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kiml1123
04-25-2011, 09:59 PM
Hi, My name is Kim.
I am not sure if I should be here, I am looking for answers and thought you could help. I was Diag. with pericarditis in Dec 10'. I was off work for almost 3 months. did a couple rounds of steriods nsaids,pain meds and so on. Was feeling better went back to work for 2 weeks and it started all over. Did another round of steriods and more meds. I have sharp chest pain, short of breathe,Tired constantly no matter how much sleep I get.Cardiologist is now referring me to rheumotoligist. I have been looking online ( while waiting to get an appointment) Everything comes back to Lupus... I am scared to death, How do you cope with this? are you able to work? I am so tired I can't get through a day without a nap. Is there a "cure"? will I have it forever?
I feel like I'm being passed from Dr. to Dr. to find things out...
I should also mention I have Dialated cardiomyopothy,Left bundle branch block. pacemaker ( icd) diag. 12-05.
Any words of encouragement would be appreciated.
Thanks for reading<3

steve.b
04-25-2011, 11:54 PM
others will be along to say more.
lupus is no longer a death sentence.
many people still work, unfortunatelly i do not.
the medication helps with a lot of the effects,but fatigue is a big battle for most.
please look around and read the posts.
welcome to our lupie family

Peridot20_Gem
04-26-2011, 02:56 AM
Hi Kim,

Welcome to the WHL and it's nice to have you with us.

Alot of member's have heart trouble based on Lupus or through an immune Disease and i don't think you'd be seeing a Rheumo if nothing was suspected. Refering tiedness that's a main issue with Lupus and other lapping Diseases, so things have to be done slowly because i have breathlessness and chest pain besides back pain but my rheumo as'nt had me checked out, mind you he ah the most brilliant of rheumo's.

I'm like steve not been able to work for 25yrs through ailments one after the other and they've only found out about me having Lupus etc in the last 3yrs but someone will come along in due course and answer you to the best of their ability.

~Hugs Terri~ xxx

Peridot20_Gem
04-26-2011, 02:58 AM
Kim, i've added some info about Pericarditis and it may help why they're sending you to a Rheumo specialist.

Acute pericarditis
In around 90% of cases of acute pericarditis, no obvious cause can be found to explain why the pericardium has become inflamed. Many cases are thought to be the result of viral infections, which current diagnostic technology is generally unable to detect.

Viral infections
Viral infections associated with acute pericarditis include:

•infections such as the common cold or viral meningitis, which are caused by a group of viruses known as enteroviruses
•infections caused by adenoviruses, such as such as pneumonia or bronchitis
•glandular fever
•infections caused by the cytomegalovirus
•herpes simplex viral infections (cold sores or genital herpes)
•influenza
•slapped cheek syndrome
•hepatitis C
•HIV and AIDS
Other causes
Other less common causes of acute pericarditis include:

•bacterial infection, particularly tuberculosis
•autoimmune conditions such as rheumatoid arthritis or lupus, where the immune system attacks healthy tissues
•radiotherapy – the radiation used in radiotherapy can damage the tissue of the pericardium, and breast or lung cancer patients may be at particular risk
•kidney failure (when the kidneys stop working) – exactly why kidney failure causes acute pericarditis is unclear
•underactive thyroid gland (hypothyroidism) – exactly why hypothyroidism causes acute pericarditis is unclear
•cancer – cancer that spreads from other parts of the body to the pericardium can damage tissue
•heart attacks – pericarditis can sometimes develop after a heart attack, as damaged heart muscles can irritate the pericardium
•injury or irritation to the tissue of the pericardium that occurs during heart surgery
•severe injury to the chest, for example following a car accident
•some medications – for example, penicillin or some chemotherapy medicines have been known to trigger acute pericarditis as a side effect in some people
Recurring pericarditis
Despite being a relatively common condition, recurring pericarditis remains a poorly understood condition with little known about the cause.

One theory is that your immune system may be responsible. The theory argues that something goes wrong with your immune system many months or years after the initial infection that caused your first episode of acute pericarditis. It starts to produce infection-fighting antibodies that are meant to be used to fight the virus, but instead are sent to the heart, leading to inflammation of the pericardium. Exactly why the immune system would behave in this way is unclear.

Another theory is that fragments of the virus may lay dormant (inactive) in the tissue of the pericardium and then suddenly reactivate, triggering the process of inflammation.

What is known, is that people treated with corticosteroids during their first episode of acute pericarditis are six times more likely to go on to develop recurring pericarditis than people who do not receive this treatment. Because of this, corticosteroids are used as a last resort, if you fail to respond to other medications

lacey50
04-26-2011, 10:44 AM
Kim,
Try not to go into a Panic mode, I know easier said than done, but stress doesn't help, so breathe. Like Steve said, " Lupus is not a death sentence anymore." There are various meds that will help. The reason you are being sent to a rheumatologist is they generally are the doctors that care for patients with autoimmune diseases.

While you wait for your appt., make notes on all the questions you have. Write down all meds and supplements you are currently taking. The doc will want a complete history on you and may even ask about family members and any other autoimmune conditions. Try to be prepared. Do research of your own. Just be sure you are on reputable sites, remember you can not believe everything you read on the internet. Search through this forum, read info on the lupus foundation, or government sites like the National Iinstitue on Health.

If you do have lupus or any other autoimmune problem you will need to make some adjustments to your daily live, but you will go on and can lead a fairly normal live. We are all here for each other, we understand and we care. Come here often and ask any questions you may have or just vent.

And, Kim remember "Just Breathe!!!"
Lots of ((((((((((((((((Hugs)))))))))))))))))
Sue

tgal
04-26-2011, 11:19 AM
Hi Kim,

First off let me welcome you to WHL. We are so glad that you found us. I can't tell you if you have Lupus or an autoimmune disease but what I will say is that I think you need to make someone give you some answers. If your doctors are not giving you answers to your questions then find another one. You hired them and you can fire them as well.

Although I know that you are concerned and feel back please know that you can feel better. If the doctors can get you the right meds it is very possible that the fatigue can be reduced and the lung issues can be controlled. As was said above, Lupus and most autoimmune diseases are not necessarily a death sentence anymore however it often takes a long time to get a doctor who will diagnose it. Keep pushing for an answer as to WHY this keeps happening until you find someone willing to give you an answer.

"Is there a cure"? To that question the answer is no. There is no cure for Lupus. There are, however, many medicines that can help the disease either go into remission or reduce the severity of it to a point where it is classified as "mild lupus" and with that your flares (bad times) are further apart and your life may be more normal. As many have already told you there are a vast group of our members that are able to work. I have been off of work since last April but I do understand what you mean about trying to get through the day. When I did work it took everything I had just to finish the day and drive home.

Please try not to panic. I know that is hard to do but stress is one of the worst things you can do. Stress can only make things worse and for many, it will actually cause a flare. We are here for you now. You are part of our WHL family and you are no longer alone.

kiml1123
04-27-2011, 12:09 AM
wow, thanks for aal the info..xoxo

kiml1123
04-27-2011, 12:21 AM
Wow. Thanks for all the feedback :) ?I'm still trying to figure out how to post in the right spot so bare with me all...
Surprisingly, The Dr called this morning with a cancelation so I got to see her today!! ( Unbeliavable !!)
She took her time and read through all my files and asked tons of questions. Luckly I was prepared and had my list of questions and symptoms already listed. I think I shocked her. Any ways She is ordering a TON of blood work and so far is diagnoisning me with Fybromyalgia. We will see if the blood work comes back for Lupus..
Wierd, I am kinda relieved, to have an answer I guess. I think I'm in shock still. My Husband , well, He has tried to be patient through all of this. He basically asked if I would be taking more pills... He started to asl what all it was so I looked it up online and gave it to him to read.. Matbe tomorrow we will discuss it, but for now, I am avoiding everyone...I just want to sit and think it through... I guess one more week waiting for lab work isn't so bad.
I was actually lookining forward to posting tonight, ( I have no life right now :) this computer is my lifeline for the time being...
Thank you all for taking time to read ,,
xoxo <3Kim

steve.b
04-27-2011, 01:14 AM
great to hear the good news.

you are on the road to a new you.

many outo immune disorders are not cureable. you will find quite a few of us have more than 1 disorder.
Fybromyalgia is one of them that cannot be cured, but can be treated. i have it. it is 2 years after i was diagnosed, and life is bearable.

the pain etc. is treatable with the proper medication.

when i first was being diagnosed they took 15 vials for blood testing. by taking lots, they are testing properly for many different things. it helps to make a good diagnosis.

many of us keep a pain diary.
it it we keep track of what hurts and when.
how we feel at any particular time.

we then take it to our medical appointments. it helps the doctor with there diagnosis.
i suggest you consider keeping one.

good luck on your new journey.

Nat
04-27-2011, 03:36 AM
Hi Kim,
Glad you found this site, there are sooooo many helpful people around, many whom have been through the same things you're going through right now. I suffer from pleurisy so understand your pain with the chest..I also had a pulmonary embolism last year too. I know there are a lot of people around the site who are unfortunately unable to work due to the terrible nature of lupus/other autoimmune issues but to relieve some of your anxiety, I was diagnosed last year and I continue to work about 40-50 hours a week in a relatively high pressure job. Best thing is to find yourself a good doctor who manages your symptoms with the right medications for you.
Best of luck with your doctors appointments and welcome :-)

Peridot20_Gem
04-27-2011, 04:36 AM
Hi Kim,
Glad you found this site, there are sooooo many helpful people around, many whom have been through the same things you're going through right now. I suffer from pleurisy so understand your pain with the chest..I also had a pulmonary embolism last year too. I know there are a lot of people around the site who are unfortunately unable to work due to the terrible nature of lupus/other autoimmune issues but to relieve some of your anxiety, I was diagnosed last year and I continue to work about 40-50 hours a week in a relatively high pressure job. Best thing is to find yourself a good doctor who manages your symptoms with the right medications for you.
Best of luck with your doctors appointments and welcome :-)Hi Nat,
I've had pleurisy twice and it left my left lung with a black patch and definitely watch out for pneumonia as i've had that 3 times and the 3rd time was with the pleurisy, it was touch and go when that happened for over a week, i bet your in some right pain.

Oh mate i do feel sorry for ya where that's concerned.

~Hugs Terri~ xxx

Peridot20_Gem
04-27-2011, 04:41 AM
Wow. Thanks for all the feedback :) ?I'm still trying to figure out how to post in the right spot so bare with me all...
Surprisingly, The Dr called this morning with a cancelation so I got to see her today!! ( Unbeliavable !!)
She took her time and read through all my files and asked tons of questions. Luckly I was prepared and had my list of questions and symptoms already listed. I think I shocked her. Any ways She is ordering a TON of blood work and so far is diagnoisning me with Fybromyalgia. We will see if the blood work comes back for Lupus..
Wierd, I am kinda relieved, to have an answer I guess. I think I'm in shock still. My Husband , well, He has tried to be patient through all of this. He basically asked if I would be taking more pills... He started to asl what all it was so I looked it up online and gave it to him to read.. Matbe tomorrow we will discuss it, but for now, I am avoiding everyone...I just want to sit and think it through... I guess one more week waiting for lab work isn't so bad.
I was actually lookining forward to posting tonight, ( I have no life right now :) this computer is my lifeline for the time being...
Thank you all for taking time to read ,,
xoxo <3KimHello Kim,

I always post a new thread where you've put your's as the member's still answer you.
Good on ya for having your list prepared i did'nt because of years of ailments my mental state was ready for questions. Well i am pleased you got one answer and that's good just waiting a week for your other's, here they make you wait till you see the rheumo again.

Mate just sit back and relax because it can take some time getting used to and when your ready we're here for you and vent away.

Love Terri xxx