Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-02-2010, 08:44 AM #21
bobinjeffmo bobinjeffmo is offline
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bobinjeffmo bobinjeffmo is offline
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Join Date: Mar 2009
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Default Here's where I get my info from

Don't ask me how I got so lucky, but two of my doctor's who take care of me are Mayo's trained and so brilliant they almost scare me. It's my RSD/Sports Medicine doctor (was was offered a permanent position but then turned it down!)who's the head and ultimately in charge of all the big decisions of my team who explained to me so much about RSD during our 30 - 45 plus minute talks each and every time we're together over the past 11 years.

Since you're 15 years into this RSD saga, you're not in the typical boat boat most are in, but of course you know that. What hurts me is when I read postings by people who've just been diagnosed with RSD but then think their lives are over when that's just not necessarily the case. While there's never a situation where "always" is the rule, those of us who've been around have seen a great deal of RSD cases get further along not just because of one problem, injury or disease that's going on but other contributing factors hence the RSD is just one piece of the puzzle, but rarely the sole reason for all of their health problems. My only goal was to give some hope instead of just more of the "sky is falling" scenario which is so easily found all over the Internet these days.

The more we can help guide those new into RSD toward finding a doctor(s) who really know their stuff from day one and then convince them to stick it out instead of constantly shopping around with more and more physicians because they're not getting the results "they" want, when "they" want it, the more help we can be. Unfortunately pain sometimes drives us all down the path of doing the stupid and not following through with whatever course of treatment or action they're being advised to take simply because results are not taking place fast enough. For those of us not blessed enough to be born with patience, in the end we'll find it because we have no other choice.

It's been a delight visiting with you, Bob.

Quote:
Originally Posted by loretta View Post
Hi Bob, Interesting stats- After 15 years of this, I would be thrilled for them to be true. Can you share where you got this information from. I started out with one frozen shoulder following surgery to now full body plus internal involvment. Thank you ahead of time, loretta
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Old 06-02-2010, 11:01 AM #22
bobinjeffmo bobinjeffmo is offline
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Join Date: Mar 2009
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15 yr Member
bobinjeffmo bobinjeffmo is offline
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Join Date: Mar 2009
Location: Lohman, MO
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15 yr Member
Default Hang on a moment, you're in the right place I promise

If you'll take a look at the photo's I almost didn't decide to share, you'll see that I understand how horrible it is living with peripheral vascular disease because it sounds like we both found the same boat that was mounted on the Titanic.

I'm not really surprised that RSD became one more issue when you've got the incessant circulation problems that usually include infections and even blood clots to name a few. I know and so does everyone else here that you're not some nut who's looking for your next round of drugs and that you're not suffering from a love of spending days at a time in doctor's offices reading dog-eared magazines showing the latest hippie movement as news breaking on the front cover. You're just trying to find solutions.

Vascular diseases are one those really hard nuts to crack illnesses because it's not always just about treatment, but how in the world we live with it that drives us half insane at times. You've spent days, weeks and months I'm betting with physical therapy. Medications seem to only help a bit, but nothing so far has really eradicated these invasive diseases from taking over your life. So now what?

First, stop beating yourself up! It's not your fault so stop shopping for more. It is something that you might just have to learn to live with no matter what stage your at or if worse it progresses, but trust me - you can live with it. One way is by not competing with yesterday and every time you start comparing what you use to call normal compared to what you're living with now, you're only headed down a very dark emotional hallway that leads nowhere. Instead learn to live with what you still have plain and simple, even though there's nothing simple about it whatsoever.

Right now I'm betting that as much as you hate carrying around a purse full of medications, you're going to need to accept that you probably always will. You need better pain management. This first requires you release any prejudices you have against the hard stuff and instead look at harder hitting prescriptions such as narcotics in a bit different light. It wasn't till I started my regimen of OxyContin and OxyIR (plus internal morphine pump) that I was able to find a new normal in life. Before my accident, I wouldn't take an aspirin over a headache because of such adversity against anything in pill form. Once you get your pain under better control you'll then find the means and ways to find solutions you would have never considered in a million years before now.

Secondly, please try and do anything you need to so you don't accidentally strike out against those who love you. While we all have the tendency to hurt those we're the most close too, it only causes more grief in the end. When you're finding yourself bouncing off the walls emotionally, do it alone or get in touch with the gang here, but avoid it in your real world as much as humanly possible. Bridges are easy to burn down but takes years to rebuild so if the doctor advises you to take some form of chill pill - do it. You're at an intersection in life where you've got to trust your doctors and then accept that these most intimate of relationships also take time to forge. Only through time will you hopefully and slowly find yourself in better shape than you are today.

Not is all is lost, it's just different and I'm positive that you will learn how to live this different life that's ahead. I'm here if you need to talk, Bob.

Quote:
Originally Posted by BaseballMama View Post
I am a 33 yr old woman recently diagnosed with CRPS/RSD after 3 years of improper care, being turfed from doc to doc and being treated like a drug addict/drug seeker.
I have peripheral vascular disease in my left lower extremity and the RSD developed after frequent and chronic stasis ulcers on my left foot/ankle. My pain is unrelenting, extreme cold or heat (like we're having now) seems to exacerbate it.
I'm on Lyrica and Norco for pain but it never goes away. I have had several (very painful) nerve blocks with no relief. The biggest problem I'm having is coping emotionally with the changes to my life. I am so tired of being "sick", of going to MD appts ALLLLL the time, carting around pill bottles the size of trash cans and so so tired of hurting.

It's always there, it never goes away and I think I may go insane. I dream about dying like most people dream about winning the lottery! I would NEVER kill myself as I would never do that to my kids but I think about it all the time. I can't find any support groups for chronic pain in my area but I did make an appt with a psychologist. The thing is I don't want to be on anymore meds, I don't want to start taking benzos in addition to all the opiates I'm on but I don't know what to do to get rid of this anxiety.
I'm scared all the time, when I have bad flare-ups of pain I am miserable to everyone even my kids, and I just don't know how to go another 40+ years doing this. I don;t think I will make it. Can someone tell me how to get my head together??
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Old 06-02-2010, 05:34 PM #23
keep smilin keep smilin is offline
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Grin

Quote:
Originally Posted by bobinjeffmo View Post
If you'll take a look at the photo's I almost didn't decide to share, you'll see that I understand how horrible it is living with peripheral vascular disease because it sounds like we both found the same boat that was mounted on the Titanic.

I'm not really surprised that RSD became one more issue when you've got the incessant circulation problems that usually include infections and even blood clots to name a few. I know and so does everyone else here that you're not some nut who's looking for your next round of drugs and that you're not suffering from a love of spending days at a time in doctor's offices reading dog-eared magazines showing the latest hippie movement as news breaking on the front cover. You're just trying to find solutions.

Vascular diseases are one those really hard nuts to crack illnesses because it's not always just about treatment, but how in the world we live with it that drives us half insane at times. You've spent days, weeks and months I'm betting with physical therapy. Medications seem to only help a bit, but nothing so far has really eradicated these invasive diseases from taking over your life. So now what?

First, stop beating yourself up! It's not your fault so stop shopping for more. It is something that you might just have to learn to live with no matter what stage your at or if worse it progresses, but trust me - you can live with it. One way is by not competing with yesterday and every time you start comparing what you use to call normal compared to what you're living with now, you're only headed down a very dark emotional hallway that leads nowhere. Instead learn to live with what you still have plain and simple, even though there's nothing simple about it whatsoever.

Right now I'm betting that as much as you hate carrying around a purse full of medications, you're going to need to accept that you probably always will. You need better pain management. This first requires you release any prejudices you have against the hard stuff and instead look at harder hitting prescriptions such as narcotics in a bit different light. It wasn't till I started my regimen of OxyContin and OxyIR (plus internal morphine pump) that I was able to find a new normal in life. Before my accident, I wouldn't take an aspirin over a headache because of such adversity against anything in pill form. Once you get your pain under better control you'll then find the means and ways to find solutions you would have never considered in a million years before now.

Secondly, please try and do anything you need to so you don't accidentally strike out against those who love you. While we all have the tendency to hurt those we're the most close too, it only causes more grief in the end. When you're finding yourself bouncing off the walls emotionally, do it alone or get in touch with the gang here, but avoid it in your real world as much as humanly possible. Bridges are easy to burn down but takes years to rebuild so if the doctor advises you to take some form of chill pill - do it. You're at an intersection in life where you've got to trust your doctors and then accept that these most intimate of relationships also take time to forge. Only through time will you hopefully and slowly find yourself in better shape than you are today.

Not is all is lost, it's just different and I'm positive that you will learn how to live this different life that's ahead. I'm here if you need to talk, Bob.
Hey Bob... Your posts are enjoyable..may I call you " I call it as I see it, Bob"?? You are a good guy!!

Kathy
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