Anyone with diagnosed dysautonomia as well as scleroderma?

[Castella]

Dysautonomisa seems to be recognised in North America as common in scleroderma, but not in UK. My symptoms of dizziness and breathlessness with low blood pressure seem to fit, and have been called hyperadrenergic. Is this familiar to anyone ?

[OldTed60]

I don’t have dysautonomia, as in POTS, despite having sjogrens - which it’s much more closely associated with than scleroderma. But a significant proportion of those with scleroderma also have Sjogren’s so it probably is quite common for us. The names and medical attitudes in U.K. vary but generally it’s referred to as autonomic neuropathy or POTS by doctors here rather than Dysautonomia.

Your symptoms are a bit non specific - could be orthostatic intolerance which I have too. It is also quite common in older people to get dizzy and breathless with low BP - particularly with scleroderma on top. I don’t know what the treatments are but think it is related to dehydration and low sodium or potassium so these need watching for too. Also have you had pulmomary hypertension ruled out?

[Castella in reply to OldTed60]

Thanks, yes , I am certainly old and do have worsening orthostatic intolerance. Pulmonary hypertension has been ruled out.

[OldTed60 in reply to Castella]

I have regular Iloprost infusions and often notice the older infusion patients on the ward have plummeting BP and dizziness on standing so I keel my buzzer close in case they fall. Well that’s a good thing at least that you don’t have PH. Take care 😊