shrparatch

Thank you Nova, I just can't see myself not working. While like you I tend to drag myself most days and at times think that time off would do me good, I am the only income right now. I refuse to let this beat me. As long as I can manage to be upright I will continue to work. Thanks for the hug and my prayers are with you.

Sarah, Thank you for your response. I am a nurse and have been for 17 years. I frequently have had to be taken out of work in a wheelchair. It is embarrasing. As for my diagnosis, I was not diagnosed at CC. I originally went there for my GP (gastroparesis) because my Dr's at the U of M were not doing anything for me and said that it was somatoform, basically all in my head. I am scheduled to see Dr Sweiss, inthe pain clinic, Dr Shields at the neuro clinic and a couple of other GI Dr's. However I dont see them until Sept and October. I too have trouble getting out of bed a couple days a week. However I run such a low BP that they can not put me on beta blockers. Just recently I have begun having increasingly variable HR's, anywhere between 50-120. And the palpitations and chest pain when my HR is fast are very unsettling. I feel very isolated, I really do not have alot of close friends and many of them have stopped talking to me. The majority of my family does not understand either. Sharon

Hello Nova, I can relate to your trouble. I too am a nurse and it truely is more than just a job. While I am still working, I am very close to losing my job. I have been taken out of work in a wheelchair on so many occasions that I have lost count. I hope that you get better and find support here. I am struggling with how to cope with this disease. I am thankful that I am still able to work, but very upset because that is all I can manage most days. I have to take a nap after work every day and most often am left only able to lay down the rest of the day. My house and family have had to be put on the "back burner" so to speak. I long for the way my life used to be.

I was on Northera for a while after I began to have serious side effects from midodrine. While it worked very well for my BP, I began having severe headaches while I was on it. I have since been taken off the Northera and have started to have the severe headaches again so I am wondering if they were actually related to the Northera at all. Good luck to you, and I hope it will work for you.

Hello, I am new here and have been suffering for years. I have multiple diagnoses including Gastroparesis, Neurocardiogenic Syncope, & IBS with diahrrea and constipation. I was originally diagnosed with these in late 2008. Since that time I have had multiple tests, been on multiple medications, and just progressively gotten worse. I have recently switched my care to the Cleveland Clinic. I have had several more blood tests and a QSART test (which I failed). I have a multitude of seemingly unrelated symptoms including lightheadedness, low BP, variable HR (50-120), vision disturbances, recurrent headaches, persistant nausea (sometimes vomiting) and abdominal pain, fecal incontinance, weakness, muscle pain in hips and lower legs, little to no appetite, fatigue, and I get full after just a few bites. I have days when I can not tolerate being upright at all and have significant difficulty thinking. With the exception of a select few, my symptoms seem to come and go from day to day. I am very frustrated and confused. I am the sole support for my family at this time and having significant difficulty maintaining my full time job. I am just wondering if this sounds like anything you all have went through? Do any of you still work? How do you cope?