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 11-11-2013, 06:34 PM #1
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Default Is it really crps?

Im new here....a year ago i was in a minor car accident, i had a shoulder injury that i sought PT for. Underwent an mri on my shoulder after therapy helped my movement and strength, but pain was still there. mri showed no tears, and PT said hopefully pain will go away. A few months later i went to an ortho specialist who decided to mri my neck, and found i had three buldging disk, but nothing that needed surgery and should not be causing the pain i was having.

I had cortizone shots and a spinal injection which did nothing. I was taking gabentin which i could not tolerate as a full time mom and business owner and it did nothing for the pain. I was then referred to a neurolgist. He did a nerve study which came back normal, however he diagnosied me with crps type ii.
I have been taking clodine and amatryptline (sp). I thought at first it wasworking as i didnt have constant pain, but still daily pain. I continued to take the meds, but the pain had gotten more intense and goes froma burning, stabbing, to icy cold, and it used to be just in my left shoulder and down my arm, but has now in the past few days started to include further up my neck and deep into my left ear.

I do NOT have discolorex skin, nor the skin sensitivity to touch that i have read about. I have started to get very brittle nails that break and peel way up on the nailbed. I am wondering since i dont have all the symptoms, is this really crps?

I run a very stressful business at this time of year, and i dont have time for all this, i really want a better diagnosis....the doctor really didnt give me much hope that i would have any pain free days without the use of heavy medicines or surgical procedures...im still working on trying to prove him wrong
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Old 11-11-2013, 07:03 PM #2
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Quote:
Originally Posted by Ozzieace View Post
Im new here....a year ago i was in a minor car accident, i had a shoulder injury that i sought PT for. Underwent an mri on my shoulder after therapy helped my movement and strength, but pain was still there. mri showed no tears, and PT said hopefully pain will go away. A few months later i went to an ortho specialist who decided to mri my neck, and found i had three buldging disk, but nothing that needed surgery and should not be causing the pain i was having.

I had cortizone shots and a spinal injection which did nothing. I was taking gabentin which i could not tolerate as a full time mom and business owner and it did nothing for the pain. I was then referred to a neurolgist. He did a nerve study which came back normal, however he diagnosied me with crps type ii.
I have been taking clodine and amatryptline (sp). I thought at first it wasworking as i didnt have constant pain, but still daily pain. I continued to take the meds, but the pain had gotten more intense and goes froma burning, stabbing, to icy cold, and it used to be just in my left shoulder and down my arm, but has now in the past few days started to include further up my neck and deep into my left ear.

I do NOT have discolorex skin, nor the skin sensitivity to touch that i have read about. I have started to get very brittle nails that break and peel way up on the nailbed. I am wondering since i dont have all the symptoms, is this really crps?

I run a very stressful business at this time of year, and i dont have time for all this, i really want a better diagnosis....the doctor really didnt give me much hope that i would have any pain free days without the use of heavy medicines or surgical procedures...im still working on trying to prove him wrong
I'm sorry you are having this pain!! My first question would be if you have seen a Neurosurgeon? I know you mentioned a neurologist but a Neurosurgeon is who you would want to consult with for cervical spine issues especially if the bulging discs are putting pressure on your nerves. An ortho would not be as qualified to interpret these results and relying only on MRI reports is not always a good idea either. I had a very successful 2 level cervical laminectomy/foraminotomy after my head on collision and my only regret was that I had put it off due to fear and suffered way to long. I was immediately better and have had no further symptoms or issues since the procedure just over a year ago - this of course was before I ended up with CRPS II after several complex hip operation. Did they say which nerve was the cause of your CRPS II? In order to make that diagnosis they rely on objective findings of a specific nerve(s) injury/damage?

It isn't necessary to have all of the symptoms to be suffering from CRPS. In your shoes I would certainly seek second and 3rd opinions but keep in mind not all doctors are familiar with CRPS so you may get conflicting diagnosis anyways. I think with CRPS II (at least from what my doctors have said) that it is much easier to diagnose because they can identify the nerve injury unlike with CRPS I or RSD. You might also ask why they diagnosed CRPS II that way if you missed anything during your appointment they can further clarify what you missed.. lol.. we often don't always hear everything being said during quick appointments.

Keep up with that attitude of proving him wrong.. no matter what the diagnosis is that kind of mentality will help you in the long run!
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Old 11-11-2013, 07:32 PM #3
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Hi and welcome. I'm sorry you're in so much pain. I was diaganosed with CRPS I in my right wrist two and a half years agao. Not everyone gets the same symptoms per my pm dr. I would get second opinions from another neurologist and pm dr. I had the deep aching cold pain for the first few years. The burning pain just started for me about six months ago after rsd spread started to happen. I hope you feel better soon. Take care.
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Old 11-11-2013, 08:02 PM #4
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Originally Posted by zookester View Post
I'm sorry you are having this pain!! My first question would be if you have seen a Neurosurgeon? I know you mentioned a neurologist but a Neurosurgeon is who you would want to consult with for cervical spine issues especially if the bulging discs are putting pressure on your nerves. An ortho would not be as qualified to interpret these results and relying only on MRI reports is not always a good idea either. I had a very successful 2 level cervical laminectomy/foraminotomy after my head on collision and my only regret was that I had put it off due to fear and suffered way to long. I was immediately better and have had no further symptoms or issues since the procedure just over a year ago - this of course was before I ended up with CRPS II after several complex hip operation. Did they say which nerve was the cause of your CRPS II? In order to make that diagnosis they rely on objective findings of a specific nerve(s) injury/damage?

It isn't necessary to have all of the symptoms to be suffering from CRPS. In your shoes I would certainly seek second and 3rd opinions but keep in mind not all doctors are familiar with CRPS so you may get conflicting diagnosis anyways. I think with CRPS II (at least from what my doctors have said) that it is much easier to diagnose because they can identify the nerve injury unlike with CRPS I or RSD. You might also ask why they diagnosed CRPS II that way if you missed anything during your appointment they can further clarify what you missed.. lol.. we often don't always hear everything being said during quick appointments.

Keep up with that attitude of proving him wrong.. no matter what the diagnosis is that kind of mentality will help you in the long run!
I am not really sure if he is a neuroligist or a neurosurgeon, but he is said to be the best in the area.

Three different doctors have told me that the buldging disks in my neck would not be causing the pain i am having. I do remember that the neurologist said the nerve study was normal, but he thought the crps type ii was caused from the shoulder injury i had, possibly the brackial plexus (sp).

Basically at the last appointment he told me he would try a different medicine if the clodine and amitryptine combine was not working (and its not) and if that was unsucessful he would referr me back to the previous orthopedic group doctors, for pain management. That was the only hope he gave me...pain management.
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Old 11-11-2013, 08:28 PM #5
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Originally Posted by Ozzieace View Post
I am not really sure if he is a neuroligist or a neurosurgeon, but he is said to be the best in the area.

Three different doctors have told me that the buldging disks in my neck would not be causing the pain i am having. I do remember that the neurologist said the nerve study was normal, but he thought the crps type ii was caused from the shoulder injury i had, possibly the brackial plexus (sp).

Basically at the last appointment he told me he would try a different medicine if the clodine and amitryptine combine was not working (and its not) and if that was unsucessful he would referr me back to the previous orthopedic group doctors, for pain management. That was the only hope he gave me...pain management.
I would seek more opinions! Follow through with whatever recommendations but also seek out an additional orthopedic surgeon who specializes with brachial plexus injuries and a neurosurgeon who can fully evaluate your cervical spine.. trust me even the very best doctors can make mistakes. At least that is what I would do in your shoes.
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Old 11-11-2013, 08:29 PM #6
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I hope your Auto Accident case isn't closed if it is CRPS!! Err on the side of caution if it isn't closed and get a lawyer if you don't already have one. CRPS is a long painful and financially stressful journey.
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Old 11-11-2013, 08:56 PM #7
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You don't have to have all of the symptoms. Also I think we have all found some symptoms come and go sometimes. There also seems to be a lot of other symptoms or things effected by thus wonderful monster that are not listed as symptoms.

Unfortunately I don't think any of us had/have time for this! It just gets dropped on you. For the most part I seek my pain being controlled enough so I am not crying or miserable with pain.
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Old 11-11-2013, 09:49 PM #8
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The actual injury that i had has healed. I have full use of my arm/shoulder with hust a little clicking feeling when rotating. Its just the burning, stabbing, swelling, etc, left behind.

The auto accident happened when a car ran the stop sign and hit me in the passanger back panel....case is not closed, but im stuck with all the medical bills until we get it setteled...could be years from now.
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Old 11-11-2013, 10:12 PM #9
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It might benefit you to read about thoracic outlet syndrome (TOS), it can happen after a shoulder/neck/ upper body injury..

The useful stickys on our TOS forum would be a good place to start, you might find more related symptoms to what you are having..
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread125577.html
http://neurotalk.psychcentral.com/thread135.html

and the main TOS page -
http://neurotalk.psychcentral.com/forum24.html
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Old 11-11-2013, 10:22 PM #10
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Quote:
Originally Posted by Ozzieace View Post
The actual injury that i had has healed. I have full use of my arm/shoulder with hust a little clicking feeling when rotating. Its just the burning, stabbing, swelling, etc, left behind.

The auto accident happened when a car ran the stop sign and hit me in the passanger back panel....case is not closed, but im stuck with all the medical bills until we get it setteled...could be years from now.
Trust me I understand!! My CRPS II was also caused indirectly by a head on collision I was in. I endured 10 surgeries (and recovered remarkably well) until.. the nerve injury on what was to be my last surgery caused the CRPS to take hold. It can be a long time but especially in light of the possible CRPS you do not want to settle until it is properly diagnosed and your Lawyer understand the long term issues both physical and financial due to CRPS.

I second what Jo*Mar suggested about looking into TOS both cervical spine issues and TOS can mimic symptoms of CRPS and or brachial plexus injuries.

Wishing you the best possible outcome!
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