I may have Lupus... Dr. is still investigating.... Need to talk with others who understand

Hello. I am a 41 yr old female. I have had IBS since I was 16. In 2005 I fell down a flight of concrete stairs and injured my hip and broke my tailbone. Shortly after that I started having problems and in 2006 Dr said I had Fibromyalgia. I had some relief with NSAIDS.

As my weight increased the symptoms increased. I was at the point that I could barely walk and was discussing getting handicap plates with Doctor. Because of that and other health issues I went down the path towards weight loss surgery and in Mar 2011 had RNY Gastric Bypass. I lost weight even quicker than usual and doctors were actually concerned. My blood pressure dropped so low I was passing out and always dizzy. The more weight I lost the more joint and muscle pain I had. When I reached my goal weight of 125 the pain was unbearable. Things did improve some once I gained a little back and leveled out.

Because of the surgery I can no longer take NSAIDS. There is nothing really at this point I have found to help the pain. It's constant. Over the years since I have seen multiple doctors and gotten nowhere. My husband was active duty and because of moves and the way the military clinics work I never developed a relationship long term with a doctor.

I have since been diagnosed with Low Iron Anemia and have had IV Iron infusions twice. I have also been diagnosed with TMJ. I have constant all over pain with it being the worst in my neck and head. I am tired all the time and a full day of activity like going to the mall with family can knock me down for days. I am losing hair and have bald spots. I have nose and mouth sores all the time. I am really sensitive to smells, lights and noise. If I get too hot, I am down and out for the day. Stress also knocks me down. I have cognitive fog. Sometimes I can't even form a proper sentence. I have forgot how to get to somewhere that I go to on a regular basis and have had to pull over and call for help. I have vision problems, dizziness and sometimes it seems my body forgets how to swallow and I choke when drinking. I also get really stiff and have problems walking and standing upright after sitting for long periods of time. My hands and feet often got to sleep or tingle.

I don't know if it's part of Lupus, but some other changes have included becoming withdrawn and not wanting to leave the house. I don't enjoy hanging out with friends or going places. I used to be an avid reader, but for the last few years I have been unable to read books. It seems like I can't remember what I read just a few pages back and it gets frustrating trying to follow the story. Same goes with movies and tv shows. I have lost all interest in them.

I also have adult ADHD, anxiety, depression and OCD. I am seeing a doctor for those issues.

Yesterday I went to yet another doctor and this one seems like he is actually concerned and wants to figure stuff out. My appt was only a short 15 min. one. He told me he wants to run a battery of labs, review my medical history and labs and then schedule me a 45 min consult so we can go over things and put in referals for specialists. He also said he needs to read up on autoimmune disorders more cause as he put it "I am not his normal type of patient'. He mentioned some different disorders he suspected and Lupus was one of them.

Sorry for such a long intro. It just feels so good to have somewhere to talk without my family and friends seeing what I post. For the most part I have kept all this from them. My husband, closest friends and family know, but I don't want the others to. While I know Fribormyalgia, Lupus and other disorders are very much real, and life changing, I have family that thinks it's a made up condition like ADHD. The same family that told me I was taking the easy way out have weight loss surgery.

Thank you.

Hello there 'Outlook'. A number of the symtoms you mention are, as your doc indicated, common to other a/i conditions and also to fibromyalgia. I suggest that you take a look around our fibro community (you are welcome to join but it's not necessary to access their information resources) as I think there is information there on managing 'fibro type' symptoms which you will finds really helpful. HERE is the link. JulesG from ModSupport.

Hi! I’m new to this group also. I am also 41 and have had fibromyalgia, diabetes, and lupus for a while. I was diagnosed in 2010, but suspect I had fibromyalgia since my teens and SLE since my early 20’s. I have had pain and other symptoms, but, being the “pull yourself up by the boot straps and carry on” type of person I was and my entire family is, I chose to ignore my symptoms, hate myself for my “imagined” weaknesses, and punish myself with more and more work. Until I nearly killed myself with working sick. I understand what it’s like to have no one to talk to. We can talk here, though. I’ll pray for you.:slight_smile: