Misdiagnosed Fibromyalgia by doctor

[Guest]

Hi Joyce

Wow--you have no idea how much like me you sound. They never really found the causes of the blood pressure/heart rate issues for me. Other than the strange rhythms I'd have for no apparent reason.

I'm surprised the nitro (I take it, too, for angina) sends my blood pressure through the floor. Pain also sens my bp through the roof. Last PM appt after I fell and ruptured the last disc was 186/112--due to pain--and the BP meds didn't touch it. When my pain is up--there is nothing that will keep it down. But, I've only had to be in the hospital once for hypertensive crisis--the ER couldn't get it down. Had a mild heart attack when I was barely 40--based on Troponin levels and spent a couple of days in CCU.

I can't answer if it's PLS related--but I'd tend to think not. What I HAVE found, though--is I think it's genetic. Now, my 28 yo daughter is having some of the same symptoms I had at her age. The crazy high heart rate (and she's a healthy weight) even at rest and a blood pressure so low it's caused her to black out. 80/40 isn't at all uncommon for her.

I'm assuming they've done a cardiac echo on you? I've read several studies that show that 75% of people with mitral valve prolapse also have fibromyalgia (that might be the other way around--75% with fibro have MVP) At any rate, one study suggested that fibro was actually something we were 'born' with---the same thing that causes the MVP --rather, something that happens during that time of gestation while the fetus forms. Years ago--I was trying to figure my strange symptoms out--and 'fibro' was a waste-basket diagnosis back then.

Other schools of thought are that fibro may be auto-immune based--several with it seem to develop things like Lupus, Mixed connective tissue disease and others. -- again, if they are auto-immune-- is it possible that we are genetically predisposed to them by something that happens to us in the fetal stage while we develop.

I'd be very interested to know if any others here with PLS type of symptoms seem to be like you with the non-figured out cardiac issues. I'm wondering, too, if the connection isn't genetic in origin. At least as far as the heart symptoms and PLS symptoms. Did they ever tell you that you have mitral valve prolapse or fibromyalgia over the years while they tried to figure you out?

 

[Guest]

Re: Tilt table....

yes at one point, one doc diagnosed me with fibromyalgia, that was the first time a doc even tried to diagnose me. But since then several docs I have talked to and have worked with me say that is not the diagnosis. I had learned all I could about fibro but it just didn't fit right. Some things were there but others just didn't fit with my symptoms. Like exercise. In fibro mild/moderate exercise actually helps relieve the symtoms and increases energy, where as with me it robs me of energy and makes me weaker. Also none of the meds used for treating fibro worked with me, they just made things worse.

I have had oodles of work ups on my heart and they come back with the 'don't know' diagnosis. So I really don't think about it unless I get alot of palpations happening or fainting spells. The faint spells do not happen as much anymore. The bp is all over the place and is unpredictable for the high low. Same with the heart beat. The odd little spike in the blip on the heart monitor that always freaks out the newbie doing a test strip is always the same. I now prewarn them they will see something. I have had nuke test done as well as every kind of stress tests and ekg's and echo's done, as well as heart halters for continuous studies. All for nothing but a 'don't know' and huge bill! That is why I wonder if there is a correlation between PLS and the heart stuff...since they have a hard time with diagnosing the PLS stuff too.