Re: Thanks to all that have responded-From Jane!

[Guest guest]

Hi Everyone and THANK YOU VERY MUCH for your caring words, advice and concerns for me. WOW, it really meant a lot to read your responses. It does help to know that I am not alone in this although I feel VERY lonely and scared.

I did want to respond to a few of you and still search for more answers and advice. ....I am so sorry for all that you have gone through--really ALL of you--I could not believe you said you had the 'electrical shock' in your head. ME TOO-in fact back in January when all of this started that is where the pain began. I was taking advil every day to deal with the head pain...it was different than a headache and by February I was at the ER for the first time and they did a CT scan of my neck and head which were fine...since then I still have those every once in awhile but of course the pain is now everywhere and worse in certain areas. I have also had an MRI of my head and neck now along with the rest of my back....that is where the fluid on my spine was found. I have had my cholesterol checked and thyroid checked numerous times in this year of struggle. All were fine....in fact each time I have test done they end up looking okay other than the fact that the d-dimer is going up (way up) and some of my vitamin levels were too low and also slight anemia. One time my potassium was low and I heard that could cause palpitations but since that time I have had it rechecked and it was fine and now the palpitations are worse. It is SOOOOO frustrating!! Also, , the way you described your palpitations sounds SOOOOOO familiar. I guess this is another reason I get so upset about everything because I have had lots of EKG's, 2 different Echo's, an ultrasound to check for aortic aneurysm and the nuclear stress test, wore an event monitor for a month and all the heart blood enzymes checked and electrolytes, too and like I said ALL were fine. I guess this is another reason I do not want to have the heart cath done due to the complications that can happen and I am just too weak physically for my body to go through such a test. One thing I forgot to mention is that through several of some of test they have ordered (several of the MRI's and even with a couple of the ultrasounds) my heart went crazy!!!! The rhythm was all off and the palpitations were so hard that it hurt...I have been terrified each time this happens. Another new thing that has been happening is that I can simply walk around and then suddenly sit down and my eyes will be throbbing and it makes a weird sensation in my eyes and I also have been hearing a rushing sound in my ear with my heartbeat throbbing in it when I move around. Isn't this crazy?!?!?! I am soooo scared and just do not know who to turn to. I ended up calling my cardio doc yesterday just to tell them I am scared and the chest pain is so bad and asked if I could come in...they said they have nothing until the first of the year....that scared me too. I am tired of running to the ER each time and actually when I go I have gotten to where I get so anxious while I am there that I get worse. But this is my life and I want to find a doctor that cares about that and is willing to dig in with me. I have been told by several people in my area that I should just go to Emory and be checked since they are a medical school. Again, I am just lost.

Secondly, for those of you that mentioned about hiatal hernia's and acid. Well, one of the many ER visits that I had told me that is all that the chest pain was.....Acid reflux or GERD. They told me I needed to be on an acid reducer each day and that should help. They also gave me a prescription for a GI Cocktail to have at home since that is what they give in the hospital. I can say that I have used the whole bottle because each time I would have the chest pain I would take it...sometimes it helped and others not at all. Since that time I had an Endoscopy done and it showed my hiatal hernia (which I knew I had) but no other significant findings were found. In fact, he told me I would probably not need to take an acid reducer each day. So, I quit only to start having some burning and so since that time I will take pepcid off and on but that seems to cause some joint pain (I know that is crazy). I tell you I am so sensitive to medicines that I always dread taking anything because I never know what it will upset. I recently quit taking an aspirin a day because I felt like it was causing stomach upset and now I am worried that I should not have stopped taking the baby aspirin everyday. See, I never know what to do and I am always confused with all that is happening with me and NO doctor seems to care. My gastro doc wanted to do a colonoscopy but I have not felt like I having it done, yet. Just the same way I feel about the biopsy on my uterus that needs to be done. I have seen so many docs, so many ER visits, been in the hospital to only feel the worse I have ever felt and to be the most worried about my health than I have ever been.

I am sorry for each of your sufferings. I am glad we have each other. It certainly does help to know there is a place that is safe to share my concerns without all of you screaming that I am just depressed and get over it. I know that Fibromyalgia causes pain but my pain is soooooo extreme and it is everywhere not just at the pressure points.....is that normal? Do you guys think the chest pain is just from the Fibro....does anyone have problems with vasculitis type things? That is another thing one of my doctors mentioned that might be wrong but I don't even know what that means. I have also heard connective tissue disorders but the Rheumatologist said he doubted any of that but he never said what it was or why he did not think I had it. Can any of the doctors get on the same page??!!?!?! Oh well, just more venting and concerns.

You guys hang on and know that GOD DOES LOVE US and HE DOES LOOK AFTER US. I don't know what I would have done through this journey without Him. Thanks again for that wrote to me and for being concerned for me....that means SOOO much!

Please feel free to write to me personally or on the loop. I appreciate it all!

God IS My Healer!

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