Quantcast

Life With Lupus

Recently Diagnosed, It took 5yrs


#1

I was recently diagnosed w Lupus and w Angioedema, chronic urticaria. It took 5 years and many doctors to finally get a diagnosis on lupus. I have mixed feelings and are doubtful of the diagnosis. Many of the doctors prior to my current doctor made me feel like I was crazy. One week after I got diagnosed I ended with Pericarditis. That was 3 weeks ago, I’m still recuperating. It is frustrating living in pain and feeling useless. I live w fear thinking that one day i will loose my job and I won’t be able to help my significant other with the house. It makes me feel so sad to think that it can only get worse. I feel lost and I don’t know what to do.


#2

Managing is going to be tough . Talk to your doctor about treatment options. Fatigue is the toughest part for my self . Watch your heart for sure and sometimes you will have to take it easy . Don’t ever feel useless because of your illness . Try to stay positive as much as possible and don’t be discouraged.


#3

Thank you for your words of encouragement. It means a lot. I’m having a good day today and I was feeling very miserable when I posted. In fact I have been feeling miserable the last couple of weeks. It seems the pericarditis is gone. I had some heart tests done as well as blood work and everything seems normal. My pain is going away and I’m doing ok. I’m trying to eat healthier to see if that helps with flareups.


#4

It does help I limit my protein intake and sodium . I watch caffeine because for me it seems to get worse . Rest when the fatigue is unbearable. For me even ten minutes of rest helps . Watch your stress levels too .


#5

Hello,
Being diagnosed with lupus was a “finally something”! Days will be up and down for sure. You’ll have to learn not to push through because you’re body and mind will need rest at times and you need to listen. One day at a time. I definitely think food helps with my lupus. I cut out gluten plus most refined sugars. Plus I take a probiotic and vitamin supplements. I found meditation very useful as well.
You’re not alone.


#6

I recently realized that my unknown chest pain is bein caused by the Hydrochloroquine that I am taking. It makes me bloated and I can’t seem to release any of the gas so i feel like I’m going to explode. I ended at the ER on Tuesday and doctors could not understand why I was having chest pain. ugh, the medicine makes me so sick that I feel i like i’ll be better without it. My joint pain was more bearable than my chest/stomach pain. I recently cut out all dairy and no garlic, trying to stay away from processed foods and less red meat. Sigh it helps that the kids and my bf like vegetables and fish :blush:. I really try to stay positive but damn some days are so hard.


#7

Hey blue

Being diagnosed with a chronic condition or disease is brutal, isn’t it? I’m Seenie and I work as a volunteer resource person for all of our Ben’s Friends communities. The frustration of years of wrong or no diagnosis, and the lingering feeling that doctors make you feel like you are crazy is something that’s very common across all of our communities.

I don’t have lupus, but I went undiagnosed for about fifteen years. I told them something was wrong. They made me feel like I was nutz. When at last I was diagnosed with severe Psoriatic Arthritis, I burst into inconsolable tears, not because I already had a lot of joint damage that should have been prevented, not because of the opportunities I’d missed because I had too much pain and fatigue, not because I had to retire before I wanted to, no, none of that. I sobbed because I wasn’t crazy after all.

Knowing that you’re not alone with all of this really does help, doesn’t it? Share the support!

All the best to you

Seenie from Moderator Support

PS if you’re on hydrochloroquine, you’re having your eyes monitored, right?


#8

Thank you Seenie; I was a little scared when I joined, but I am glad I did.

It’s only been 1 month since I got diagnosed. About 1 month since I’ve been taking the Hydrochloroquine. Doctor mentioned that it can cause eye damage if used for a long period of time. For the past 2 days I stopped taking it. I don’t like the pain it causes me. I sent an email to my doctor and are waiting on a response. I would like alternatives other than meds…=|


#9

There’s a section of this site called Complementary Therapies. It’s not about treatment, as such, but more about ways of coping. Check it out!

Don’t be scared, Blue, we work really hard keeping trolls and spammers out of here, and being reasonably certain that your fellow members really are people whose lives have been touched by Lupus. And we do it all with volunteer power. That’s what makes Ben’s Friends so special.

All the best to you

Seenie


#10

Thank you! I’ll check it out. Luckily my BF is being very supportive and strict about my diet :slight_smile:️. It makes us be healthy together as a family and it makes happy. I’m currently in the hospital. My pericarditis worsened, but i’m feeling much better. I was finally able to get a good night sleep. It’s been wonderful. I’m trying to see the silver lining in things (something my bf also taught me, I was sooo negative before) and I call it my mini vacation :slight_smile:️ My family and friends are showing lots of love and support that i didn’t know was possible and so I was a little surprised. I’m sad at times that i’m ill, but I’m trying to stay strong and positive for my loved ones.


#11

Hello,
Feeling fearful is stress and stress aggravates Lupus. Continue to work…are you exhausted, somewhat disoriented, not finishing tasks as you used to be able to do. I don’t know where you work or what your profession is. However, you seem to have many health issues and that in and of itself indicates Lupus. You may have to apply for Social Security disability and leave your position. There are lawyers who handle making that claim. As for housework it will have to be done in small short spurts. Not as you used to do it. My husband has really stepped up and helps so much. You may need to talk to your husband about how you actually feel about all of it.