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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 01-31-2013, 12:00 AM   #31
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Re: RSD diagnosis without pain

I am new to this site, but NOT new to rsd. I got rsd following surgery in 1996. First was frozen shoulder (not diagnosed) but had pt to get range of motion. Then moved to other shoulder and more pt. Then had an injury to hand in 2001 and lost range of motion along with the swelling pain, etc. Became stiff like a board. Was diagnosed with rsd and started pt. tens unit. and densitization 7 days a week.
Eventually was able to get fingers to move like a claw and thats as far as they would go. It is the left hand so the go to about 4 oclock. Like yourself, they can't wrap around anything, and have little strength in that hand much less than the right hand, but that is OK.

Crano, I read all your posts before and after this surgery. I am used to the fingers being frozen and am SO grateful the severe pain is gone. It took time, but did get better. It did move down to both feet and legs-actually fully body. But I no longer have the electrical shocks thru by body or uncontolled spasms -jerks. I believe the high doses of neurotin 3200mg. contributed to that, but no way to know for sure. Crano, how are you doing now? Is the swelling going down any and how is your burning? I still have severe burning in my feet , but the burning in the hands has gone away. So, don't give up hope on your hand.

My latest challenge is my eyes. I'm afraid this nasty thing is in my eyes. Several times a day I have extreme burning, stinging, like razor blades, and extreme tearing. Can't even see when these spells hit me. Anyone have any experience or know of anyone with this? Thanks for listening. darlene

 
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Old 01-31-2013, 02:37 PM   #32
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Re: RSD diagnosis without pain

Darlene,
My fingers go to about 4 o'clock, except my pinky! My burning is there, but not unbearable! Top of my hand and fingers are still swollen, where the plate is on the broken finger swollen and purplish. I've had pain in both shoulders lately, hoping it not RSD!
Wow you have really been going thru a lot!!!
I'm so sorry your going thru that with your eyes! What does the Dr. Say? Have you read about anyone here with those symptoms? I sure wish there was a specialist in this that understood all of this and what to do
Thanks for listening! Will pray for you!
Crano

 
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Old 01-31-2013, 02:39 PM   #33
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Re: RSD diagnosis without pain

Darlene,
My fingers go to about 4 o'clock, except my pinky! My burning is there, but not unbearable! Top of my hand and fingers are still swollen, where the plate is on the broken finger swollen and purplish. I've had pain in both shoulders lately, hoping it not RSD!
Wow you have really been going thru a lot!!!
I'm so sorry your going thru that with your eyes! What does the Dr. Say? Have you read about anyone here with those symptoms? I sure wish there was a specialist in this that understood all of this and what to do
Thanks for listening! Will pray for you!
Crano

 
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Old 01-31-2013, 09:56 PM   #34
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Post Re: RSD diagnosis without pain

Quote:
Originally Posted by Crano View Post
Darlene,
My fingers go to about 4 o'clock, except my pinky! My burning is there, but not unbearable! Top of my hand and fingers are still swollen, where the plate is on the broken finger swollen and purplish. I've had pain in both shoulders lately, hoping it not RSD!
Wow you have really been going thru a lot!!!
I'm so sorry your going thru that with your eyes! What does the Dr. Say? Have you read about anyone here with those symptoms? I sure wish there was a specialist in this that understood all of this and what to do
Thanks for listening! Will pray for you!
Crano
Crano, thank you for the reply. Hope your shoulders calm down and are OK. RSD has been called the hand-shoulder syndrome in the past. My RSD traveled from frozen shoulder to hand. and Mirror Type from one shoulder to the other- so just pay attention to your body.
One thing that you may ask your pt people- I was in pt 3 times a week too, and they had me desensitize my hand at home by getting several plastic bowls and putting cotton balls in one, sugar or coffee grounds in another, rice in another and so forth just different textures and run my hands thru. The hand was so sensitive to touch and this helped me grately to desensitize and get used to using it.
I haven't been to an eye Doc yet. Today is better for eyes than last couple of nights, thank you. There are docs out there that do understand this. I have had some good ones. I am no where near the pain of in the beginning back in the 90's. In fact, other than my eyes, it's just the burning pain in my feet. The high body temperature or freezing cold hands and feet. It seems either the feet are burning up or freezing cold. But that's part of this disorder.
I no longer have the electrical pain or shooting stabbing pain.
Hope this evening finds you well and able to sleep. darlene

 
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Old 02-04-2013, 05:04 PM   #35
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Re: RSD diagnosis without pain

Darlene, I have never experienced it in the eyes but I was just reading today about how it can affect your eyes. Somebody wrote on here before to research the sympathetic nervous system since that is what this disorder attacks. Google RSD and the sympathetic nervous system.

 
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Old 02-04-2013, 07:28 PM   #36
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Re: RSD diagnosis without pain

Been so busy I haven't shown up much here lately. But I'm so grateful for you guys.

Went to pain management doc over a week ago. HE WOULD NOT EVEN SEE ME! The "Nurse Practitioner" said he doesn't see patients unless they are having a procedure (epidural/ablation/nerve block, etc). Not only that, but she said I'd have to get another series of MRI's (I just had 6 x-rays and a CT scan!), a nerve conduction and EMG (had this done 2009 and nothing found, was in severe pain for 3 wks after, not doing it again; they can use results from 2009), and I had to FAIL Physical Therapy. Uhm...my hope is to SUCCEED at physical therapy, dip wad! :P to Nurse Practitioner.

So I learned absolutely NOTHING at that appointment and it was a waste of time. Then got stuck in a snowstorm driving home. Ugh.

So I'm trying to get another doctor to deal with the CRPS issue. I was entirely dissatisfied with that one. Not planning to go back.

Started Physical Therapy. Twice a week, but I've already been doing my own exercises at home. Feels like I am making very slow progress. Not having as many awful days as the last few months. But headaches almost daily. Gratefully, my PT doesn't seem interested in touching my legs a whole lot, for which I'm really grateful. Whew do I break out in a sweat when someone touches my legs!!

Tiem for me to work on desensitization. Egads.

GutsyGirl

 
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Old 02-04-2013, 08:44 PM   #37
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Re: RSD diagnosis without pain

Gutsy Girl,
Try using rice, sand, etc to help with desensitation. I'm sorry your appointment went the way it did. Hopefully next doctor will be better.

 
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