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

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.

My CRPS started in my left leg, so in a way I'm fortunate in that we 'only' 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

Thanks Bram & Vrae!

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

God Bless You Nanc........could have been me writing your driving story.

I do know from experience (my mother in law lived with us for 5 months a few years ago) that in GA all the dr has to do is write a prescription for PT and we can call any home health agency we want and they will come in so many times a week to do PT. It was the same agency that was doing her bathing and stuff 4 times a week. They have a host of aids, nurses and PT personnel they can use.

Not sure if this helps but my mother in laws costs were charged to Medicare. But I know of people that their insurance also covered this for them.

Talk to u soon......Stay strong !

Debi from beautiful Georgia (the sun is Shining ! )

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.