Driving....
 

Hi guys!

I am so frustrated, upset and hurting. I need to vent...I have only driven one time in 2013 and that was months ago and I only drove 5 minutes from our house. My husband drives me everywhere now. I have to start PT for my pelvic floor dysfunction and my husband cannot keep taking off work so much so I decided I would take him to meet his carpool and drive myself to the appts. Today we went out so I could "practice"...yeah, it didn't go so well. I made it about 2 miles and I was in tears and had to pull over. The pain in my right foot got so bad and holding on to the steering wheel was painful. This just really sucks! We are gonna try again tomorrow since my first appt is Monday morning. I don't know if this is gonna work. Ugh! :(

Thanks for listening...
Nanc
:hug:

Well done for trying Nanc, and I hope it gets a bit easier and you can gain some driving independence back. As my arm is getting worse, I've started worrying about driving, and what a right royal pain :rolleyes: it would be to have to rely on my poor husband for every trip I make...

Do you have a friend who could help out? Maybe you could drive as far as you are able each time, and then they could take over? It's awful having to ask for help all the time tho isn't it? I don't know Nanc, this thing takes so much away from us.

Take it easy and hopefully things will get easier :)

Bram.

Would at home PT be an option for you? When I couldn't drive because my RSD symptoms were at their worst...my doctor prescribed for a physical therapist to come to the house. That worked out really well and was a wonderful experience. It also meant that I didn't have to rely on anyone to drive me to therapy a couple times a week.

Hey Nanc,

I really am sorry that this is so painful for you. Is there anything different you can do with shoes or socks that could make your foot just a bit more comfortable? What about lidoderm patches placed along nerves above the ankle to help? What about using cruise control as much as possible? For your hands can you add a steering wheel cover so that your grip doesn't have to be so tight?

What about friends or neighbors is there anyone who might be able to help out when your husband cannot?

If your mornings are better for pain it might be good to try your practice then?

Sure wish there was an easy answer but as we all know with CRPS there never is.. so sorry.

I do hope your next practice goes better than today!

In the UK we have to report any condition that affects the safety of our driving, they took my licence away.

Thanks Bram! Unfortunately I do not have many friends left around me. Lost a lot of them as I got worse, so I guess they weren't too good of friends huh? My "better" friends live in the same town as my family, which is 2 1/2 hours away. I only have a few friends around here and they all work full-time. My in-laws live close by, but neither are doing too well. If my family was closer by, it would be so much better.

I want to ditch this PT, but I have to try it. She told me it would be a lot of visits...at least 8-10 to start. What a pain!! She is helping the pelvic floor but knows nothing about RSD/CRPS....not good!

I had a minor meltdown coming home, I am having one of those weeks where I am so fed up with the pain getting worse and more limitations. It was hard accepting the fact that my husband has to drive me everywhere, and we adjusted. Now this just makes it too difficult. He works an hour from home and the PT/Dr's office is 45 minutes from our house.

Thanks again for listening...:hug:

Hi catra! I am not sure if it is an option for this kind of PT. I will check into it though. I explained the transportation issue with the PT and she didn't offer anything up, except having 1 hour appointments instead of 30 minute appointments...for some of the visits. Her latest appt is 2 or 2:30 and she is not there on Fridays...my husband is off every other Friday and works 7:00 - 4:30 every other day.

Thanks for the idea :hug:

Yeah, I worry about that too.

My husband is really worried about me driving, as am I.

My husband said to check with your county social service department to see if there are any rides to pt or dr appts or any other services you may be entitled to. Also my sister in law said that sometimes when your disabled there are services that provide in home pt if you need it. I hope you can find someone to help you. I think it's great your trying to drive, but be careful not to drive if your on prescription pain meds that can make it hard to think clearly when driving. I don't drive anymore because of the trouble I have holding onto the steering wheel with my rsd hand and because of the pain meds I'm on. They both impair my abilitiy to drive and I don't want get into an accident and hurt someone. I'm not trying to scare you, it's just how I feel. Good luck with pt and I hope it helps. And I hope you can get there or have an in home pt so you don't have to worry. My thoughts are with you.

Hey Tessa! Thank you! There is nothing I can do to make my feet feel better or more comfortable. Sometimes I can wear socks, sometimes not. Sometimes I can wear shoes, but only certain ones. Lidoderm patches do nothing for me. I think the problem in my foot is because the movement back and forth and holding it on the gas. The route to PT only allows for cruise control on part of it. Not trying to sound negative.

I do not have anyone to ask to drive me. The few friends that I have here work full-time and have kids. My neighbors...I am not close enough to any of them to ask something like this. Plus they all work full-time.

So frustrating...

Hi again Nanc. I'm sorry you don't have anyone to help you except your husband. The few good friends I had seemed to disappear after I got rsd. I don't know if it scared them or they just didn't want to hear me talk about it. I realize it's not a fun subject, but thought my friends would be there for support. But they weren't. My husband (and my son when he's home from college) drive me everywhere. My husband just took me to the local diner for dinner. We try to go once a week so I can get out of the house a little. It's only literally five minutes away and the food is so good. He drives me to all of my drs appts. They do have vans here that will take me to dr appts, but my husband wants to take me and luckily he has flexible hours where he works. I so appreciate him doing this. I feel like such a burden, but he says that he wants to do it. It's so nice that your husband drives you too, but I know it's hard at times when they are working. I hope you can find a van that will take you to pt when you need to go there or an at-home therapist. I hope you have a better night tonight too. I know it's hard, but try to hang in there.

Trust me I understand the frustration completely as my CRPS II originated in my driving leg and I live 45 min from the nearest store and 2-3 hours from all doctors. It is very frustrating for sure. I have had many conversations about this with the doctors who treat me, because they easily forget that having a friend drive me means 6 hours out of their day at a minimum.

I do drive, but this means I have to forgo many medications in the days leading up to the appointment so that I am legal to drive, which only adds to the pain and frustration. The only thing things that seem to get me through (and not always without tears) is adjusting my seat so that my pelvis is higher and allows for better blood flow to my legs and feet, frequent stops and the lidoderm patches which reduces the burning a little (too bad they don't help you).

It sucks it really does!! What about local transit or services offered for people with disabilities, ride share or checking with senior centers to if they know of any other transportation services not commonly known otherwise?

Have you tried Valium suppositories for your PFD? A friend uses them and says they have worked wonders for her. Hopefully you can get through your PT quickly and that it helps so that the life challenge and pain it creates makes it worth it in the end.

Fingers crossed,
Tessa

Thanks everyone for your replies and suggestions. I really appreciate it!! I am looking online for services in my state and county. I plan on calling Social Services, etc Monday morning.

These doctors, etc., just don't get it do they? They say, just call a friend or neighbor, like it is that easy. Not many people are that eager to drop everything and spend their day driving and sitting in a doctors office. I know I'm not and I am the one with the appointment. Having RSD in my hands, feet, shoulders, left arm and left leg (and other places) does make it difficult to drive :(

I don't take many meds at all for my pain because of my allergies to everything. I take phenegran and demerol when I get to a point where I can't take it. It gives me a bad headache so I don't take it much. It is the only thing that I have the smallest reaction to. It doesn't get rid of any pain, but it takes the edge off and will help me sleep. There is no worry about me taking this when I would drive. When I was still working, I wouldn't take anything during the week...it was hard, but I had to be sharp and alert...yeah right!

Tessa - thanks for the recommendation on the Valium suppositories for the PFD...I will ask about them Monday when I go!

Nanc
:grouphug:

I am soooo in touch with this issue. Driving is becoming a problem for me too. Such a loss of freedom. I still drive, but I pick my battles and only do it when there's no other choice (like you're trying to do). It is frustrating as all hell. I'm so sorry Nanc. :hug:

My CRPS started in my left leg, so in a way I'm fortunate in that we 'only' :rolleyes: had to swap our manual transmission car for an automatic....but the cost and hassle of that was pretty big and as with everything else, I just felt like such a nuisance and drama-queen!

Since it's been in my feet as well I find I do struggle to feel the pedals fully sometimes. On bad days I just don't drive at all, and I won't ever set out to drive a long distance now as I just don't know if my feet might flare up. It's not happened badly while driving so far. I dread not being able to drive...

I'm the same with the friends and family dilemma - like so many others, I've lost a fair number of so-called friends since this started. Some people just don't forgive or try to understand when you have to change your plans at the last minute, or if there are places you just can't tolerate anymore. The ones I've still got either work full time or live quite a distance away. My family aren't that far from me, but they're working, and my parents aren't that well themselves and I can't ask them to wait around at a hospital. Taxis are expensive, buses impossible...my poor husband has taken long lunch breaks for me, afternoons off, etc, but he can't do it all the time. I'm not claiming disability allowance or benefits, so I don't think I qualify for the local driver service free. Sigh.

Well done to all of you finding a way through the maze of problems this throws up at you. It's great coming on this forum and feeling inspired by everyone out there who feels like me and understands all this stuff, and pushes to get through the long days too....

Bram :grouphug:

Thanks Bram & Vrae! :hug:

So, I went out to try again this morning. I failed at it again. My foot was bothering me and my vision was blurry. As I was driving (back roads) I got one of those sharp shooting pains in the side of my head and then the vision gets worse and my face starts flaring up. We ended up swapping places and my husband drove the rest of the way to Walmart. We forgot my walker, so I said I would just use the cart, my hands hurt so bad from trying to hold the steering wheel, I couldn't push the cart. We only picked up a few things and left.

At least I tried again, but I feel so defeated. I always thought I would be older, much older, when I would lose the ability to drive. This just sucks!!!

My husband is calling his boss now to tell him he needs the morning off to drive me to my appt tomorrow. Hopefully I can find some help through Social Services or something by my next appt. Thanks again for the ideas and caring suggestions. I appreciate it and am so thankful to have found this forum. You guys are awesome!

Nanc :grouphug:

Hey Missy :)
 

Hi Nanc, I'm so proud of you for trying to go out again. You shouldn't feel defeated because you tried. I get blurry vision from my neurontin sometimes. I don't know if what you take affects your vision, but you may want to check it out. My rsd is starting to spread to my feet. I noticed last night that bottom of my left foot is starting to swell up now and it hurts so much when I walk on them. Spread stinks. I'm worried that I may not be able to walk much longer without assistance, let alone drive. I hope you have luck with social services. I will send positive thoughts your way. Hope you have a better day this afternoon.

My at home physical therapy was through the local hospital...advocate home health. It was my doctor that gave me the referral for that (my boyfriend's mom made the suggestion when she was with me at an appointment since she had the at home physical therapy after her knee replacement). My doctor said she wouldn't have thought of the at home therapy on her own but once the suggestion was made she thought it was a great idea. It was one of those, "Duh! Why didn't we think of that before? It's so obvious..." moments.

If it's not safe for you to drive then it's not. If the possible benefits of therapy are outweighed by the pain it will cause you to get there...then it's not worth it. Hope you can figure something out...don't give up.

I don't know if it's the same in the US but here if you have an accident due to a medical condition which you haven't reported your insurance will be declared null and void and you will get done for driving with no insurance, that comes not from being an RSD sufferer but from being an ex-police officer.

In the US each state has different rules regarding medical conditions that affect drivers licensing. If false information is given and an accident occurs not only will that person be held responsible (even if the accident wasn't there fault) to a certain degree and they will also be criminally charged usually a misdemeanor offense. Medications that influence judgement, reflexes and are known to cause any kind of cognitive impairment will be looked into and likely used against the person even if they weren't the at fault driver. Insurance companies will also reduce any benefits or fight any amount owed if the driver (at fault or not) is found to have any of these medications in there system, even if they are prescribed. Ultimately we are responsible to use good judgement and follow the laws provided under drivers licencing in each state.

This is why I taper down or withdraw from medications prior to driving when absolutely necessary.

It is each of our responsibilities to protect the lives of others when we know that our judgement/ability is impaired, especially knowing that our actions (if impaired) could cause injury or worse for them to end up in our shoes.. that would be terrible.

Oh Nanc, I only have a glimpse of how frustrating this must be for you! I could not drive for about 8 weeks after surgery caused mine. Then I got a steering wheel knob (ordered from auto parts store) and had to take Nucynta to get to my P.T. I know it hurts like ?*&($# no one can imagine, but please keep trying and believe you me I do understand those "meltdowns".

Call the public transport in your town. Ours has a service for just disabled people, they'll pick you up and drop you off where you need to go, it's like $2 a ride.

I hope your appointment went well!
 

Hey Nanc,

I wanted to let you know I was thinking about you, hoping your appointment was helpful. Glad your husband was able to take time away from work so that you were able to go and I hope this doesn't cause him any additional stress.

Wishing you a better day,
Tessa

Hi Tessa!

Thanks so much for checking on me. My appointment was ok, maybe a little helpful. I told her again about the ride situation and that my husband took 1/2 day off again. She said "if there's a will, there's a way." Really?? Wanting to be there will not magically get me there. I could tell that my husband was a little frustrated about the appt since it took a while longer. He didn't seem mad, just concerned about getting to work when he said he would. She didn't have anyone scheduled right after me so she extended my 30 minute appt to a little more than an hour (I am not complaining about that).

I sent her a brochure about RSD/CRPS and she also pulled up info online to read before this appointment. I appreciate her efforts to learn more about it before working on me a lot. I see that she still has some learning to do :)

I am still working on the ride situation....will keep you posted!
Nanc
:hug:

Nancy, over the last few years I have had a problem driving and keeping my license. At one point it was taken away. That feeling was awful. When I was volunteering to not drive was much different than being told 'you cannot drive.' In order to get my license back I had to go through a program at one of the local hospitals. There they take drivers (usually the elderly) out for special testing. They assess the driver's ability to drive with medical history included. Medications are most certainly a concern as to their affects on the driver. They also make recommendations as to possible equipment that can be installed on a car to help the driver drive. In my case the RN approved me to drive with the stipulation that I have a nob installed on the steering wheel (because my left arm was weak). She also had me drive with a hand operated brake mechanism (my legs and feet are weak and feet numb). She provided information for community programs that help with the cost of installation of the equipment. She said that there are many disabled people that drive, including amputees, with the proper equipment.

The medication, that is the rub.

I had to take the approval to my doctor. We had a discussion again about my driving ability and medications. She finally approved it with the stipulation that I would not drive when on heavy medications or in a terrible pain flare. I had to have my wits about me. I then had to go to the DOV where I took both a written and driving test. I past. Phew! So I have my license but I still don't drive. My husband takes me everywhere for the most part. I have used the ENOA van to take me for aquatic therapy in the past.

I have my license. It is important to me. I hope you can work out your issues with getting around to your various medical and therapy appointments. I understand about your concerns for your husband and the interruptions of his work. My husband does the same. Perhaps there is a driving program at one of your local hospitals. For me it was free, and I believe worth it.

I am hoping for the best for you. It does take a bit of work, but please stick with it.

Have you considered trying to hire someone to drive you? Not a professional driver but someone who runs errands? Think $10-15 per hour.

I have not really. Wouldn't know where to begin in finding someone trustworthy and it could be costly...only just began receiving SSDI. Paying that much on top of the dr co-pays would be too much as I have a lot of appts going on right now.