I am a 27 year old female who was otherwise healthy up until December of this past year.
I was running 4 miles a day, staying very active, etc.. I got an infection- my white count was high, I had to go antibiotics, I started then having panic attacks and strange moods. My doctor almost thought i was bipolar.
Within weeks, I started running daily fevers, feeling achy, fatigued, and staying in a weird "head fog" feeling.
I just got diagnosed two weeks ago with Lupus after my ANA came back elevated the 2nd time and I found a doctor to really listen to all my symptoms.
ANyway, one symptoms that is the most bothersome to me right now (other than the aches and pains!), is that I get this daily "full" feeling in my throat and find it hard to swallow. It almost feels like someone is choking my neck.
Can someone tell me if they have experienced this and what they have done to help it? It is making me crazy!!!
Hi, Spriggy. I think have experienced a similar thing with my throat. I was diagnosed with lupus a little over a year ago, but I had this symptom at least four years before that (one of several symptoms that I believe were signs that I was headed toward full-blown lupus). Mine felt like I had a constant, large lump in my throat, like the throat was "full" or blocked with some obstruction on the inside. My doctor at the time told me the inner lining of my throat was inflammed and swollen, which made it feel like I had something stuck in my throat constantly. I was prescribed a steroid spray, which after a couple of refills, made the swelling go away and it hasn't returned since. But I would say if you were only diagnosed two weeks ago, you may be getting medications for lupus soon that might help with your throat. Hope you don't need it, but taking oral prednisone would likely make your throat better if it is indeed inflammed.
I also get the hard-to-swallow feeling. I'm not sure whether it's a Sjogren's-like thing? Or some sort of autonomic nervous system thing? No idea...!
Anyway, generally the goal of lupus treatment is to modify or to out-and-out suppress an overactive but aberrant immune system. The literature on treatment generally groups meds into three tiers, from mildest to strongest: (1) anti-malarials, (2) steroids, and (3) immune supressants.
The second two are only used where major organ involvement exists. I'm on a first-tier med, Plaquenil (hydroxychloroquine is the generic form).
I had my first "probable" bout as a teenager: joint pain, severe burning along the long bones of arms & legs, prolonged low-grade fever, elevated ESR, etc. Anyway, way back then I was given something to bring down fever and narcotic pain relief. Frankly, I wish that then---and many times over subsequent years---drs. had gotten me matched with a correct Dx and put me on something known to undercut the underlying immune dysfunction.
Is your dr. a rheumatologist? Has your dr. discussed putting you on any of the standard lupus meds? Has your dr. identified any particular autoantibody your immune system is creating? For sure, if you have a meaningful level of one of the ones capable of doing meaningful damage, I'd think you want to be on a "systemic" med that stomps on that process. I'm certainly no dr., but generally speaking anyone with something going on that goes beyond skin rashes is usually considered eligible for lupus medication.
I always lost weight during my flares also, once down to 100, and I'm tall. But my drs. still were clueless, until I finally was lucky enough to sprout rashes that eventually led to the Dx. I think weight loss is pretty common.
I hope you continue to post and kick things around. The group here has quite a collection of experience. We'd probably never meet people with as much variety, were it not for this Board, so it's a very valuable meeting place.
I have experienced the lump in the throat thing off and on for many years too. I have been told that it is my thyroid swelling inside my throat sometimes instead of showing an outward goiter. I have Hashimoto's Thyroiditis and it takes the form of hypoT. However the oposite of hypoT is hperT and this is called Graves disease when it is an autoimmune disease. It can cause the thyroid to swell inside the neck giving you the same feeling and it will definitely cause you to lose weight even though you are eating nornally. It effectively speeds up your metabolism. It can cause your hair to fall out, just like Lupus. It can also cause your joints to be swollen and or achey, just like Lupus. It can also cause digestion and intestional problems, just like Lupus. All these autoimmune diseases seem to have many symptoms in common.
I have had 3 Dr.s tell me that many people have more than one autoimmune thing going on at once and are just unaware of it because when one problem is diagnosed everyone stops looking for other things. Perhaps you have already had your thyroid function checked. If not, perhaps you may want to talk to your Dr. about it, if for no other reason than to rule it out. I speak from my own experience here. For some time everything was blamed on my thyroid condition when in fact part of my problems were from Scarring Discoid Lupus with asst. MCTD. So I don't think anyone can just assume it is the one thing that has been diagnosed without looking at other things that could be factors as well.
Good luck. I hope you find the answers you need soon.
I have also been told that people with autoimmune problems usually have more than one. Listen to Patience and get your thyroid checked out, it couldn't hurt. I have a very good friend who encouraged me to see an endocrinologist when I kept having problems (not with swallowing though) and I am very glad I did turns out I was hypoT. If she hadn't helped I would still be struggling.
I too had the same thing going on as you with the throat feeling.
I would suggest that you suggest to your DR a "FULL" thyroid workup including a Thyroid peroxidase auto-antibodies blood test along with the TSH,T3,T4,.............. That is what I did even tho my Dr thought my throid was ok it was NOT and the Thyroid Auto Antibody showed so !!!!! I had Hashimotos.......and am now on thyroid med.........and seeing a thryoid spe cialist.
I do agree that a lot of us with Lupus etc can have multiple problems.
I NOW have a swallowing problem further down esophagus NOT related to thyroid !!!!! Ugggghhhhhhhh