Reflex Sympathetic Dystrophy Support Group
Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a chronic condition characterized by severe pain following injury to bone and soft tissue. The most common symptom is burning pain. The patient may also experience muscle spasms, local swelling, increased sweating, softening of bones, joint tenderness or stiffness, restricted or...
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!
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.
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
Thanks everyone for the help.
Mountainmom
You are not alone. This is a very common problem with RSD.
When I travel with my family, we just plan for hour interval stops, so I can stand up for 10 minutes.
I load up on meds about an hour beforehand, too. This is super important. You have to head it off. It may not avoid a flare, but it cuts down the severity and duration.
I plan for sleeping in the day after any travel. I have learned that I need extra rest to recoup.
I avoid salty foods & drink extra water while traveling. I know edema is likely, I am not going to give it any better conditions for moving in.
I put my feet up, as much as possible, in the car.
I put little pillows around me to stop some of the vibration of the car because that's biggie with RSD.
It takes time to figure out what adjustments you'll need to make with RSD. Don't give up. You are still living. Give yourself the gift of time. That's important to remember.
kittychats
I also have a neck brace which is absolutely necessary!!!! I even have a neck/back brace - but it is actually uncomfortable for me in the car.
Another good idea is to wear compression socks and or gloves. They even make "air" casts that you can put on your arms and/or legs that you can use like compression socks. You can buy them at the pharmacy. Or make your own compression socks out of ace bandages. When I have flare ups I sleep with my compression glove - so why not use the same sort of thing in the car?
Alternate between fluffy pillows and thermapedic type pillows. And even though yiu hurt - make sure to stretch!!!!!
Thanks all, and gentle hugs,
mountainmom