I feel at a dead-end lately: my symptoms keep getting worse and I have no environmental stability at home, plus the few supplements that were marginally helping have 'pooped out'. I can't afford to go back to a CFS specialist -- and they didn't offer much that helped anyway. However, one thing that I have never had ruled out is AI disease (when I asked, my very helpful GP said that "[he] thinks we've done enough testing and maybe should get a hobby"). I know of two people (a brother and a cousin) in my family who have Crohn's disease, though I'm not familiar with the rest of my family history. My bloodwork has always been okay-ish, though I did have Thyroid antibodies (in range) at one point; a family friend said, in her opinion, any antibodies = Hashi's, but I also had a scan and it was normal.
I'm seeing a new GP next week -- a social worker spoke to another client with CFS and got the name of the GP she sees. I wanted to ask her to try and rule out anything AI-related, and was just wondering if there were any specific tests I should ask for (without scaring her away or looking like I've done 'too much research')?
I am going to speculate that you do have an AI disease. I am just kinda playing the law of averages here...... that's would be far more likely the cause than post-infection CFS. Based upon Dr. Younger's research... roughly 1/3 of CFS patients are AI triggered... and Cronh's is a biggie (along with Lupus, MS, and a few others). By the way.. I also have Crohn's, and I also have family members with Crohn's, (and a few other AI diseases)... and they have 'exertion intolerance' as well.
Out of curiosity... can you eat popcorn? Also... are you ever woken up by emergency of 'having to do a bowel movement'?
One way that might help determine if your CFS was AI triggered... was if you had slow onset CFS/ME... rather than sudden onset. This isn't 100% predictive... but I've heard its a good indicator.
However... an important thing to know is that my CFS does NOT flareup when my Cronh's flares up. This is a very important distinguishment.... in fact... my cronh's has never been better... but my CFS/ME has continued to spiral down (untill the last 12 months).
What basically happens is that those with AI diseases are far more likely to develop 'secondary AI diseases' as they get older. For example... I developed Iritis... Auto-immune chronic hives... and a few others. Basically... if your immune system is outa wack... it may start to misfire in many other way as you get older.
So what I'm saying is... it's important to get diagnosed if you have an AI disease... (especially because some of them can be life-threatening) but... even if its cured to the point where it goes into complete remission... you will still have to deal with 'exertion intolerance' ie (CFS/ME) in the same way the others do... but you may find that it may get 'a little better' if the AI disease is properly treated... sorta like with anti-virals and post-infection CFS/ME... but not quite as much.
A huge mistake I made was believing that I didnt have CFS/ME... because I had Cronh's... and my first G.I. doctor was no help at all in this area. It wasn't until a knowledgeable Endocrinologist set me straight on this.
