Reflex Sympathetic Dystrophy (RSD)

[jimbo320]

I wonder will my RSD will be life long? I've had it now for 2 years resulting from an accident. I just had my prescription changed from neurotin to lyrica to deal with the pain. The neurologist has me slowly decreasing my neurotin while increasing the lyrica. By week five I will be taking just 400 mgs of lyrice twice a day. I then get evaluated to see if that will be enough. My pain is getting worse as is the RSD As soon as the neurologist saw me she said it was getting worse.
Again, is RSD a lifelong condition?

[reruho]

Jimbo,
I hate to be the bearer of bad news but it probably will be. The chance of remission is highest if you have aggressive treatment early after the onset of symptoms. You may get to a point of better pain control but after two years i don't think it will ever go away. Children have the highest rates of remission and the literature points to the presence of growth hormones being the reason.

Did you say you will be taking 400mg of Lyrica twice a day, I thought the upper limit was 600 mg a day? I will have to do some research on that. I tried lyrica, we were not a good match. It did help with the burining pain and improved my sleep, but I felt like I was 100 years old.

Are you in physical therapy? PT or movement will help your RSD limb. What other treatments have your tried?

Reta

[jimbo320]

Thanks for the reply Reta,
I did P.T. for 7 or 8 months with little results. I am able to raise my arm a little higher but not as high as normal. I've had my wrist fused so the hand is no longer in a bent position. The fusion had a slight chance of helping with my pain thinking that some of it was due to cutting off circulation or pinching the nerves but didn't help. My fingers are still bent but I can't make a fist. Some days I wake up and my fingers, or some of them, are some what straight but I can't move them. I still get shooting pain that wakes me up at all hours. Pardon my language but this sucks....

[reruho]

Jimbo,
It sounds like you had a crushing injury. It sounds very bad, I am so sorry.

My wrist was slammed against a window by the airbag during a car accident. I started with a chipped ulnar, very simple injury. 4 weeks later, they discovered a undisplaced distal radial fracture. Another 6 weeks and this time it was compression fractures in my hand. Another 6 weeks and this time it was RSD. I told the Ortho I was glad to be released from his care. He looked puzzled and told him I did not like coming to see him because they found something new each time. I was thinking I didn't have anything else to go wrong with me.

He never acknowledged anything was wrong until I asked him outright, "Is this RSD?" I had complained about the pain at each visit and he just said, "Hmmm", and made a note in my records.
The OT was sending reports of "RSD like symptoms" to him. Once I asked him, he said yes and I was out the door. I shipped off to Pain Management so fast the screen door never had time to hit my butt.

I think he was glad to get rid of me because I kept asking questions. I came to each appointment with 2 pages of typed questions and would ask them questions they could not answer. The most common answer was: You will know at the 1 year mark.

Sometimes, I feel these doctors have us trapped. You can't complain because they can dismiss you and then who do you go to? I hate being trapped. I will say I have a good PM now, the first one was useless.

Reta

[jimbo320]

Reta'
My accident was crushing to say the least. I was an over the road truck driver and while in Stanton Island, NY I was involved in an accident avoiding the car that cut me and another truck off. The car crossed over from the far left lane, cut the truck off in the second lane, then cut me off which I was in the right lane, just to get off the exit. When the driver saw a 25 mph sign for the exit, it came to a stop right in front of me. Being empty I could not come to a complete stop so I tried to aim between him and the truck next to me. My tractor brakes grabbed harder than my trailer brakes so that put me into a spinning skid. I managed to avoid hitting anybody and aimed for the concrete rail on the inside of the bridge/overpass I was on. I thought I was at enough of an angle that I would hit the rail and go off to the median. No such luck. I crashed through the rail and down 25 feet to the road below. I ended up lying outside the tractor tangled in my seat belt. When I came to, my left upper arm was completely snapped in two just above the elbow. I was rushed to a hospital in Stanton Island where I was treated for a concussion and three days later a rod was put in my arm. Three days after that I took a flight back to NC. Lost the truck, which was mine, and everything in it except my cell phone and my license.
Since then I had my wrist fused to straighten it from the bent position it was in. My arm still cannot straighten completely and it feels more comfortable if I hold it like Napoleon. The wrist fusion had a slim chance off making my pain better thinking some of it might be due to nerve pinching but it didn't. As the orthopedist said, it is what it is....

[jimbo320]

Reta,
I also miscounted the mgs of the lyrica. After the fourth week I will be taking 100 mgs twice a day so 200 mgs not 600. If this proves not to be strong enough, then it will be increased. First week is over today so tomorrow I will begin taking 25mgs in the morning and 25 mgs at night with three 600mgs of neurotin in between...

[SALLIE]

Jimbo

I am sorry to hear about your accident, my husband was a truck driver too until he slipped on ice on the trailer and tore up his knee. He has had two surgerys and ended up with RSD 8 months ago.

Please let us know what differences you have between lyrica and neurotin. He takes 1200 x 3 times a day of neurotin and oxicotine. This helps so he can walk and sleep better but some days are still hard. He also does warm water pool therapy but I do not know if it helps much.

Sallie

[jimbo320]

Hi Sallie,
Luckily I just got done unloading the load, 42 rolls of paper/ 39,000 lbs., so I was empty at the time. If the trailer was loaded I wouldn't be here today. I often think that if I was loaded I would have hit that car for sure, and probably others. I was on the Stanton Island Expw at 12:30 in the afternoon. I'm at least pleased with myself that I was trying to miss everybody and did. I aimed for the jersey barrier thinking I was at enough of an angle to hit it and run along it to the median. Didn't work out. I crashed thru it instead. If your hubby wants, I'll send him a pic of my truck in the resting position.
Sorry to hear of his knee. I will for sure let you know how the lyrica works out. Right now I'm in the tapering stage, decreasing the neurontin and increasing the lyrica. In another 3 1/2 weeks I'll be on full dose of lyrica, 100 mgs 2/day and no more neurontin. Then I'll be able to judge the effect.
Good luck, stay in touch.

Jimbo

[miley7]

Hello I am on a very high dose of lyrica but I am also on morphine 3x a day 60mg and 30mg IR q4hours when needed. my dr told me that lyrica is a very effective drug for nerve pain but is not good to keep increasing to higher doses. I tried all the neurotin gels and creams in addition and they didnot work. I continue to have pain at times not as severe as others. Cymbolta helped me they use it for pain and it helps with some depression I was on 120mg daily of this and still had some paing and depression the dr is now trying me on a drug called Savella I have just started it. hope to hear from you soon miley7. PS rsd is not curable it can be managed and at times go into remission but only goes away for periods of time could be short or long sorry. I have done alot of research about rsd and I want to be honest and up front so you will know what to expect. thanks