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?

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....:confused:

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

Bram.

My fingers don't work very well either, I say it's just a crps effect

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...:(

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.

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.

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.

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)

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

I am reading a lot of responses.. and thank you all for them.. one thing I notice is depression seems common with this beats.. every one expects you to be depressed… I am not sure that Depression fits what I feel..
I know have am having a great deal of difficulty controlling and stabilizing my moods..but my moods swing..and wildly from anger, frustration, confusion, to calm, serene, accepting, .. I mean yeah from time to time . I will mourn for the loss of mobility, and constant pain.. but I rarely dwell on those feelings,,, Am I just the odd ball out on that??? and now I find myself asking ME am I in denial and Im really depressed. ???? and I usually come to the answer of no..
Idk maybe Im fooling myself.. you all see my posts.. what do you think???
… Im glad that I can post all of my oddity.. questions.. I am not always brave enough to ask my Dr about it . so I ask here first.. and you all are awesome in your responses.. I get a feel of what to expect from my dr. when I do ask..
I appreciate. and am very thankful that all of you who suffer this beast are open with me and each other .. and this forum gets to do its job through those ..ARKs….( Acts of Random Kindness) ..Thank you all.. and I will pray again that every one wakes to better days..

Hi painman :)

I hope something from this is helpful. I'm no doc, so all I can do is speak from my own experiences. Hope I don't offend you or anyone else!

I've fought a few times against the tag of 'depression' over the last few years with this. A couple of docs have mentioned it, if (when talking about how CRPS has affected me) I've burst into tears. I feel quite angry about it tbh. I try to keep positive most of the time, keep myself busy, I found alternative work, continue to try to keep up with my kids and house and husband. Just because I have a few bad patches with this, or burst into tears in the privacy of a doctors office (where they ask you to just speak freely :rolleyes:) I don't think they should rush to that conclusion.

Depression is a terrible thing from what I've read and heard from an acquaintance who has it. Total darkness and hopelessness, where you can't even bear to face the day, or do much of anything. I know there are grades of it, and I would never say that people who regularly feel depressed shouldn't be treated, or that anyone being treated for it and still walking about has been misdiagnosed. BUT in my experience, both with me and a couple of friends, doctors are sometimes quick to offer meds for depression. I wonder whether it's more to do with getting you out of their office within the brief time-slot they have available...:rolleyes: I also question how helpful it is to tag someone as 'depressed' when what they are feeling is directly because of the terrible symptoms of the disease they are suffering from. I suppose in the end the judgement about where the dividing line is between 'feeling very down' and 'being depressed' is up to your doctor.

No one can say from your posts whether you have depression. Only a professional can make that judgement. Much of what you say sounds familiar, and I have thoughts like that myself. I would guess that most of us feel the loss of our former selves with sadness and some anger at times - we wouldn't be human if we didn't. While we can 'accept' what's happened and try to move on, we can't erase the past, or not feel bad for what we've lost. Trying not to feel like that is part of the battle we all fight every day.

Some days when the pain is really bad, and I can't do much of anything, I can get pretty low and cry and mourn my old self, I can wonder what I'd be doing if this hadn't happened, and wonder why on earth it happened to me. But I'm lucky that those days are rare, so for me I think they're a natural part of dealing with this, and I believe it's healthy to let those feelings out every now and then. If I felt like that most days and struggled to function, then I'd be daft not to seek some professional help.

Take care of yourself and I hope your day goes as well as possible. Don't be afraid to talk to your doc if you really think you are depressed. It's no joke, and this condition has certainly been known to cause depression.

Bram.