Heart "attack" symptom?

Allergies, blood and immune system
1

I am wondering if anyone has experienced a heart "attack" with Sjorgen's but follow up found no artery blockage or heart damage.  I am only 36 and had this happen in the fall, triponin levels were elevated but cardiac catheterization said I am fine.  I am wondering if I have Sjorgen's since my mother is diagnosed with it.  Given my age any time other testing for autoimmune diseases has been done there has been nothing of concern.  However, I have had other issues throughout my life such as:

- inability to wear contacts due to lack of fluid in my eyes (I still have tears and they will water in the wind etc).

- dry mouth, but not bone dry....very self-conscious about having bad breath because of this.

Recently other symptoms have started to occur such as:

- joint pain in knees

- heartburn

- declining memory for simple things like people's names and faces (maybe this is just part of getting old).

If any one here has had similar experiences it would help me know if I should pursue being tested for this.

Thanks,

Carrie

2

Should also mention I have struggled on-and-off on a regular basis with constipation for years despite eating a healthy diet.  

3

I think it is a resonable question to ask given your symptoms and family history. I would have a look at pericarditis and see if you think that could be causing your heart symptoms but to be honest, there are so many things that could associate heart symptoms to auto immune disease. I don't have Sjogren's but similar and have had this problem over the years. 

4

Sorry to be an opportunist but is Pricarditis diagnosed please? Is there a straightforward diagnostic test such as ECG or bloods? I have Sjogrens with episodes of chest pain and intermittent palpitations, but apart from one doctor mentioning likely costochondritis and ectopic beats seen on ECG - nothing else has shown up to date. I do worry because both my parents died suddenly and prematurely from sudden cardiac arrest and I have subclinical atherosclerosis.

5

Sorry about typos - iPhone playing up - meant how is Pericarditis diagnosed please?

6

hi, well that's the tricky bit really. It is quite elusive because it is inflammation around the heart. I have been told I 'probably' had that as have had episodes of heart murmur and different symptoms due to becoming ill while in a Behcet's flare. It is, I think, often diagnosed on history and quite often shows up as a suspected murmur.  It is actually caused by this....

A common sign is the pericardial rub. This is the sound of the pericardium rubbing against the outer layer of your heart. Your doctor will place a stethoscope on your chest to listen for this sound.

The problem is catching it at the right moment. I had that murmur sound and by the time I went for MRI I was ok again. But I have had a few episodes of it. 

7

Carrie

Can't say that I've heard anyone here or in my local support group talk about heart attack but who knows? That said, it's too easy to assume that all of our symptoms can be attributed to one cause. Symptoms overlap, and symptoms or issues can stand alone - such as heart problems and digestive issues. I resolved my heartburn issues long ago with nothing other than dietary changes because I couldn't take all the heartburn drugs available in the States as they gave me migraines. PM me if you want details.

Likewise a healthy diet isn't always enough to alter constipation. Stool softeners without added laxatives might be your friends, along with some of the drinkable fiber products. For some folks, eating a crisp cold apple helps while I am helped by eating the combo of dried apricots & raw almonds. When things are really bad I need the stool softeners. I wish I had used them when I was your age. Ask your doctor first.

I hear many of us chuckling to learn that 36 is "old". I'm 62 and I'm not the most senior poster on here. If you are having memory issues at your age, you may want to try some memory exercises. PM me for those, but here are 2 that weren't needed when I had statin-induced Alzheimer's symptoms:

1) force yourself to memorize ALL of your user names & passwords. Start with the site you access the most & turn off auto-login/password memory. Write down the info - writing it down by hand on paper helps the brain start the memories. HOLD the paper some of the time while you consult it to login. When you are doing pretty well with one, add a second. If you get to where you can recall 2 or 3 you are doing great.

2. Don't use autodial or voice dial except when driving a car or it's an emergency. Force yourself to look up numbers & write them down, then dial them while looking at the written number. You will soon memorize the numbers you dial most frequently. I can dial at least 30 numbers from memory, but I never used autodial on landlines & use it as little as possible on my cell. This despite the fact that I rarely make more than 20 calls/week.

Don't omit the steps of writing things down by hand on paper. Our memories are composed of many different types of memory. When you write down & later read "mom" by her phone number, millions of memories are activated even if negative or if you lost your mom before you could remember her. You also have the muscle memory of writing out the name & number, and of holding the paper.

If you do these things religiously for 2 months & can't memorize anything - especially if you do the other exercises, too - then you'll need to talk to your GP about your memory and it won't be because you're old but because you are young.

8

yes that's a worrying history isn't it. But to be honest I get same with Behcet's and both parents had similar issues to those which you mention. So far all heart investigations for me have been normal so apart from these intermittent issues which is suspected to be pericarditis I have been clear of any other heart issues x

9

Oh that's frustrating to learn! So many things with me are presumed or suspected by my doctors. For instance I'm told constipation is probably due to Sjogrens dryness and autonomic disfuction. But when I ask about having tests for the latter they shrug and tell me this can't be reliably tested for in Scotland. When I ask about subclinical atherosclerosis they tell me lots of people my age (54) will have this bad just watch diet/ cholesterol levels. I think it's just about not having the expensive specialist testing available here and unwillingness to fork out for testing further afield. So I don't need any

more presumed conditions - only hard evidence will do for me now!

Thanks for explaining though - I di have plenty of inflammation showing in my blood for no real reason. But now they tell me that this is Sjogrens too as lack of moisture in the blood will send CRP and ESR/ PV soaring all by itself. I'm not so sure though!

10

Other than suddent onset chest pain with full heart attack symptoms (pain down both arms, shortness of breath etc), the only positive test I have had (ever - for any type of medication condition) was elevated triponin which indicates heart enzymes.  nothing on ECG.  Nothing on echo.  No damage on cardiac catheterization (not a fun procedure).  I *think* precarditis shows up a little bit on the ECG and also on the chest x-ray.  I have not being diagnosed with any type of heart disease or condition.  They basically don't know the cause of my episode and have left it that (but of course I am not satisfied with that).

 

11

Hi Carrie,

​Well, I know this is all very frustrating!!  My Sjogren's has gone inside to my organs, adrenals, kidneys, liver, intestines, stomach.  I do know it can affect our lungs...mine are fine so far, and it also "can" affect our hearts, to what extent, I am afraid I do not know.  But there is information out there on line, but that is a mine field!!  There is a lot of good information, but there is also a lot of stuff we don't know what is not so good.  The best bet is to look on sites like the Mayo Clinic, and this site that are trusted places with real people that have real issues, that are going through these things.  The problem with Sjogren's is, it mimicks so many other auto immue diseases, it can take years to figure out.  But if you have a really good RA doctor, and a really good Internist that specializes in cronic illnesses, this will be very helpfull!  But, I am afraid you will find you could end up will many "Specialists" if you end up in the situation like I'm in.  Hopefully you will not, as a lot of people with Sjogren's do not have it this bad.  But, there are many that do!!  I would stay on top of it, if you don't trust, or care for your RA doctor, get another opinion!!!  Blood work does not always show things for a long time, lip biopsies do not always show one way or another.  You might not have answers for a long time, but a good RA doctor can usually put a finger on it.  Some people have had success with diet.  It did not work for me, I eat very healthy, I have tried the diets for eating with Sjogren's, I waited too long, and caused damage to my kidneys, and now am in kidney failure.  My fault, I waited too long, and am now paying the price for it.  My kidney specialist has been working on my for...well about a year now, and has me...with medication for life, feeling pretty good.  We are hoping this will work...a LONG time!  I am on a LOT of meds, but it's all keeping me going.  Sure, they all have side effects, but the alternative is not so great!!  My only suggestion to you is to do what YOU feel is right for YOU to do for YOU.  Try what YOU feel is right for you!  Don't let people try to bully you!   Stand your ground with your doctors, if you don't feel comfortable with them, make a change!!

​We are always here if you have questions, or need someone to talk to!  Please keep us informed as to how you are doing!!  I would really like to know what your doctor has to say about your heart, perhaps going to a heart specialist that deals with people with Sjogren's would be a good move.  I would call some offices, and just ask, that is what I have done with my gastro and kidney specialists...and my neuro doctors.  If you know any registered nurses, a lot of times they know who are the ones to send you to as well...Just a FYI for you.  Right now I have a flare up in my foot, it's really bad, and my RA is taking dramatic steps in the last 24 hours to get this under control, still may have to go to ER today...will see.  But, I totally trust him!! 

I wish you good luck!!!

12

Thanks for the support.  Unfortunately I find in Ontario it is not simple and easy to get into specialists so I am trying to avoid the agony of doing so if I am just crazy.....for example, I have waited 2.5 years to get an appointment for consult for L5/S1 bulging disc, and may need to wait over another year for surgery if thats what they want to do.  I think I will try to get a referral to the same RA doctor as my mother, so at least the genetic factor may play more of a role in diagnosis.

 

13

Hiya Carrie...absolutely yes.....it's just great that there is no heart condition. Also the rest of the symptoms..I've had SS fir 30 years now..it's famous for drying out organs..if use lubricant ion my eyes..it's a spray for dry eyes ..can even spray over makeup...really really dry mouth etc..use an artificial saliva..throughout night mainly...the fluid in my left ear has partycrystalused so I have dizziness/imbalance full on 24/7..had that. For 25 years now..however Neuro said it would go one day as quick as it came..mmm still waiting..frightening at first as I thought I had a brain tumour..bit like you thinking you had a bad heart..,fortunately I have learned to live with it well with a walker..and an awesome husband..I'm always encouraged by the fact that there are many people a lot worse of than me.,who just survive with their lot...have a lovely day Carrie..be blessed.,😘😍💐

PS the memory is just a brain fog..we all get..try not to stress..autoimmune issues love it when we stress..we end up with symptoms we never thought possible..yuk..😘

14

You can certainly have tears but experience dry eyes, and bad breath can be a sign too. Joint pain and IBS and very many other symptoms can be experienced with SS. It's usual to suffer all sorts of rheumatological symptoms and then find the reason was due to SS. Read the patient information leaflets on the websites of the BSSA (British Sjorgrens Syndrome Association), and similar. You may be surprised at the range of symptoms.

15

I think this link will have to be cleared but the gist is that Sjogren's is less likely to cause cardiovascular disease than Lupus but sufferers of Sjogren's are more likely to get Lymphoma than people with Lupus are. Swings and roundabouts! 

http://www.medpagetoday.com/Rheumatology/GeneralRheumatology/60034?xid=nl_mpt_cardiodaily_2016-09-08&eun=g677038d0r

 

16

Re cardiovascular disease with Sjogren's I've posted a link below which awaits moderation.. 

17

Oh my goodness...that is awful you have to wait so long!!!!  2.5 yeras and another year for surgery????  I have had back surgery on the same area, not fun to suffer that long like that!!!!  I waited on purpose because I didn't want surgery...but now I can walk better, and am staying off the ground!  I no longer fall, but I do still have to use my cane, as I am still wobbly, but beets the ground any day!!!  Good idea to see your mother's RA doctor.  God Bless you!!  Sure wish you luck!!! 

​Hmm...just a question...does your insurance cover you, if you go out of country..like the U.S. to see a doctor?  I ask, because my own insurance would cover me, should I go out of country, if need be.  Not all U.S. insurance companies do that here, just wondering.

18

would love to see this!!!

19

Pericarditis is sadly more elusive than you think and often doesn't show on ecg or x ray. It can sometimes but not always. X

20

Yes all these forms of vasculitis can send esr/crp soaring. And sadly we din't always get diagnosis of different issues but what your doc should be doing is treating underlying disease so that you don't have these symptoms ongoing. They are really bad at not reacting to symptoms peopke have which are really rather distressing. I changed doctor because of issues over treatment.

Where in Scotland are you treated at the moment if you don't mind me asking. I am Scottish but living in London but go to Cambridge for treatment because I was so badly treated at the previous clinic I attended.