Hope

[Tina]

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.

 

[Not dead yet!]

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.

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.

 

[Baz493]

Tina, Sorry to hear about that. I'm one of the many who get shoved into mental health diagnoses while the actual disease goes unchecked so I relate. I have the PL-7 anti-synthetase antibodies but doctors keep tip-toeing around actually saying the name, because of previous misdiagnoses. Having been previously exposed to a chemical called trichloroethylene, which replaces a part of the Kreb's cycle, I am very familiar with chronic fatigue yet found it almost impossible to get physicians to recognise. In the military you might have been exposed to any of a range of toxic exposures. In researching my own current condition, relating to the chemical used to coat glass, I was reading about toxic silane exposures in military personal working on military vehicles. A variety of different silane types are used in lubricants, resulting in many cases of injury. However I think that everyone is aware of things, like the radiation exposures in Iraq as well, being involved in disease cycles. The fact that you mention a lot of the same conditions which have been thrown around during my own medical investigations leads me to mention that you should research intra-abdominal pressures. Because I experienced sudden respiratory failure, eight years ago, their support for the pressures suddenly ceased. The result of a reduction in the pressure is that the abdominal muscles and lower spinal muscles lose the required support to operate normally. This compromises all other muscle function throughout the body. The pressures are also required to support normal valve function throughout the gastrointestinal tract so a reduction, or increase, in them completely compromises the system, resulting in things like GERD, dysphagia, GORD, etc. I am nearing the point where I will be able to commence taking legal action over my own work injury, medical misdiagnosis, and denial of rights to compensation, so am beginning to see the light at the end of my own tunnel through the medical maze.

 

[Ughhh]

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.

Interesting, when I asked my rheumatologist about modafinil a medication I've taken before, he said no because that isn't a rheumatological medication. I really don't like my rheumatologist.

Tina I'm glad to read your experience with a better Dr. thanks for sharing it!!!

 

[Morgoth03]

Hi! Hearing your doctor acknowledge ME/CFS must’ve been so validating.It’s a step forward -finally some recognition!This shows change is happening. Hopefully, more doctors follow suit and better care becomes the standard for us all...