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Originally Posted by Healthgirl
I am actually going to post an update right after I answer. As far as oxygenation goes, I don't mean oxygen breathed in, I am meaning oxygen necessary for mitochondrial function and cell health.
I attribute the malfunctioning breathing to that cause in the first place, which I'm sure contributes to the overall problems, but think it wouldn't be the case with out the autonomic dysfunction in the first place.
I have some kind of bizarre thing thats been happening for 3 years now where as I'm dozing off I wake up with either a harsh myoclonic jerk in a limb or my whole body and other times its with heart racing. I don't think I have obstructive sleep apnea, but I do have a problem where I wake up with a quick gasp type of involuntary in breath and then I fall back asleep or it keeps me up. My doctor said its because of my nervous system and its like a "reboot". Any way these "happenings" used to be scary, and now they are just annoying.
I forgot the name for it, but the ENT said my nose is inflamed leaving me small areas to breath through and I do notice in the early 3 am morning hours it becomes very difficult to breath so I get a poor nights sleep due to having to remember to keep my mouth open to breath. I think you said you take an allergy med, so maybe you have this problem as well?
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This is so similar to what I experience nightly that it's almost a joy to read your description - awful as it is that someone else is going through such similar stuff as me. I too have these sharp intakes that wake me, severe palpitations and presently, bad SFN pain throughout my peripheries. I don't get the lightening bolt pain anymore though at least - used to hate that. I do get muscle or nerve twitching spasms in random parts of my body that can go on for hours. The other night the sole of my right foot started to vibrate and there was same twitching under the skin. It often effects a buttock or an elbow or a muscle or nerve directly above my right eye in my forehead. It's not painful but it is very disconcerting and again, it affects my sleep.
My nose is often dry and inflamed too but I do breathe through it rather than through my mouth because I'm a serious bruxist who apparently grinds away her nights. I'm on my third bespoke mouthguard in two years now. Yes I sometimes take antihistame to help me sleep and breathe through nose better. But this worsens the sicca so I try to pace it carefully and only take one a few times a week.
The neuro thinks I have mild ganglionopathy relating to Sjogrens but she doesn't seem to think the awful leaden limb fatigue is related to this or the SFN. It was my first truly weird symptom, predating the RA type pain by a year or two so I've had this limb fatigue for about seven years now - getting slowly worse. I use pillows to prop up my arms and legs but it's like carrying too heavy a burden to lift?
It's got really bad lately and my neurologist says think my Sjogrens would not explain it. Maybe it's vaso spasms from secondary Raynauds, as a previous CTD professor explained it, but I get no visible colour changes if so.
So you think it's all part of autonomic neuropathy with you and your neurologist confirms this too? Mine says there are no tests she can do to confirm ganglionopathy or my SFN (she won't repeat the skin biopsies - which were negative a few years ago) but she's prepared to go by my description alone. She says there is no other way to monitor it than to be guided by me. She is very anti medications apart from Pregabalin - which I refuse to try.
I find this lack of evidence for presumed diagnosises troubling but that's where I am at as can't afford to seek private assessments.