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Thread: Autonomic nervous system and lupus HELLLLLPPPPPP

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    Default Autonomic nervous system and lupus HELLLLLPPPPPP

    Hey guys,

    Sorry I have not been on here for awhile. I have had a terrible time in and out of hospital and was at times completely incapacitated. I was diagnosed with postural orthostatic tachycardia syndrome (POTS), when I couldn't even sit up without passing out and my heart rate would beat so fast, as though I was running a marathon, just on standing. When I brushed my teeth when in hospital my heart rate went up to 177 just doing this action. This is an autonomic nervous system disorder, and they arn't sure whether Lupus has effected my autonomic nervous system and caused POTS. They have neither ruled it in or out but said it is a possibility.

    Everything I read on how Lupus effects the autonomic nervous system says that it has not been well researched and very little is understood about the effect of lupus on this part of the body grrrrr this doesn't help me. I have severe raynauds also, which is cause by faulty autonomic nervous system, I just don't see how this can't be related. But finding it hard to find the definite answer to this. I worry that not knowing whether this is autoimmune will be hindering my treatment. I still cannot work and seem to have stopped making progress. I can sit up and stand. But cant stand for long. I am nauseous and get bad headaches.

    Does anyone know anything about how lupus can effect the autonomic nervous system and how to test whether it is the cause.

    Otherwise I might just have to accept I have managed to develop two crappy conditions that arn't related.

    Blah

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    I'm sorry to hear about your troubles. But as to one causing the other? You're right I don't think they've research that yet. They tell me that my Parkinsons it totally unrelated to the Lupus. If you find any links for lupus and nervous system disorders; please post. I've been really tied up and haven't been able to do a lot of research.

    Hope things settle now for you soon
    hugs, good thoughts and prayers
    nonna

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    From what I've read, lupus can attack any tissue in your body. Nothing is excluded as far as I know (can't throw me very far either, I'll bet... tic). I don't think there's any definitive test(s) that can conclude one way or the other what's for certain to blame. That applies for most "diseases". You can "see" evidence in blood tests, and come to conclusions, some stronger than others, but that's about it. You'll not get any virus to admit culpability... "Ya ain't hangin' this one on me, copper!"... That's one of the reasons some folks have difficulty getting diagnoses.

    Sorry about your issues there sprant. Can they do some fibro-type meds, like lyrica & others, to slow down &/or calm your nervous system, so that it doesn't go off and do that? We're praying for you.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Sprant, I'm so sorry you're going through such a rough time. From what I've heard/read all autoimmune diseases can affect the central nervous system. And once our immune system is compromised by one it's easier to get others and is often the case. I hope you have a good set of doctors that are working together. That's often one of the main problems with having multiple AIs.

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    I have to agree that everything that I have read Lupus can attack anywhere as well. I know it attacks the CNS so I am sure it COULD attack the ANS as well. I don't think it is a common thing but I am a firm believer that once you have an AI disease all the other things that come up can be caused by that AI disease and docs should not look as new illnesses as something completely unrelated to the AI. That is why so many have a hard time getting diagnosed, because no one is connecting all the dots

    Hope that made sense because my fog is pretty bad today
    Mari

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

    ~Winston Churchill~







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    Thanks for the replies. My rheumotologist called me and she is going to do some research into it. Feeling better that she is on the case now (I had a different consultant treat me for the POTS). I will let you know how she gets on.

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    Sprant,

    My oldest daughter has POTS, she has been sick for almost 5 yrs now. I know how hard both diseases are separately, but I wouldn't wish both on my worst enemy. Lupus can affect the ANS, but whether or not it "caused" the POTS, well you may never get a "definitive" answer.
    http://www.lupus.org/webmodules/weba...323&zoneid=526
    Do they have you on any medication for the POTS? My daughter is on Flurinef. That along w/increasing her water and salt intake is the only thing we have found to help. If you have any questions feel free to message me. (((hugs)))
    Lauren

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    That is rotten that you are going through this . I have periods of svt(super venticular tach) I would hate to have it that much I am so sorry. They say that mine is not related to my Lupus but I don't agree with that. Take care

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    I was just about to post something about this and remembered reading this not long ago. Do you have any other weird ANS problems? My doctor briefly said something about how mine was all messed up right now but said no one knows much about lupus and ANS problems. I have been complaining of a racing heart for MONTHS and she never wants to listen to me and when I went yesterday my sitting heart rate was also very high, 163. I also have Raynauds and lately I have been having the weirdest sensations in my legs and I keep getting really hot out of nowhere. She was saying all of these things are controlled by the autonomic nervous system, but that I was just always having problems like this? Other than my heart rate I dont know what she was implying there because I have never had this weird vibrating feeling or feeling of ice cold water in my veins or getting really hot until recently. Have you had any problems like this too? After saying all of this she chalked all of my symptoms up to my recent steroid treatments. So Im not sure.

    Just found this link on LFA's website. http://www.lupus.org/webmodules/weba...=2323&zoneid=8
    Last edited by ritzbit; 03-15-2011 at 07:28 AM. Reason: found a link!
    "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 Red, sorry your daughter has POTS it is a rubbish thing to have. To be honest I have got to the point that I don't know which symptom is coming from which disease, or medication. I am on propranalol to slow down my heart rate, but it also lowers my blood pressure which wipes me out all morning. This is the only drug that allows me to sit/stand and walk around, without it I am completely incapacitated. I was on florinef, but I got really bad headaches from it so had to stop. I eat salt and drink water like crazy to to raise blood pressure.

    Ritzbit, POTS is a dosrder of the ANS so I do have other ANS symptoms, like nausea. Overheating and temp regulation can be part of it, but fortunately I don't suffer from that. My Raynauds is severe and I have illoprost infusions in winter to help dilate blood vessels. I find it interesting that one of my major lupus symptoms is raynauds and now alas I have POTS. Hello am I the only one making the connection that my ANS is not having a happy time from both disease fronts. I am concerned that your heart rate is that high and you are having other ANS symptoms. My specialist said that if my heart rate goes over 100 bpm then we need to up the dose of medication to slow heart rate down. Do you get dizzy, faint, or lightheadded with the fast heart rate? I would ask to be checked for any dysautonomias. Let me know how you get on.

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