My Lupus

By angiebobe

1 min read

My symptoms started when I was 21yrs old. I had just gotten married and was working one of my dream jobs. I was first diagnosed with rheumatoid arthritis. Then I was tested for Lupus. For years I was told I would never be off my meds. For about 5 yrs I was taking over 10 meds a day. I went to a rheumatology center and walked out taking only 5 meds. Today my Lupus is not active but I deal with fibromyalgia and chronic pain.

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Ava Meena Moderator & Contributor
Hi <inline-mention user-id="2036646" username="angiebobe"/> , thank you for sharing your story with us! It's so hard to start experiencing symptoms when you're going through such positive life events like getting married and working at a job you enjoy. I am still at the point where I'm taking a lot of meds, around 15-20 pills a day. Did you go to a large rheumatology center? I would love to cut down on my meds and lupus symptoms, like you have, though I also deal with chronic pain that's not necessarily related to lupus. I'm so glad to hear about your successes and I wish you the best with your fibro and pain issues. -Ava, <a href='http://lupus.net' target='_blank'>lupus.net</a> team
susyq Member
Hi, I was diagnose with lupus after constantly being treated for laryngitis and with a 6 month treatment of antibiotics. I got tired of it and asked my pcp to refer me to a ENT and he was the one that suspected I had lupus. He only did the lab worked then referred me to a rheumatologist and came to find out I also have RA, Fibromyalgia, Raynauds, Sjogrens to name a few. Cant take the meds because of me having low blood pressure. So i am in a constant battle of dealing with flare ups and the chronic pain.
1. Ava Meena Moderator & Contributor
 <inline-mention user-id="2036543" username="susyq"/> that is a lot to adjust to in a short period of time. I'm glad you were able to get some answers. Is it possible to treat the low blood pressure in order to take other medications that would manage your symptoms? I have high blood pressure and it's contraindicated with several of my meds, but once I got it under control with beta blockers I was able to continue taking my lupus meds. Really hoping you can find a solution so that you don't have so many flare ups and so much pain. Warmly, Ava, <a href='http://lupus.net' target='_blank'>lupus.net</a> team
BrandiD49 Member
I have been going through the five stages of grief since I started getting sick. I had to quit working my dream job I loved and was good at and was barely able to lift my head some days. We lost everything and and I lost my family and my friends since it took so long to diagnose me and everyone had decided what was wrong with me and turned away from and I was almost completely alone I had my kids and husband and that was it. I was once a person surrounded by many friends all the time and we all did so much and we had family dinners on Sunday or went to the lake for the day and I would go weeks with a single text and the only phone calls I got were from the doctors usually to remind me of an appointment. I finally ended up in the ER after a day of chest pains that I was blaming my kids for they were over the top and it kept getting worse til I was struggling to breathe and had to wait for hours for my husband to get home and take me and since I was mouth breathing for so long I made him stop for a pop anyway I was taken right back and hooked up to heart monitors right away and things were moving around me. Well I am now living in his mom's house with my son it is a two bedroom and I have no closet in my room. We have lost everything and my family and friends have never came back they don't believe I have Lupus or anything wrong in fact my own mother came to the hospital to yell at me to get out of the ICU bed I didn't need it I was probably high and faking it for drugs. It has been rough being alone and having no one but the people from the Facebook Lupus groups they are my family and I have my dog. 
1. LisaJ Member
 <inline-mention username="BrandiD46" user-id="2038318"/> I feel the same exact way. Officially diagnosed this past December; but I have been like this for many years. Constant flare ups now it is really hard to breath new symptom I guess. Have my Dog rabbit and my daughter's cat. No family my daughter moved away. I did not know about these 5 stages of lupus grief think. I am through it. Trying to tell myself don't worry you had it all along they are just giving it a name now. My faith gets me through. Prednisone raised my eyepressure too high and made me crazy hyper and hydroclorquine messed up my vision so I am afraid to try anything else. From what I understand the meds just treat the symptoms there is no cure. Not sure what to do. 
2. LizGreen Community Admin
 <inline-mention username="LisaJ" user-id="4139068"/> let us know if there is any information we can provide as you go through the process of finding a treatment that helps your symptoms. December is so recent, and it can't be easy to cope with a new diagnosis among with everything else. We're here to listen and help give you as much information as is helpful. - Liz (lupus.net Team Member)
BrandiD49 Member
I have had him almost five years now and before him I had a golden retriever and a saint bernard. I also have a rabbit and parakeet. Iovey animals more than life,n<img src="/content/images/2021/05/11/3f383c01a0b39387fd36189098c09959_medium.jpg" alt="Thunder puppy" class="uploaded-image"/> 
1. LizGreen Community Admin
 <inline-mention username="BrandiD46" user-id="2038318"/> ❤️❤️❤️❤️ soooo cute. - Liz (lupus.net Team Member)

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