Hi Dew,

I'm so sorry to hear about your sister! I really hope that the surgery goes well and that she gets to feeling better real soon! Please know that you are all in my thoughts and prayers at this difficult time and please keep us updated when you can!!

Me and my mum have travelled 4 and a half hours to get to Great Ormond Street Hospital, London, by car and the journey was pretty painful for me. There are so many pot holes in the roads over here and no matter how much you try and avoid one, you still somehow manage to hit one!! The pot holes and speed bumps really set my pain off and it goes up quite a lot for a few minutes.

If I could suggest anything to you, it would be to wear the comfiest clothes you have. If I am travelling a long distance, I sometimes travel in my PJs and then change when we get there. When we went to London, we were going straight to an appointment so I travelled in my tracksuit bottoms and a lose fitting top. The tracksuit bottoms are the comfiest thing that I have as they are three quater length and don't touch my foot too much. I also love leggings as they are comfortable and don't touch my foot and lower leg!!

Also, it might be worth taking some extra medications to try and get rid of any flares. We travelled to Vegas in March by plane and the journey was really tough for me so my doctor gave me an 'emergency pain pack' with extra medications and anti-inflammitaries. It might be worth speaking to your doctor to see if he/she can suggest anything that may help.

I'm unsure where your RSD is but it might be worth taking some pillows with you. When we are travelling long distances, I sometimes take some pillows with me so that I can sit of them to try and stop me from feeling the vibrations in the road as much. Of course I still feel them a lot but it doesn't tend to be as much as if I haven't got any pillows with me.

Keep moving as much as possible also. Stop every few hours for a drink and walk around as much as possible. I know it can be extremely painful and tiering but it should help improve the circulation. Try and move in the car as much as possible also - even if it is just by doing a few simple leg stretches or something.

Keep hydrated as much as possible and drink lots of water. That should hopefully get rid of any increase in swelling and make you go to the toilet so you have to keep moving!!!

Take care of yourself and please send your sister my love and best wishes. Please keep us updated on the situation when you feel up to it!

Alison.

I'd suggest regular stops, so your muscles don't stiffen up and you get out of the car for a while.

Take a comfy pillow, make sure you are comfortable in the car and that you sit in a good position. Maybe lower the seat a bit so you can lay down and sleep a bit? If you can sleep through a large portion of it, maybe that's better?

I hate the car (I am only a passenger, am no longer allowed to drive), mostly because I feel the bumps in the road and the vibrations. It's painful.

My hubby says he thinks it is about a 2 day drive, maybe a little less. We own a luxury car, Buick Park Ave, and it does have a smooth ride. The most I have had to travel since I have had RSD is 210 miles(round trip), to see PM.

I will keep all of your suggestions in mind, and will be able to contact everyone while I am staying w/my sister and her family, while in Arizona. I will be seeing PM and psychologist just before we are to journey west( I am in OK).

Thank you for your prayers and feedback.


Dew

Just wanted to say that I hope she'll beat this! Your support will be a blessing to her, I know that much. Family is important in times like these. RSD is not easy to deal with and you are so willing to make the sacrifice, to go through so much pain to help her out. Wishing you lots of strength!!!

Thinking of you both!

Dew, My prayers are with you & your sister. I am sure a positive attitude helps with this. I belive that to be true. You have gotten alot of great advice. I have travelled alone doing all the driving myself since getting RSD. ANd with family. I did 1200 miles in 3 days. It was very very hard. I also have a luxury car. I have a 1995 Cadillac. Rides like a dream. Still I needed the extra pilows like were suggested. I wear loose clothes. And I get the heck out of that car as often as I can or feel I need to,. Period. Otherwise its way worse. I have made the same trip for years & used to just shoot on through like a bolt of lightneing. Not anymore. Take your time & take care of yourself & it will pay for itself when you get there. Have a very safe trip.
Hugs, Denny

I would fly. Southwest has some amazing deals right now.

I have severe difficulty just going the 60 or so miles to Boston from Providence every 3 - 4 weeks for my blocks. The last time my husband drove me up there I had an excrutiating headache and it was truly tortuous for both of us (it's a very good thing you aren't allowed to eat or drink anything 6 hours before the procedure, because I likely would have been sick in the car!). It doesn't help that the roads in Mass are really bumpy and full of potholes.

If you decide to drive, it might be a good idea to find out about the condition of the roads, the availability of rest stops, etc before you leave so that you can plan your trip accordingly.

I'm so very, very sorry about your sister.

Please take care of yourself, Sandy

i suround myself with big comfy/soft pillows, a small throw blanket, pain meds, recline the seat some...

although i think this is kinda weird, but it hurts a lot less for me when i'm actually driving then if i'm just sitting back.