Hi I'm new here and desperate for some advice. I suffer from a connective tissue disorder known as Ehlers Danlos (EDS). I have been having chest pain and extreme breathlessness on exertion, feel unsteady on my feet and profus sweating. I am also cold and clammy to the touch and wake in the night saturated. I had a 48 hour holter which showed a heart rate range from 55-144 although I have recorded much higher and lower rates. I then had an angiogram which was horrendous! People with EDS are typically resistant to pain killing medication and anesthetiser. I have very tiny arteries which made it extremely difficult to perform the procedure.
Anyway the results were normal and I received a letter saying that my heart rate was within the normal range and I don't have Postural Orthostatic tachycardia (POTS) and therefore the pains in my chest are not caused by my heart! I still can't believe what I have read. Firstly and angiogram is not a diagnostic test for POTS which is common in EDS patients. Secondly how is 55-144 a normal range under normal day to day activity when the patient has the above symptoms. I can go from a resting heart rate of 55 to 120 in the space of five minutes just walking from the seated to the toilet! The consultant has referred me back to my doctor whom I am confident won't order any further tests! Any advice would be appreciated?