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Thread: it's not a good day...and I feel like i'm making it all up

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    Default it's not a good day...and I feel like i'm making it all up

    I’m at work and miserable. I was OK this morning…I was great, actually. I have been feeling relatively well, some minor aches but OK. Then I went to this big meeting that lasted for over an hour and when it finished I went to get up and was surprised to barely feel my legs. Since it was a large group walking out, I was able to hide the fact that I was moving very slowly. I finally make it to my desk to realize that I have to go to the bathroom and I had to ask for help—from an unsuspecting soul who is concerned and is asking me what’s wrong. Of course I have NO IDEA what to tell her because she doesn’t know about the lupus (not too many people at work know and I prefer it that way)… and on top of that, this has never really happened before… so I try to fudge an excuse but I’m crying at this point and the one thing I was trying to avoid (bringing attention to myself) is happening. I was able to avoid other people noticing, but I should probably explain it to her…

    The real problem is that I feel like I’m making this whole thing up. I was fine before we went into the meeting, and now I can barely remain standing for too long and I feel frustrated that this is happening while I’m work! I’m worried that in half an hour, when it’s time to go home, I may not be able to make it to the elevator, and to the metro and then home. I don’t even know how to explain it, my legs just feel wobbly and weak and stiff and like if they weren’t even there… I don’t know what to do, I just want to sit here and cry but I don’t want people walking by seeing me and so I’m hiding in my cubicle hoping that no one will notice the fact that I’m crying and cant really get up I feel so drained, so very drained… I keep telling my self that the feeling in my legs, the stability will come back soon…. But it’s been over two hours since the meeting ended, it’s almost time to go home and what if I cant… what If I fall down, and what if there is no one there to help… and I don’t want to call anyone and what if this isn’t even real! I’m trying to talk myself out if it… maybe my legs are fine and I’m just imagining this! Because how could I walk into a meeting and just over an hour later barely be able to move??? I feel so terrible, I just want to lie down and cry… and what makes me think that I’m making this up is that there isn’t any actual pain. My legs don’t hurt, my knees don’t hurt, they just feel numb and weak and I don’t know what else… I just want to go home an lie down on my bed but for the next 20 minutes I’ll just sit here and cry wondering how I will get there…. This is so frustrating. I don’t know who to call or what to do. I don’t want to have to do anything; I just want to feel like I’m not going to fall down… I just want to go home

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    Sometimes, for me at least, the symptoms are really strange and can come on very suddenly like that. My sister asked how I was this morning, and I told her fine right now but ask me again in an hour. Maybe you sat in one spot for too long? I know in our meetings I look like I probably have to make a bathroom run cause if I sit in one spot too long my legs will go to sleep. I hate to say this but can you hold on to something and TRY walking it out. Honestly I really think you need to call your dr tho, especially if this is a new symptom for you. There could be something going on that he needs to check or it could be just one of those things we have to learn to live with, as we so often do. But it's better to be safe than sorry and he at least needs to note that you are having this problem.
    Do you have any friends or family to call? It really scares me to think of you riding on the metro feeling like you do right now. If you were in my town I'd gladly offer you a ride, but since your day is almost over, I'm thinking you are in a way different time zone or something.
    {{{HUG}}} I really hope it goes away and you feel better soon.

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    Hi Tatiana;
    First, we need to know if you made it home safely and how you are doing now!
    Second, I want to say that IT IS NOT YOUR IMAGINATION!! Sudden weakness and tingling in the body is not uncommon in Lupus. However, it is also not something that you should not have investigated by your doctor.
    Some things that you should be aware of is that Lupus can cause strokes in which there is a sudden onset of neurologic symptoms. Strokes can be due to bleeding into the brain or to death of brain tissue because of lack of blood flow. These problems occur if there is inflammation of blood vessels, clotting of blood within vessels, or not enough clotting of blood causing Lupus patients to hemorrage more readily. Lupus patients who suffer strokes may have a variety of symptoms, including loss of sensation on one side of the body, loss of movement (paralysis) on one side of the body, problems with verbal expression, or problems with vision. The exact symptoms will depend on what area of the brain is damaged and the extent of that damage.
    Numbness usually arises from damage or disease of the nerves. Numbness is often associated with or preceded by abnormal pain-like sensations often described as pins-and-needles, prickling or burning sensations called paresthesias. Any numbness or abnormal sensations need prompt professional medical attention.
    There are several medical reasons that can have leg numbness as a symptom. There are likely to be other possible causes too, so please ask your doctor about your symptoms:
    * Leg paresthesias (Leg tingling, prickling, numbness or burning sensations)
    * Nerve entrapment
    * Nerve compression
    * Wallet pressing on a nerve - if you are sitting on your wallet it may induce leg numbness.
    * Peripheral neuropathy (Nerve damage causing sensory changes to toes, feet, legs or hands. Peripheral neuropathy is a common neurological disorder resulting from damage to the peripheral nerves. It may be caused by diseases of the nerves or as the result of systemic illnesses such as Lupus.
    * Diabetic peripheral neuropathy
    I think that is would be beneficial for you to talk to you doctor as soon as you can so that you can determine the cause of the sudden numbness and begin treatment.
    Please let us know how you are and what you've found out!
    We are here for you!!
    Peace and Blessings
    Saysusie

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    I did manage to make it home OK, though it took some time. I have a Dr. appt next week, on the 28th-- at which point I will definetly make sure to bring up this issue with my legs. It kind of went away by itself, suddenly; much the same way it started. For the rest of the afternoon my legs felt a bit shaky, and almost "unatached", if that makes sence! I don't know how to explain it well, but i'm glad that it's much better now.

    To be honest, the worst part was the frustration that somethign like that could happen without much warning. That is the aspect that is so difficult to deal with... I often feel like I'm imagining it all, that maybe i'm attention starved or somethign like that. It's just difficult to accept sometimes. I'm just so glad that there is a place like this were i can vent and know that other's feel very much the same. I didn't tell anyone else (family) that this happened. i didnt know how to explain, and i didnt want them to think that i was making it up (i already do that myself)... I guess i'm just trying to say thanks for the support.

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    Tatiana; I am glad that you made it home and that you will be seeing your doctor and discussing this issue with him/her.
    I am especially glad that you are feeling better. Please keep us informed of how you are doing!!

    Peace and Blessings
    Saysusie

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    Many hugs, Tatiana, I understand how you're feeling!

    There are days at work where I can sail through and feel like my old self. Others whre I have to take the elevator up one floor, where all i want to do is sit at my desk curled in a ball and whimper.

    Do talk to your doc about the weakness and symptoms, and keep in touch here!

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