Driving with Fibromyalgia

By Helen Watts

One of the questions that fibro folk often ask is ‘will fibro stop me driving, will it become too painful, am I alert enough, will I remember where to go if I have a fibro foggy day’ etc. It’s a difficult question to answer so I turned to the Facebook groups and asked them. 

‘JB’  “When I am fatigued I can’t drive as it affects my eyesight and obviously shattered so not safe”.

‘LH’  “ I gave up driving about 3 years ago, I’ve driven since I was 18 and I'm now nearly 73, so it was a big loss of my independence, but I didn't really feel safe anymore and my eyes are now bad, so it was the sensible thing to do”.

‘ZS’ “I’ve had to stop driving for awhile due to medication changes and only recently started doing local trips. I love (or used to love) driving. That independent person behind the wheel. I drive a 4x4 due to owning a large  dog. I find my car easier to get in due to the step up. Although I do have a seat pad to turn me forward. Without my car I would be unable to do so much. I am uncomfortable in social situations but my car enables me to just get out for a drive to a different setting and sit watching the world be it the sea or the green spaces”.

‘SW’  “I don't drive, had to give up having lessons way back in 2008/9 my knees and hips were so painful and couldn't turn to look over shoulder for checks so gave up”.

‘AT’  “I still drive on the days when I’m confident my concentration is up to it. I have found to drive at night I have to wear tinted lenses as my light sensitivity is high”.

‘LM’  “I'm a driving instructor and I have fibro amongst other conditions!  I would absolutely say that if you have fibro, it's really important to be aware of how you feel in terms of emotional and physical exhaustion - learn to recognise when you are safe to drive, and when you are not safe to drive.  We also know that fibro fog/exhaustion can come on suddenly too, so I always keep bottles of lucozade in the car - anything with some glucose in it is good! I also keep chewing gum in the car as I find that helps.  If you feel as though you are struggling to drive 'normally' and feel that you may benefit from adaptions, PLEASE get in contact with your local disability driving instructor! They can help you try different adaptions and see what might work for you. This could include aids to help you get in and out of the car, aids to help you improve your observations without the need to turn your head to check blind spots etc - there are SO many different adaptations!   Remember, driving instructors don't JUST help you pass your test. We are here for you, forever! Any decent driving instructor would be more than happy to talk it through with you and help you decide what might be best. They can also take you out for refresher lessons in new cars, auto cars, adapted cars, or even if you just don't feel confident! I LOVE teaching these lessons! It's such a privilege to be able to help, and knowing that I have the same medical conditions such as fibro, helps me relate to how you are feeling.   Please don't feel as though you can't drive with fibro - there is help available and being able to drive gives you so much more independence and freedom, and we want to help you keep that independence.

‘PAW’  “it’s very tiring to drive a manual, much easier to drive an automatic”.

‘CA’  “I can manage short drives with barely any issues most days, I find the drivers seat is one of the most comfortable chairs I own. But if it's over 45m I need to pull over every hour or so for a break”.

‘HS’  “I only drive very short journeys, otherwise my muscles cease up and I’m unable to walk”.

‘CW’ “I don't drive when I have fibromyalgia fog because I wouldn't be safe. Pain wise I am okay short distances or if I know I have to go some distance I'll make sure I have a few lazy days before. Otherwise my neck and legs end up so painful”.

‘KS’  “I dont drive at night unless I have to, I’m okay driving in the day as long as I’m not going anywhere I dont know , I have to go over routes again and again if I have to drive somewhere new and if its over a certain number of miles I have to rest halfway through the drive”.

‘JP’ “I too only drive short distances, say up to half an hour in the car, that’s my limit.  My muscles start to cramp after that.  I also am only comfortable driving to places that I know.  I hate driving at night and avoid it as much as possible especially if my fatigue is bad.  My eyes seem to have trouble focusing especially if it’s raining, I see shadows of objects that aren't there.  I never drive with my migraines as it is not safe. 

‘NS’ I’m okay driving but sometimes need my sat nav to remind me of how to get to places I go to regularly”.

‘AC’  “I'm still driving, but changed to an automatic so much easier now. I also drive an SUV /4x4 which is higher up so easier to get in and out of”.

‘CP’  I tried an automatic car but still struggle. I very rarely drive now and miss it terribly, it was my independence”.

‘LM’ “I had to give up driving 10years ago, at the time I thought it was mainly loss of central vision ,arthritis ,spinal fusion little did I know I had fibromyalgia and all related conditions..I miss my independence immensely”.

‘CL’  “I love driving but I'm having to make the switch from a manual to an automatic as balancing the clutch etc is just becoming too painful.  I find I drive instead of walking a lot because it's easier for me - I conserve my energy a bit better and I'm not using up the sort of time limit I have before walking becomes too painful to just get somewhere”.

‘GG’  “I don’t drive anymore. I have an automatic but let my partner drive now, dual carriageways and motorways make me very anxious. It is also very painful especially foot controls due to severe arthritis and fibromyalgia”.

‘LSR’  “I don’t drive. My legs and feet are troublesome on a daily basis. They go numb, heavy and weak. I wouldn’t trust myself to drive”.

‘ADF’ “I get really nervous driving, if I don't feel safe enough to then I won't. I have no adaptations to my car as it's a mini but long journeys are very uncomfortable. There are times though when driving is the only option for one reason or another, and I am extra careful during these times and make sure they're for quick journeys not long ones. I don't feel okay going on a long journey without someone else in the car in case I get tired and can't drive back”.

‘RH’  “Foot controls allow short journeys only as I get terrible pain in my ankles. Also not got the confidence to drive far”.

‘LC’ “I drive an automatic, keep my hands at 8 and 4 on the steering wheel, I use lots of cushion supports, have my sat nav on always and air conditioning helps also heated seats if you can afford to. Also find listening to podcasts or audiobooks helps for a long drive. Lots of stops for stretching and to get a coffee and snacks. I couldn't cope without my car. Means I can get out and about more”.

‘CK’  “I had to change to an automatic last year, the gears were becoming too painful to use. I also find I plan my journey even just the short drive into town, I do it to avoid where I would have to turn my neck too far, as this is impossible and painful to try. I don't even drive long distance as I would seize up sitting. When I'm having a fibro fog day there is no way I'd drive, I don't feel confident and my senses and concentration is zero”.

‘MR’  “Automatic because a Manual caused too much pain whilst driving, which continued after the journey. I don’t like driving since I got Fibromyalgia,  which was  initially caused by a car crash.

I now suffer with anxiety, driving is stressful so avoid it as much as possible. That has impacted on my social life and that of my children”.

‘KH’ “I know myself if I am safe to drive...everyday is different. I now prefer an automatic plus my current car has an automatic hand break. On of my worst pain areas is my left hand.

My main problem with driving is my memory and concentration issues. I never go out in my car on my own. When I’ve been out, in the past on my own I forgot where I was going. I get completely lost in familiar local areas. I no longer drive in the dark”.

‘LW’ “I drive and have to do a couple of long (over 2 hour) journeys to Reading a couple of times, (back and fore) a week to work. I stay in Reading for a few days at a time with family.

I've been doing this for fifteen years but it is getting much harder these days.  I now often have to stop several times and also have a sleep (sometimes for a couple of hours). I use a pressure cushion to sit on but this doesn't stop my leg pain, numbness in my legs and buttocks. Cramping and neck pain can also be an issue”.

‘TM’ “Had fibromyalgia for six years I think I’m well controlled with meds. I work full time but had change job roles as was driving an hour each way for work. Now I drive 20 mins makes a big difference. Can’t do long journeys as concentration goes. I miss turning I’m suppose to go down. My eyes get heavy and headache. I also get irritable legs. I drive an automatic now, hip too painful to do manual and my left ankle swells. Tiredness is another factor. Have to consentrate so hard when driving. Can’t see well at night time so avoid as much as possible and wear yellow tinted glasses at night which helps with the painful glare of lights at night. Cold effects me so shiver uncontrollably when in car, need to warm it up before journey. Also get bad neck, shoulders driving when cold weather here”.

‘KL’  “Made the switch from a manual car to an automatic a year ago - the difference it made to my pain level/spasms etc was unreal, and meant even if acute I could still drive.  Strongly recommend people give it a go, as something so simple made a massive impact to my pain”.

‘JM’ “I gave up driving just over 3yrs ago, I keep thinking maybe I'll drive again but never do, fibro seems to have taken my confidence, used drive mini bus to coast for old people, different cars but just can't now, maybe one day”.

‘AW’ “I drive once in a while, getting in and out of a small car was killing me”.

‘JL’  “I drive as it's less painful than walking but can only manage short distance and need frequent rests”.

‘KTB’ “I  had to change my gear car for an automatic, otherwise I just couldn't have kept on driving. The cramps and spasms were horrendous and I'd had to pull over far too often. I limit it, and only do small journeys wherever possible. If I do a larger journey, then I'd need to stay overnight to recover my strength. Went on holiday to Scotland, & driving was hard work. But took good breaks and split journey up, so stayed overnight on the way there and back. Made sure my co-driver was fully covered on my insurance just incase”.

‘TS’  “I drive rarely, my husband does it all. My hands hurt all the time. I also have Discopathy which means my spine bulges out of my neck and I have constant pins and needles throughout my body, face, hands etc”.

‘LP’  “My son with fibro used to love driving.  For the past few years, since his fibro kicked off, his car has sat on the drive virtually unused and growing moss.  He used to drive to see friends an hour and a half away.  That is far too far for him to manage now”.

‘SY’ “I had to change to automatic and that was easier for a while but find even the smallest journey leaves me in agony. My husband drives now most of the time. As my legs become very painful from the vibrations of the car I have a 4" thick foam cushion under my feet all the time, it's been replaced a few times now but couldn't do without it”.

‘AJ’  “I had to change to an automatic about 8 years ago as I’d got caught in a heavy traffic jam and the stop/start was agony. I had to pull over and sat in tears. When I told my husband he immediately said we’ll change to an auto for you. I’ve found it so much better”.

‘KHO’  “I drive an automatic I would now find driving a manual overwhelming too much to think about and strain on the body, I can just about drive for an hour after that get stiff hands get stuck in driving position and lower back becomes painful and have to straighten up when I get out of the car, but would hate to loose my independence am determined to keep finding ways to stay driving, use memory foam cushion for my lower back and hand exercises that occupational therapy showed me”.

‘MS’  “I still drive. I cannot drive too far, if I do then I have to have a rest for at least half an hour before carrying on. It makes the pain in shoulders, spine, hips, knees, wrists, fingers arms and neck a lot, lot worse. As I cannot walk very far I feel I need to keep trying to drive as I love it”.

‘JR’  “I still drive, but I have to prepare for even the most familiar routes.  In my head I break them down into streets - I've passed that street,  so I now have another 8 to go, and then another 7, etc. If I'm motorway driving, I break them down into junctions”.

‘PP’  “I now drive an automatic. Its helped, one less thing using up energy and focus. I definitely don't drive as much as I used too. Short trips are okay but anything over an hour has to be planned and paced knowing I will be exhausted, in pain and overwhelmed if its somewhere I've not been before. I don’t drive if I don’t feel completely right as I worry about making a costly mistake, getting confused or lost. Having a blue badge has helped and given me more confidence to go out knowing I've got the option to park closer to shops”.

‘AC’  “I drive but only to places I know very well locally and never at night, some days pain and anxiety stops me driving but usually if I have some one sit with me I am better”.

‘LA’  “I drive but had to change to a very small car with lighter weight doors and easy light steering. I do have a blue badge which enables me to park in what I consider to be accessible parking spaces nearer to shops, hospitals and GP surgery”.

‘CG’  “I can no longer drive manual cars so changed to automatics. On long journeys I have to factor in several breaks and even nap breaks too as the CFS kicks in”.

Lots of great comments here, and lots of tips on how to keep driving.  To join the discussion on this and lots of other topics why not dip into the Facebook groups and join in.