I have CFS/ME. I have had it since 2007 that’s going on 7 years now and as with many others my illness started out with a mono like viral infection. For the last 2 years my symptoms amount to being unable to stand upright without collapsing related to dysautonamia. I experience post exertional malaise if I push myself to be upright (sitting or standing) for more than 2 hours. 2 months ago I started having daily seizures and I when they started happening I went to the ER because I had never had a seizure before. The ER doctor was very short with me because I have been diagnosed with CFS/ME. I have been told over and over that CFS/ME is not a true disease and that I need to see a psychiatrist.
In 2012 I started seeing a psyciatrist and he immediatly said that I have CFS/ME. I am lucky to have one of the few psychiatrist that is willing to try drugs that are on the CFS/ME list of ‘possible drugs’ that may help with symptoms, or may not. He was willing to act as my primary care doctor and prescribe for off label us of medications which was a big risk for him but he had compassion for me because he knew that this was a real disease. He has also called doctor Montoya’s office and Dr. Chia’s office to set up an appointment to have me seen but then I lost my health insurance and could not afford to go.
That is another aspect that isn’t mentioned here. Many of us lost our jobs and are without any income. Not even disability. I am pretty proud and the last thing that I want to do is surrender to this horrible disease and file for disability. I keep hoping that I will get better. I keep hoping that I can return to my beloved career as a veterinary technician. I cannot pay for doctor’s visits or basic daily living. This has put strain on many of my friendship and relationships, in addition to not be able to meet face to face with friends and family. This leads to isolation which leads to depression. My depression is secondary to the nature of this disease.
Back to the seizures that I started having 2 months ago, these seizures can be a progression of Myalgic Encephelamyeltitis and I have no doctor that will even look into that at this time. I feel like that is dangerous, now my neurological system is severely compromised. Regular test for lupus, MS, and autoimmune disease still come on normal now and that means that I am now faced with a diagnosis of conversion disorder once these new doctors that have no idea what CFS/ME is run out of diseases to rule out. This mean that any future visits or progression of my illness will be dismissed as psychological and no treatments or test will be offered to me. Like the above article states, I feel like lying that I have CFS/ME so that I am not faced with doubt and be dismissed as creating these symptoms in my head.
It is sad how history has isolated so many people like me with CFS/ME. I was lucky to have 2 different doctors diagnose me in 2011 but I still face future doctors that will continue to doubt this diagnoses. I have had test’s thrown out that prove my diagnosis of CFS/ME. I have read my current medical notes and they state that I need another psychiatrist and another rheumatologist for another opinion. This is partly the case because I just got insurance with the new Healthcare Reform Act as of January 1 2014 and I do not have access to my normal doctors anymore because my new health insurance does not cover them. I have to start with brand new doctors and they are starting their list of rule outs all over again because they simply disagree that CFS/ME is real. I just don’t have the money to fly to a specialist that treats ME/CFS. There isn’t a specialist in my area that I live in. The other problem is that CFS/ME doctors have a wait list of 2 or 3 years. This is my story and I really hope and pray that history will change for all of us. <3