#systemic lupus erythematosus

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Hey everyone! I have a question for you all.

For starters, I’ve been having issues with my heart rate for over a year now. In the past, I’ve had problems with pericardial effusion and pleurisy a few times. My heart has almost failed twice within the past two years. I can’t remember exactly when, but I’ll say around…April of 2021? Is when my heart rate issues became worse. My resting heart rate is 76 - 88; usually, this is when I’m lying down or sitting for more than 20 minutes. When I sit up completely, my heart rate will go to 110 - 125 or 136. When I stand, it goes to the 140s or 160s. After showering, my heart rate hits 180 - 191. So far, the highest heart rate I’ve had is 198. My symptoms for the past few months has been stomach pain, brain fog, nausea, vomiting, headaches/migraines, dizziness, lightheadedness, random blurry vision that’ll last for up to 10 - 20 minutes, chest pain, shortness of breath, skin sensitivity, painful red patches on arms, leg swelling, painful/uncomfortable bloating, weakness, fatigue, a few fainting spells, and much more but I can’t remember them all at the moment. My current diagnoses are Lupus (SLE), Rheumatoid Arthritis, TMJ, and Raynaud’s syndrome.


Is anyone going through this or has gone through this? If so, what tests were run or recommended? Did you get a diagnosis?


I really need to know. I’ve been dealing with this for so long now. It’s interfering with my day-to-day life and daily activities. I can’t even talk or laugh without my heart rate going up to 126. The lightheadedness and dizzy spells are happening daily, and I’m afraid that I’ll pass out. The stomach issues I’ve been having have made it difficult and painful to eat and drink. It feels like my stomach is on fire 24/7 and being ripped open every once in a while. My doctors think I could have another possible autoimmune disease, either fibromyalgia or a connective tissue disorder (I dislocate almost daily). I’m not trying to self-diagnose myself, but I’ve been wondering if POTS could be another possible diagnosis? From what I’ve been able to research, the symptoms I’ve been experiencing are pretty similar, but I know Lupus can be the cause behind a lot as well. I also know that Lupus can be the cause of POTS. I just want to find out as much as I can to bring some things up to my doctors since they’re just as confused as I am, haha. I’m tired of dealing with this and need relief.

Sorry for being MIA! I’ve been battling with my health for a while. I may finally have a new diagnosis for what’s been going on!

Man, the lupus mouth ulcers are really acting up this week and I don’t know why. Painful and annoying.

yumamoo:

Diagnosis advice??

Alright y’all, I need some help. My rheum is saying that there is no chance I have lupus and that I have fibro but I don’t agree at all. My symptoms just aren’t explained by fibro or really many other conditions:

- Butterfly rash

- Brain fog

- Joint pain

- Mouth sores

- Photosensitivity

- Anemia

- Chest pain/inflammation

- Protein in urine (proteinuria)

- High ANA titer (1:1280)

- Homogenous, speckled ANA

I was told “20-30% of the general population has a high ANA like that.” I waited months for my appointment and was told to come back in 6 MONTHS for a follow up since “nothing was wrong.” She promised to send off referrals for an endocrinologist and PT and we waited another few months before finding out she never sent off either and the physical therapist she referred me to doesn’t even exist. I’m so frustrated. What do y’all think? Should I seek a second opinion? Do I even bother fighting for a lupus diagnosis? I’m just so tired of all this. First it was “just my depression,” then it was “me making it up,” and then “me not drinking enough water.”

boosting this because I really need some help

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