Thank you for starting this thread! I have a loooong anecdote with lots of speculation about my experience with environmental triggers, connective tissue stuff, and the hint of cerebrospinal fluid pressure but no confirmed CCI.
My ME/CFS seems to have been triggered by environmental exposures. The first time it was metal, but I went into remission before I got diagnosed. The second time it was mold in the HVAC in an old apartment in St. Louis. I got back to 90% before getting diagnosed by no longer using the HVAC. I moved to Seattle shortly after that where I started getting worse. I discovered mold avoidance and my husband and I threw away everything we owned and moved twice. I spent time in the suburbs of Phoenix, which helped a lot.
Eventually I was able to work full time and walk quite a bit though I wasn't back to normal. My scents sensitivity was pretty bad still and I started getting MCAS like reactions to so many things. I was at a steady level of functioning but not healthy for about a year.
In January I started developing EDS-like symptoms. My head started to feel unstable and I had to be very conscious of my posture as I walked. My hip got kind of out of joint and made it hard to walk for a few days but it eventually popped back in place. I had a finger joint feel like it popped out of place but it popped back quickly.
My connective tissue felt like it wasn't working. I couldn't sleep on my side or stand with my hands on my hips because it felt like my bones were just too heavy and slipping down. Like my body couldn't support itself. As I was walking I felt like I had to be precise in my movements so that my knees and hips would stay in place. It was sooooo weird and painful.
I have always shown minor signs of hypermobility (extreme flexibility and dislocated elbow as a child, hyperextended elbows, flat feet) but other than the dislocated elbow it had never affected my health or caused any problems.
I started having a lot of problems digesting food, especially fiber. I was really bloated after eating and I couldn't handle anything spicy. When I was living in a moldy apartment I had had stomach issues but this was much worse than anything I had experienced. I could only handle low-fiber, low-fat bland foods. My diet started to resemble the bland diet I had learned to prepare for my sister after her colon surgery.
At the same time I had a lot of headaches and a weird feeling of pressure behind my left eye. My optometrist had told me that I was at an elevated risk of acute angle closure glaucoma in my left eye because of its shape so if I ever felt pressure behind my left eye, I should get it checked as soon as possible. It's easily fixed if it's caught early but you can go blind if you wait a few days.
So I went to an ophthalmologist. It wasn't acute angle closure glaucoma (yay!!!!) but he saw cerebrospinal fluid pressure on the back of both of my eyes (it was more pronounced on the left). He called a colleague in to confirm the finding and referred me to get an MRI and see a neuro ophthalmologist.
This was in February and I had read Jeff's website and I knew Jen had had surgery as well. I was excited at the potential for a more concrete diagnosis but also nervous since I couldn't get the surgery due to my metal sensitivity.
While I was waiting to get the MRI and see the neuro ophthalmologist my husband and I decided to test out what had worked for me previously- going to the desert. Within 24 hours of being in suburban Phoenix the feeling of pressure behind my eye had subsided and I was able to enjoy going on a short hike. I even ate all of the spicy and fiber-loaded food I wanted!
From reading Dr. Afrin's
Never Bet Against Occam I knew that connective tissue issues could be related to MCAS. I suspected that I was getting worse because the overflow drain my bathroom sink had taken on a new smell and seemed to be growing something since late December. My husband had tried everything to clean it but it's impossible to really get inside an overflow drain.
I was obviously better in Phoenix but I didn't know how much of that was just due to being away from my drain and how much was due to being in the desert and away from Seattle. After going to Phoenix for a second weekend (and feeling better again) I got my MRI and finally saw the neuro ophthalmologist.
My MRI was done lying down and after I had just returned from Phoenix so I wasn't feeling much pressure behind my eyes anyway. The neuro ophthalmologist didn't see anything but he noted that I had some white spots in my brain which are typical of people who have migraines.
I got the sense that he thought I was a hypochondriac and he didn't seem to believe in ME/CFS. He said that my scan looked perfectly fine and I didn't get the opportunity to ask for an upright MRI as a follow up.
At this point my husband and I decided to move to Phoenix instead of trying to get a second opinion. Even if the MRI had found the cerebrospinal fluid pressure the ophthalmologists initially saw I wouldn't have been able to get surgery. I didn't even have the problem when I was in Phoenix so I thought that would be the most effective treatment option.
As research suggests that cities have unique microbiomes I figured it was maybe plausible that Seattle was contributing to my health issues through an MCAS like reaction (
https://www.npr.org/sections/health...sible-neighbors-each-city-has-unique-microbes). Without trying that hard to control my mold exposure in St. Louis I had been able to get to 90% but in Seattle I had struggled for two years even with mold avoidance and careful pacing.
Since moving to Phoenix in late March, my connective tissue issues are back to baseline. My stomach issues and pressure headaches are gone. My neck doesn't hurt and my head doesn't feel wobbly. My scents sensitivities and MCAS stuff have gotten a lot better but still aren't back to baseline.
Most of my ME/CFS symptoms are gone as well. I feel like I am slowly recovering but I am not ready to say I am in remission yet. At this point I don't meet most definitions of ME/CFS and I am continuing to improve. I feel like a true "Phoenix Rising" (sorry for the bad pun).
After all of this I think that environmental triggers were absolutely contributing to connective tissue problems for me. I think the cerebrospinal fluid pressure the ophthalmologist saw suggested that I was starting to develop some of the CCI like issues that others have had. It seemed like this was compounding all of my other symptoms.
I don't think it's possible to tease out what came first or one single cause. It felt like my history of health issues combined with environmental triggers ended up pushing me into ME/CFS and the neck issues were part of a downward spiral, where they were both a symptom and a cause. I am extremely lucky that I was able to find a way to get better.
I am SO grateful that Jen and Jeff shared their stories. It helped me realize how much worse I could get and it made me worry that I would do irreversible damage to my neck if I stayed in Seattle. I have NO idea if that is possible and maybe I was just being paranoid, but it pushed me to move to Phoenix and start recovering.
I don't think moving to Phoenix is going to be the answer for most people with these problems. Since MCAS and mold sensitivity varies by person it might be an awful place for many people even. I made the choice after spending a lot of time in Phoenix and carefully observing my body's reactions. I think we need a lot more research into environmental triggers, connective tissue, and CCI.
... Do you tolerate the hot weather okay?