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I hate posting this here as most of you have diagnosis' and such. However, I do not know where else to go. I am 27 and for 3 months I have been have pretty bad joint nerve pain shooting down my extremities even being tender in the muscles too. It all started with chest pain which they ruled to be swollen myocardial tissue. I'm exhausted most days even if I do nothing. I do not have the typical butterfly rash but have a strange rash on my upper arms. I have other autoimmune diseases so this… read more
Symptom clusters are the sure sign of auto immune disease. You can have negative lab and still be positive for Lupus. I see three different rheumatologist, and even though my labs are negative, each one separately has the consensus that I do have lupus. Two of the rheumatologist at first called it RA but as my symptoms progressed they went to Lupus. Extreme fatigue, bodyaches, gastroparesis, sinus tachycardia, rashes on my trunk, I have now developed sun sensitivity and neuropathy, this is about year seven of following rheumatologist for a diagnosis.
For the last year I do get a butterfly rash when I’m in a flare. Flares often, but are fortunately only lasting a week to 10 days. I have had flares that lasted for months in the past. I probably had this 20 years ago when my primary care doctors were calling it fibromyalgia.
Speak to a specialist asap cause it can be many things. I spent about 3 weeks in pain then I spent 3 days in a hospital had to self withdraw go to another hospital before I was diagnosed with lupus if you think you have it don't wait go and get checked out
@A MyLupusTeam Member My dr pushed gabapentin on me too. I too am terrified of the side effects! Before I mask the symptoms, I would like to get to the cause!
@A MyLupusTeam Member I too have wanted to look into relapsing polychondritis. I've had odd cartilage symptoms for years. It was my ribs for a while, now my coccyx area. They are tender to the touch for weeks at a time, then mysteriously get better. Between that and neuropathy, I always have burning sensations. Besides positive ANA, I havent had any textbook Lupus symptoms.
🙏 THANK YOU! I will be sure to insist Lupus is the first thing I’m tested for. I also want them to look into Relapsing Polychondritis. I don’t understand why the patient needs to get so upset before anybody listens!
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