Sjogrens vs CFS or FMS diagnosis ? for navigating med systems

[wendyoh]

Hi I have SJS diagnosis per antibody etc about 5 years ago, but I was diagnosed with fibromyalgia and chronic fatigue syndrome in the 90s--also  have verified cervical spine issues that tie in.

I just learned that my primary doctor puts CFS as my primary diagnosis when I come in for medical visits. In the past my spine problems and FMS may have been primary but then I worked with a doc who is interested in CFS for awhile and that must be when that started. My care is in a big system that is linked by computer network so that would be what any other physicians I would be referred to would see. At this point in my life its not really like I can have too many secrets with my record because my complicated journey to figure out chronic pain and fatigue the last 25 years is there, unless I go out of the system and bring along what records I want them to see.

I do believe CFS is a real medical disorder and not anymore psychological than diabetes etc (The ACEs questionnaire shows that all illness has an emotional component of course) but obviously not all MDs think that way. I had thought things were going in a better direction for the diagnosis but recently read it may be regressing again, in terms of how MDs are told to view CFS etiology. So its making me wonder if I should try to talk to my doc and make a case that CFS and FMS diagnoses were given to me before we knew I had SJS and that SJS could explain those issues and I would prefer she use that as my primary one and as her lens to view me.

I am curious what thoughts others have on that? I am wondering if Sjgorens has more "credibility" as a medical illness in that system because of being an auto-immune

[Joe S.]

wendyoh, For the most part I have given up on the American Medical System. I used to think they were good in ER situations. I do not any more. CFS, FM, Sjogren's i consider all to be auto immune diseases. A large number of doctors in the USA believe that these are diseases in your head and there is nothing physically wrong with you as it does not fit their model of disease.

I use both meds and supplements as well alternative therapies to help me. Since I am allergic to so much, I check everything. Medical Marijuana did help when I tried it once. I have been denied it now, so I may have to move. It is a challenge when you do eventually find something that works to get access to it.

I wish you success in finding what will work for you. (((Hugs)))

[wendyoh]

hey Joe---actually I agree with you---I am not looking for much from the mainstream crew. But I need them sometimes and was just wondering if within that system would be better to have certain diagnoses primary.........but perhaps its just a last gasp of me grappling with that system and I just need to let it go. But if I ever did need to go on disability, or emergency care (and like you said sometimes they aren't perfect at that but sometimes you know they really are) I would need their support, so just trying to figure out how to make the most of it. But I am very excited at working on nutrition and more natural methods now since I can't tolerate most medicines anyway, fortunately I do not need much from the system.

[quietdynamics]

wendyoh.. I am sending fibro info to a friend and just posted info on another posters query on this.. so I am just going to copy and paste for you.. 

I have a Dx of both Sjogren's and Fibroyalgia.
My experience due to med trials is that the pain experience with Fribromyalgia when Sjgrens is controlled is significantly different.

Chief Rheum at teaching hospital Dx'd Fiibro with Sjogrens (and took off Dx of Lupus).
Dr. Vinino @ PennMed Sjogrens Center concured when I questioned Fibro.
Drs. Baer and Birnbaum @ Hopkins Sjogren's have articles noting occurrence of both in patients.
Treatment protocol is different and not one size fits all.

Before any Dx when I went to GP, I was waking in AM exhausted, falling out of bed and bouncing off hallway walls on way to get ready for work.
My legs would feel like they were weighted down with lead, and I would stumble, falter, stairs where tricky. Exhaustion could bring me to tears.
Test and MRI to check for MS.. then GP determined Fibro.. but other issues did not get better .. so off to Teaching Hospital and later DX

There now is a test for Fibro 
"Once we have a biological test, we will know that study participants do indeed have fibromyalgia. There will be no skewed results, and the talk of psychological illness will be in our review mirror.  This is a savory thought."
"Another team of researchers in upstate New York has found that fibromyalgia patients have excess sensory nerve fibers in the blood vessels of their hands, which may disrupt the flow of blood throughout the body."  (I have short times when my extremities turn reddish purple, sometimes an odd greenish hue.. but thankfully not often of late.)
http://nationalpainreport.com/new-fibromyalgia-blood-test-is-99-accurate-8821072.html

"Past imaging studies of patients with fibromyalgia had shown abnormalities in cerebral blood flow, also called brain perfusion. In some areas of the brain, blood flow was below normal, and in some areas, it was above normal. In this study, by using whole-brain scans on the participants, researchers were able to analyze how perfusion in each area of the brain related to measures of pain, disability, anxiety, and depression."
http://www.webmd.com/fibromyalgia/news/20081103/fibromyalgia-a-real-disease-study-shows

Fibromyalgia Stamford Uni Video: Pain management
https://sjogrensworld.org/index.php?topic=25284.0

Podcast: Is There a New Explanation for Fibromyalgia?
Dr. Anne Louise Oaklander is Associate Professor of Neurology at Harvard Medical School and an Associate in Neurology and Assistant in Pathology at Massachusetts General Hospital in Boston  http://relief.news/new-explanation-fibromyalgia-podcast-anne-louise-oaklander/

Early on I was Rx'd Cymbalta and then Neurotin was added for Fibro. I think the Oaklander podcast/transcript shows how this would be effective.

[wendyoh]

thanks for the info! I never did fit quite right in the FMS category, didn't have all the tender points etc but with  CFS/ME I do fit the exercise intolerance test, where people with CFS sometimes can do stuff one day but then crash the next. 

You sound hopeful and like you have been around good practitioners that have been respectful, good to hear. My concern is that even if we have tests that validate a disorder as existing, I wonder if just out of hand some medical people will have a bias when they see or hear FMS or CFS, and sounds like Joe thinks they aren't all impressed even with an auto-immune diagnosis.  They say it can take 20 years for research to turn into accepted practice, people maintain their biases etc

But today I feel more inclined to let it go...........