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 01-29-2011, 01:31 AM #1
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Default Why I disappeared for awhile....

As some of you may remember, just when we were prepared to begin the trials for the spinal cord stimulator (had gotten approval & all), my medical team instead decided to perform surgery to remove the neuroma that was pressing on my femoral nerve. The surgery itself went wonderfully. By day 2, I was up on a walker and walking. After less than 3 weeks in the hospital, I was sent to a rehab hospital, and only spent a few days there, I was doing so well. I progressed so quickly. I was walking anywhere and everywhere. To be honest, deep down inside, I felt so good that I couldn't help but wonder whether I'd been improperly diagnosed with CRPS initially.

By Thanksgiving, things were continuing to do well. I remember being on my feet much of the day Thanksgiving day, helping with the cooking and such. Then we were up early on Black Friday to shop, although I did take my wheelchair. By the time we got home, I could tell I wasn't feeling "right" but quickly fell asleep. By the time I woke up, I could tell something wasn't right, and down it went.

By Christmas day, I was totally confined to the wheelchair again, and have been ever since. I've since had several more lumbar sympathetic blocks, started Ultram around the clock, added Topamax to my cocktail, started experiencing panic attacks, and tried just about everything possible to get any semblance of sleep possible.

In addition to my regular therapist, I've started seeing another psychologist in the Health Psychology department at the hospital as well who specializes in Pain Management. They are working with me on guided imagery for times when the pain gets out of control.

As for therapy, right now all I can do is aquatic, of course. Hopefully one day I'll be able to work back up to the "real" stuff. When I got a new eval the other day, I asked my therapist how much I'd lost. He told me definitely everything I'd gained since the surgery (which was a significant amount) and perhaps more. That was probably the most heartbreaking part of it all. All that work, all those hours of tears and sweat, for nothing.

So for now, it would appear that I've been handed over to the Pain Management team. Kinda like the end-of-the-road docs, aren't they? Not really, but y'all get what I mean....

Anyway, the plan right now is to finish this course of the LSBs, along with the changes in the medication regime along with the pain psychology to see if we can make any progress. Then, if nothing, we may end up trying the ketamine next rather than the SCS. I'm not sure why yet, I need to ask. I was too busy processing everything to ask, but I will next time around.

Sorry for all the rambling, I just felt like I owed you all an explanation for my sudden disappearance then reappearance months later. Thank you for welcoming me back with open ams. And welcome to all the new faces.
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Old 01-29-2011, 01:44 AM #2
Imahotep Imahotep is offline
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Hang in there and keep fighting.

Welcome back.
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Old 01-29-2011, 04:10 AM #3
gabbycakes gabbycakes is offline
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Quote:
Originally Posted by peppermintpatty View Post
As some of you may remember, just when we were prepared to begin the trials for the spinal cord stimulator (had gotten approval & all), my medical team instead decided to perform surgery to remove the neuroma that was pressing on my femoral nerve. The surgery itself went wonderfully. By day 2, I was up on a walker and walking. After less than 3 weeks in the hospital, I was sent to a rehab hospital, and only spent a few days there, I was doing so well. I progressed so quickly. I was walking anywhere and everywhere. To be honest, deep down inside, I felt so good that I couldn't help but wonder whether I'd been improperly diagnosed with CRPS initially.

By Thanksgiving, things were continuing to do well. I remember being on my feet much of the day Thanksgiving day, helping with the cooking and such. Then we were up early on Black Friday to shop, although I did take my wheelchair. By the time we got home, I could tell I wasn't feeling "right" but quickly fell asleep. By the time I woke up, I could tell something wasn't right, and down it went.

By Christmas day, I was totally confined to the wheelchair again, and have been ever since. I've since had several more lumbar sympathetic blocks, started Ultram around the clock, added Topamax to my cocktail, started experiencing panic attacks, and tried just about everything possible to get any semblance of sleep possible.

In addition to my regular therapist, I've started seeing another psychologist in the Health Psychology department at the hospital as well who specializes in Pain Management. They are working with me on guided imagery for times when the pain gets out of control.

As for therapy, right now all I can do is aquatic, of course. Hopefully one day I'll be able to work back up to the "real" stuff. When I got a new eval the other day, I asked my therapist how much I'd lost. He told me definitely everything I'd gained since the surgery (which was a significant amount) and perhaps more. That was probably the most heartbreaking part of it all. All that work, all those hours of tears and sweat, for nothing.

So for now, it would appear that I've been handed over to the Pain Management team. Kinda like the end-of-the-road docs, aren't they? Not really, but y'all get what I mean....

Anyway, the plan right now is to finish this course of the LSBs, along with the changes in the medication regime along with the pain psychology to see if we can make any progress. Then, if nothing, we may end up trying the ketamine next rather than the SCS. I'm not sure why yet, I need to ask. I was too busy processing everything to ask, but I will next time around.

Sorry for all the rambling, I just felt like I owed you all an explanation for my sudden disappearance then reappearance months later. Thank you for welcoming me back with open ams. And welcome to all the new faces.
Peppermintpatty,

So sorry to here you have come to this point.Keep the faith.
Gabbycakes
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Old 01-29-2011, 09:42 AM #4
Swatgen27 Swatgen27 is offline
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Welcome back and I'm sorry to hear that you have been experiencing a lot of pain. Looking back, the hardest times I have had with fighting this is when I get great pain relief and it only last for a short period of time. My heart goes out to you because I know how hard it is to have such great sucsess and then it just disapeers which leaves a person heart broken. I know that there is no cure for rsd but there are good treatments that assist us in living comfterably in our skin. Please know that with the continuous will to fight this disease you will be able to find another solution that will work for you. I know how hard it is to keep fighting at times but your life is worth the fight. I will be thinking of you and keep us posted as to how everything is going. Also, the group is here for you so that you don't have to go through this battle alone no matter what is going on..meaning it doesn't matter if you are batteling an rsd issue or another issue with your personal life or other health issues.
Sarah
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Old 01-29-2011, 10:34 AM #5
SandyRI SandyRI is offline
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Oh bummer...your story is so heart rending. I am so sincerely sorry for your pain and your loss. Please know that you are in my thoughts and prayers.

Keep us posted...we all care....and never, ever give up.

Much love, Sandy
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Old 01-30-2011, 12:37 AM #6
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Hang in there PP.

This is a setback, but you've just had major surgery.....hopefully after you recover, you'll have less pain than when you started.

My neuro is questioning now if a neuroma is part of my problem.....nothing showed on the MRI, but that;s often not the best to show soft tissue issues. May I ask how they dx'd your's ?

Take Care
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Old 02-04-2011, 01:27 AM #7
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Hang in there PP.

This is a setback, but you've just had major surgery.....hopefully after you recover, you'll have less pain than when you started.

My neuro is questioning now if a neuroma is part of my problem.....nothing showed on the MRI, but that;s often not the best to show soft tissue issues. May I ask how they dx'd your's ?

Take Care
Hi there,

Mine was found on a specialized type of MRI called a MR Neurogram. Try googling MR Neurography + Neuroma and you'll see what I'm talking about.

Hope that helps!
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Old 02-05-2011, 11:37 PM #8
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Hi Pep!

I'm sorry you are hurting now. We are so glad you're back! ( I feel bad for leaving too!) I hope you get relief soon, and hope you can re-gain what you have built up to before. Thinking of you,

Kim
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Old 02-06-2011, 02:59 PM #9
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Hi Pep!

I'm sorry you are hurting now. We are so glad you're back! ( I feel bad for leaving too!) I hope you get relief soon, and hope you can re-gain what you have built up to before. Thinking of you,

Kim
Thank you. I was telling my husband earlier, before, aquatic therapy was more of a diversion. Now, I literally have to use my pain management techniques to get through the pain. I guess that's the progression.

Thank you for the kind thoughts.
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Old 02-08-2011, 10:03 PM #10
Lisa in Ohio Lisa in Ohio is offline
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Sometimes I have even used my Lamaze breathing techniques. I don't know why I think it might help, because I am pretty sure it didn't work for child birth!
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