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 04-16-2010, 10:24 PM #1
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Default Newbie/dumb questions

Hi
Please forgive a newbies dumb questions, I may not be on the right board! A bit of history on me, I've had 4 level cervical fusion, and my scapular area gives me fits. My entire spine is a mess. I have confirmed arthritis in several joints.

So on a recent visit to my PCPs office, I told him I hurt all over, my skin sometimes hurts. Nothing specific, not screaming take me to the ER type pain, no rhyme or reason to it. He says maybe I have fibro.

An hour later, I'm at the pain doc. Tell her the same thing. She says difuse arthritis. Try to search them both, came up with RA or fibro.

What are the main symptoms of RSD? Lurking here, what people are posting makes more sense to me than what the docs say. How is it Dx'd? Trial & error?

As for meds, I can't do the Lyrica types, random drug tests at work prevent any narcotics, except for 1/2 vicoden once in a while, neurontin, too much brain fog. Basically, I'm on a very low dose of Cymbalta and a lot of tears.

Am I at the right place?
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Old 04-16-2010, 10:39 PM #2
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Quote:
Originally Posted by aussiemom View Post
Hi
Please forgive a newbies dumb questions, I may not be on the right board! A bit of history on me, I've had 4 level cervical fusion, and my scapular area gives me fits. My entire spine is a mess. I have confirmed arthritis in several joints.

So on a recent visit to my PCPs office, I told him I hurt all over, my skin sometimes hurts. Nothing specific, not screaming take me to the ER type pain, no rhyme or reason to it. He says maybe I have fibro.

An hour later, I'm at the pain doc. Tell her the same thing. She says difuse arthritis. Try to search them both, came up with RA or fibro.

What are the main symptoms of RSD? Lurking here, what people are posting makes more sense to me than what the docs say. How is it Dx'd? Trial & error?

As for meds, I can't do the Lyrica types, random drug tests at work prevent any narcotics, except for 1/2 vicoden once in a while, neurontin, too much brain fog. Basically, I'm on a very low dose of Cymbalta and a lot of tears.

Am I at the right place?
I am new to RSD so cannot comment much but I am not new to scapular pain. Where is your shoulder/scapaular pain? Can you describe it? I only ask because my RSD is caused by a rare form of shoulder impingement which is underdiagnosed. Mine does radiate to my neck but the pain is sourced to the shoulder.

Its called a suprascapular impingement. Mine was finally dx'd by MRI, ultrsound and EMG. Unfortunatley it took so long the shoulder has developed RSD from an injury and a bad shot in the injured area.

Right now I am on Ultam ER and use a triple numbing cream in the area.
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Old 04-16-2010, 10:46 PM #3
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In our useful sticky thread there are quite a few site links with descriptions of RSD /CRPS.
http://neurotalk.psychcentral.com/thread247-2.html

That might be a good place to start for the specifics & finding the diagnostic criteria.

Sometimes weekends are not as active posting wise so it will give you something to read until more can reply.

There's also a RSD Photos and Pictures Thread in the sticky section, those might be helpful also.


thanks Shelley.
that was what I wanted to ask Barb also- the pain location & description...part
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Old 04-16-2010, 10:59 PM #4
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Clarifying on the random drug testing issue.....

Drug tests don't necessarily mean that you can't take prescribed narcotics to treat a medical condition. In that case, a doctor's note should suffice.

Random drug tests mean you can get fired for taking RECREATIONAL drugs.

If you are not allowed to work under the influence of narcotics....say, by operating heavy machinery, then maybe it means you should not be working.
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Old 04-16-2010, 11:05 PM #5
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How would you describe your pain ? Achy ? Shooting ? Burning ?

Do you have extreme sweating in the painful areas ?

Is the skin hot to the touch ? Is it red or shiny ?

Does hair in the area not grow or grow too much ?

Can you tolerate touch/clothes/etc ?
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Old 04-17-2010, 06:03 PM #6
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Hi
The pain is a dull ache, usually all over. No sweating in the area, nor hot or red. Sometimes clothes, bedding, or just touching my skin hurts. I never know what will cause the pain to go up.

I plan on retiring in Nov. The drug test thing is a random, and even if you have the docs Rx, my employer gives you a REALLY REALLY hard time about it. Sure, people have been caught doing weekend drugs, but the legal stuff, with a script, should be OK. Even if you have a cold, with a bad cough, and doc writes codine, you are in trouble.

The scapular area, is scoliosis, khyphosis, radicuopathy. It goes into my neck, my shoulders, it burns, stabs, shoots, I don't know how else to describe it. I have done cortisone injections there, and now do Botox. Neither work real well, and I don't know what's next. I would like a SCS, but not sure if I'm ready for it. I like my TENS, but the wires are a nusiance.

I'll check out the stickies, thanks
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Old 04-17-2010, 08:24 PM #7
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Hi Barb,

I see you live in Florida, where in Florida do yo live? I live in Tampa. If you are close I can give the name of a good doctor to go to for a diagnosis. I am sorry for your pain.

Sandy

Quote:
Originally Posted by aussiemom View Post
Hi
The pain is a dull ache, usually all over. No sweating in the area, nor hot or red. Sometimes clothes, bedding, or just touching my skin hurts. I never know what will cause the pain to go up.

I plan on retiring in Nov. The drug test thing is a random, and even if you have the docs Rx, my employer gives you a REALLY REALLY hard time about it. Sure, people have been caught doing weekend drugs, but the legal stuff, with a script, should be OK. Even if you have a cold, with a bad cough, and doc writes codine, you are in trouble.

The scapular area, is scoliosis, khyphosis, radicuopathy. It goes into my neck, my shoulders, it burns, stabs, shoots, I don't know how else to describe it. I have done cortisone injections there, and now do Botox. Neither work real well, and I don't know what's next. I would like a SCS, but not sure if I'm ready for it. I like my TENS, but the wires are a nusiance.

I'll check out the stickies, thanks
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Old 04-17-2010, 10:34 PM #8
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How does Dunedin sound? Close enough? LOL!!! I am currently seeing Lynn Columbus for pain, have seen LeeAnn Brown from Fl Spine for pain. Fl Spine has moved to another hospital south of me, I don't like it as well, so prefer to stay north county. Tampa is pretty much of a hike for me, is your doc on the west side of Hillsborough?

I did check out the stickies and pics, I get the swelling in my feet, but not the discoloration. No red sores. I do get a prickly heat type of rash. Last winter I had a hard time keeping my feet warm, some of you who think FL is always warm may have a hard time with that!! I finally put a heating pad on the bed, and that helped. It has a timer on it. I never had that problem before. My hands don't get freezing cold, but cool enough so my rings swing. They can ache, like the rest of me.
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