Complex regional pain syndrome or reflex sympathetic dystrophy

I look into acupuncture in our area we do not have no one and same with the pain psychologist. I guess that's what happens when you live too far in the Northwoods. They said the new meds will take one month to increase to new dose and then hopefully in that month I'll start feeling better. I just suckes right now it's mainly a lot with my eyes and my face and nobody can seem to have an answer by just keep passing it down to someone else. Doctor's think it might be CRPS but then they just cannot deny it or confirm what it is and that's the hard part. So in mean time I have to wait another 2 months that before month total till I have another doctor's appointment and then they will look more into it because I'll be on my new meds full dose. Right now it just like living day-to-day and I never know what I'm going to wake up to. Half the time I never know what day I'm because with two to three hours of sleep in the middle of the night really can mess up a day.

How was it determined that you actually had crps versus a problem with your implant ??

I'm sorry you don't have any way to try those things up north. Hopefully the new meds will work for you. I have taken a couple that took a month or more to get up to full strength, so I know what you mean. The thing with CRPS is, even if they do tell you that's what's causing your face and eye symptoms, it's just more questions...will it get better? When? What will work best for the pain? Will it spread more? etc. As you know. I hope the meds help with sleep, that's one of the hardest things about this.

I am hopping that the new meds work but like you said it will take a month to know. Sometimes I do not want to know if CRPS has spread. I think it might be easier to deal with the unkown at least you have ideal what it may be. I have tried everything for sleep random nothing works for me either. Scariest part is I am starting to get adjusted to my goofy sleep schedule. I gusses coffee at two clock in morning not so bad because the house is still quiet.

That's true, at least the house is peaceful in the middle of the night. I understand why you might prefer not knowing if the CRPS has spread. It's not very comforting to find out. The medication that has worked best for me is Topamax, but it doesn't completely get rid of the pain, so my doctor suggested also taking Cymbalta. Not sure what to do, as it will be more side effects and more $ in prescriptions. I've heard some people do well on gabapentin or on Lyrica. I haven't tried Lyrica. I didn't take gabapentin too long because I couldn't think straight on it. (But some people think Topamax is worse that way.) Also did you know some people get a spinal cord stimulator implanted for pain relief? I believe it's for people who don't have much luck with the medications. I met one person who has had good pain control with the implant but another didn't think it helped much. I guess it's like the drugs, different for everybody.

I have just started Tomax this year. The doctors just increased my dosage and kind of kicking my butt. I am also been on Gabapentin for some time. They help some with the pain but not much. Still hard to get out and do any thing especially when eyes are sensitive to light. I go to occupational therapy once a week to keep my hand some what moving. Lost most of my finer motor skill in my dominant hand which sucks. The spinal cord stimulators I heard they would have a 50-50 chance that they work but sometimes they make the pain worse.

@daybyday I am not much of a regular on this string because thankfully chronic pain is not something I really have.
Drugs do react differently on different people though, that's for sure. Oxycodone and oxycontin kept me awake all night when I had to take them a couple of times while I had cirrhosis. I don't know if the cirrhosis was to blame or just my body. I had taken those drugs in the past with no sleeplessness, they did the typical thing and basically knocked me out a bit.
What I really want to know though, this string started with problems after a knee replacement. I have had one and will be having a second time in the not too distant future. Does anyone know how common it is to develop RSD? My knee that was replaced does hurt very much of the time but that's because the surgeon did not do a good job I think.
JK

If I go ahead with Cymbalta I'll let you know how it works. Still deciding. Wouldn't it be great to find a drug that would get rid of the pain & stiffness?? It's good you're getting OT, my doctor says it's the most important thing for treating CRPS. I can't go to OT right now but still do the exercises, if I don't my hand stiffens up. The fine motor problem is still hard for me, I practice picking dry kidney beans and marbles out of a bowl of dry rice.

That it would be awesome to find a drug fights and or slow down stiffness and other side effects of CRPS . Therapy helps my hand alot along with my wrist from stiffing up to bad. One thing I have problem with sometime the effected area starts to itch really baddly and can be rough sometimes. I do not know if that has ever happen to you at all.

Yes! I also got tiny white dots on my hands sometimes - do you? Really itchy. Thankfully itching is a lot better but the skin still gets rough. Although, my skin is usually very smooth & shiny on the palm now, very weird-looking. I use a lotion called Cera Ve - it's at Target, Walgreens, CVS, etc. It's not cheap but you don't need much so a bottle lasts a long time (I only use it on hands). It helps with the roughness, not so much with the itching. Putting the hand on something cool, or in cool water, helped me with the itching.