I guess I'm mostly here to vent this time around. It's only been three months since my diagnosis and, overall, I don't think a lot has changed except my mental state. I've been fighting anxiety for years and it seems like it's just gotten worse with this diagnosis. I've been to the ER twice now (once for chest pain, once for a heart rate over 120 bpm) and it feels like nothing the doctors tell me helps me deal with the anxiety I have surrounding having lupus.
I feel like I've lost something. I constantly worry that every ache or pain is going to mean the end of my life. I've been having chest pains off and on for over a month now and even though the ER doctors said I'm fine, I constantly worry that it's my heart and that it's a sign I'm going to die.
On top of that, I missed a few days of work because I went to the ER and now I'm worried about missing more. I feel like no one there understands why I'm trying to deal with or why I needed to go to the hospital. Tomorrow is going to be a very busy day (I work in a bank and pension cheques come in early in December) and there's no one else trained to do the job I do, so I need to be there. But there's a part of me that wants to go back to the hospital because my chest still hurts, even though I'm sure they won't tell me anything different from the last time.
I've been talking with a counsellor, but it doesn't seem to be helping much. She's given me all sorts of tools to deal with the anxiety, but when it comes down to actually having a panic attack, I can't seem to make them work. I try the breathing exercises and I try distraction and in the end, I have to take an ativan. Which is another thing I don't want to be doing, so I worry I'm taking too many.
It's just a lot right now. How do you deal with the anxiety? How do you know when you're just working yourself up or when you actually need to go to the hospital? I feel so completely lost.
I ended up on Ativan after a trip to ER a couple of weeks ago. I worked myself up into such a tizzy because of a lump in my throat. I was petrified that I would die during the night. I couldn't sit, stand or lay down I was in such a state. My husband took me to ER and they treated me with Ativan. Did nothing about the lump in the throat. My PCP is treating it as GERD but it's still there so I am going to ENT in January. I find the Ativan is keeping me from working up to that state of wanting to jump out of my skin.
sorry you are having a hard time.
i am going to make a few comments about what i went through. it may/may not be the same for you.
please do not take offence, as it is really about me, but i hope will help you.
i became my worst enemy, when first diagnosed.
i could not find good information about lupus.
i was reading old information about old medications.
i became concerned about every little pain and ache, as i knew it would lead to a worsenning problem.
as i learned more about modern medicine.
i was 1/2 trained and a danger to myself.
having 1/2 the knowledge meant only knowing the bad.
i had yet to learn about the limitations i could endure.
i had yet to learn how the medicine would react with me.
i now know that i have a swelling of my muscles.
that means that my chest will hurt almost all of the time.
i know, my lupus attacks my blood.......
so anything that relies on blood flow is compramissed.
that means my lungs, my heart, my brain as well as my limbs.
this does not have to be a death sentance.
i have an explanation for my limbs going to sleep all the time.
i have an explanation for the fatigue.
i have an explanation for the heavy chest.
i have an explanation for the brain fog.
i have an explanation of why my heart rate can jump up so quickly.
i still look after myself....
i still seek medical attention as required.
but i am more relaxed about my body, and its problems.
being relaxed, makes me healthier, as i do not worry as much.
if you have a problem that does not go away, seek medical aid.
but we need to learn what this desease does to our body.
and what the drugs do to us as well.
it is not an easy learning curve.
we know just enough to know what is bad.
we still need to learn what we are capable of.
i know the pain is real.
i know the fear is real.
i also know that the medication takes time to react with your body.
the medication creates a chemical reaction within you.
this chemical reation makes you feel very different.
the brain interprets this feeling in different ways.
sometimes it interprets it as feeling unwell
sometimes as pain.
i have spoken to my rhuemy about this crossover time.
questioning why we feel so bad.
he can not explain it......
but he did confirm it is normal.
i believe it is the chemical reation from the drugs.
hopefully you can understand my rantings.
hopefully you can get some comfort from them.
For me, having a diagnosis, was a big relief. I did have some anxiety before I was dx, but it did get better, because now I had an explaination for all my weird symptoms. I had lots of pain, including chest pain, I was short of breath, I was dizzy, I had headaches ect. I still have all those symptoms and than some, but now I know, why I have these symptoms and what causes them. My anxiety is gone, I have my answers.
The more you let these symptoms drive you crazy, the more anxiety you will get. The stress will put you in a flare and make things worse.
I know, it is easier said than done, but try to relax and I think, things will get better for you.
Be in close contact with your rheumy, he will have answers for you.
I am wishing you all the best.
That's exactly how it was with me. But on top of that, I worry about taking the ativan too often, because I know it's addictive and I don't want to have to go through withdrawal. So I worry myself about worrying and then I worry about taking something to help me stop worrying. My brain is not a very easy thing to get along with right now. :)
Originally Posted by Manderson
Thanks for sharing your story. It makes me feel much less alone.
THANK YOU. I'm going to book mark this to come back to whenever I need to. What you described is exactly how I am right now. I'm learning all these things about lupus, but they're vague in how they apply to ME and MY lupus, so all I do is look at the bad and worry about these pains leading to something worse. It's only been a few months for me (not yet three) since my diagnosis, so I'm still learning.
Just reading your words gave me hope that I will be able to learn how to deal with this better in time. Thank you.
I guess I don't have my answers yet. That's probably the best way for me to look at it and you're right, I need to stay in close contact with my doctor and hopefully he can help to alleviate some of this anxiety by giving me the answers. I have a call placed to him now, though with it being Christmas, I might not hear back for a week or more. My next appointment to see him isn't until February.
Originally Posted by debbie-b
Thank you for your kind words.
I had quite a bit of anxiety after my SLE diagnosis, and to a lesser extent, after I received the overlapping MS diagnosis. For me, time, and an increasing familiarity with my symptoms made most of the anxiety go away. I guess I just got used to it all, and, I literally got tired of expending so much energy on worrying. Some part of my mind just finally said no more, that's enough.
This is going to sounds strange, but there can be many times each day when I affirm to myself that yes, these autoimmune disorders could kill me, but at the same time, I also affirm that I don't give a s**t. What I mean, is that I do care very much about my overall health. I do care about the "bigger picture". What I don't care about, is all the noisy sabre rattling that SLE and MS do in my body on a regular basis. Saying that I don't give a s**t, just for now, is how I prioritize and deal with their noise.
I see Lupus and MS as a couple of blow-hard bullies who like to make alot of noise (flare symptoms, pain), but on most days, are more bark than bite. They try to intimidate me with strange new pains all the time. They want to ruin my day by trying to convince me to go to the ER because of the new pain, then they step back and laugh at me and say "Oh, we were just kidding".
A typical example of autoimmune sabre rattling would be-
"Hey Rob, you know that sharp pain in your chest that you thought was a heart attack?
Well, it's really just Costochondritis. Painful? Yes! Dangerous? No. HA! We got you again!"
I pay attention to what my body is telling me, but I don't get overly upset right away when some new strange symptom or pain shows up. Often times, the pain does not last, and it soon goes away. What I do pay attention to, is the duration of the pain, and if it returns on a regular basis. If the pain is something new, and if it ends up being consistent rather than transient, I go to the doctor.
At first, I called my doctor for every little twitch and pain. I was really stressed out. However, with time, and from talking to others, I've learned to step back, observe, and stay calm when a new symptom appears. If it's one of those odd non-specific pains that like to come and go, and move around, I wait and see before deciding if I need to see my Dr./Rheumatologist. Of course, if something happens that is obviously life threatening and/or excrutiatiingly painful, it's off to the E.R. ASAP. Better safe than sorry.
I know there's no easy answer in my words, but I thought that maybe there is something here you could take away that might help on a long term basis.
Have hope Leah, things can, and will get better.
Well said Rob. Actually I could have quoted a lot of your message. I ended up at the ER withing months of my diagnosis for chest pain as well as recing heart beat and a perceived inability to catch my breath. I thought it was lupus related but now believe it was anxiety.
Originally Posted by rob
One thing that I have come to realize is that while my diagnosis of Lupus is new, its presence in my life is not. I have lived for years with lupus and its mind games and before I knew it was lupus, I just dealt with most of it. Once diagnosed I learned I didn't just have to deal with it. I also have to admit that for me, nothing in the last 10 years has been life-threatening and so I have to calm myself into believing that a life-threatening situation will be rare for me. I keep my eyes open for it but mostly try to stay calm and watch and wait. Like Rob, if the pain is transient (comes and goes) or moves around, then I may wait and see. If it is new , extremeberly painful or scary, better safe than sorry about the ER visits.
I now that this affects us all differently and for you the reassurance that it hasn't been life-threatening isn't there...but please understand that you will learn to understand the signs and symptoms your are feeling. Anxiety in my opinion is a normal reaction not only to the disease but to our diagnosis. As for no one understands, you are right, they don't. When we suffer from an invisible disease, we don't look sick and so it is hard to "justify" our absences, etc. In addition to your counsellor are there any lupus support groups in your area?Could your doctor hook you up with another lupus patient, perhaps someone who has had their diagnosis for a while but who would "get it"? How honest can you be with your co-workers or boss? I found sharing some general lupus info helped those around me to try to understand. It makes it easier (less guilt which causes me anxiety) to say no, or call in sick sometimes knowing that they understand I am doing this to avoid bigger issues.
Anyway, I am rambling and am not even sure if I am making sense but I wanted to offer support. Please take care of yourself.
Rob and Steve said it all VERY WELL! I would only be repeating what they said! Woo Hoo to Rob and Steve for saying it so WELL!!!!!