because depression is more common, or more in line with their professional experience, personal bias, whatever. It didn’t help me.

How I Found the Right Doctor

As I said, I was low on spoons and not truly quite ready to accept that this time I knew best, and two doctors didn’t. I took the valium, got home, got angry, threw it in the bin and turned to friends and my mother. Comments from my mother like “but you never take pain killers” really helped me see beyond doubt that this was BAD, physiological and I needed a doctor who understood.

Starting to understand I was fatigued and struggling to find good doctors, my mother got me onto Hot Doc. Its an Australian online booking service with filters that let me search for doctors in my city who specialise in chronic illness. I made an appointment. Doctor three let me talk —probably beyond what he needed to hear for diagnosis because he could see I needed to get it off my chest. Then he said, “That sounds like long covid. But you already knew that?”

Yep, got the one!

I was SO relieved to have a doctor who knew what he was dealing with (I was his fourth long covid patient). He could reassure me that having stumbled for four months on my own I was on the right track with fatigue management. He also have advice on balancing that and exercise, and bothered to test my iron and B12 (both were low) and got me on vitamin supplements.

When I recovered from Long Covid and still had pain and fatigue crashes —he knew Fibromyalgia was a possibility. He correctly diagnosed that and prescribed a pain killer that for the most part kep my chronic pain at bay. (This was while teaching full time. I now work part time and no longer need pain medication. I’ve learnt pain is my body saying ‘fucking stop and rest’ and working no more than two consecutive days a week now, I’m nearly pain free).

Patient Awareness

Medical Malpractice that Could Have Impacted Me

Having had two doctors fail me, I realised it was a good idea to do what little reading I could find the spoons for. At the time it seemed Chronic Fatigue Syndrome was as much a possibility as Long Covid. So when I came across articles about doctors whose outdated —not to mention medically discredited— approach to treating CFS causing harm, I read them.

Luckily Twitter (not yet completely destroyed or corrupted by Musk in 2022) still had doctors tweeting good resources. That’s how I learned about PEM (post exhertional maliaise). And some doctors acting on now discredited beliefs telling patients with Chronic Fatigue Syndrome to exercise, which makes CFS symptoms worse and can cause PEM. I also learnt of the myth CFS sufferers can ‘make themselves better by changing their attitudes,’ outlined and linked to Long Covid scepticism in this article.

By the time I saw my third doctor, I was ready to run away from anyone who told me to ‘exercise and work’ my way out of long covid. Ready to defy out-dated medical advice. Luckily, I didn’t need to. (Though interestingly, with Fibromyalgia, balancing my part time work week with exercise is proving my best defence against fatigue and chronic pain. This is perhaps because I was extremely fit before becoming chronically ill in my mid thirties).

Safeguarding Yourself/ Family

I know, the last thing you need when you’re managing one or more disabilities is safeguarding yourself against a medical professional whose judgement could do you harm. In a world free from racism, misogyny, transphobia etc, that would be easier. Its the last thing you need when when you’ve got a condition that really limits you physically and or emotionally/ mentally. I’m thinking particularly of early Long Covid patients told to exercise which further crippled them with PEM here, but in our imperfect world other circumstances may also apply.

But as I discovered with Long Covid, sometimes you’re unlucky and you’ve either got the wrong doctor, or the wrong doctor to help you manage your particular condition(s). So be aware of and on the look out for red flags.

Trust Yourself and Listen to Those You Trust

So should you feel a medical professional isn’t listening, that their advice is not helping, that their judgement is impaired by any form of prejudice; trust yourself. If it helps and is manageable, keep a record of your symptoms. Know how you were before treatment/ medical advice and after. Have it in writing so you can see for yourself whether treatment is making things better or worse, or which compromise is best. Back yourself up with knowledge of your body so you know when to say ‘no.’

Confession: between brain fog and ADHD I was shit at tracking my symptoms with Long Covid and initially just as bad with Fibromyalgia. But with the Fibro, my awareness of my own body, how much physical activity I can undertake, what kind and how often has been the single greatest factor in improving my quality of life. Similarly, awareness of my ADHD, particularly after I started taking meds, has helped me notice when futile to attempt certain tasks. Knowing yourself helps you help you, and helps inform that good doctor, to help them help you.

I hope you’ve mostly got access to effective, unbiased medical professionals who know what they’re doing. But the rarer and lesser known your condition, it seems the better and more necessary it is to hone your own awareness. And trust that awareness. And communicate it to medical professionals until you get one who listens, understands and work with you as you are are, not merely how they assume/ anticipate you to be.

Tag: Fibromyalgia

Sensory Challenges