im4god2010

Well I have a diagnosis of POTs and I have lupus, fibromyalgia and chronic iron deficiency anemia and this chest pain and shortness of breath is really bothering me. I know now people are saying it's because of the pots and I never knew that I had two pulmonary function test done one was abnormal one was ok makes no sense to me as as you can't go from abnormal to normal on a week but this has been going on for a while and I can't get anyone to get me answers so I am glad I found the website here so I can get some opinions from others dealing with the same thing. So we will see thanks for your information

Hi there, I am new to this site and so I am just getting around to seeing people post. I am so sorry that you are going through this with insurance....You know when I got very sick last year and my BP dropped to 86/60 I almost fell in the shower....I went to the ER and they put me in the hosptial. When my cardiologist came in I looked at her and said I cant take this anymore and I amnot leaving until they figure out why my BP is so low and I cant get up without feeling like I am going to fall....I told the electrophysiology doctor the same thing and I got my tilt table test and EP study done in the hosptial and everything got covered. I was tired of livign like that going to doctors that make you go to more doctors and I am glad that I put my foot down and now we know I have POTS, Lupus, another autoimmune disorder...if you get bad go to teh hosptial then demand they do it there.

Hi there I am new to this site and I just saw yoru post. Well I am in the same boat. I have Gastroparesis (slow mobility of the stomach) and before I knew about POTS it was being caused by my Scleroderma and lupus. Now my Gastro Dr put me on reglan and protonix (that helps with stomach acid) however the reglan you are only suppposed to be on it for a certain amount of time and then off of it...I have been on it for three years to long....I see you tried teh domperoidone I am seeing where it caused some heart problems and that is soemthing not good he mentioned that to me about that medicaction and so I said no thank you...no more of those problems have enough thank you. I have recently moved and have a new doctor that is looking into somehting called OCTREOTIDE-it si an injection you give yourself and it is supposed to help with bacteria in teh stomach and stomach mobility. Now I have not heard from him about it yet but he is working on it worth asking about. I have had teh side abdominal pain as well and it has come on in the last week and a half now I am in some serious pain but I hate going to the Hosptial and I hesitate but I might have to pain is to much I see what you have had to go through and I would be flippin. I am going to call the doctor today and if I get on this medication I will let you know. I hope that this helps and am also going to have my doctor look into some of the things you have listed and see if maybe that is causing some issues with me.

Hi there, Yes I have Pots and lupus. It has taken the doctors about almost two years to get to the bottom of everything but we finally started getting some answers last year. My Blood pressure had dropped to 86/60 and I almost fell in teh shower...went to the ER got admited they called every doctor under the sun to help and they got a hemotologist involved and it was him that said I had lupus so dealing with lupus and POTS togethter is tough because you are not sure what is causing what symptoms. The tilt table test was a easy diagnosis for the POTS and then the blood work for the lupus... I have lots of flares they are worse when it is time for my cycle to start...but dealing with pots and lupus together is hard....I hope that you get some answers and that you can get soem help.

Hi there, I as well get chest pressure/pain and shortness of breath. I have wondered about this myself as all my lung test have come back ok and my heart test except for a little bit of elevated pressure in the heart. I wondered about this and if there was soemthing else causing this that we are unaware of and now I have an idea its the POTS. I do get fatigued I am chronic anemic and have lupus so that does not help but I just got put on a beta blocker and that is supposed to help not sure yet if it is I have not been on it that long but I sure am lightheaded on it more than before so we will see. I know the feeling feeling sick alot it stinks. I guess this is common with this disorder from what I have heard.I hope that you feel better soon

Hi Jen, I have not had any until about a week ago and it started on the left side in my abdomin and moved up into my ribs. Now I had an appointment with a lung specialst friday and I mentioned it to him and he blew it off....will not be going back there. Since it is so hard for em to get into my PCP I thought he might know. So yes I have started getting those pains and this one wont go away and it hurts...know its nto a muscle pain as I do not workout or lift anything. I feel you literally and I am not liking it...if you get another answer let me know be interested thanks

Has anyone ever had a Loop recorder put in and if so what all is involved? Has there been any problems after having it put in? My doctor is thinking about maybe doing one and I would like to hear if anyone else has had one or has one now.

I appreciate all this valuable information. I do knwo that on the echo I just had they did see a little bit of an elevated pressure in the heart...so I am not sure. He put me on a Beta blocker not sure I like how it makes me feel seeing that I already have low blood pressure and they have been known to lower BP. So we shall see thanks for all the information.

I am wondering if anyone has ever had constant shortness of breath and chest pain....I am new to this and not sure what is going on but I have had two pulmonary function test and one came back abnormal and the other one I had a week later was ok so not sure what to think about that. I know that there is something going on just not sure what...so if anyone else has ever had this please help me out. Thanks

yeah I have had these issues also however I went to a pulmonogist and had a PFT and it came back abnormal then a week and a half later I had another one and t was normal not sure how that happens but it gets frustrating because when you are like this and you cant breath and people including doctors don't believe you it s hard to deal with just keep pushing through until you get an answer