Driving and fibromyalgia – tell us more
Many years ago when I first started to meet with people in the MS community one issue which kept coming up was that of driving.
Many forget how reliant we seen on cars and driving these days.
So we thought it would be interesting to run a discussion blog and poll on the subject.
The poll is below. But it would be great if you could use the comments section below to share your experience of multiple sclerosis and driving. It would also be really interesting to know what alternative arrangements you have had to make if you can no longer drive.
Many thanks in advance
| bjensen94 | I used to live where it snowed but I had to move to the desert because with the glare from the snow and when it would fall against the windshield I couldn’t focus my eyes.
|
| bjensen94 | TonyAyers Try getting the yellow lens shooting glasses. |
| JulesSetzer | Yes, I had to give up my 5-speed car because I have drop foot on my right side and it was too hard picking my leg up and down. I now have an automatic and I can easily drive with no issues. I must always be cool in my car though. Summertime, the air conditioning has to be blaring! |
| sally_martin | Argh the dvla have taken my licence! I was due to get a new car using motability! The doctor wont help and my neurologis won’t help! I have driven since I was 17 and never crashed or pranged my car! Argh am so frustrated by it! |
| NaomiDonaldson | Only time I couldn’t drive was when I had severe numbness and pins & needles in my legs & feet so walking let alone driving was an issue. On top of that I was on steroids and the painkillers I was given to stop the pain were so strong and gave me such awful sickness and headaches that I could barely lift my head off the pillow. Since then no problems, have an automatic car, not that I really need it, but handy none the less! |
| adamslk | Tecfedera, didn’t work for me, I’m on Aubagio now and doing fine. Last spring I had was down for 3 months, The long lasting affect are cognitive problems, at this time I can no longer listen to music no detractions while driving. |
| StevieJaye | adamslk Hi, I found that if I take an anti sickness drug, an anti-spasmodic for the stomach cramps and something for reflux at the same time as the Tecfidera, I feel fine. I know its more drugs but I don’t mind, After 6 weeks of taking Tecfidera my brain fog has improved and I haven’t had an MS hug, as many pins and needles and numbness. Other things are still there like spasms but I’m hoping that improves too. Not everything works for everybody sadly. |
| TorilEnger | jese8525 Well i have spasm in my stomach and legs but I got a system which make me able to stear with one arm( also controll lights,horn etc.) and with the other i can give gas and brake…..had to take a special driving test for it though but now it work like a charm 🙂 |
| catlee628 | If your right leg is the problem child, you can get a left gas pedal. They have portable ones now. I had a car accident in 06 which destroyed my right leg and what was left has been hindered more by 13 surgeries. The one I have was installed into my SUV. There is a cover that blocks the normal gas when in use so that you don’t hit it by accident. The pedal is where the clutch would be in a straight shift. Mine can be pulled out with a pull of a hook that releases it. When that is done, my husband or any other “normal” person can drive it. Each state is different but I had to take a driver’s course on how to drive with one installed and then had to take a road test with it in. It was weird learning at first but it’s second hand now. Hand controls might be another option too. My doctor had to write a Rx for it and some insurances will help with some or all of the cost. The one I have was around $400 but my health insurance at the time paid for it. |
| catlee628 | If your right leg is the problem child, you can get a left gas pedal. They have portable ones now. I had a car accident in 06 which destroyed my right leg and what was left has been hindered more by 13 surgeries. The one I have was installed into my SUV. There is a cover that blocks the normal gas when in use so that you don’t hit it by accident. The pedal is where the clutch would be in a straight shift. Mine can be pulled out with a pull of a hook that releases it. When that is done, my husband or any other “normal” person can drive it. Each state is different but I had to take a driver’s course on how to drive with one installed and then had to take a road test with it in. It was weird learning at first but it’s second hand now. Hand controls might be another option too. |
| axertme | I am the same way, my legs just start moving and jerking around. My Husband just drives me to all over if I need to go to appointments or where ever. |
| axertme | I totally understand, I am the same way. My damn legs just start moving and going crazy and jerking around. I don’t trustmy legs enough anymore to drive. |
| pasofino2 | I have really reduced the amount that I drive. Usually my husband drives me everywhere. I don’t like to drive with anyone riding with me as I’m afraid I’ll do something stupid in front of them. |
| TonyAyers | I wear glasses, and I do not think the glare free would help my eye sight with the non reflective. I have to work, and that requires driving, guess its just something Ive gotta live with. |
| FriesenRoxane | I have exactly the same conditions.Ugh..what a pain in the ars. |
| CarolineCourey | MaryEC CarolineCoureyAt Eureka Solutions in Montreal.http://www.eurekasolution.com The gov paid for it otherwise about $1000 depending on the control you choose. |
| MaryEC | CarolineCourey Where did you go to get the hand controls ? |
| MaryEC | Lynnet1968 Taking my shot at bedtime along with an 800mg ibuprofen worked best for me – never had the side effects as long as I did it like that. Good luck. |
| MaryEC | Lynnet1968 Taking it at bedtime with an 800mg ibuprofen worked best for me – never had the side effects when I did that. Good luck 🙂 |
| adamslk | The glare is miserable, have you looked for any glasses that cut the glare. Pump your brakes, which I would have imagine you have tried. |
| TonyAyers | I have to drive to work, and sometimes night driving is required. Even before I was diagnosed I’ve had problems at night, with glare, and now these new “real light” head lights drive me crazy. It also makes me very nervous when people tail gate…… |
| RitaEarly | I gave up driving after I had a wreck that my MS brain simply can’t tell you a single thing that happened! I’m on a 1st name basis with 3 cab drivers now and I have a couple of close friends who offer to take me places when they go. |
| RitaEarly | Lynnet1968 Avonex was my 1st drug. IM (intramuscular injection) injections are … uncomfortable, but u get use to it. I recommend a little wine before and some Tylenol to prevent the ‘flu like symptoms” after. |
| lindadesant | My eyesight. After 12 years from first being diagnosed, I have Optic Neuritis. |
| DaleRichesin | In reply to CarolineCourey.CarolineCourey When I was first diagnosed my doctor told me that it was progressing fast and I might be in a wheelchair and/or blind within six months. I have been on copaxone now for 12 years and I have only taken off sick one day and that was a dental procedure. |
| adamslk | Lynnet1968, I have been on 2 different injectable meds, I just gut it out and did it. Do they have u practice on an orange ? You can do it, if this really the right MS drug for you. Have confidence in yourself. Best wishes.. |
| jese8525 | In reply to adamslk.Hi, I’m 28 I didn’t like it it actually didn’t work for me. How is it making you fee? |
| jese8525 | In reply to Lynnet1968.I was on that I had a lil burning when I did it and I was achy. Don’t be scared if you end up reacting not likeing it tell your dr. You should be fine though ;)…..I stopped taking it cause it didn’t work for me. Wish you the best xoxo |
| jese8525 | In reply to CostaAndreou.I think you will be ok most of the time if you do loose your sight you g o on steriods and it most likely does come back. Dont stress about that you can work yourself up so much tjat you will cause yourself to relapse. 😉 xoxoxo jessica |
| jese8525 | I drive if its really really close I have to be careful cause my right leg my driving leg is my problem leg. My foot I loose control and my leg so its not safe and sometimes I can’t move it and it happens out of the blue or it jerks its not safe to drive like that. |
| SusanHulderman | I still drive it is a lot of fun. However, in the summer I drive less. I live in Tucson, AZ and the car becomes unbearably hot and I tend to get panic attacks when overheated! I call myself the bat lady since during our hot summers I only go out between dusk and dawn. It is a heck of a lot cooler that way. By the way I have had MS since 2001. |
| CarolineCourey | You may get optic neuritis, a common symptom, inflammation of optic nerve, will affect sight, but will pass. I had it 4 times. Sometime lasted week. Or up to a month … usually one eye, mild to severe. One neuro opthalmologist prescribed prednizone, another said wait it out. I waited. Still driving after 21years.use a cane, work… Adapt. |
| CarolineCourey | Have Had MS for 21yesrs.no drugs, they don’t stop progression,they are toxic. This is stated by pharma’s own research studies. Avonex,rebif, copaxone, tysabri… Neuros have no options but drugs, what did help was CCSVI. Inform yourself. |
| CostaAndreou | i have had ms for 5 years Please can anyone tell me if i will lose my sight? I drive everywhere if i cant drive i cant go go Anywhere!! Then i would not know what to do. I am very afraid
Costas Andreou |
| Lynnet1968 | I have a question that is kind of off topic but is anyone on Avonex? and what was your experience ? I am scared to start my injections and have put it off for over a week now.. |
| Lynnet1968 | I do not drive much at all,But if I do have to drive I do not take any of my pain meds in the morning. It kinda scares me to drive. My thought process seems to have slowed down. Anyone else have this problem? |
| CarolineCourey | What’s it for? |
| nluvwithlif | I couldn’t drive for the first month after I first got sick. That seriously pissed me off. It was hard to drive for the next 6 months until I got the hang of it, but as I started to fall into remission, it became easier. Now my only thing is that I have to use my right arm to steer because my left one “forgets” what it is doing! LOL. |
| adamslk | I still drive, if I feel impaired I don’t. I have a amazing support team. |
| adamslk | Hi, 24 yrs with MS, since changing to Tedfidera has been a struggle. Anyone having difficulty changing to this drug ? |
I used to live where it snowed but I had to move to the desert because with the glare from the snow and when it would fall against the windshield I couldn’t focus my eyes.
TonyAyers Try getting the yellow lens shooting glasses.
Yes, I had to give up my 5-speed car because I have drop foot on my right side and it was too hard picking my leg up and down. I now have an automatic and I can easily drive with no issues. I must always be cool in my car though. Summertime, the air conditioning has to be blaring!
Argh the dvla have taken my licence! I was due to get a new car using motability! The doctor wont help and my neurologis won’t help! I have driven since I was 17 and never crashed or pranged my car! Argh am so frustrated by it!
Only time I couldn’t drive was when I had severe numbness and pins & needles in my legs & feet so walking let alone driving was an issue. On top of that I was on steroids and the painkillers I was given to stop the pain were so strong and gave me such awful sickness and headaches that I could barely lift my head off the pillow. Since then no problems, have an automatic car, not that I really need it, but handy none the less!
Tecfedera, didn’t work for me, I’m on Aubagio now and doing fine. Last spring I had was down for 3 months, The long lasting affect are cognitive problems, at this time I can no longer listen
to music no detractions while driving.
adamslk Hi, I found that if I take an anti sickness drug, an anti-spasmodic for the stomach cramps and something for reflux at the same time as the Tecfidera, I feel fine. I know its more drugs but I don’t mind, After 6 weeks of taking Tecfidera my brain fog has improved and I haven’t had an MS hug, as many pins and needles and numbness. Other things are still there like spasms but I’m hoping that improves too. Not everything works for everybody sadly.
jese8525 Well i have spasm in my stomach and legs but I got a system which make me able to stear with one arm( also controll lights,horn etc.) and with the other i can give gas and brake…..had to take a special driving test for it though but now it work like a charm 🙂
If your right leg is the problem child, you can get a left gas pedal. They have portable ones now. I had a car accident in 06 which destroyed my right leg and what was left has been hindered more by 13 surgeries. The one I have was installed into my SUV. There is a cover that blocks the normal gas when in use so that you don’t hit it by accident. The pedal is where the clutch would be in a straight shift. Mine can be pulled out with a pull of a hook that releases it. When that is done, my husband or any other “normal” person can drive it. Each state is different but I had to take a driver’s course on how to drive with one installed and then had to take a road test with it in. It was weird learning at first but it’s second hand now. Hand controls might be another option too. My doctor had to write a Rx for it and some insurances will help with some or all of the cost. The one I have was around $400 but my health insurance at the time paid for it.
If your right leg is the problem child, you can get a left gas pedal. They have portable ones now. I had a car accident in 06 which destroyed my right leg and what was left has been hindered more by 13 surgeries. The one I have was installed into my SUV. There is a cover that blocks the normal gas when in use so that you don’t hit it by accident. The pedal is where the clutch would be in a straight shift. Mine can be pulled out with a pull of a hook that releases it. When that is done, my husband or any other “normal” person can drive it. Each state is different but I had to take a driver’s course on how to drive with one installed and then had to take a road test with it in. It was weird learning at first but it’s second hand now. Hand controls might be another option too.
I am the same way, my legs just start moving and jerking around. My
Husband just drives me to all over if I need to go to appointments or where ever.
I totally understand, I am the same way.
My damn legs just start moving and going crazy and jerking around.
I don’t trustmy legs enough anymore to drive.
I have really reduced the amount that I drive. Usually my husband drives me everywhere. I don’t like to drive with anyone riding with me as I’m afraid I’ll do something stupid in front of them.
I wear glasses, and I do not think the glare free would help my eye sight with the non reflective. I have to work, and that requires driving, guess its just something Ive gotta live with.
I have exactly the same conditions.Ugh..what a pain in the ars.
MaryEC CarolineCoureyAt Eureka Solutions in Montreal.http://www.eurekasolution.com The gov paid for it otherwise about $1000 depending on the control you choose.
CarolineCourey Where did you go to get the hand controls ?
Lynnet1968 Taking my shot at bedtime along with an 800mg ibuprofen worked best for me – never had the side effects as long as I did it like that. Good luck.
Lynnet1968 Taking it at bedtime with an 800mg ibuprofen worked best for me – never had the side effects when I did that. Good luck 🙂
The glare is miserable, have you looked for any glasses that cut the glare. Pump your brakes, which I would have imagine you have tried.
I have to drive to work, and sometimes night driving is required. Even before I was diagnosed I’ve had problems at night, with glare, and now these new “real light” head lights drive me crazy. It also makes me very nervous when people tail gate……
I gave up driving after I had a wreck that my MS brain simply can’t tell you a single thing that happened! I’m on a 1st name basis with 3 cab drivers now and I have a couple of close friends who offer to take me places when they go.
Lynnet1968 Avonex was my 1st drug. IM (intramuscular injection) injections are … uncomfortable, but u get use to it. I recommend a little wine before and some Tylenol to prevent the
‘flu like symptoms” after.
My eyesight. After 12 years from first being diagnosed, I have Optic Neuritis.
Lynnet1968, I have been on 2 different injectable meds, I just gut it out and did it. Do they have u practice
on an orange ? You can do it, if this really the right MS drug for you. Have confidence in yourself. Best
wishes..
I drive if its really really close I have to be careful cause my right leg my driving leg is my problem leg. My foot I loose control and my leg so its not safe and sometimes I can’t move it and it happens out of the blue or it jerks its not safe to drive like that.
I still drive it is a lot of fun. However, in the summer I drive less. I live in Tucson, AZ and the car becomes unbearably hot and I tend to get panic attacks when overheated! I call myself the bat lady since during our hot summers I only go out between dusk and dawn. It is a heck of a lot cooler that way. By the way I have had MS since 2001.
You may get optic neuritis, a common symptom, inflammation of optic nerve, will affect sight, but will pass. I had it 4 times. Sometime lasted week. Or up to a month … usually one eye, mild to severe. One neuro opthalmologist prescribed prednizone, another said wait it out. I waited.
Still driving after 21years.use a cane, work… Adapt.
Have Had MS for 21yesrs.no drugs, they don’t stop progression,they are toxic. This is stated by pharma’s own research studies. Avonex,rebif, copaxone, tysabri… Neuros have no options but drugs, what did help was CCSVI. Inform yourself.
CarolineCourey When I was first diagnosed my doctor told me that it was progressing fast and I might be in a wheelchair and/or blind within six months. I have been on copaxone now for 12 years and I have only taken off sick one day and that was a dental procedure.
i have had ms for 5 years Please can anyone tell me if i will lose my sight? I drive everywhere if i cant drive i cant go go Anywhere!! Then i would not know what to do. I am very afraid
Costas Andreou
I think you will be ok most of the time if you do loose your sight you g o on steriods and it most likely does come back. Dont stress about that you can work yourself up so much tjat you will cause yourself to relapse. 😉 xoxoxo jessica
I have a question that is kind of off topic but is anyone on Avonex? and what was your experience ? I am scared to start my injections and have put it off for over a week now..
I was on that I had a lil burning when I did it and I was achy. Don’t be scared if you end up reacting not likeing it tell your dr. You should be fine though ;)…..I stopped taking it cause it didn’t work for me. Wish you the best xoxo
I do not drive much at all,But if I do have to drive I do not take any of my pain meds in the morning. It kinda scares me to drive. My thought process seems to have slowed down. Anyone else have this problem?
What’s it for?
I couldn’t drive for the first month after I first got sick. That seriously pissed me off. It was hard to drive for the next 6 months until I got the hang of it, but as I started to fall into remission, it became easier. Now my only thing is that I have to use my right arm to steer because my left one “forgets” what it is doing! LOL.
I still drive, if I feel impaired I don’t. I have a amazing support team.
Hi, 24 yrs with MS, since changing to Tedfidera has been a struggle. Anyone having difficulty changing to this drug ?
Hi, I’m 28 I didn’t like it it actually didn’t work for me. How is it making you fee?
I’ve only been diagnosed as of 3 years ago & what is funny to me (not literally) is that my symptoms started while I was driving one day with my kids and a friend to the beach. My legs felt like electricity was just pumping through them and this continued for a week straight. I’ve noticed now that I can only drive for about and hour and a half and if I’m a passenger, I can’t sit for more than 2 hours. Stop and go traffic is the worst on my body, it leaves me aching, but I just kind of power through it as best as I can. Possibly not the smartest thing to do…
After19 years of ms, couldn’t feel pedals anymore. So installed hand controls,that was 2years ago. Transition a little hard, but in no time became my new normal. Highly recommended.
Dx PPMS in 2008, had to stop driving 7/12 due to weakness in right leg and decreased reaction time in braking/accelerating.
In Quebec the government covered all costs to convert my car with hand controls. Small switch puts it back in regular mode for regular drivers. If you want to drive, this is a wonderful solution.