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 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.
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.
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-
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.
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
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
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
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.
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.
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
I hope that this information has been helpful to you
Peace and Blessings
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"
Originally Posted by kcw9hurricane
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.
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. :?
Originally Posted by shystee999
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:
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!
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.