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Why doesn't it fit? Neuroleptic pain

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    Why doesn't it fit? Neuroleptic pain

    This past week I went to see my Neurologist and my Orthopadic Surgeon. I handed them both the same paper with my list of concerns and my current condition:
    Palms to elbows, knees to ankles and feet are a major source of pain, stiffness, burning/cold and other abnormal sensations that increase when in contact with objects or movement.

    I went on to further try to explain the pain, they are both very familiar with the arm complaints, I've had problems with the legs before, but the Lyrica seemed to subdue the stabbing pain and vibrations. In the past I've informed them of the involvement of the legs. My Neurologist has previously diagnosed me with Neuroleptic pain stemming from the cervical spinal cord.

    My complaint to the Doctors mainly seemed to make them focus on the joints. They both told me the elbows fit, but pain in knee's and ankles didn't fit. I tried to explain, it's the tissue surrounding those area's causing the pain with movement. I get so flustered trying to explain this pain. I finally blew it off with both of them as overdoing it with the walking. But, I still wonder why are they both saying it doesn't fit! Can anyone explain this to me?

    C5-6, C6-7 incomplete walker.

    #2
    Are you walking? If so, God Bless and keep us abreast.

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      #3
      yes, I'm walking with a cane, can't do the heal-toe thing. I walk with a wide base, far from normal but I'll take it.

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        #4
        I've been trying to come up with a guess at this. Perhaps since you mentioned so many joints in your description, they thought you had joint pain? I interpret what you said is that you have pain all along your lower arms and legs, from the knees or elbows on down - but I wonder if they just thought it only hurt at the joints.

        If they thought that, perhaps they decided because of the level of your injury that would make sense for the arms.

        But for the legs, perhaps they just focused on the walking and the joints.

        My best guess... hopefully someone else will know better. I am sorry, that sounds SO frustrating, not feeling that the doctors understood what you were saying.

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          #5
          They definitely thought the joints. The Neurologist ran blood test for arthritis, lupus, vitamin B deficiencies and some others. I tried to explain so many times to these Doctors it's not in the bone it's the tissue surrounding. I started to read Dr Wise's post on shrinking tendons, I'm wondering if that could play a role in my problem. My walk is far from normal, very stiff, my neuro says it's spastic. I think most of the time my body is just enduring a lot of abuse, because I make it do things it doesn't want to do!

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            #6
            Well I guess I am glad they are enthusiastic (j/k, mostly).

            Do your legs hurt just in the area of the joints - or everywhere from the knees on down?

            They could have a point, if it hurts/is swollen all around the joints, even not the bone, it could be some inflammatory thing such as those they are testing for.

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              #7
              Yes, I applaud the effort, and it could be something inflammatory. But I guess what I'm confused about is, why is it okay for it to be this way in the elbows, (arms) but not the lower half of my body??? I wish I would have thought to ask!

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                #8
                It sounds like it is driving you crazy - and I don't blame you.

                Are you going to be given the results of the testing soon? If so, you can ask then.

                If it is going to be a while, I suppose you could call the office with the question. At the least, I would hope a nurse could call you back with some answer.

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                  #9
                  Neuroleptic or neuropathic??

                  Definition of neuroleptic:
                  Neuroleptic: A term that refers to the effects of antipsychotic drugs on a patient, especially on his or her cognition and behavior.

                  Neuroleptic drugs may produce a state of apathy, lack of initiative and limited range of emotion. In psychotic patients, neuroleptic drugs cause a reduction in confusion and agitation and tend to normalize psychomotor activity. The term comes from the Greek "lepsis" meaning a taking hold.
                  Are you taking neuroleptic drugs (ie, Thorazine, Haldol, etc.)???

                  Neuropathic (also called "central") pain is due to damage to the central nervous system (the cord or brain) or sometimes to the peripheral nervous system (such as in diabetic or alcoholic peripheral neuropathy).

                  A physiatrist or a chronic pain specialist are much better at management of neuropathic pain than most neurologists and pretty much all orthopedists. The pain is in your cord, and is not usually due to a problem in the area where you feel pain (ie, your joints, arms or legs). Treatment of the arms and legs or joints will not make neuropathic pain better.
                  (KLD)
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                    #10
                    Originally posted by VavaBoomer View Post
                    Yes, I applaud the effort, and it could be something inflammatory. But I guess what I'm confused about is, why is it okay for it to be this way in the elbows, (arms) but not the lower half of my body??? I wish I would have thought to ask!

                    Because they can explain it more directly. Did they check out your ulnar nerves?

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                      #11
                      Sorry it's neuropathic, let spell check get the best of me! As fate would have it, my Neurologist is leaving her practice. I've found a specialist that heads up a Department of spinal cord injury and specializes in neuropathic pain and rehabilitation management. I see him at the end of January. I take 150mg lyrica 3x daily. I agree I need a specialist to understand what I'm talking about!

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                        #12
                        JB do you mean a nerve conduction test? It was suggested. I'm not sure if I can have one. I had a stapedectomy done back in 1980, I know I can't have MRI's done and they wouldn't use the testing during my decompression surgery. My ulnar is my major problem!

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                          #13
                          You should be able to have nerve conduction tests I think, can't see why not.

                          That specialist sounds like an ideal person, I really hope it works out (sorry it's a month away though )

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                            #14
                            Vava, I also am an incomplete (mine is c7/8) and some ability to walk, falling part of my specialty:-) Like you, I have also been given some "unfitting" diagnosis or explanations from neurologists. My physiatrist specialist in SCI has been fantastic. Neuropathic pain is of central origin. http://www.painonline.org/bowsh.htm. What we may be experiencing that feels to come from our feet, knees but comes from spine as "referred pain." I don't know if it is the same as I experience, but sounds like it may be. I have hyperasthesias or hypersensitivity to pain, cold, or heat, touch, tingling in arms, legs, feet, etc. Light touch sets me off to severe spasms and severe pain. I guess it is the price to pay for being incomplete. I distinguish central pain from peripheral pain from rotator cuff and nerve impingment or if I fall and sprain my ankle. My arms, shoulders have different amounts of spasticity and pain than my trunk and legs as well. I find meds with cortisone can take some of the edge off the pain, exercise, massage stretching. Conduction studies may help, but I personally did not find much benefit. Hope the New Year brings you some answers.Good luck. Peace.
                            Last edited by med100; 1 Jan 2010, 8:47 AM.

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