Thursday, July 17, 2014

Sjogren's Syndrome and Dysautonomia

Sjoggie Katherine asks:

I have been diagnosed with Pandysautonomia/P.O.T.S.  Which means that my exercise ability has been squashed by my very own Dr. Young Guy.  Since January I've been told that even if I CAN drag myself off the sofa I am only allowed gentle stretching activities.  Hello Grabber!  

So my question is:  Since Sjogren's is one of the primary causes of Dysautonomia how many of your readers have been diagnosed with Autonomic Dysfunction?  It is a new field of research so even the specialists such as cardiologists and neurologists don't seem to be up to speed.  I had to push to have the Tilt Table testing done as the cardiologist wasn't interested in exploring the causes of the tachycardia since my heart was in good shape.  Luckily I have two very good Dr. Young Guys (Neuro & Rheumy) who suggested the testing on their own. 

It's a great question. Yes, P.O.T.S and other dysautonomia are fairly well documented in medical literature. Read this published in the Annual of Rheumatic Diseases in 2012 and found here:

Autonomic symptoms are common and are associated with overall symptom burden and disease activity in primary Sjögren's syndrome
This study aimed to determine the prevalence of autonomic symptoms in a large cohort of patients with PSS and to investigate whether there is a relationship between autonomic symptoms and biological and psychosocial variables commonly found in PSS. We have demonstrated that symptoms of autonomic dysfunction are common among patients with PSS, with 55% fulfilling the criterion of dysautonomia. Furthermore, autonomic dysfunction is independently associated with ESSPRI, disease activity (ESSDAI) and symptoms of anxiety, and possibly mental fatigue. 
Many case reports, case series and other studies have reported a link between autonomic dysfunction and PSS. However, the sample sizes of these studies were relatively small, rendering estimation of the prevalence and analysis of the relationship between autonomic dysfunction and other clinical features of PSS less reliable. Analysis of the data of over 300 patients with clinically well-characterised PSS in this study enables a more robust interrogation of the relationship between autonomic symptoms and other clinical features of PSS. The multicentre design also increases the ecological validity of our data compared with those derived from single-centre studies. To our knowledge, this is the first large, multicentre study to examine the prevalence, severity and predictors of autonomic symptoms in PSS. Continue reading here. 
Autonomic nervous system chart found here. 

(*note - ESSPRI is the  EULAR Sjogren's Syndrome Patient Reported Index )

You can read more about dysautonomia here but here's a sampling:
Dysautonomia is an umbrella term used to describe various conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System (ANS) controls most of the essential functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye and temperature control. 
The ANS is made up of two branches: the Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PNS). The SNS controls the more active "fight or flight" responses such as increasing heart rate and blood pressure.The PNS can be thought of as the "rest and digest" part of the autonomic nervous system, as it slows down the heart rate and aides in digestion. The endocrine and metabolic systems are involved as well. These systems are in balance in a healthy person, and react correctly to outside stimuli, such as temperature, stress, and gravity. When they are out of balance and do not function properly for any number of reasons, autonomic dysfunction - or dysautonomia - occurs. People living with various forms of dysautonomia have trouble regulating these systems, which can result in symptoms such as lightheadedness, fainting, unstable blood pressure, tachycardia or bradycardia, gastoparesis and more. 
Have you been diagnosed with dysautonomia? Share your experiences with Katherine and us. 


Kate S said...

Useful timing... I'm just starting the process of trying to get answers around autonomic issues. I've been cleared on "traditional" peripheral neuropathy, which doesn't explain the pain I feel in my feet, and have problems with lightheadedness and temperature regulation.

Luckily, I shall be seeing someone who is really "into" autonomic issues, and gets the possible autoimmune connection.

Once we get through that, there is the question of if diagnosed, what can be done?

Unknown said...

Kate S, It depends on which system is involved and how extensive the problem. In my case both systems are involved and I am very sensitive to medications so my options are severely limited. I am left with lots of fluids, lots of salt, and plenty of rest. I am taking plaquenil because it is autoimmune mediated but other than xanax to control the physical symptoms of anxiety there isn't much available for me. Normally there is good response to SSRI/SNRI treatment. Low dose beta blockers are used as well. Also compression garments are helpful. And LOTS of rest. As well as the links in Julia's post is helpful, and is another good site for information even though it is aimed at young adults and juvenile patients. The link to is particularly wonderful. I am so glad you have a doctor who is into the Autonomic issues. My neurologist is as well. He was very excited when my results came back from the tilt table testing. Then he apologized for that excitement. Lol. I hope this helps and good luck with your testing.

Kate S said...

Thanks Katherine! I'm med sensitive too. Cannot do SSRI/SNRIs... Tried lots of them earlier on in the process to deal with the pain associated with other aspects of Sjogren's. Already drinking tons of liquid, and take plaquenil.

It's funny... I get the the "excitement" thing from the doctor, and sort of appreciate it. I'd rather have a doctor be excited and willing to try to find solutions than disbelieving and kind of overwhelmed by the complexity of our problems.

Heda said...

It's the autonomic disorders that characterise stage 2 Sjogren's. My major disautomia is exceedingly labile blood pressure. Unbelievably labile. Most doctors are astounded by it. The good news is I get straight through triage in any hospital emergency department because any stress including ill health sends my blood pressure into life threatening levels. The bad news is red face, anxiety, dizziness, fainting, seizures, etc. Autonomic cardiovascular disfunction is the diagnosis. The consequence of having repeated episodes of extreme blood pressure on a daily basis is an enlarged aorta at the maximum of normal. I'm a female on the very small end of scale and the maximum is intended for a big male so I'm on the cardiologist's watch list. Hey ho hello Sjogren's. And if anyone thinks a dry mouth and dry eyes and dry fanny (Australian meaning of the word) are what defines Sjogren's they need to think again. My next most irritating autonomic disfunction is a cough. A bugger of a cough. But again hey ho. Nothing I can do about it but make a life of some value with what I have. Love that you've asked. These are my hardest to live with symptoms. Far harder than the pain and fatigue.

Lisa said...

Don't know that "comments" is the place to initiate this conversation but don't know where else to start! I too am - extraordinarily - sensitive to meds along with things like sugar and caffiene. An 1/8th of a mg of Xanax knocks me out cold. Its a situation made all the more frightening because no one believes me. Then again, the last rheum I got up the courage to go to made it abundantly clear that SJS is "just dry eyes and dry mouth & no increased risk of lymphoma"....My discouragement w/t world of rheum is profound. But I digress. No where in my searches have I been able to find reference to a connection between AI issues and drug sensitivity. Anyone have any suggestions?

Unknown said...

Lisa, check out Among their list of symptoms is chemical sensitivity. A lot of people with autonomic dysfunction have problems with drug side effects. After looking at the websites don't be afraid to use the contact us button to send questions. I'm sorry you have a woefully uninformed rheumy. It took me 15 years to find someone to listen to me about the sequence of events for my anxiety/panic issues. Physical symptoms FIRST, followed by emotional distress. Of course by that time there were much worse issues needing to be addressed. And I've gotta say it was a NURSE PRACTITIONER who finally listened. Keep pushing and stand up for yourself. I'm sure Julia would be the first to say that this IS the place to find caring people with which to start a discussion.

annie said...

I wasn't going to comment because my symptoms are not as severe as some of yours, but my rheumatologist did tell there is a link between sjogren,autoimmune diseases and chemical sensitivities after I kept complaining of dizziness and nausea and almost fainting spells due to odors or some other culprits. My neurologist put me on migraine meds, because he said it was migraine, but I know it's sensitivity to all sounds and smells around me that will trigger a really bad bout.

I also have issues with with my inner ear and my specialist did say that sjogren's might have something to do with the constant feeling of being unbalanced when walking, or feeling faint when standing up too long, but that does fall under dysautonomia. I also have body temp regulation problems, and problems with med sensitivites. I guess if your symptoms are not severe enough, you pass under the radar and it's just not important enough as a symptom, but unfortunately, doctors don't look at the whole package of symptoms instead of disecting them one by one.