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sprant
03-07-2011, 01:27 AM
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

Nonna
03-07-2011, 02:53 AM
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

jmail
03-07-2011, 09:29 AM
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.

GoodDog
03-07-2011, 01:56 PM
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.

tgal
03-07-2011, 02:02 PM
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

sprant
03-11-2011, 02:23 PM
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.

red246
03-11-2011, 03:30 PM
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/webarticlesnet/templates/new_learnaffects.aspx?articleid=2323&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)))

lovehubby
03-11-2011, 05:14 PM
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

ritzbit
03-15-2011, 06:10 AM
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/webarticlesnet/templates/new_newsroom.aspx?articleid=2323&zoneid=8

sprant
03-16-2011, 02:15 PM
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.

ritzbit
03-16-2011, 02:24 PM
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.

mountaindreamer
03-16-2011, 09:14 PM
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.

tgal
03-17-2011, 06:37 AM
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)

UltraMonkey
03-27-2011, 06:16 PM
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

Colleenc
03-27-2011, 10:26 PM
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!!!

UltraMonkey
03-29-2011, 09:09 PM
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/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm

red246
03-29-2011, 09:30 PM
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)))

sprant
04-08-2011, 01:59 AM
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.

mystiejm
04-27-2011, 08:42 PM
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

sweetlilbeckysue
10-04-2011, 03:55 PM
I hope you still come on here. We have so much in common. I would really like to share stories.

Desleywr
10-04-2011, 04:39 PM
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!

tgal
10-04-2011, 06:52 PM
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!

steve.b
10-04-2011, 07:39 PM
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.

Desleywr
01-11-2012, 02:25 AM
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.

Desleywr
01-19-2012, 06:23 AM
Off to see neuro in the morning! MRI booked for Monday!

Carmen
07-31-2013, 01:48 PM
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.

Sammy
08-12-2013, 09:59 PM
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

Carmen
08-16-2013, 05:38 PM
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.

Sammy
08-20-2013, 10:27 PM
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