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 10-21-2013, 11:47 PM #1
painman2009 painman2009 is offline
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Default oddity. anyone else?

since my injuries started piling up, I have noticed that I must concentrate hard to get my feet to listen to my commands, sometimes I go to move one toe and another one moves instead or I try to move the foot left and right but it goes up and down instead.(always in pain no matter what happens) is this odd or what .. any one else have this issue?
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Old 10-22-2013, 07:58 AM #2
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Yes, I've had a weird thing a couple of times where it's like I can't remember which foot is which. It happened once in the car when I was reversing out of a space and I just froze for a second trying to think which foot I shood be using. It completely freaked me out. Also occasionally my foot hasn't come down the way i meant - in a rush, clumsily. I've also had problems with my hands sometimes when playing the piano - I've been playing for years, but every now and then I just suddenly find myself stuck in a way I never have been before, like my hands are confused, or my brain has short-circuited.

I hate this side of the disease. Like it hasn't taken enough from us already....

You're not alone with this, I think it's more common than we perhaps like to admit.

Bram.
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Old 10-22-2013, 11:19 AM #3
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My fingers don't work very well either, I say it's just a crps effect
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Old 10-22-2013, 12:39 PM #4
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When I was still working, I would stand up at my desk to leave my office and I couldn't walk...this happened many times. It was like I couldn't get my RSD leg to engage...it just wouldn't move. Sometimes my hands "forget" how to work too. Frustrating, but all part of this "wonderful" condition we suffer with...
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Old 10-22-2013, 04:59 PM #5
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A BIG part of my physical therapy when things got REALLY bad and I was in a wheel chair revolved around this. I really do have to concentrate hard to walk correctly and get my feet to go where they are supposed to go. It's gotten easier...but especially when I am in a flare I still struggle with this.
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Old 10-22-2013, 07:11 PM #6
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Hi. I don't remember ever having that happen to me, but I do have numbness and pins and needles in my hands and feet usually in the morning. Sometimes I have no feeling at all in my hands and feet when I wake up. It wears off after about 15 minutes to 1/2 hour and doesn't happen everyday, but enough to cause irritation.
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Old 10-23-2013, 01:39 PM #7
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Yes, one time I had my leg not move at all. Had to hop on the other leg to sit down and wait. My fingers often don't want to cooperate, they fumble up. I have to stop and slow down, rest to get them to work good enough again.
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Old 10-28-2013, 06:41 PM #8
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I have read a fair amount about impaired limb awareness (sometimes referred to as "ownership") in CRPS. Here are citations that you can google to see abstracts:

• Kolb L, Lang C, Seifert F, Maihöfner C. Cognitive correlates of “neglect-like syndrome” in patients with complex regional pain syndrome. Pain. 2012;153(5):1063–73.

• Moseley GL, Flor H. Targeting cortical representations in the treatment of chronic pain: a review. Neurorehabil. Neural Repair. 2012;26(6):646–52.

• Lewis JS, Kersten P, McPherson KM, et al. Wherever is my arm? Impaired upper limb position accuracy in complex regional pain syndrome. Pain. 2010;149(3):463–9. Available at:

• Punt TD, Cooper L, Hey M, Johnson MI. Neglect-like symptoms in complex regional pain syndrome: learned nonuse by another name? Pain. 2013;154(2):200–3.

Quote:
Originally Posted by painman2009 View Post
since my injuries started piling up, I have noticed that I must concentrate hard to get my feet to listen to my commands, sometimes I go to move one toe and another one moves instead or I try to move the foot left and right but it goes up and down instead.(always in pain no matter what happens) is this odd or what .. any one else have this issue?
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Old 10-30-2013, 08:42 PM #9
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Quote:
Originally Posted by BraveGirl View Post
I have read a fair amount about impaired limb awareness (sometimes referred to as "ownership") in CRPS. Here are citations that you can google to see abstracts:

• Kolb L, Lang C, Seifert F, Maihöfner C. Cognitive correlates of “neglect-like syndrome” in patients with complex regional pain syndrome. Pain. 2012;153(5):1063–73.

• Moseley GL, Flor H. Targeting cortical representations in the treatment of chronic pain: a review. Neurorehabil. Neural Repair. 2012;26(6):646–52.

• Lewis JS, Kersten P, McPherson KM, et al. Wherever is my arm? Impaired upper limb position accuracy in complex regional pain syndrome. Pain. 2010;149(3):463–9. Available at:

• Punt TD, Cooper L, Hey M, Johnson MI. Neglect-like symptoms in complex regional pain syndrome: learned nonuse by another name? Pain. 2013;154(2):200–3.
J Pain Symptom Manage. 1999 Sep;18(3):213-7.
Neglect-like symptoms in complex regional pain syndrome: results of a self-administered survey.
Galer BS, Jensen M.
Source
Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, New York, New York 10003, USA.
Abstract
Reflex sympathetic dystrophy (RSD), recently reclassified as a complex regional pain syndrome, type I (CRPS-I), is best known for its disabling sensory symptoms, including pain, allodynia, and abnormal skin temperature. Yet, motor dysfunction is common in CRPS and can result in major disability. In addition to weakness of the involved limb, CRPS patients may develop symptoms akin to a neurological neglect-like syndrome, whereby the limb may feel foreign ("cognitive neglect") and directed mental and visual attention is needed to move the limb ("motor neglect"). Members of the patient support group, the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), were mailed a questionnaire inserted in their newsletter which inquired about the presence of these neglect-like symptoms; in addition, a separate medical history questionnaire was included to assess adequate documentation for the diagnosis of CRPS. A total of 242 patients returned the questionnaire but only 224 of the questionnaires were analyzed; 15 were excluded due to inadequate documentation of CRPS and 3 were excluded due to non-limb involvement. Eighty-four percent (84%) of these respondents endorsed the presence of at least one neglect symptom and 47% indicated they had both "cognitive" and "motor" neglect symptoms. Of interest, approximately 33% of respondents spontaneously wrote comments regarding the significant disability due to these neglect symptoms and the difficulty explaining these unusual symptoms to their health care providers and family. This patient survey confirms the presence of neglect-like symptoms in a subset of CRPS patients. Neglect-like symptoms need to be addressed and validated by health care providers.
PMID: 10517043 [PubMed - indexed for MEDLINE]
I found this.... (I hope its ok that I post it. I just figured by the response and how uncomfortable I felt even mentioning this, that it might help others here)
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Old 11-04-2013, 01:50 AM #10
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Quote:
Originally Posted by Nanc View Post
When I was still working, I would stand up at my desk to leave my office and I couldn't walk...this happened many times. It was like I couldn't get my RSD leg to engage...it just wouldn't move. Sometimes my hands "forget" how to work too. Frustrating, but all part of this "wonderful" condition we suffer with...

What she said. So sorry painman. It's frustrating and depressing for sure.
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