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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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Unread 02-16-2013, 11:55 PM   #1
Kymmie67
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Hey all....I'm new to the forum, fairly new to CRPS and completely new to this intense burning, believe it or not.

Here's a bit of my story.

I had knee surgery in April for torn meniscus, then again in June because of pain that wouldn't go away. He removed plica, scar tissue and shaved down some bone spurs.
Pain would never go away....suffice it to say, I was diagnosed with CRPS in August 2012. Skin sensitive, pain in my knee, etc...I never really had the intense burning everyone talks about. Till now. On December 21, I had my 2nd femoral nerve block, took the cath out on Christmas Eve. Still numb leg, still on crutches, I fell in the middle of a pet store...flat on my face. Strained my sartorious muscle in my thigh and now I have numb/pain, tingling and burning. And just the last couple of days it's been really burning higher on my thigh and last night it started moving around to my butt cheeks.

Here's my question...is it normal progression of CRPS to have a patch of skin here and there burn for a few minutes and stop, then burn again and stop? It's kind of all over that its doing this. For instance, a spot on my stomach and back, then outer arms, chest, etc. I am worried that its spreading extremely fast!

Any thoughts or suggestions?

Thank you so much and I will try to post an intro sometime soon.
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Unread 02-17-2013, 03:22 AM   #2
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Quote:
Originally Posted by Kymmie67 View Post
Hey all....I'm new to the forum, fairly new to CRPS and completely new to this intense burning, believe it or not.

Here's a bit of my story.

I had knee surgery in April for torn meniscus, then again in June because of pain that wouldn't go away. He removed plica, scar tissue and shaved down some bone spurs.
Pain would never go away....suffice it to say, I was diagnosed with CRPS in August 2012. Skin sensitive, pain in my knee, etc...I never really had the intense burning everyone talks about. Till now. On December 21, I had my 2nd femoral nerve block, took the cath out on Christmas Eve. Still numb leg, still on crutches, I fell in the middle of a pet store...flat on my face. Strained my sartorious muscle in my thigh and now I have numb/pain, tingling and burning. And just the last couple of days it's been really burning higher on my thigh and last night it started moving around to my butt cheeks.

Here's my question...is it normal progression of CRPS to have a patch of skin here and there burn for a few minutes and stop, then burn again and stop? It's kind of all over that its doing this. For instance, a spot on my stomach and back, then outer arms, chest, etc. I am worried that its spreading extremely fast!

Any thoughts or suggestions?

Thank you so much and I will try to post an intro sometime soon.
I am also new to this, so I don't know much. But I also get these. It started in my left ankle after surgery and has spread to my entire leg. I get "hot spots" in different areas at different times that burn for a few minutes sometimes. And sometimes my whole leg will burn. I also worry about it spreading so fast. I was just diagnosed in Sept. 2012, my surgery was in Aug. When I get these hot spots I will also get cold spots sometimes at the same time in different spots. Does this also happen to you?
Angelina
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Unread 02-17-2013, 09:29 PM   #3
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Quote:
Originally Posted by Kymmie67 View Post
Hey all....I'm new to the forum, fairly new to CRPS and completely new to this intense burning, believe it or not.

Here's a bit of my story.

I had knee surgery in April for torn meniscus, then again in June because of pain that wouldn't go away. He removed plica, scar tissue and shaved down some bone spurs.
Pain would never go away....suffice it to say, I was diagnosed with CRPS in August 2012. Skin sensitive, pain in my knee, etc...I never really had the intense burning everyone talks about. Till now. On December 21, I had my 2nd femoral nerve block, took the cath out on Christmas Eve. Still numb leg, still on crutches, I fell in the middle of a pet store...flat on my face. Strained my sartorious muscle in my thigh and now I have numb/pain, tingling and burning. And just the last couple of days it's been really burning higher on my thigh and last night it started moving around to my butt cheeks.

Here's my question...is it normal progression of CRPS to have a patch of skin here and there burn for a few minutes and stop, then burn again and stop? It's kind of all over that its doing this. For instance, a spot on my stomach and back, then outer arms, chest, etc. I am worried that its spreading extremely fast!

Any thoughts or suggestions?

Thank you so much and I will try to post an intro sometime soon.
Everyone is different with how their crps progresses. With that said, I believe mine has been helped with medication and treatments. You didn't mention what meds you are on or what other treatments they tried for you. That can make a difference in the speed of progression.
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Unread 02-18-2013, 12:55 AM   #4
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Angelina....I haven't really noticed the cold spots happen like the hot spots do. I do, however, notice that the one side most affected by CRPS does get colder than usual every now and then.

Reluctant...I initially was sent to pt by my ortho doc who is the one who diagnosed me in the first place. He told me that if that did not significantly reduce the symptoms or rather, the severity of the symptoms, then I was to immediately go see the pain doc. Pt did absolutely zilch so off to pain management. The dr put me on gabapentin to start with, and started me on the road with my idiotic insurance co for a sympathetic nerve block.

Insurance denied the block stating that I had not met all the requirements for "medical necessity". So, I paid out of pocket for that one. Started imipramine, then after I'd been on that for the required four weeks (per insurance), I had another block done. Switched to Cymbalta, had a third block.

These blocks would help for a couple of days, if that, and then pain was back full force. We decided to try a femoral nerve block. The first one was accidentally pulled out of place after a few hours, so we did another a week later. That's when I fell (christmas Eve) and injured the muscle in my thigh and things have been going downhill ever since.

I've been taking ambien for several years, so that has helped with the sleep problem, but I also take Percocet for pain. It didn't seem as though that was helping all that much until I was running low and had to ration myself. My Rx said one 7.5/325 every six hours. Well, I had to take every four. Not good, so I was running out before I could get another Rx. So, I found out that the Percocet was doing at least something to help.

So, that's what we've done. What do you think?

Thanks.
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Unread 02-18-2013, 03:12 AM   #5
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I can barely type, but I will tell you mine spread to become systemic within a matter of weeks.
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Unread 02-19-2013, 12:40 AM   #6
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Reluctant...I initially was sent to pt by my ortho doc who is the one who diagnosed me in the first place. He told me that if that did not significantly reduce the symptoms or rather, the severity of the symptoms, then I was to immediately go see the pain doc. Pt did absolutely zilch so off to pain management. The dr put me on gabapentin to start with, and started me on the road with my idiotic insurance co for a sympathetic nerve block.

Insurance denied the block stating that I had not met all the requirements for "medical necessity". So, I paid out of pocket for that one. Started imipramine, then after I'd been on that for the required four weeks (per insurance), I had another block done. Switched to Cymbalta, had a third block.

These blocks would help for a couple of days, if that, and then pain was back full force. We decided to try a femoral nerve block. The first one was accidentally pulled out of place after a few hours, so we did another a week later. That's when I fell (christmas Eve) and injured the muscle in my thigh and things have been going downhill ever since.

I've been taking ambien for several years, so that has helped with the sleep problem, but I also take Percocet for pain. It didn't seem as though that was helping all that much until I was running low and had to ration myself. My Rx said one 7.5/325 every six hours. Well, I had to take every four. Not good, so I was running out before I could get another Rx. So, I found out that the Percocet was doing at least something to help.

So, that's what we've done. What do you think?

Thanks.[/quote]

I don't really know anything about a femoral block. I did have an epidural block after my lumbar sympathetic blocks failed and that gave me pain relief for the time it was in but quickly wore off. However, I was able to regain some range of motion in my foot.

My PM doctor doesn't believe in narcotics. I may not be remembering this completely but something like narcotics don't work on "our" type of pain so well. I've been on Cymbalta, losartin for my high blood pressure that's developed since crps, Ketamine (with other ingredients in it) cream, just started on lyrica for the nerve pain (love it), tizanidine for muscle cramps at bedtime (makes me sleepy), ketamine nasal spray also at bedtime because it also makes me sleepy, and tramadol as needed for breakthrough pain.

I had my first Ketamine 3 day infusion back in Sept. Initially, I didn't think it helped but after a few days, I felt a lot better. However, I believe I overdid it and my pain returned to the levels I had before the infusion. I'd like to have another series but I have to save up the $$$$ for that.

I also try to keep up with exercise in the pool. I've been able to voluteer full-time.

I think my early treatments by my specialist has helped.

I hope you can find some relief.
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Unread 02-19-2013, 06:57 AM   #7
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Quote:
Originally Posted by Kymmie67 View Post
Angelina....I haven't really noticed the cold spots happen like the hot spots do. I do, however, notice that the one side most affected by CRPS does get colder than usual every now and then.

Reluctant...I initially was sent to pt by my ortho doc who is the one who diagnosed me in the first place. He told me that if that did not significantly reduce the symptoms or rather, the severity of the symptoms, then I was to immediately go see the pain doc. Pt did absolutely zilch so off to pain management. The dr put me on gabapentin to start with, and started me on the road with my idiotic insurance co for a sympathetic nerve block.

Insurance denied the block stating that I had not met all the requirements for "medical necessity". So, I paid out of pocket for that one. Started imipramine, then after I'd been on that for the required four weeks (per insurance), I had another block done. Switched to Cymbalta, had a third block.

These blocks would help for a couple of days, if that, and then pain was back full force. We decided to try a femoral nerve block. The first one was accidentally pulled out of place after a few hours, so we did another a week later. That's when I fell (christmas Eve) and injured the muscle in my thigh and things have been going downhill ever since.

I've been taking ambien for several years, so that has helped with the sleep problem, but I also take Percocet for pain. It didn't seem as though that was helping all that much until I was running low and had to ration myself. My Rx said one 7.5/325 every six hours. Well, I had to take every four. Not good, so I was running out before I could get another Rx. So, I found out that the Percocet was doing at least something to help.

So, that's what we've done. What do you think?

Thanks.

I also take ambien for sleep, but I take it only sometimes. I mostly take trazadone for sleep and it usually helps. Except for days like tonight when I wake up from too much pain. For me narcotics work alot! I know that some doctors say they don't help our pain but they do for me. I am on Lyrica and just started Gababapentin. I also started taking lots of certain types of vitamins and I can see a big difference!
I was getting Lumbar sympathetic blocks and they would help. I would have to get them in threes though. Then for some reason I got one and everything went downhill fast! It spread to my entire leg and symptoms got worse. So they have stopped that for now. I need to find a neurologist. One doctor to 'oversee' my 'case'. Right now everything seems like chaos, having three doctors all telling you what to do, handling your meds, and treatments, is so confusing.
I do know that Physical Therapy is so important for us. It is not meant to take the pain away. It is so that we don't become immobilized. We have to make sure we keep our joints and body parts moving and strengthened.
I haven't tried Cymbalta, because I get really bad mood swings on it. It reacts with my previous depression. But I have heard from others that they love it.
This disease is so difficult on us becuase mostly everything is trial and error. You just research and talk on forums like this one to hear from others, and then start your own trial and error until you find what works for you. This is your journey though so take control. Keep a book of everything. Write down what works and what doesn't, keep a pain diary or a diary of just how you are feeling every day, keep track of your blood work and test results so you can see what is happening with yourself.
I hope this helps! I wish you luck and may you find what you need soon!
Angelina
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Unread 02-19-2013, 09:40 PM   #8
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Thank you so much for the responses. Everything is very helpful.

I did do the physical therapy, but my stupid insurance only pays for 10 visits per calendar year! Copays are $60 so by the time I've used up my ten visits, I'm into it for $600. I simply can't afford that. I tried just riding a stationary bike, but holy cow!! That put me in so much pain for a couple of days! I just don't know what to do.

I turned in a paper today for a handicap tag...I just can't walk very far, and when I try, I pay for it later....in spades!!

I think I'm going to have to get my gabapentin dosage increased or something. I don't want to up the Percocet at all, which does work for the most part. If I let it get out of hand, I have a hard time getting control again.

I am getting shooting, burning pains like someone is branding me! Don't know what to do about that...maybe there's nothing I [i]can[i] do. Any tricks I can use?

Also, I've heard some really bad horror stories about cymbalta, so I'm going to get on a program to taper down and take something else instead. Not sure what else to do.

Oh, and are there any suggestions for a five hour road trip? I'm leaving on Thursday and a short trip is hard enough. Any tricks/suggestions/ideas would be very welcome.

So, this post is probably all over the place, but I guess it gets my info out there.

Thanks everyone!
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Unread 02-24-2013, 11:09 PM   #9
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Well, things are definitely worse. I'm afraid I'm experiencing what I've seen referred to here as "spread".
Today has been nonstop burning in my right leg, which is nothing new, but now it's in both butt cheeks and in my left thigh. Also, my stomach is burning more often than not. Shooting pains from my knee up into my thigh. I couldn't stay at church today because it hurt like the devil to sit there. Lying or sitting reclined on the couch at home wasn't much better! It felt like I was sitting on the worst sunburn ever!
My doctor recently increased my gabapentin dose to 900 mg 3x daily. I was on 600 before that. I thought it was helping with the burning until today.
Do I call him tomorrow, or just see what tomorrow brings first? Also, he prescribed Zanaflex for muscle spasms, but told me if I take it one day, I should skip the next day. That seems strange since the bottle says I can take it every 8 hours as needed. I don't get it!

Not sure what to do when I go to bed. I have to keep getting up and moving around even though that hurts just as badly. I take ambien every night, but it's not doing its job very well unless I stay up really late and am so tired I can hardly keep my eyes open. That means around 1:00-2:00am for me. I know sleep is something I really need, but I'm just not able to get it.

Any thoughts, ideas and/or suggestions are greatly appreciated!

Thanks!
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