Today i broke down and went to Er I had really bad chest pains and my blood pressure was sky high 157/97 (well for me i always have low blood presure 80/40 ) anyways I tried to do everything to ignore it all night my chest was throbbing I couldnt sleep once i did for an hour a woke up and i was drenched in sweat
i went to er and the dr said i just need to get it in my head i have anxiety and i am not sick and sent me home (i refused axiety meds) i told him there is a high probability i have an inflammatory disease that may be sjogrens. he said sjogrens affects they eyes not anything else. i cried and cried all the way home.
my family has had it with me and now the doctors i dont know how to go about getting care no one seems to beleive me
i was wondering if this little episode was a withdrawl from cutting down my prednsone. i had never felt like that before.
also my other doctor suggested it was costal cartilage inflammation but would i hurt that bad it feels like it is my lungs and if that is the case wouldnt prednisone have fixed that?
if this is the way i must live the rest of my life. i am not sure i want to live this way anymore
i dont have a follow up with my other doctors until the end of next month they are out of town (4 hrs ways) i dont know if the next test for sjogrens is on the list
is there anyone with sjogrens that feels completely unabled? i have felt this way since mid february how long would a flare last
What a horrible experience you've had. My heart goes out to you - and I'm really pleased that you've come to tell your Sjoggie family what happened. It's what we're here for and I'm so glad you felt you could share it with us.
Most/probably all of us have had times when we've been told we're just suffering from anxiety or depression. Usually it's because the doctor doesn't have the expertise to diagnose what our real problem is, and often that's linked with the fact that many Sjoggies are women over 40. And you know how much doctors like to tell women over 40 that their symptoms are all in their minds or hormone-related. Or both!
It can be a long road to getting a diagnosis and treatment, but you're not alone. Maybe your family could read some of the posts here and then they'd understand that there are thousands of people out there with similar stories to yours. Sometimes family members post themselves with queries.
I'm not medically trained so I can't give specific answers to your queries but I do know that prednisolone can cause all sorts of side effects when you cut the dose. Have you spoken with the doctor who advised you to reduce the prednisolone? Maybe you should taper down more slowly? Costal cartilage inflammation can be extremely painful - reducing the prednisolone might have caused it to flare or simply losing the anti-inflammatory help that prednisolone gives could cause severe pain. What pain meds are you on? Maybe anti-inflammatories would help?
Will your doctors respond to phone calls or emails? Sometimes their secretaries can tell you how best to contact the doctors themselves. You're certainly entitled to ask questions about reducing prednisolone, and about which tests you're due to have next.
Thinking of you - Chickpea
Hi
I'm sorry you had such a bad experience in ER. Unfortunately a lot of doctors know very little about Sjogren's. Several times in hospitals I've suggested to doctors to go online or back to their medical books, when they have dismissed SjS as just dry eyes and a dry mouth. "Oh - did you miss that lecture then?" I've 'joked'. Unless they specialise in rheumatology it is hardly mentioned - and even some rheumies seem pretty ignorant about it.
What were you given prednisone for? Whichever doctor put you on it must have made a dx.
Take care - Scottie :)
my ophthamologist prescribed it i have swelling of the optic nerve and high crp levels i also scored a zero on the schirmirs test he isnt sure of whats going on so he did a trial of prednisone and punctal plugs hes the one who suggested i ask my rheum. to be tested for sjogrens but he wont because my ana was negative
Hi Sikalot :)
I'm sure if you've been reading in here you will have noticed there are quite a few of us whose blood hasn't tested positive. My ANA is negative. My bloodwork was mildly positive for lupus but I got an SjS dx based on symptoms. My bloodwork is now negative, thanks to Plaquenil. The dx stands.
When Sjogren came up with the 'syndrome' he went by symptoms alone. There weren't any blood tests in those days. Modern doctors get far too hung up on them. Maybe your optho could recommend a good rheumy who is knowledgeable about SjS?
Take care - Scottie :)
Oh my word - I feel so bad for you! I can't give any advice, but wanted you to know that I feel really sorry for how badly you were treated. xx
Er Dr's are useless unless you have an appendage that needs to be sewn back on, and poorly at that. I had a crumpled prescription for prozac thrown at me in one ER by a "doctor". When a few days later it was discovered I had a 7cm tumor
(small grapefruit) in my abdomen, I called that hospital and gave them an earful and had my ER fees all waived. I absolutely refuse to pay for being treated like garbage.
Face it, either they are brand new, working a second job to pay alimony or have such god awful people skills they can't function in a normal practice. Either way, your chances of getting decent care unless you need bleeding stopped are not that great.
Having an ER Dr tell you nothing is wrong with you is to me is about as believable and comforting as having Obama tell you he will have the budget balanced.
Already you know that person isn't even bright enough to know anything about sjs affecting more than eyes.
Costochondroiditis is very painful and it can affect you in many different ways. I believe if you try 800mg of ibuprohpen or other prescription antiinflammatory and find you get relief, you can feel fairly safe that is what you are experieincing.
Don't rule out "anxiety" as a contributing factor though. Being is pain and feeling unwell, then having no one believe you absolutely creates anxiety. It would not be normal if any of this did not make you anxious. You probably need to quit dilly dallying around with the gp and get yourself to a rheumatologist, even if you need to pay cash just to get on with your life.
A couple hundred dollars for the initial office visit would be peanuts to pay get an answer.
Sikalot I am so sorry for all you are going through. Please don't give up. It often takes a long time to get it all settled but it just takes finding the right Doctor who will listen. If that doctor refuses to diagnose you based on the ANA, you might want to look for another Doctor. I have never tested positive for ANA, just for SSA, but my Doctor diagnosed Sjogrens and began treating me right away. And that is the key, you need to find someone who will treat you.
I did want to share my experience on Predinisone. Recently when I was put on a taper down of prednisone, I really did feel better on it, but I did have anxiety attacks while tapering down. My blood pressure stayed high while I took it and I really had trouble with chest pain and shortness of breath. So in my case, I did have anxiety, but I also do have sjogren's. This is just a side effect I do get while on prednisone.
Don't give up. You are not alone.There is a doctor out there who will listen, you don't have to settle. In the meantime, I hope you start feeling better and your symptoms calm down.
Love, Missy
thank you for all the answers. i should have said i can never take nsaids because of my abdominal inflammation and bleeding. i have ultram do you think that would help with the chest pain?
i would love to get some info on flares...particullarly how long they have lasted for you and how often did you get them. if i am getting what i think are flares.....they are some what cyclic stomach/chest head one problem will start then another comes and the other one goes away.
all i know is something happened to me back in february and i have not been the same i would do anything...anything to get my life back
thanks for your support with my family sick and tired of me this forum really helps me vent to people who understand
I'm so sorry you are going through this. I just wanted to point out that tapering prednisone can make you feel really depressed. I get suicidal depression from prednisone tappers. If you are having thoughts of not wanting to live because of how sick you feel I really hope you get yourself some help and find someone you can talk to... even a suicide hotline.
That aside, I think you should let your doctor know that you are having symptoms return during the taper. You probably need to be on more prednisone again until you can get on something long term. And yes costrocondritits can REALLY hurt. A lot!
Please don't give up! It can take a long time to get proper treatment but the right doctor and treatment are out there for you and you'll find them in time.
*hugs*
-Lauren
I don't know if ultram would help, I have never taken it, though I believe it is a muscle relaxer, right? Costochooniditis (sp) is the inflammation of the thin sac surrounding your lungs,I do not know if that will help or not, maybe call your dr and ask what you can do since you can't take nsaids. I understand about that, I develop ulcers after using them more than 4-5 days or so.
Ultram may help. I take it for the aches and pains associated with Sjogrens when I need it. I also read that ultram is used for mild depression at times. I wouldn't use it for that though...just to help ease the pain.
Hope you feel better soon and research for a better Doctor.
Take Care!
Vicky
Flares really do have a mind of their own. Sometimes it will last a week or so, but I have had a flare that lasted over a month. Every one is different. Since I have been on plaquenil they are not as bad. As for the ultram and chest pain, of course you do want to rule out any heart trouble. Then if it is anxiety or stress induced, sometimes it will help to identify that and find a way to calm down, meditation, or something that helps you relieve stress. I also agree ultram may help. But for sure, find a Doc that will listen and treat you.
Wow, Silkalot, I'm so sorry you had that ER experience. I know there are good and caring doctors out there, and some of the people here have found some. I am waiting to meet my rheumy, but in general I am fed up with the docs I have worked with and who have treated my husband. I am disgusted with the impersonal treatment, no eye contact, and the lack of empathy or concern.
When my internest told me I tested fro Sjogren's, he told me as he typed on the computer, and lowered his voice when he said Sjogren's. I had to as him to repeat himself. I said to him "Doesn't Sjogren's attack the kidneys and lymph?". "Oh no" he said. "Just keep taking Advil and I will refer you to a rheumatologist". That was it. Well, he was wrong and told me NADA. I don't have my appointment till July 22!
Don't let these rude, undereducated docs get you down!
After working in a hospital for several years with a pulmonary team, I do know some things about respiratory problems. Plus I have them. Chostrochondritis is the inflammation of the cartilage between your ribs. It hurts if you press on the outside of your ribs where the pain is or if you take a deep breath or cough. Pleuritis is an inflammation of the membrane surrounding your lungs. It hurts on the inside. It is what people with autoimmune diseases get. It does not hurt to press on the outside of your ribs. It hurts to take a deep breath, cough, sneeze. It feels like someone is stabbing you with a knife (not that I've ever been stabbed with a knife). When it is bad, a doctor can hear the lining (the pleura) rubbing against your lung. It can be exacerbated by things that are irritating like cold air, smoke, cleaning products. Prednisone helps the inflammation of pleuritis. Ultram helps with the pain. (It is like a narcotic but not one.) Also lie down on the spot where the pain is and hold the spot if you can when you cough. I have taken prednisone several times for pleuritis and it gets better but it is never fixed. It comes back - especially if I catch a cold, and during the winter. I don't know what your chest pain is from but a thorough examination by a doctor who is trying should help. I also received a diagnosis of chostrochondritis after an emergency visit for chest pain. But when I saw my own doctor and was able to point to the pain and he could not find pain in my ribs and listened to my lungs and heard rubbing inside where I had pointed out the pain, then the diagnosis was pleuritis. I'm sorry you had a bad experience. I try to avoid ER or Urgent Care visits where I see a doctor who does not know me. But sometimes you have to, especially for chest pain. I would keep the follow up appointment with the Rheumatologist.
KathyL
Hi Sikalot,
I'm sorry that you've had a miserable experience at the ER, the doctors there can be "interesting".
Have you called the doctor's office to see if they have someone that you can see on an urgent basis perhaps? I know that Chostrochondritis can be very painful, but I don't know if Ultram will help as I've never used that particular drug either.
I know that you are miserable, it's tough to be ill, and with young children it just makes it that much harder.
Hang in there and take care -
Patze
Kathy, Thanks for clearing that up, you are right of course, I had mixed those 2 up, and I had the same experience as you, where they said it was the costo one, but then it really turned out to be pleuritis, but I have also had costo. at another time. I'ts confusing.. Thanksfully it's been about 5 years since I've been where sikalot is at right now, so much of those days are a blur :D
Missyb
I think it is really hard to tell the two apart sometimes even for a doctor. I have never had costrochondritis before but I am well acquainted with pleuritis. I wish I wasn't. I think costrochondritis is an easy diagnosis that doctors give for chest pain when they have no idea what is wrong with you.
KathyL