Discussion in 'General Discussion' started by Tina, May 2, 2018.

  1. Tina

    Tina Well-Known Member

    For the first time since I became sick in 2007 I am dealing with a new medical community. 99.9% of my care has been at military medical facilities. For the most part I have experienced what most of you are familiar with which is to say I was dismissed. There were varying degrees of being polite but the net result was being told that my symptoms, let alone symptom severity, did not match anything that they were seeing in my labs or imaging, so go exercise and/or participate in CBT.

    Eleven years post getting sick, I am no longer in the military medical community and today I saw a new rheumatologist. I gave him a packet of information to review before the appointment. In the packet I listed my two main diagnosis; 1) ME/CFS and 2)Antisynthetase Syndrome* (interstitial lung disease, polymyositis, dermatomyositis, dysphagia). In the packet I gave background information on ME/CFS as it has been updated with the CDC and I included my Workwell 2-Day CPET results.

    I decided that I would not bring up ME/CFS in my first appointment as the Antisynthetase is serious and there are treatment options and I knew that is what the focus of this appointment would be. To my surprise as the doctor was discussing my treatment he said, “And an unknown is how the CFS will play in all of this.” I stopped him and I said, “What did you say?” I thought I misheard him. He said, “CFS, you know Chronic Fatigue Syndrome.”

    I couldn’t believe it. It was the first time a doctor ever brought this up with me as opposed to the other way around. And he referred to it as needing consideration in my care! At times he referred to it as SEID, he mentioned the current NIH study, he mentioned that there are only about 6 specialists in the country who are treating patients. Not all of these facts were completely accurate, but it was obvious he had read my packet and more and that HE BELIEVED IT EXISTED! He even asked me if I had heard of Unrest!

    He said, “You have been sick for a very long time.” It has been my experience that doctors will not talk poorly of each other but I think his statement came close. The truth is my Antisynthetase Syndrome, my lung illness and my muscle illness, etc., all went undetected for years because all the doctors heard was that I was chronically tired and didn’t see anything in the same stupid labs they ran over and over that showed nothing was wrong. They did not look deep at all. Most even dismissed the 2-Day CPET test as me being “deconditioned.” But when the lung CT scan started showing issues they could not dismiss that.

    I was seen as a woman who was a stay at home mom and was simply tired because I had two children and had a stressful life as a military spouse. They said go exercise and get CBT. They never looked any further until I pushed and pushed.

    I am under no illusion that the doctor completely understands the landscape that is today’s understanding of ME/CFS, but it was nice to hear him simply acknowledge that it exists. I still think I have ME/CFS and that it led to my developing the Antisynthetase Syndrome. I still feel my symptom severity does not match the labs and imaging, but it gave me HOPE. I could see how the hard work that everyone is putting in may finally be starting to pay off. I could see how getting something changed on the CDC material is very powerful. Just think what could be done if we could get key medical schools to update their curriculum? If all they taught was what is on the CDC website it would be a start.
  2. Not dead yet!

    Not dead yet! Well-Known Member

    I'm really glad to hear you're being taken more seriously these days. It's such a struggle just to be heard over the preconceptions of most doctors!

    I had a similar situation where my Rheumatologist at the Pain clinic I was attending finally acknowledged that just simple Arthritis can cause exhaustion. I mean, we both knew that wasn't the only thing, but Rheumatologists can do things other doctors can't, I think. That was the clinic that first tried modafinil for me, and tried the psych drugs route of treatment for pain, etc. Neither of them worked, but just having someone try was so important, like you said, for hope.