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Thread: Autonomic nervous system and lupus HELLLLLPPPPPP

  1. #21
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    My eyes are so open realizing so much reading here. Since 2007 on and off I have had racing heart rate 170 often, which is now controlled by meds. I often get irregular heart beat off again to gp on thur to check this out again. I have flares of my temperature not being controlled heating up. Along with reaction to fluro lights and the new light bulbs. Putting it all together within Lupus it all makes sence. Unbelievable! Really using it that one condition can be responsible for this and more to our lives. But honestly I do feel better that it can be eplained I don't feel so para. Thanks to all!
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    Quote Originally Posted by Desleywr View Post
    My eyes are so open realizing so much reading here. Since 2007 on and off I have had racing heart rate 170 often, which is now controlled by meds. I often get irregular heart beat off again to gp on thur to check this out again. I have flares of my temperature not being controlled heating up. Along with reaction to fluro lights and the new light bulbs. Putting it all together within Lupus it all makes sence. Unbelievable! Really using it that one condition can be responsible for this and more to our lives. But honestly I do feel better that it can be eplained I don't feel so para. Thanks to all!
    Isn't it an amazing feeling when you find out that you are not alone? I think we all go through that when the pieces start falling into place!
    Mari

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

    ~Winston Churchill~







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    Desleywr (01-11-2012)

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    hi sweetlilbeckysue,

    welcome to our cyber family.
    feel free to read all of the posts that interest you.
    there is some we feel more important.
    we call them stickies, and they are at the top of each section.

    once agin welcome.

  5. #24
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    Further issues have now been coming such as not feeling hot water or hot heat packs now off to visit neuro and she had booked a MRIfor the 23Jan hope something comes from this.
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    Off to see neuro in the morning! MRI booked for Monday!
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

  7. #26
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    I just found your website. There are other people like me!

    I have lupus (Dx in 1985 at age 18) which has caused an autonomic neuropathy. I have a rapid heart beat, other heartbeat abnormalities (PVCs), low blood pressure on standing (orthostatic hypotension), severe high blood pressure (HTN) laying down, slow GI motilities (gastroparesis and intestinal motility dysfunction), breathing abnormalities (still undiagnosed but now includes sleep apnea), and bladder abnormalities (urinary retention and incontinence)--all due to problems with my autonomic nervous system (ANS). My rheumatologist says since nothing else can be blamed, my ANS symptoms are due to my lupus. Since the nerve damage has already been done there is nothing to do to "fix" the problems only to help with the symptoms. I take Tenormin for my rapid heartbeat, PVCs, and HTN. The HTN is tricky to treat since I have low blood pressure too. I take Florinef and sodium chloride for the lightheadedness, dizziness, and nausea I have when I stand up (from the low BP). I use Benefiber and try to eat small meals for the GI problems, and tried PT and use caths for bladder issues. I'm picking up a BiPAP next week to help with my sleep apnea. Hopefully my doctors will also be able to find out why I get out breath easily. The extreme fatigue and exhaustion is my biggest problem and the most debilitating. I read our energy is depleted quickly just by standing. It takes us more energy just to stand because our ANS is not correctly telling our heart and blood vessels what to do to keep us from passing out.

    I can relate with you! I have found that there are some wonderful websites if you Google "Sjogren's Syndrome and autonomic neuropathy" instead of lupus. AN is much more common in Sjogren's, but it seen in lupus too. Unfortunately, there does not seem to be much research on treatments to cure or even prevent AN in any of the autoimmune diseases. (We need to work on that!) The good news is 5 years ago I could find little or no info on AN and lupus at all--so we are making progress! So all of you keep your heads held high (or low if you get sick standing up) there hope for all of us! I hope my sharing all of this has helped some of you. It has helped me just to find all of you--thank you! We'll get through this together! Take care and God bless each and every one of you.

  8. #27
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    Hi All,

    I work in a clinic where we see many POTS patient's and we also see patients with Autonomic Function issues. There is a test to see if your Autonomic system is working properley we also do them here. The ANS does control the blood pressure and can be affected with many disease processess. POTS can be exhausting and can vary in severity with different patients. Florinef is certainly one drug that gets prescribed and also Midodrine ( which is an authority drug here in Australia ) depending on severity and also depending on the blood pressure. If you do have POTS its very important to keep up an exercise regime even though you may feel completly crap. Lots of water and salt intake have been mentioned and these are beneficial factors for the low blood pressure side of things.
    As if going through Lupus is not enogh for anyone to bear we all seem to have added benefits of having other thaings as well.
    I see so many patients with POTS and the tests we regulary do are lying blood pressues ( at least 5 ), standing blood pressures for at least 5 minutes or more. To have POTS diagnosed the heart rate is usually sustained at least 30 BPM higher than the lying BPM. Add into this symptoms of dizzyness, light headed and sometimes shortness of breath. A tilt table test is sometimes also requested by some specialists. Alot of our patients tend to be more flexible than others as well.
    I hope you all have good specialists looking afer you.
    Sammy xx

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    Carmen (08-16-2013)

  10. #28
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    Thanks for the info. I have had the Valsa maneuver which came back positive--so much so that my doctor decided that there was no need to put me through more tests. I have autonomic neuropathy and neurogenic orthostatic hypotension. I had a tilt table done in 1992 with a Dx of vasodepressor syndrome. All of which are most likely due to my lupus, which incidentally is inactive--at least as far as labs go (not symptoms, as well as all of you know). I'm going to the doctor on Tuesday and will probably start Midrodine. We have been talking about starting it for almost a year now. The salt and Florinef are making my BP extremely high (ER trips high). However, my doc says the high BP is part of my autonomic neuropathy. Go figure--but it could be much, much worse. Thanks again. Take care and God bless each and every one of you.

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    Sammy (08-20-2013)

  12. #29
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    Hi Carmen,

    Sounds like the Drs you are seeing are doing all the correct tests, so you have done well with that. Hopefully taking the Midodrine will help you. It's amazing to learn how our autonomic system works and how it effects many of our daily functions. I'm so glad you are in good hands.

    sammy xx

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