Hi all! This week I found myself in the ER with chest pain so bad I thought I was having a heart attack. I had all the usual symptoms, pain in the shoulders that came around to the center of my chest, then broke out in a sweat and finally threw up. The doctor said it wasn’t a heart attack, blood clot or stroke, but believed it was early signs of heart trouble. They admitted me to watch me over night and do a stress test. Thankfully my heart is in good shape. I have a hiatal hernia and they told me they believe I have acid reflux. I was a bit dumbfounded since I don’t have issues with noticeable acid coming up. He said I could still have it without the acid coming all the way up. I have been dealing with discomfort in the middle of my chest for quite a while and feel like something is squeezing my chest which makes it more difficult to get a deep breath. I had this before the ER but more constant now. I told you all that to ask this, could this have been caused because of SS? Does anyone else deal with this too? If so, how do you find some relief?
I forgot to add they started me on Pepcid but it is still uncomfortable.
ST, I am sorry to hear you are dealing with all of this. It is so hard to know what is related to SS or what else it might trigger. I personally haven't dealt with that type of thing, though I actually do have heart issues. I do hope they get to the bottom of this for you.
Hi Sick and Tired,
I have a hiatal hernia, that they FINALLY discovered, when the last xray tech told me to bear down, and that is when it showed up. I attribute mine to 20 years of gall bladder problems, including projectile vomiting. I think the force of that was the cause of mine, but who knows for sure!
Digestive issues seem to come hand and hand with this, and many other autoimmune diseases.
I don't know your age, but I thought all of my digestive problems would end when the GB came out, but that was not to be. It was my chiropractor who told me that as we age, we have less and less digestive juices to break down foods. He recommended Spectrazyme, I cleared it with my MD and have taken it for about a decade now. It breaks down protein, dairy, and all other types of food. The relief this has given me is beyond words!
It is completely natural and plant based, but always check with an MD before adding a supplement.
Hope you get some answers and some relief,
SK
BTW, it is also possible that this could play a part. Something else many of us deal with is the costochondritis. I will tell you that it may not be the entire cause, but mine has lightened up considerably with the use of spectrazyme, so some of my digestive problems are at least a factor in the costo.
http://www.mayoclinic.org/diseases-conditions/costochondritis/basics/definition/con-20024454
Chest pain should never be ignored. It was wise to go to the emergency room. As SK said many of us have had costochondritis. This is an extremely painful condition that will make you feel like you were having a heart attack. It will not show up on any medical test. You will however feel a tender point around your ribs. It may hurt when you breathe. Doctors claim there is no treatment for this and then it will go away on its own. I know from experience that sometimes it just likes to hang on.
Continue to check out the possibilities. Pain is a signal that our bodies send out telling us to pay attention. I hope that you find answers and relief soon. Feel better.
Costochondritis....that's what name of that? I have had it since my mid-20s and it has landed me in the emergency room. I've had doctors explain what is going on but I had never heard the name for it. (had to google it just now. LOL). Learn something new every day. It is incredibly painful and can definitely mimic a heart attack, but like Cassi said, never ignore pain. Wishing you relief.
I have a problem when I'm on steroids, and when I'm in bed for a period of days (I have severe asthma so this is true of every hospital stay )...I get excruciating CRUSHING pain in my chest and it radiates up into my jaw. There have been a number of times when I almost went to the ER --despite KNOWING what the problem was. I get a buildup of gas....and the only thing that relieves it is to take Simethicone and then to do twisting toe touches.....This will prompt HUGE belches and then the pain goes away. It is such a blessing when it goes because the pain is severe.
That word is certainly new to me too!
My pulmonologist told me that many people who suffer from GERD (acid reflux) don’t even know it because they don’t have any symptoms. Even though I had symptoms I was shocked to learn it was the cause of my chronic cough, so it can affect us in ways we don’t even think about. As you may know, GERD is a common occurrence in those of us with SS. They put me omeprazole (Prilosec) and it’s completely cleared up my cough as well as the heartburn and discomfort.
Hoping you feel better soon.
Liz
Good morning! The pain in my chest was secondary to the fear in my heart! (I’m a grandmother and my Asperger grandson depends on grandma’s love.) I would like to share my personal journey with pain in my chest. Because I believe every bit of info helps along this scary & slippery autoimmune road. I was hospitalized for four days for the same symptoms plus syncopy. I was diagnosed with “an autoimmune” disorder & Post Traumatic Brain Injury. I was referred to a Rheumatologist & a Neurologist. And here I am. The pain in my chest was then ignored due to other symptoms complicating my doctor visits & because I self diagnosed (via research) my chest pain as early stages of Pulmonary HYPERTENSION. Bad word I know “self diagnosed”. Apparently this disease is very, very difficult to diagnose early. So I sought alternative remedies and… blah, blah, blah… I even get tired of hearing myself!
Thanks everyone! I'm so glad I found this group. I was just diagnosed this year, in May, after 20 plus years of pain and fatigue. The dry eyes and dry mouth came later but I never knew that was a symptom of anything serious and the eye doctors and dentists never mentioned anything about it when I saw them. To be fair, I never complained about the dryness because I just thought it was normal for me. SK, I'm in my mid 40's. I very much appreciate everyone's feedback. I read a lot of the discussions posted on this site even though I don't often respond to many. With still being a "newbie" to this, I'm still learning a lot, and you've all helped so much already. I'm going to look into what you've all suggested and talk to my rheumatologist next month. I was suppose to see him this last week on Tuesday but the ER doc said that trumped seeing my rheumatologist. And I had a list to talk with him about too! ;) Wishing you all well!
How timely! I also went to the ER last week with chest pain, nausea, and pain when taking deep breaths. I am still able to be pretty active, so I was shocked that this was happening. I was released after blood tests and a chest xray. They said the joints around the ribs can become inflamed, causing the problem. It went away after 3 days. I was just grateful I wasn't having heart problems!
I used to have what they called silent reflux, but it has completely gone away with diet changes. No nightshades, very minimal caffeine, gluten free, minimal sugar. I also now take probiotics which is great for gut health. Not a fun diet, but has helped immensely. I was told to be very careful of all meds for heartburn and to not stay on them long term. They are overprescribed and often do other damage. It is actually not good to lower your acid levels, your stomach needs it for digestion and it often naturally lowers with age. Again, they are treating the symptoms, but not the cause of the reflux.
I have silent reflux and deal with by taking 80 mgs of Nexium daily.
I am 78 years old and I have had SS for about 30 years. It began with just dry eyes and mouth but I have slowly developed other problems.
I have osteoarthritis, costochondritis as well as Ekbom Syndrome which I have had from childhood. My ribs and chest area hurt to touch so I don't wear a bra any more. Most of my bones hurt to touch and my knees, elbows etc. are all swollen. I also have carpal tunnel syndrome and an operation was suggested recently and I think I will have to go along with that as I keep dropping things, I can't hold a book to read it and writing and sewing now hurts after a while.
I get very tired and I ache all over. I can only sit in a chair for a short time unless I take a painkiller so I usually lie on the settee. I have trouble getting to sleep at night, though I easily fall asleep during the day. I don't often see the end of TV programmes as I fall asleep. I get very irritable and easily upset.
I can actually do most jobs around the home but unfortunately I don't think I should, as I suffer for it later in the day. I just do things without thinking about it first.The best cure for me is to soak in a hot bath but it is not very practical.
About 18 months ago I began to have trouble breathing, mainly during exercise. My Doctor didn't believe I had a problem as she heard nothing when listening to my chest. It was getting worse, so about 6 months ago I happened to see a different Doctor who arranged for me to see a heart/lung specialist.
I had a lung x-ray which was clear so I then had a CT scan. It showed slight inflammation at the bottom of my lungs (Very mild bronchiectasis) which was not enough to cause my problem.
Because I had rheumatic fever as a child which left me with a very slight heart murmur, I had an electrocardiogram the other week and on Thursday I get the results. Very apprehensive.
About 4 years ago I noticed that when I had a photo taken my mouth was straight and yet in the past one side had always been higher than the other. I was worried so asked the Doctor who said it was definitely not a stroke but was due to ageing But I have never been totally satisfied with that answer.
I am really fed up and it is only in the last year or so that My Husband decided that SS was real and not something I had heard about, decided I had and so was all in my mind. He changed his mind when he discovered that I was charged extra on my holiday insurance to cover SS. I rarely get any sympathy. My Daughter lives the other side of the world in Australia and my Son lives some distance away.
I have gone on for long enough.
I am glad I found this site. It helps to know that I am not alone with this.
said:
I am 78 years old and I have had SS for about 30 years. It began with just dry eyes and mouth but I have slowly developed other problems.
I have osteoarthritis, costochondritis as w
Ali ell as Ekbom Syndrome which I have had from childhood. My ribs and chest area hurt to touch so I don't wear a bra any more. Most of my bones hurt to touch and my knees, elbows etc. are all swollen. I also have carpal tunnel syndrome and an operation was suggested recently and I think I will have to go along with that as I keep dropping things, I can't hold a book to read it and writing and sewing now hurts after a while.I get very tired and I ache all over. I can only sit in a chair for a short time unless I take a painkiller so I usually lie on the settee. I have trouble getting to sleep at night, though I easily fall asleep during the day. I don't often see the end of TV programmes as I fall asleep. I get very irritable and easily upset.
I can actually do most jobs around the home but unfortunately I don't think I should, as I suffer for it later in the day. I just do things without thinking about it first.The best cure for me is to soak in a hot bath but it is not very practical.
About 18 months ago I began to have trouble breathing, mainly during exercise. My Doctor didn't believe I had a problem as she heard nothing when listening to my chest. It was getting worse, so about 6 months ago I happened to see a different Doctor who arranged for me to see a heart/lung specialist.
I had a lung x-ray which was clear so I then had a CT scan. It showed slight inflammation at the bottom of my lungs (Very mild bronchiectasis) which was not enough to cause my problem.
Because I had rheumatic fever as a child which left me with a very slight heart murmur, I had an electrocardiogram the other week and on Thursday I get the results. Very apprehensive.
About 4 years ago I noticed that when I had a photo taken my mouth was straight and yet in the past one side had always been higher than the other. I was worried so asked the Doctor who said it was definitely not a stroke but was due to ageing But I have never been totally satisfied with that answer.
I am really fed up and it is only in the last year or so that My Husband decided that SS was real and not something I had heard about, decided I had and so was all in my mind. He changed his mind when he discovered that I was charged extra on my holiday insurance to cover SS. I rarely get any sympathy. My Daughter lives the other side of the world in Australia and my Son lives some distance away.
I have gone on for long enough.
I am glad I found this site. It helps to know that I am not alone with this.
How are you today sick&tired?
Ali I am so sorry you have been through so much. It is a good place to vent here with people who understand. Sometimes it takes family a little longer to catch on and believe but it certainly adds to the burden our symptoms bring.
Glad you are here.
Cassi440, I felt pretty good today. Chest is still tight but not painful. I felt so good I went for a nice walk with a friend while my son was at football practice tonight. So thankful for good days. Thanks for asking and checking on me. That means so much to me.
Hi Ali, good to hear from you again!
I had to look up Ekbom syndrome, which referred me to delusional parasitosis,
http://en.wikipedia.org/wiki/Delusional_parasitosis
I noticed that you mentioned taking pain killers, and there is nothing better than a pain killer to make you feel as though you have bugs crawling under your skin. I have to take Benadryl (with my prescribing Drs permission) whenever I take a pain pill, and even that only helps a little bit. I cannot even begin to tolerate an extended relief narcotic (ER) as they are loaded with a type of excellerant such as caffeine that will only make it much, much worse.
Now I am not a Dr, and am not attempting to make a diagnosis here, but I go through this too and it's unnerving to say the least! It may be something to consider, as I can get this way if I drink too much iced tea.
I wish you well,
SK
Ali said:
I am 78 years old and I have had SS for about 30 years. It began with just dry eyes and mouth but I have slowly developed other problems.
I have osteoarthritis, costochondritis as well as Ekbom Syndrome which I have had from childhood. My ribs and chest area hurt to touch so I don't wear a bra any more. Most of my bones hurt to touch and my knees, elbows etc. are all swollen. I also have carpal tunnel syndrome and an operation was suggested recently and I think I will have to go along with that as I keep dropping things, I can't hold a book to read it and writing and sewing now hurts after a while.
I get very tired and I ache all over. I can only sit in a chair for a short time unless I take a painkiller so I usually lie on the settee. I have trouble getting to sleep at night, though I easily fall asleep during the day. I don't often see the end of TV programmes as I fall asleep. I get very irritable and easily upset.
I can actually do most jobs around the home but unfortunately I don't think I should, as I suffer for it later in the day. I just do things without thinking about it first.The best cure for me is to soak in a hot bath but it is not very practical.
About 18 months ago I began to have trouble breathing, mainly during exercise. My Doctor didn't believe I had a problem as she heard nothing when listening to my chest. It was getting worse, so about 6 months ago I happened to see a different Doctor who arranged for me to see a heart/lung specialist.
I had a lung x-ray which was clear so I then had a CT scan. It showed slight inflammation at the bottom of my lungs (Very mild bronchiectasis) which was not enough to cause my problem.
Because I had rheumatic fever as a child which left me with a very slight heart murmur, I had an electrocardiogram the other week and on Thursday I get the results. Very apprehensive.
About 4 years ago I noticed that when I had a photo taken my mouth was straight and yet in the past one side had always been higher than the other. I was worried so asked the Doctor who said it was definitely not a stroke but was due to ageing But I have never been totally satisfied with that answer.
I am really fed up and it is only in the last year or so that My Husband decided that SS was real and not something I had heard about, decided I had and so was all in my mind. He changed his mind when he discovered that I was charged extra on my holiday insurance to cover SS. I rarely get any sympathy. My Daughter lives the other side of the world in Australia and my Son lives some distance away.
I have gone on for long enough.
I am glad I found this site. It helps to know that I am not alone with this.
It is restless legs syndrome that I suffer from as does my daughter and to a lesser degree my son. The only time it went away was when I was pregnant but then returned. If you want a laugh, my legs used to kick in bed when I was asleep and I would kick my husband so he had to wake me up to stop me.
I take ReQuip XL slow release tablets which are marvellous. My Daughter in Australia also takes them. This slow release version has not been on the market very long. They were originally prescribed for Parkinson's but my Doc let me try them years ago but my Daughter wasn't as lucky as she had to wait until they were licenced for RLS in Australia.
Painkillers I only take when I really need them.
Thank you for reply.
SK said:
Hi Ali, good to hear from you again!
I had to look up Ekbom syndrome, which referred me to delusional parasitosis,
http://en.wikipedia.org/wiki/Delusional_parasitosis
I noticed that you mentioned taking pain killers, and there is nothing better than a pain killer to make you feel as though you have bugs crawling under your skin. I have to take Benadryl (with my prescribing Drs permission) whenever I take a pain pill, and even that only helps a little bit. I cannot even begin to tolerate an extended relief narcotic (ER) as they are loaded with a type of excellerant such as caffeine that will only make it much, much worse.
Now I am not a Dr, and am not attempting to make a diagnosis here, but I go through this too and it's unnerving to say the least! It may be something to consider, as I can get this way if I drink too much iced tea.
I wish you well,
SK
Ali said:I am 78 years old and I have had SS for about 30 years. It began with just dry eyes and mouth but I have slowly developed other problems.
I have osteoarthritis, costochondritis as well as Ekbom Syndrome which I have had from childhood. My ribs and chest area hurt to touch so I don't wear a bra any more. Most of my bones hurt to touch and my knees, elbows etc. are all swollen. I also have carpal tunnel syndrome and an operation was suggested recently and I think I will have to go along with that as I keep dropping things, I can't hold a book to read it and writing and sewing now hurts after a while.
I get very tired and I ache all over. I can only sit in a chair for a short time unless I take a painkiller so I usually lie on the settee. I have trouble getting to sleep at night, though I easily fall asleep during the day. I don't often see the end of TV programmes as I fall asleep. I get very irritable and easily upset.
I can actually do most jobs around the home but unfortunately I don't think I should, as I suffer for it later in the day. I just do things without thinking about it first.The best cure for me is to soak in a hot bath but it is not very practical.
About 18 months ago I began to have trouble breathing, mainly during exercise. My Doctor didn't believe I had a problem as she heard nothing when listening to my chest. It was getting worse, so about 6 months ago I happened to see a different Doctor who arranged for me to see a heart/lung specialist.
I had a lung x-ray which was clear so I then had a CT scan. It showed slight inflammation at the bottom of my lungs (Very mild bronchiectasis) which was not enough to cause my problem.
Because I had rheumatic fever as a child which left me with a very slight heart murmur, I had an electrocardiogram the other week and on Thursday I get the results. Very apprehensive.
About 4 years ago I noticed that when I had a photo taken my mouth was straight and yet in the past one side had always been higher than the other. I was worried so asked the Doctor who said it was definitely not a stroke but was due to ageing But I have never been totally satisfied with that answer.
I am really fed up and it is only in the last year or so that My Husband decided that SS was real and not something I had heard about, decided I had and so was all in my mind. He changed his mind when he discovered that I was charged extra on my holiday insurance to cover SS. I rarely get any sympathy. My Daughter lives the other side of the world in Australia and my Son lives some distance away.
I have gone on for long enough.
I am glad I found this site. It helps to know that I am not alone with this.