Hi Barbara
Yes, the basic physiology is that when a person eats, more blood is needed in the GI tract to aid digestion. If its a large meal then this requires more blood still, and so even in normal functioning folk this can lead to post-priandal fatigue. This is very logical. I’m guessing though this response is more exaggerated in the POTS/dysautonomic person, as less blood is available for the brain. I do sometimes go lightheaded after eating. However, as soon as I eat anything, just small amounts and often bland foods, my hands go cold and clammy, I go tachy, I feel instantly like I went to throw it back up. These feelings can last a few seconds to several hours. I get the abdo discomfort a while after. So unsure whether my gut is getting enough blood to digest, or whether its a neuromuscular problem. In the end I do digest but unsure whether its delayed emptying from the stomach due to nerve dysfunction, or whether its all bit hyperactive. Have a lot of gurgling at times. I’m a bit perplexed. I’m doubtful the gp will know, I think we know a bucketload more about this than they do. I think they think the ANS starts and stops at fight/flight. Duh! I did mention to the gp about my lack of appetite and generally not feeling well in december but I think it’s got lot amidst a sea of other info. I think he is only concerned that I don’t have anything that is considered a problem for flying!
I haven’t watched Dr Diana’s video yet, but I will. My magnesium was normal on blood test but I remember our point on intracellular v extracellular levels. I think my reading was at low end of normal. Thanks for the Epsom salt bath suggestion, i will have to research that more when I am back in the UK.
Do we know why we jerk and have fasciculations? As skeletal muscle is part of a different nervous system, I’m unsure of the connection. The best link I can see is that we are for various reasons prone to dehydration and nutritional deficiencies, which can cause twitches. I’m guessing though that your injury might be more of a factor with you?. You damaged the spinal cord? I’m jerking distally mainly so calves, feet, forearm, hands, oh and like I mentioned I feel like my abdomen also does it, prob the stomach muscles. This is more unsettling than the limbs.
It sounds like this set of problems have had a profound effect upon your life, being so active beforehand. Were you diagnosed with EDS after your accident? What type as you not particularly hypermobile? Sorry I’m sure you have answered or mentioned bout this in other posts. I guess you have to get on with life and search or answers! Despite great work they do, the medical profession is limited. If things don’t fit a neat (ish) box then things go awry. Rather than trying to fit diagnoses around people, there needs to more fitting people around diagnoses. From that I mean don’t cast a patient aside because there is no clear cut diagnosis. I hate the general stigma that is associated with CFS/ME/Fibromyalgia. To these people their pain is real!
I do agree that psychological reasons for illnesses are over emphasised in patients in which an organic cause can’t be found in tests. I do believe that some psychological input can be beneficial to some people who struggle to cope with their pain or disability. Some people panic and become over anxious, so tackling anxiety means reducing the flow of adrenaline, improving sleep, and this could have an effect on fatigue and overall pain. In your case though Barbara you have more than enough defined in your illness profile to justify why you have had so many symptoms. Long way to go for scientists. Doctors only seem to see autonomic dysfunction as being related to actual damage to the nerves, such as physical injury or diabetes. I believe the dysfunction seen in POTS or other conditions, relates to a pathological process, akin to that of MS in the CNS, it just hasn’t been discovered yet. These nerves misfire for a reason! But as all these nerves are hidden, there is little interest. Very sad.
MRI back tomorrow, I expecting it to be normal, will see. Of course you can fly home ‘Richard’… I have organised wheelchair assistance at the airport. Not going to walk across big airports feeling fatigued with orthostatic intolerance!! Recipe for disaster.
Richard