Autonomic Symptoms
Posted , 3 users are following.
Am I the only SS patient with low BP? I have battled my low BP and salt wasting with the aid of Florinef for over 20 years. Can't stand up without it. Then about 6 years ago I was diagnosed with "Hypoventilation". My oxygen runs low when I am quiet or NOT moving. So weird. Most people are the opposite. I have been on suplemental oxygen at night and at rest for years. No sleep apnea. My brain just goes to sleep and I don't breathe. All this is supposedly autoimmune and SS related. It has taken years to to put the pieces together. I have all the other SS problems as well. Would love some feedback!
0 likes, 4 replies
lily65668 Cowgirl918
Posted
My goodness - that's a new one on me! I haven't personally had this experience, but I'm sure someone on these boards will know something about it.
I've always had this thing where sometimes when I'm watching TV or reading late in the evening, when I'm tired, I suddenly find myself gasping for air and realise I've "forgotten" to breathe. However, that started when I was young - still a child I think - and I didn't start getting SS symptoms till I was 50, so I don't think it's related in my case.
Cowgirl918 lily65668
Posted
I do that "forgetting to breathe" thing when I am relaxed, or sleeping or if I have any medication that sedates me. So I hook up the oxygen each night. What are your SS symptoms?
lily65668 Cowgirl918
Posted
Oh, mine are all the usual - and nothing connected to the autonomic nervous system as far as I'm aware. They also come and go, so I'm very lucky in that I never have all of them at the same time. Dry mouth - rare these days; dry eyes - currently having a flare-up of that one; intermittent joint pains, though not actually RA since a single, severe flare-up in my mid-30s, 15 years before the other symptoms arrived; tendinitis in upper arms and shoulders, which has bugged me for the past 5 years; peripheral neuropathy; Raynaud's syndrome; a one-off attack of carpal tunnel syndrome about 15 years ago; underactive thyroid; asthma, which has only arrived in the past year or so. Difficult to know whether these are all down to SS of course, or whether it's just the March of Time.
The latest arrival is severe vertigo. I'm inclined to believe this isn't SS-related, as I was diagnosed with benign paroxysmal positional vertigo (BPPV) 30 years ago, nearly 10 years before the SS symptoms started, and have had problems in that department on and off throughout my life. However, I did see an internet article the other day that said vestibular problems were part of SS.
aitarg35939 Cowgirl918
Posted
I tend toward low BP, though not as low or problematic as yours. When docs & nurses worry about it I tell them that I once donated blood at 90/45, are my cookie & drove back to work for the rest of the day. (Blood banks always craved my blood because it could be given to infants, unlike that of most Americans.) I practically had to fight my way out of recovery after surgery when I was 36 - nurses kept me there for hours, waiting for my blood pressure to rise. Ha!
In my 60s it has risen a bit, hardly ever 90/60 any more. How low is yours?