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TumbleweedPDX
10-18-2005, 07:48 PM
I am a newbie here, so hello all!

Monday morning (at about 2:30am) I woke up with horrible chest pain right in the middle of my chest. It felt almost like a muscle spasm and the pain actually woke me up. This has happened before and I went to the emergency room thinking I was having a heart attack. (It is THAT painful) The ER doctor ran an EKG and told me I was too young to have a heart attack (36). What a crock. Anyway...I didn't go to the ER this time because I also had a migraine and didn't want to sit there just to be dismissed again. ( I have an appointment with my Rheumy on Friday)

My question is... Have any of you experienced this and, if so, what did you rhuemy do about it? I read that it can be anything from GERD to heart problems. I'm a little scared. I think I will push Dr to recommend a cardiologist just to make sure and to put my mind at ease.

Any info you could share would be great!

Cyndee

Saysusie
10-19-2005, 08:23 AM
Hi Tumbleweed:
Yes, what you are experiencing is not uncommon and many people with Lupus suffer from chest pains for serveral reason. Both my daughter and I had chest pains. Hers was due to pericarditis. Here is a brief explanation of pericarditis:
Pericarditis is an inflammation of the sac around the heart, it is the most common heart involvement in people with lupus. This condition occurs when antigen-antibody complexes-also known as immune complexes-are made during active lupus and cause inflammation within the pericardium.
Symptoms are sharp chest pain that can change with changes in the body's position and frequently may be relieved by leaning forward slightly; this chest pain may feel like a heart attack! Occasionally, shortness of breath can occur.
Pericarditis can occur in conditions other than lupus, therefore the cause must be determined before treatment begins. To help diagnose pericarditis, the following tests may be ordered:
blood tests
chest x-rays
electrocardiogram (EKG)
echocardiogram (ultrasound of the heart) can tell if there is fluid around the heart.

My chest pains were from Pleuritis; below is a brief explanation of Pleuritis (inflammation of the lungs):
Pleuritis (pleurisy) is the most common pulmonary (lung) manifestation in Lupus. The pleura is a membrane that covers the outside of the lung and the inside of the chest cavity. It produces a small amount of fluid to lubricate the space between the lung and the chest wall. As lupus activity generates immune complexes, they initiate an inflammatory response at this membrane, a condition called pleuritis.
Symptoms of pleuritis are severe, often sharp, stabbing pain that may be pinpointed to a specific area or areas of the chest. Sometimes the pain is made worse by taking a deep breath, coughing, sneezing, or laughing.

Nearly all lupus patients have chest complaints at one time or another. Most of the complaints are not related to the heart, even though they may be present in the area around it. For instance, the costochondral margins (where the breast bone, or sternum, attaches to the ribs) may become irritated and produce chest pains. Many patients think they are having heart problems, but it can be easily differentiated from a cardiac problem because the area is tender on being touched. Also, the esophagus is directly behind the heart and pressure sensations under the breast bone can result from esophageal spasm. Occasionally, patients with shortness of breath or asthma believe their pain is cardiac.
Patients with systemic lupus erythematosus frequently have inflamed heart tissue, and as a result have a rapid pulse. This racing of the heart or tachycardia, is common in the disorder and is managed with anti-inflammatory therapies. Tachycardia may have others causes also, such as an infection. Chest pains from the heart are generally a consequence of the two conditions I mentioned above; pericarditis or myocarditis.
Palpitations, or irregular heart beats, may result from mitral valve prolapse, Libman-Sacks endocarditis, or artherosclerotic disease.
Lupus patients are more susceptible than others to hardening of the arteries in the heart area because of their increased prevalence of high blood pressure and elevated cholesterol levels due to steroid therapy.
Lupus can affect the heart in a variety of ways, ranging from infection to inflammation, and these can produce numerous symptoms and signs. There are inexpensive and noninvasive procedures, such as an EKG or 2-D echo, that can be used to identified and appropriately manage any heart manifestation as a result of lupus.
I hope that this has been helpful!
Peace and Blessings
Saysusie

Ouisch
10-26-2005, 10:40 PM
The one time I had such severe chest pain that I was literally doubled over, it was (of course) during off hours when my rheumy's office was closed. My husband took me to the ER, but there was such a long wait, and I was moaning with each breath I took (it felt better to lean forward and exhale), so we left there and he took me to one of those Urgent Care clinics. They did an EKG and other tests, and luckily, the doctor was a woman who was familiar with Lupus. She asked some other questions and determined that I had pericarditis. She gave me an Rx for an anti-flammatory (I hadn't been taking one at the time), and within two hours the pain had all but subsided.

Ariel
10-27-2005, 04:29 AM
I am a newbie here, so hello all!

Monday morning (at about 2:30am) I woke up with horrible chest pain right in the middle of my chest. It felt almost like a muscle spasm and the pain actually woke me up.

Had you anything warm to drink? A lupus flare I had last year I experienced heart attack-like pain in the center of my chest and it turned out to be esophageal spasms. I noticed I would get them when I drank coffee or tea. Some people get them after drinking something cold.

Mine just went away without treatment but some people have to take medicine for it if it is chronic.

Ariel

OsloCalling
11-29-2005, 09:30 AM
Cyndee!

How are you now? Did you get rid of your chest pain?
I am a norwegian girl living in Oslo, 28 years old.

I got SLE and Sjøgrens Syndrom when I was 19.
I suddenly woke up in the middle of the night with terrible pains in my chest, I got really afraid. Before that I had not noticed any other symphtoms. I got my diagnose, but mye problem is that I did not get rid of the pains. They are not as bad as back then, but it hurts when I breathe in (sorry for my English, I have spent many years in Berlin, so I "lost" my English among german words....)

So, I am very curios to find people with the same problem.
I take medicines, but they don\t work aigainst the pain... the doctor does not know what to do, there is no inflammation at the moment (the doctor cannot find anything on the pictures) - but I have problems with sports and activity because of this and walking up stairs for example.
Maybe you have got some good tips?

Back then (1997) I had a pericarditis and pleuritis, which Saysusie describes.

OsloCalling

Melart
12-01-2005, 05:36 PM
OsloCalling, I can only offer some hope of relief from scare. I have the same symptoms as you are having and have had them for 20 years or more. I have found nothing to help the situation but nothing ever got any worse or caused any serious problem. I do not recommend that you try this but I got so disgusted one time that I just kept going when my breath shortened and it did not cause me any other problem but did not let up either. I get the throat closing symptom when I drink something cold only if I am thirsty and not just when I drink a cold drink.

Melart

OsloCalling
12-03-2005, 07:56 PM
Hi! Thanks for your report and support!

What ist the "throat closing symptom" - never heard of that...

a doctor told me newly, that my symptoms are normal, she called it "shrimping longues". and she ment I have to live with it, but fysiotherapie (?) may help. I get worse, when I push myself, so for me it is importan not to be "overactive"...

OsloCalling
12-03-2005, 07:59 PM
Sorry: shrinking lungs

christinapoem
04-17-2006, 09:21 PM
hi..I had pericarditis twice at the start of my symotoms. I sitll have strange and various types of chest pains. I have no idea how I would ever know if I was actually having a heart attack someday!! Also, I have neuropathy. Until recently it had only been in my limbs..causing severe cramping. Now at times I get bad cramps in odd places...a few times it has been close to the middle of my chest.

This whole dx is so frustrating :roll:

shystee999
04-17-2006, 09:27 PM
That's weird that the ER would have you wait while you were having severe chest pain. I would think that would be a reason to be one of the first seen by the doctor. That's odd??? Does anyone mnow why chest pains are not a priority in the ER? Maybe I don't know the whole story?

kcw9hurricane
04-28-2006, 06:17 AM
At the age of 29, I sat in an ER with severe chest pain that like you, woke me up. I couldn't breathe, was sweating, and having pain radiating down my arm as well. Of course, they said I was too young. In fact, I was having a heart attack.

At the age of 32, now, I have severe chest pains often. My EKG's, ECHO's, and stress test all look great. Even did a Heart cath. What we found in that I had PE's. Pulmonary embolisms caused by lupus. A tiny clot can and did cause my heart attack at the age of 29. I am now on blood thinners and will be for the rest of my life since lupus can cause blot clots at any time.

catlady4520
04-29-2006, 03:10 PM
I too had had a bout with severe chest pain several years ago. I thought it possibly was a heart attack as heart disease runs in the women's side of my mom's family. After many tests, they diagnosed me with costchronditis. The way it was explained to me is, it's an inflammation of the cartilige that joins your ribs to your breast bone. The pain was incredible! This was the start of my trips to the rheumatologist when they found I had a very positive ANA.

Now after seeing a rheumatologist for about 5yrs, I was finally diagnosed last summer with lupus of the brain. So I guess this sort of problem can be an initial sign of lupus.

kcw9hurricane
05-01-2006, 07:00 AM
I have never heard of Lupus of the brain. In what ways is that different? Sounds scarey. I guess anytime you involve the brain, it can be that way. Just curious.

Saysusie
05-01-2006, 10:35 AM
Hi Kcs9hurricane:
Lupus is a disease which can affect any organ, including the brain. Today, "brain lupus" can include a myriad of neurological and psychiatric problems, including severe headaches, memory loss, strokes, seizures and even psychosis. It is now known that brain disturbances are probably quite prevalent in SLE if one includes "mild" symptoms such as headaches and depression, the figure may be as high as 80% or more Lupus patients have some sort of brain involvement. The symptom of brain involvement can be the most frightening of all in Lupus. Fortunately it is rarely permanent. "If one thinks about it, the brain, if insulted by virus, or antibodies or whatever, has a fairly limited repertoire of ways in which to complain."
The main symptoms of central nervous disease (brain involvement) are headaches, thought or mood disorders such as depression, phobias and seizures.The symptoms are reviewed briefly below-

HEADACHES

Recurrent headaches or migraines are one of the commonest features of Lupus.
There is often a past history of migraines in a patient going back to their teens.
In later life, also when the vigorous throes of Lupus may be in remission, patients report
recurrent and debilitating headaches.
Their exact cause is a mystery, though it is possible to imagine the brain's blood vessels
behaving like those in the fingers of Raynauds, i.e. going into spasm or contracting and
cutting down the blood flow.

MOODDISTURBANCES

These are extremely common. Most Lupus patients have at some time suffered from
periods of depression (including post natal depression).

While this was once thought to be simply a reaction to having a chronic illness, we now
recognise that it is more. Indeed, it may be an indication of a disease flare.
In some patients the flare of the disease may take on an even more alarming - thought
disorder.
These can vary from agoraphobia (quite a common complaint) to severe behavior
disorders which usually reverse with treatment (often steroids) and luckily is rarely any
lasting abnormality. It does make one wonder about how many people whose Lupus first
presents within psychiatric disorders are not diagnosed, even worse, wrongly diagnosed.

Thanks to the efforts of many Lupus researchers, as well as patient education groups, this
aspect of Lupus, together with it's good prognosis is more universally emphasised in
medical training.

SEIZURES

The first sign of Lupus of the brain may be the very dramatic fit or seizure, indeed, in some
Lupus patients, a history of fits or epilepsy precedes the diagnosis by a number of years.
More usually, the history is of one or two fits at the height of a Lupus flare or in active
untreated disease.
Treatment is usually very effective.

Despite the dramatic nature of the symptoms, the outlook or prognosis is usually excellent.
The solitary fit in a Lupus patient presents a thorny problem concerning drivers licenses.
The law is strict, despite the fact that in most patients there is little likelihood of recurrence.

STROKES

Some patients suffer transient or split second visual loss or equally transient weakness
symptoms in common. True strokes are fortunately extremely rare. One of the aspects of
our research in the Thomas Lupus Research Laboratory has been to pin-point the causes of
the unusual features of SLE. The likeliest reason seems to be a sludginess of the blood,
and already we have a means of testing blood samples for risks of these complications.

TREATMENT

The main weapon is knowledge. While there is no more frightening aspect of any disease
than a disorder of the brain. It is important for both patients as well as doctors and relatives
to know that a great majority of SLE patients, brain disease is NOT permanent.
Generally treatment includes rest, specific remedies such as beta blockers, avoidance of
stress (though this is usually easier said than done) and of course, treatment of the disease
flare itself.

I hope that this information has been helpful to you

Peace and Blessings
Saysusie

Annie
07-04-2006, 08:08 PM
At the age of 29, I sat in an ER with severe chest pain that like you, woke me up. I couldn't breathe, was sweating, and having pain radiating down my arm as well. Of course, they said I was too young. In fact, I was having a heart attack.

At the age of 32, now, I have severe chest pains often. My EKG's, ECHO's, and stress test all look great. Even did a Heart cath. What we found in that I had PE's. Pulmonary embolisms caused by lupus. A tiny clot can and did cause my heart attack at the age of 29. I am now on blood thinners and will be for the rest of my life since lupus can cause blot clots at any time.

I had those same symptoms last summer. I was at work at the time and thaught I was having a heart attack. I "talked myself out of" the idea of there REALLY being any problem. I ended up going home from work early to lay down. When I got home my family called 911. As the ambulance rushed me to the hospital I INSISTED to the paramedics that there was NOTHING wrong with me. Again in the ER I insisted there was NOTHING wrong with me and I was VERY upset when the ambulance crew actually LEFT me there. No time was wasted and I was admitted ASAP. I informed the doc "Look I gotta get home I need to work early in the morning" He told me "Well you better call cause your gonna be here a while!" I think I asked if I would make it in by noon. He told me "You wont make it in by NEXT weekend"

From then on I dont remember anything until like 4 days later. What I found out was that I too had a pulmonary Embolism. I had no clue what that even was then. But I tell you now it scares the bejesus out of me. My doc told me that ANYTIME I have any sort of problem breathing or with chest pain that I MUST go to the ER immediatly. But I dont want to become one of those people that goes for nothing. So how do I know when I HAVE to go and not jsut because Im having a bad day?

Ive had those type of chest pains many times along with the difuculty breathing. But they were never as bad as that night. Several weeks after my PE I ran into the paramedic that was on my call. I told him I STILL felt like an idiot and that I thaught everyone over reacted. He informed me that had I layed down like I wanted to do that within an hour I probably would have been dead.

So now I jsut dont understand on WHEN I need to call for help. I dont want to be that bad again, but I also have learned that even with the coumiden my blood will (and has) still clot.

I appreciate any advice you can give me. :)

Thanks

Ouisch
08-11-2006, 07:08 PM
That's weird that the ER would have you wait while you were having severe chest pain. I would think that would be a reason to be one of the first seen by the doctor. That's odd??? Does anyone mnow why chest pains are not a priority in the ER? Maybe I don't know the whole story?

We lived in Detroit at the time, and the nearest hospital was St. John. It's a good hospital with an excellent reputation, but because of its location, a lot of low-income people go to the ER whenever they're sick, because they don't have insurance. (The ER has to treat them; many regular doctors won't treat you if you can't pay.) Not to mention the OD cases and such that plague urban areas. When I went to the ER that day, there was a line waiting to get into the triage area, as you had to go through a metal detector first, and then a security guard was going through purses, etc. I couldn't wait for all that, so we headed out to the suburbs. :?

kimb
08-19-2006, 02:49 PM
8) Hi All, I have been battling pleursy, pericarditis with and without effusion, since April 05. Numerous trips to ER for chest pains...... Have been trying to lower my predinsone, and each time, the chest pain comes back, about 7 times in this time period. I have searched on the net about recurrent pericarditis and found that it can become steroid dependant, and research has found that sometimes the medication Colchicine can help with the inflamation enough for the patient to get lower, or even off of prednisone. Great! I have been on Colchicine for 2 months now, and just lowered my dose again today to 12.5mg pred. I will continue to lower the dose until I get to 10mg, then I will lower by 1mg every 2-3 weeks. (I also take Methotrexate 10mg weekly)
I have a nother Lupus buddy who suffers from constant chest pain, but it has not been pinpointed yet.
My question is, what other medications do you take? Is your pain more when you lie down, cough or sneeze? laugh?
Good luck to you, hope you find something to help. :lol:
kimb/calif.

Saysusie
08-20-2006, 08:41 AM
The best advise is:
When you feel the pain, immediately call your emergency room, immediate care, or on-duty nurse and explain the pain to them. They will advise you weather or not you need to come in to the hospital!! Do not wait until the pain is unbearable..call AS SOON AS YOU FEEL THE PAIN!!!
If the pain starts out as tight, breathing is difficult, you are sweating or unable to speak...CALL 911 immediately!!
Do not fool around with any kind of chest pain! It is better to be a pest at the hospital than to be on an emergency room operating table!

Saysusie

Margo
09-24-2006, 03:13 PM
I have frequent bouts of chest and and have had cardiac caths as well. Even with nitro and morphine the pain is still there. If the doc in the ER will listen a heavery than normal dose of the steriods make my chest pain go away, solumedrol is what they used. The cardiologiest say it's vasculitis because of the LUPUS.