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Stable moderate ME/CFS for years then strange new symptoms all started culminating in MCS, food and mold sensitivity


Senior Member
I wonder if anyone here might know something about whats been going on with my health lately, maybe had a similar experience or can apply their own knowledge ?

Short version of the story - I fairly healthy when younger, apart from hayfever, a little asthma during school that seemed to clear up as I got older, was fairly physically active, did a lot of sports, gardening, fishing, making stuff DIY, all sorts ( small town in England ) Went to university university in a big modern city and was fine for the first 2 years then in the 3rd year my classmate failed the year so I ended up I living in a difficult environment socially , had onset of chronic back pain due to a new chair and general hardship of the difficulty of the course and also my misgivings with its design or usefulness. There was what may have been black mold growing on the wall next to my bed, due to condensation / poor design of the house, I kept cleaning it off with bleach but it always grew back. Around halfway through the year I developed several overlapping and not clear cut cases of mental illnesses, primarily depression and OCD. I had issues with my skin on my face since that time, and acne like infections on my eyelids sometimes, which persisted to this day, I also lost a lot of hair and had some sort of dandruff like infection, I forgot the name but I cured it with special shampoos.

Things were fine for a few years, I moved back home after university in 2010 and struggled to deal with my feelings, not realising I had common psychological issues that were well understood by professionals. I found it hard to be around my parents, I got easily angry upset or distracted, I was very sensitive and had a lot of mood changes. I got psychological help though and I learned to manage my issues, until it was mostly the OCD that was still an issue. During this time I mostly spent the daytime in a simple wooden building in my garden, it was less than 10 years old at that point, it was generally in good condition but there may have been mold, one area of one wall had rot due to water exposure from outside. In 2015 I decided I was too cold in the winter in this building, and it was too loud due to the small road nearby, so I tried to improve the building by patching up the area with the rot and removing what was causing it, then I installed insulation boards ( celotex ), a sort of yellow foam with a silver foil coating, and nailed plywood panels over that, making the room look more like an actual room in a house, I also injected lots of silicone into the gaps between walls and roof etc that this simple building had. I remember feeling ill due to that chemical exposure, sitting in that room with now poor ventilation, with all the VOCs coming off the recently applied silicone.

Maybe a couple months after that I was running one day and I had a unusual pain in my chest below the left nipple which might have been muscular, but it made me worry about heart attacks, this lead me to have a panic attack a few days later which I mistook for a real heart attack at first. I had general anxiety disorder for about 3 months after that, I was very restless but also at times irrationally paranoid about people sneaking up on me from behind to assassinate me.

There was then a couple of months period after I got over the anxiety where I didn't know what to do as I felt odd emotionally, I focused on exercise to distract myself from this strange way of feeling ( arguably just another chapter in my mental health saga ). There were some strange experiences around this time too.. I remember an ME/CFS like tiredness one day when I walked to the park one summer evening, I felt weak and exhausted without apparent cause, I believe this occurred in summer 2015 prior to me developing full on ME/CFS but I can't be certain. There were other 'off' feelings and I remember checking myself for diabetes of all things ( I was cycling and weightlifting a lot ), I also felt strangely ill one evening after eating a really sugary chocolate packed cereal called Krave.

In September 2015 I developed ME/CFS overnight following a viral infection that made me throw up, made me feel very weak and fevered, gave me temporary labryinthitis ( off balance all the time ), this occured a few days after I rushed back home on a bike trip from oxford, it was getting dark and I had no light and I really pushed myself to go faster than I normally would. Soon I could only cycle 20 miles rather and 60 and exercise didn't feel euphoric anymore, the number of miles dropped and I got heavy PEM each time I tried it . I could still walk for miles around town though and the next spring I made my wooden building bigger, quite a big construction project. My outstanding mental health issues effectively stopped when I developed ME/CFS.

In 2016 I steadily got worse for no discernible reason, and became very severe, having issues with any form of stimulation, light, food, I couldn't really watch TV much or use a computer, I was lucky and escaped though. I avoided gluten and milk and slowly recovered and was able to eat whatever I wanted to before long, my CFS became moderate and stayed that way for years after, with occasional 'crashes' where I moved very slowly and had to do much more rest, feeling mentally different. I got very used to my ME/CFS symptoms, the PEM I would frequently get, the brain fog and short term memory problems, the various phases of different sensations and what it meant, I got really good at pacing, nothing really surprised me too much and I was fairly functional as a result, yes it took me longer to do things than other people, I lived in a slow way but there was nothing I could do and I got used to it.

I had chemical intolerance but they were mild and predictable. The only strange thing was in late 2018 when it rained a lot , I started to get sore throats in my wooden building, there was water ingress and mold growth on the carpet edges, I became increasingly intolerant to the building and after a month or 2 I couldn't continue using it in the same way. I became hyperreactive to this building and staying there for hours with doors open would make me feel more 'rough' for days.

As I wrote in my forum introduction post, after living in a different environment for half a year then returning home, I had stomach gas and subtle cognitive decline issues, then a year later started to develop symptoms most closely matching 'CIRS'. Weak wrists, slow healing, bruises, dehydration often during PEM, weird neurological issues, pains, sensations, later on MCS, food sensitivities, mold sensitivity. By now It feels like a different disease entirely than my old CFS, but initially when these symptoms appeared, it didn't. The onset of some of these new symptoms correlated with episodes where I became hypersensitive to new rooms almost overnight. My theories - mold illness / sick building syndrome, or bacterial dysbiosis / leaky gut.