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Thread: Autonomic nervous system and lupus HELLLLLPPPPPP

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    My doctor says Im an "anxious" person, which maybe I am. But I dont think anyone walks around with a heart rate that high, and if thats normal for them I doubt they feel discomfort like I do from it. My Raynauds is my biggest problem too! I get horrible ulcers all the time =( I wonder why no one has really looked more into ANS problems. It seems like there is enough of a problem for some people that it would be looked into more and not just brushed off. I do get dizzy and lightheaded but I always kind of thought it might be from my medicine. I dont know.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    hi sprants,

    i just wanted to thank you for this thought provoking thread. makes each of us stop and take inventory of our various symptoms and it opens the door for us to learn even more about possibilities associated with lupus.

    i don't have any answers for you about the connection between ANS and lupus, but sure sounds plausible.
    Phyllis

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  3. #13
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    Quote Originally Posted by mountaindreamer View Post
    hi sprants,

    i just wanted to thank you for this thought provoking thread. makes each of us stop and take inventory of our various symptoms and it opens the door for us to learn even more about possibilities associated with lupus.

    i don't have any answers for you about the connection between ANS and lupus, but sure sounds plausible.
    Funny you mentioned thought provoking. I was sitting here thinking about starting a thread what we get from this forum and those that have touched our lives. I thought that maybe it would highlight some of the good each of us have.

    Then you mentioned a thread about symptoms we all have. I think that is an amazing idea! Maybe if we have a thread just about each one of our symptoms it would allow us to that "OMG" moment and realize that some of the things we get irritated at ourselves about actually are because of the illness!

    So Phyllis... want to start that in the symptoms section??? (I would insert a begging smilie here but they don'to work LOL)
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Sprant, I'm so sorry to hear that you are going through this too. I've been experiencing ANS symptoms as well, finally after several years they did a tilt table test that revealed Dysautonomia. During the test they were unable to get any kind of blood pressure reading on me at one point, waking up with a defibulator next to you is not reassuring. My Rheumie & Cardiologist feel it is autoimmune related so last week I underwent an EMG, which ruled out any neuro-degenerative roots. So far, they have decided to put in a pace maker in a couple weeks to steady my heart rate but they're not even sure if this will help. My Rheumie told me that indeed my lupus could be the culprit however, he also stated at the time that there was no treatment that is known to help this. So, I too am desperately seeking any kinds of literature or research on Lupus & Dysautonomia. From what I've heard from a few specialists is that Cleveland Clinic is supposed to be pretty advanced in this area and Mayo Clinic as well. I'll keep you posted on what I find in my searches, please do the same.

    Try to keep your chin up. You're not in this alone and we can all lean on each other for support and pass along literature on this under-researched topic when we come across it. Big hugs

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    Sprant

    How are they treating you POTS, I'm having many syncope issues and waiting to see my cardiologist for the results. I have been told I have tachycardia and atrial fib. So when I go back I will find out what they want to do. Im going for a tilt table test to rule out anything to do with these being postural (but the doc said he figures it will be normal). I have been reading up on the many causes and POTS was one so if I could get some Ideas from you that would be much appreciated!! I really want my life back!!!

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    Colleenc,

    Sorry your going through this too. Here is a link about POTS: it's a condition of dysautonomia (dysfunction of the autonomic nervous system) the link explains in detail.

    http://www.ninds.nih.gov/disorders/p...a_syndrome.htm

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    Ultra,
    Did your doc say anything about increasing your water & salt intake? This is usually first line defense for dysautonomias. My daughter has POTS. She is also on Flurinef (not quite sure on the spelling, but think that's it). Feel free to pm me if you'd like, we've been dealing w/it for over 4/5 yrs now. (((HUGS)))
    Lauren

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    Sorry for my delay in response, I have had a rough week, and havn't managed much. I went to a rheumatologist last week who said it was highly likely to be caused by lupus, but that it is a rare manifestation with only a few case studies written. I am waiting on some blood test results and his report, but it was the first time he had come across it.

    Ultra monkey, so sorry you are dealing with dysautonomia as well, it really really sucks. I will definately pass on research as I come across it. Lupus alone is difficult to manage, but upus with dysautonomia feels impossible at times. I actually think there are more cases out there with this overlap, I found POTs forum where many people on there had AI dieseases and Dys/POTS. If the link is that evident hopefully the researchers will start to pay it some attention.

    Colleenc, they are treating my POTs with Propranalol to slow the heart down. It stops me passing out, yay for that, but still feel rotten with a lot of pre-syncope symptoms. Tricky thing is I have to be off that coming into winter, as it will exacerbate my raynauds. I was on florenif, but it didn't do anything for me - apart from give me headaches. I drink A LOT of water and have been told to increase salt.

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    I have constant numbness and tingling in my hands and feet that started 3 years ago. I started just 2 months after I started having problems with raynauds. I remember reading that raynauds syndrome had something to do with the ANS so I figures my numbness and tingling issues might be related. I also get numbness tingling around my ear, upper back, lower back and legs. I have had a EMG and MRI's that were normal. It is very frustrating and my rheumy says that numbness and tingling does not go with rheumatic diseases( except vasculitis). So, I just dont know what causes it but I do think its from the my lupus.... Mary

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    I hope you still come on here. We have so much in common. I would really like to share stories.

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