I read an article from Research 1st today about orthostatic intolerance and thought I should share the information in case someone else is having the same problems. Research 1st is a project of The CFIDS Association of America. I copied this next bit from their website, "Research1st, a project of the CFIDS Association of America, the world's largest organization dedicated to making chronic fatigue syndrome widely understood, diagnosable, curable and preventable. CFS is also known as chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME, ME/CFS, or CFS/ME). We’re intensifying efforts across the field to build a critical mass of rigorous research that validates the biological basis for CFS and leads to improved methods of diagnosis and treatment."
Now back to the original reason for this post. The article came about because a woman asked a question on the Facebook site of the CFIDS site and Research1st did some investigation of the question and got back to her. The article "Is It Anxiety or OI?" I think they did a good job answering the question posed by the woman. The gist of it is that they showed a difference in what is SOMATIC (physically real) not PSYCHOSOMATIC (all in your head!) For so long I took care of people that came into the hospital thinking that they were making it up, having a breakdown, seeking drugs etc. but I didn't think it was 'real'. I think that as a health care provider I have learned more about these disorders, CFIDS, FM,RLS, etc by having been diagnosed with them then I ever did as a professional.
I have been having problems with orthostatic intolerance for many years and was told a long time ago that I was having 'panic/anxiety' issues and when that didn't work orthostatic hypotension/hypertension. I would walk into a building and my heart would start pounding and I would become short of breath, head would swirl, legs get weak, and down I would go. Never mind that prior to walking into the building I was fine and I was fine within minutes of the episode! It made no difference if I was going shopping, to church, work or whatever it would occur! Most times I wasn't stressed or anxious at all just doing what I was doing. I would get light headed rising up from a chair, short of breath walking from the kitchen sink to the livingroom, or go to bed at night and have episodes of tachycardia and shortness of breath. Most episodes were new around any type of even light physical activity. Interesting thing was they didn't happen frequently enough it would be come an issue and if I went to the doctor complaining about the tachycardia and the other issues they looked at me like I was nuts.
Read the article! I was happy to see that they did some research to help the woman...and the rest of us out.
4 comments:
Hi Vickie...I just found your blog after you commented on my WOYWW post. I had to write and tell you about a movie I saw called Under Your Skin about CHRONIC lymes disease. When I read you had been diagnosed in the past a red flag went up. I watched it on NetFlix and was so astounded. I was diagnosed with fibro(plus thyroid issues) 5 times over the years before I accepted it. You are the first artist I have met with the problem. It knocks me off my blog for months sometimes. I will be following your blog. Best of luck to you. :) Nan
Okay, so, having read the article now, I feel that maybe I should be tested for at least this one facet of what you have. Throughout my life I've experienced the exact symptoms that they (and you) describe with absolutely no anxiety-causing events or stimulus attached to them. I figured I must have been suppressing some sort of anxious feelings that caused the rapid heartbeat and spinning head - after leaving that one attorney's office because of anxiety attacks, I wonder if it wasn't just a completely somatic reaction to physical stressors and activity...
somatic means a physical response, psychosomatic means psychologically based! You may have both. Get Brian to check it out! You may be getting what I got too!
Vickie, I have OI too. About 30 seconds to a minute after getting up from the chair, my head pounds and I feel short of breath, and it sometimes goes dark. I also suffer shortness of breath if I bend over (e.g. to do up my shoes). I also suffer short episodes of tachycardia. Before being dx'd with M.E. I was dx'd with left bundle branch block which used to cause some breathlessness and palpitations on exertion but not now - can't do the exertion lol!! The cardiologist was mystified where it had come from and asked if I'd ever had any tropical diseases, and when I said no, he said it could have been caused by a "sub-clnical viral infection." I am now convinced it's something to do with the viral onset of my M.E. although when I last searched, I could find nothing linking LBBB to M.E. Just a theory!
My OI is nothing to do with anxiety. It doesn't even make me feel anxious when it happens - it's just a bore, and I wait for it to pass, and it always does.
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