Has anyone had severe electrolyte imbalance (fatigue, heart palpitations, burning in their calves) from Sjogrens Syndrome?
Yes I have had these symptoms often - but in my case it is due to small fibre polyneuropathy, autonomic dysfunction or else certain medications or being under or over medicated for my Hashimoto’s. My electrolytes have generally been normal when tested.
Is there a special diet you follow to try to prevent the symptoms? Do you see any specialist endocrinologist or nephrologist more frequently or have regular bloodwork ordered and completed?
I’ve neber seen a nephrologist and only saw an endo a few times. I see a rheumatologist every 4 months and had my bloods tested monthly for 7 years while on DMARDs but not on any of these meds just now so not getting blood tested as often. I just have high inflammation markers and am lip biopsy and ANA positive.
PS that should say “never”!
PPS and I’m under neurology and ophthalmology too.
hi JJ I get this with Behcet's. But think it's always worth doing the run of standard blood tests because sometimes things can be overlooked and put down to autoimmune disease and there may just be something out of kilter. I have suffered low potassium several times in the past and it has these kind of symptoms. Always worth checking just in case. Best of luck with it.
Thank you I will discuss it with my provider. I drink vitamin water and a protein shake for potassium. Do you take potassium supplements?
No I don’t believe in supplements - apart from AdCal D3 which I take on prescription. I’m a pretty all round healthy eater though - plenty of fruit and leafy veg.
No I don't it was never quite low enough. The presription was always a banana a day until it became right again. But if really low a supplement is necessary. I have to add that I always found really hot weather affected my potassium levels. Also I take diuretics which can affect potassium. I have been presribed calcium sparing med for blood pressure to compensate for what the diuretic can take away.
Yes me too but certain meds and extremely hot conditions can affect potassium. I have had high blood pressure since having Behcet's which complicates the issue.
Yes all symptoms but the palpitations were due to medication...be blessed jj. Have a lovely day..😍😍😍
Hi, i have pss and have recently developed an arrhythmia. Everyone brushes it off as if its normal but it has caused quite a bit if a disturbance in my life. now I have developed chronic contractions in my chest and abdomen, facial tingling/numbness, buzzing like sensation in legs. I’m told its not caused by my heart but could be ANS involvement. going to see a neurologist but I have a feeling he’s not going to be much help. My question is, how do you know you have a severe electrolyte imbalance and is this what caused your palpitations? Are these PVC’s? how frequent are they? what treatment did your doctor suggest? has anything helped you yet?
I understand how you feel and am so sorry. I have been going 3 years plus with symptoms. My heart doctor prescribed 50mg flecainide. Estrogen levels can play a part with PVCs and is a reason I don’t take the flecainide daily. I had a break from PVCs for five months. My doctor said that is common and also told me to add salt. I have low to normal blood pressure. I actually added more potassium bodyarmour has plain or fruit flavored electrolyte water.
Yes, I do. I also have constant and unquenchable thirst all day long and have to go with something to drink in my hand. So, I basically drink fluids and run to the restroom all day. Sometimes, my heart will race and I have constant fatigue, weakness and burning pain in my lower back, legs and feet. It is so bad, at times, I can hardly stand. I also feel faint and shaky at times. I crave salt all the time practically. Other times, I will wake up craving vinegar???. It finally dawned on me that my body must need potassium when that happens. I have researched for 3 years now and I feel like it must either have something to do with the Sjrogren’s’ (based on the timing of when this started) or possibly the Vagus Nerve(?). There is no doubt in my mind though, that dropping estrogen levels with menopause, most likely also plays a role in the onset of these symptoms, for at least some of us. Have you tried Magnesium and Alpha Lipoic Acid for the burning in your legs? I find they both help some. Have you found anything that helps with your symptoms and do you mind my asking when your symptoms first showed up?
I have not tried Magnesium and Alpha Lipoic Acid. I did try calcium – thinking my calcium and magnesium was depleted. My symptoms first occurred the end of January 2015. I can’t remember if I had a dentist appointment the day before or if it was a week before. One Sunday evening it felt like I had a cotton ball in my mouth. Monday morning I woke up the same. By 11:00 my heart started racing. I went to the ER room. They ran blood work and an EKG. Everything came back within normal limits. I seen several specialists who conducted tests. The only blood work that came back not normal was Vitamin D. My thyroid was removed. Ever since then I have experience PVCs with my heart. Sometimes they last 5 or more hours. I still have the dry mouth and dry eyes. In addition, I am fatigued and have weakness in my extremities.