Hi Colorado girl, and welcome to the Healing Well forums. By finding this place alone you've made one of the greatest discoveries you could hope for, especially when it comes to combatting your evil companion; chronic pain. You will find folks here warm and caring, always ready to lend an ear and their own personal experience. So sit down and stay awhile, and welcome to your new family!
RSD is now a days known as CRPS: Complex Regional Pain Syndrome. Do you know at what stage you're at? Typically there are 3 stages, and unfortunately most of us end up at Stage 2 simply because they do not always diagnosis it right away. Stage 2 is considered non-responsive, and all they can really do is treat your pain.
For me it all begin when I got injured on the job building slot machines back in October of 2007. What was supposedly tendonitis mutated into CRPS, but at the time no one could figure out why I was having this horrible pain in my right wrist and hand. Everything came back clean, so surely I was just another person faking it to try and scam the government out of money given it did start as a Workman's Comp case. Thanks to my WC doctor my case was closed, but my pain refused to go away.
Over 2 years later and my Pain Management doctor figured it out; by the time he did my pain had spread from my hand and wrist all the way up to my elbow. Now it is up to my shoulder and slightly into my neck.
I've been on narcotics as a result for about 3 and a half years now. They've tried other things on me, like Tramadol, Celebrex, Neurontin, but so far either I had adverse reactions or they didn't help. The Celebrex actually caused my heart rate to increase dramatically to the point where I would get light headed. Stopped that real quick. And the Neurontin made me excessively nauseaus. Recently they converted me from Loritab to Percoset, and that's all I take pretty much 4 times a day. Tomorrow I go to meet with a surgeon to discuss the risks of him doing a Spinal Cord Stimulator Unit. I've already done the trial, and found it to be a real life changer! But given where they need to place the paddle leads it's also risky.
I function as well as I can. I went from physically demanding jobs to being permanently disabled with CRPS at Stage 2. I can't really ride my bike, as the pressure on my arm to hold my handle bar is to much for me, and certainly trying to grab the brake lever is right out of the question! So instead I walk when the evenings are agreeable enough to it. I take my iPod as I found music to be a great distraction and a real motivator; it's easier to keep a quicker pace when your music is up-beat.
On a daily basis my pain levels are pretty high and affect me on my angles given my issue is now my entire right arm, which is also my dominant arm. There are days when it's a struggle to open a jar, and other days where I don't even bother to try and ask a family member for help instead... and that's even with a lil grippy thing to help me grab it.
Because I only take the Percoset I really don't notice the side effects. I drive my car, work with my friend's horse, and all without really noticing anything. My head feels a bit like swiss cheese these days, so I try to do mental exercises to try and retain what mind I have left. Some of it could be the meds, and others of it could merely be the fact that I'm not doing much other then word puzzles, number puzzles, crosswords, and reading as many books as I can get my hands on.
The depression you will find comes with the territory. Ask around and it's unlikely you will find a single person suffering from CP who doesn't have depression issues in one form or another. I know I don't take anything for mine right now, which is a combination of the narcotics and my pain attacking me, but I fully intend to next time I see my PM doctor.
From what I understand the Spinal Cord Stimulator unit has great success with CRPS victims, and it can restore an ammount of your life back to you, make managing your pain easier, and help you reduce the ammount of pain meds you need to take, if not completely other then as break-through control for when you have flare-ups.
Your son is in Afghanistan... congrats to you for being the proud mother of a military son, and please tell your son thank you, for his service to our country. My suggestion would be try and get in touch with the base chaplain, for whever your son is stationed, that way you can try and get in touch with some of the family members of other member's of your son's unit. While soldiers are deployed you'd be amazed at the support team behind composed of the spouces and family members of the various soldiers. This way also you might get put in touch with someone who has more regular contact with the unit and can help give you updates, depending on how sensative their information is on what they're doing and where they're at. What unit is your son with, what does he do? Alot of the action isn't nearly as hot as it was 8 years ago, but I do know how scary it can still be at times. Make sure if you get a chance to talk to your son you try not to let any of your worry be heard in your voice! You need to be strong for him. Laugh, joke, send him regular care packages! Find out what sort of ammenities his unit has where their at. Can you send him movies, or do you need to send him a portable DVD player too? Send him an Easter Basket! Some times it's the little things that keep them going. I used to bake cookies and send those constantly; home made goodies are a big hit. I sent books and blankets, socks and underwear, lights at Christmas time to help decorate the barracks, and even small cheap toys for the soldiers to hand out to the local kids. If they asked for it, I sent it.
The best way to deal with the disease we have is don't hide it. Do not be ashamed of what you're fighting, do not make it your dirty secret, your skeleton in the closet. I know for me one of the first things I did was go out and do oodles of research! I wanted to learn everything I could about what I had, especially given how rare it is. I wanted to know what my options were, I wanted to know the best treatments, the best medicines. I still do given how things change constantly! But never have I tried to hide it. Hide it in the sence of how much it hurts, yes, that I admit to, but hiding what I have if someone asks me "hey, what's the wrist brace for? You got carpal tunnel?", no. If I take the time to explain what I've got, what's wrong with me, perhaps one person will understand a bit better, perhaps more research will get done on ways to treat our condition, a condition that slowly claims your body and puts it in pain. While I can't say I'm "proud" of the fact that I have CRPS, by hiding it you're denying it, and that only gives it that much more power over you. *hugs*
I wonder if maybe also a SCS unit would help you; it is one of the leading ways they treat or condition. Also perhaps you just had the wrong "cocktail" of meds. I know for me with my Percoset the rules are no more then 4 a day, but if I don't need it, don't take it. Perhaps you were over medicated and that added to everything. Do you see a Pain Management doctor? Have you seen a therapist to talk to? Is your husband and rest of your family supportive, emotionally and physically, of what you struggle with?
Remember, you're not alone.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant