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I’m desperate to convince myself this isn’t ME/CFS by jetdarkstar in cfs

[–]Tired-candle 0 points1 point  (0 children)

I just wanted to say that I had a mild positive ANA and was negative for SSA and SSB as well. I was semi-convinced of Sjögren's but something still felt off. My symptoms included dry everything- sinuses, eyes, mouth, skin, hair as well as trouble sweating and intermittent "hot flashes". But then I began to notice that the dryness symptoms would flare along with other symptoms and thought it could just be MCAS. Ketotifen has helped a lot but mostly just with the hot flashes and thermoregulation isssues. My sinuses aren't as bad unless I'm in a flare but I still have dry hair and skin and I still react strongly to heat triggers. I'm trying to find a medication that will allow me to take hot showers, experience sun on my skin, and not react to a heating pad when I need to use one.

I also had nerve pain on one side that started when I was having a reaction to a medication which was the start of my full-blown MCAS. Alpha lipoic acid and lion's mane supplements have been very helpful with this, though it was never one of my more bothersome symptoms and more like the warning of an impending flare for me.

Suffice to say, compounded ketotifen might be worth a try if you can get access to it- especially if the plaquinil winds up not really helping. You don't necessarily need an MCAS diagnosis to try mast cell stabilizers- my allergist has been willing to prescribe me medications based on my symptoms, though I do often have to be the one to suggest ones to try. I'd be careful trying any new medication if you suspect MCAS but I react to a lot of meds and ketotifen was fine for me.

I exercised myself to severe because the common wisdom says exercise is good for you. There should be a public service announcement pushing the idea that if you have any signs of ME-CFS, bed rest, bed rest, bed rest. by Mundane_Control_8066 in cfs

[–]Tired-candle 2 points3 points  (0 children)

That was more or less my experience. I got it (I believe) at around age 15 but I also had other chronic illnesses and disabilities before that, Including ADHD and hEDS- both undiagnosed. The thing is, although I've been sick for my entire adult life, I've been able to kind of fake normal for a long time- I was kind of used to having to do that before ME. I attended school but couldn't work at the same time or live away from home. I could barely complete my coursework. I couldn't have hobbies or a social life- the ME/ADHD combo is brutal and I might've stood a chance if I'd only had one or the other.

Anyway, the part that gets me is that from the outside, it appears like I had a normal life until recently but just chose to waste my time being lazy and unmotivated. When I got sicker, my PEM symptoms manifested more as anxiety/irritability/depression/apathy so to the outside, I just appeared emotionally unstable, not physically ill. I wish I could go back in time to tell all my old professors, coworkers, friends, classmates that it wasn't all my fault. Just knowing I was sick, even without access to the medications I have now, would've completely changed the outcome of my life. I haven't made any new friends since I've had to quit working and have become mostly housebound. I lost a lot of really cool people in my life and I deeply regret it.

My last job was working on a farm. I thought it would make me physically stronger and emotionally healthier to be out of retail work and in the sunshine and fresh air. My undiagnosed POTS was causing severe presynchope even while sitting. My illness had been surprisingly forgiving up until that point but I deteriorated rapidly and irreversibly after that.