What is Reflex Sympathetic Dystrophy
Complex regional pain syndrome (CRPS) is a chronic condition characterized by severe pain following injury to bone and soft tissue. The International Association for the Study of P...
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Riding Long Distance in a Car, Help please!~
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Hello everyone, I am a new member who-finally was correctly diagnosised with RSD-atleast all the symptoms fit to a tee! My history is long and sad of doctors, tests, and fustration as it seems a lot of yours are. Here's my biggest fustration that I really need help with, my husband and I have a beautiful retreat cabin about 600 miles away from our home, and it is a place I love to visit but have been unable to for a year and a half now. Why? Riding in a car causes extreme pain, and a huge flair up that can incompacitate me for weeks after. We have done some minor testing and it seems I am able to deal with the situation for about maximum 1 and half hours in a car with rest breaks about every 45 minutes. Anything over that will send me into a flair up that lasts days or weeks to calm down. My RSD is not under control in any way and feels like it is deterating quickly. Started in left wrist where damage is went up to shoulder, then neck ... right hand starting to show strong signs of rsd as well. I was diagnosised in July 2008 with periheral neuropathy in both upper extemities and was told by doctor for wrist that it was of no concern. Blood tests showed no other reason for the neuropathy and right hand was not hurting then...should have listened to doctor who did neuropathy tests and gotten a new doctor! Surgery in November 2008 kicked nerves into RSD. Does anyone else have this problem and were you able to find a way to overcome it? Right now my hubby say no way is he riding with me that far...sometimes I want to go anyway. He says I must find a way to make it better first. Last time I rode for 2 1/2 hours to mother in laws, on the way back went into flair up that was so severe I bit my tounge tring to still my cries, then had to hide the blood to not freak out husband/child more than they already were. Help please!
Posted on 02/24/09, 05:02 pm |
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Hello Mountainmom-
I just read about your dilemma concerning travelling in a car. Unfortunately, until you get your RSD under control (painwise), it will be very difficult for you to travel. I was diagnosed with RSD in June 2008. I am on strong pain meds for my RSD and my pain levels are considered as much under control as possible. I still have a pain level of about 6 or 7 but that is as good as it get. I travelled for a destination wedding in November 2008 to San Juan, Puerto Rico and the airplane ride was excruciating. Even with my pain medication I endured higher pain levels. I assumed it was from the pressurization. I was taking so much pain meds on the the airplane that I barely remember the trip. I went immediately to my doctor and he instructed me to not travel again. I however, just completed the trial for the Spinal Cord Stimulator and travelling in a car for an hour in a half from the procedure and back to the facility to have it remove was fine. Getting to/from the facility without it was rough though. The stimulator reduced my pain down to about a 4 with no narcotics needed. I am hopeful that the permanent one will be just as successful, allowing me to travel again...especially since I am a flight attendant and I would like to return back to work someday. My advice to you would be to make sure you are being treated by a physician who has a specialty in your condition...PAIN MANAGEMENT or CHRONIC PAIN CONDITIONS. Next, work with your doctor to try and get your pain managed and if you can stand it, try physical therapy. I have been in physical therapy for nine months, from 3 to 5 times a week and it is very painful but it has helped with some of the edema, the extreme sensitivity of something touching my leg, the discoloration and the inability to weight bear. 
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Hi, I also have difficulties when travelling. I have just been diagnosed with CRPS. My original injury was bruised knees and then 4 days later from my knee down to my toes was swollen. It got so bad that I was unable to drive. I am now able to drive however even when travelling short distances driving (or not) the pain gets worse for a couple of days (and I just have to rest) I think that the next trip that I am going to try sitting in the back seat with my leg elevated. Perhaps you could try something like this?
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Hi Mountainmom,
I too suffer from CRPS, (mine is in my left leg from mid thigh down to my toes) and recently had to make a round trip of 5hrs to visit a Doctor. We knew this was going to be a killer journey but my hHusband was determined to make it as comfortable as possible for me, so he pushed the passenger seat back as far as it would go and packed the foot well up with cushions as I find sitting with my leg elevated eliviates some of the pain. This did help and the flair up that we both knew I would have was not as severe as we thought. Have you tried travelling in the back seat of the car, lying down with as many cusions as you can get in for support. Hope this is of some help to you. Crafty gizmo
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I will hopefully be going to our cabin in late november. It is a 12 hour drive, 600 mile trip, with lots of bumpy, nasty roads, ending in a 4 mile skidder road with lots of bedrock peeking up, making nasty bumps even at slow speed. Since the RSD has spread to my legs, it will be interesting to see how I do. I have learned a lot since I posted this and now use while traveling, pillows, blanket (for breezes when my hubby opens window, which is most of time) lidoderm patches and my Tens unit on full time. I also use meditation, and medication. Sometimes this works, sometimes it doesn't but I am tired of the pain taking away some of the best parts of my life, so it's time to do it anyway. If we go, I will let you know how it turns out, if I survive! LOL.
Thanks everyone for the help. Mountainmom
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Hi Mountain mom, I have RSD with both the neuropathy as well as an auto immune disorder and traveling on short trips and long ones have always been a challenge. I have two spinal cord stimulators as well as alot of meds, my suggestion is this, keep joints warm and elevated if possible. Keep a heavy blanket in car and try to elevate your legs, a curved neck pillow helps and don't be afaid to take pain meds and dramamine for nausea, take frequent breaks and see if that helps would like to talk more Kelly
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