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newbie please help am really worried

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Posted 6/25/2008 11:48 AM (GMT 0)
hi i have just been told i have lupus and i am terrified it started when i had my twins through ivf i get severe muscle pains chest pains dizziness shakes tired all the time mouth ulcers i am worried as the research i have found is not good will i die from this and why do i have chest pain with lupus please help thank you xxx
Posted 6/25/2008 5:30 PM (GMT 0)
First off, I am sorry to hear about your diagnosis... but with Lupus, treatment is all about prevention. Your Rheumatologist should be able to determine which organs (if any) are affected and be able to get you on a medication plan to avoid any kind of damage. Once the medications are figured out, many live pretty normal lives.

Make a list of questions and concerns for your doctor and keep asking questions every time you go as symptoms change from month to month. There is also a lot of info on this site and it's always nice to be able to talk about your symptoms with others that understand what you are going thru.

Good luck.
Posted 6/25/2008 5:55 PM (GMT 0)
thanks for reply can i asl one more question if i have chest pain which is quiet intense at times does this mean it has affected my heart or is this just a normal symptom
Posted 6/25/2008 6:16 PM (GMT 0)
Hi Emma,

 

Chest pain with lupus can be a few things.  First that comes to mind is Pleurisy, or inflammation of the lining of the lungs.  The pain can be brutal.  Treatment for pleurisy is high doses of prednisone (cortisone).  The other is something called Costochondritis - involves pain in the rib cage which does wrap around to the front of your chest. This is not damaging to the body in any way.  Just massively annoying!  I've had both of these symptoms on occassion.... 

 

I'd call your rheumy and tell them what you're experiencing.  If it's pleurisy, it needs treatment.  Does the pain get worse when you lay on your back, or when you take deep breaths? 

 

Either way, tell your doctor and get it checked out. It's probably not heart related, but better to be safe. 

 

When you're researching information about lupus, make sure it's current and from a reputable place.  There are a lot of crap sites out there that will only scare you, not give you the right information.  Your rheumy has a responsibility to make sure you know as much as possible about lupus too. Get them to sit down with you and go over everything, in terms you understand.  This can be a scary disease to have, but if you're knowledgeable and have a good understanding of what to expect and how to treat symptoms, you can live a happier life.  lupus is not a death sentence.  MOst people live long, normal life spans, but have a few hiccups along the way!!

 

Blessings,

Ginny

Posted 6/25/2008 6:27 PM (GMT 0)
aww thankyou for that reply yes it does it hurt when led down more they come in waves some days and can get chest pain all day on and off others days nothing it is like a pressure pain right in the center started about 16 months ago i am really worried the doctors have left it too late to help me sorry if i sound doomy but have had a rough time with this and i hope this place helps me to talk about it
Posted 6/25/2008 9:35 PM (GMT 0)
HI Emma,

 

Yes, you're in the right place to talk about how you're feeling and how you're coping.  We've all been through that initial phase of being diagnosed and feeling totally overwhelmed, scared, confused and anxious.  I have found that over these past 8 years, learning about lupus, all the symptoms,etc, have helped me to cope easier.  Over time, you'll gain knowledge to help you as well.  This is one place you can start to do that! 

 

Your chest pain sounds like it might be pleurisy.  Especially if it's worse when you lay down.  You need to call your rheumy right away. Get that inflammation taken care of before it gets out of hand.  What medications are you taking?  The key to staying well with lupus is to be proactive about treatment.  It's never too late to help yourself.  So make that call to your doctor! 

 

 

Posted 6/25/2008 11:59 PM (GMT 0)
Hi Emma, Ginny gave you some great advice. Are you seeing a rheumatologist?? if not, make sure to ask for a referral and get yourself to one. There may be a couple or more months wait to see one if you are a new patient. There is a link in my signature "Lupus Resources". In that topic, there is a post with suggestions for new members. I hope you'll take a few minutes and check it out. Ginny is absolutely right!! Don't read OLD info about Lupus. I think most of us have experience that same fright. You'll gain more confidence about your future as you learn more about lupus and current treatments. ((((((( Emma ))))))))) I hope your doc gets you feeling better so you can enjoy your little babies. Blessings!
Posted 6/26/2008 4:20 AM (GMT 0)
Hello Emma! Welcome. So sorry to hear you must deal with so much at such a young age. Hopefully you have already found a good rhuemy to help you through the tougher issues. Ginny and Rosie and Ti have shared great advice to get you started. Also, the HW site here is excellent. The many members are sooo helpful and sooo wonderful. Many people with lupus live almost normal lives and have normal life spans. Try not to worry too much about that. Like the others have already shared, it is good to learn as much as possible about lupus to help alleviate your fears. I will keep you in my prayers!
Posted 6/26/2008 3:28 PM (GMT 0)
(((((Emma)))))). Hi emma and welcome. I'm so sorry about your diagnosis and everything you are going through. It can all be so scary and overwhelming. You found a great place here for information and support. Please do ask any questions you have - I remember having a ton of questions when I first got sick and everyone here helped me so much. We are also here for you through all the ups and downs of this disease. It's nice to have someplace to come where people can really relate to what you are going through. Take care and I'm glad you joined us.
Posted 6/27/2008 1:15 AM (GMT 0)
Emma,

   Welcome to the forum. I'm sorry you are dealing with this disease. The others had great advice for you. It can be overwhelming when you find out you have a chronic disease but the more you read, research, and ask questions the better.

   I hope you are seeing a good doctor that will get you on the right treatment plan so you will start to feel a bit better.

   I have had lupus for 31 years now and do quite well most of the time. I have had mild to severe problems but, I always get better in time. I look at it as crossing bridges. Some bridges are short and others are long. There have been some bridges that seem like they will never end and I may have to crawl, but I always make it to the other side and look back and say, "I made it". Just take it one day at a time and cross one bridge at a time.

   Please take care and ask all the questions you want. We will help you in anyway we can. Know that you are not alone. This group of people are awesome, caring and very knowledgeable. You will be in my thoughts and prayers.

                                                       Babs

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