So I’ve had ME/CFS and POTS for about 5 years. I spent 2,5 years in bed, was very severe but for the past 2 years I’ve substantially improved to about 50-60% activity level. I was really enjoying my life with the small things I was able to do, even though I’m still mostly housebound, and just a few days ago I’ve crashed very hard without a clear reason (such as overexertion), and I’m pretty worried that I’m going back all the way to where I was.
The reason why I think it could be MCAS is the following. I’ve had quite bad skin issues, like rashes and eczema, since getting ME/CFS so my doctor suggested to take Nalcrom, which is cromoglicic acid. I had taken it a few times before but it never did anything so we opted for a pretty high dose (4x 200mg per day). I took it for a month or so, during which my skin symptoms mostly went away. On 5 January me and my doctor decided that I quit with Nalcrom to see if the skin issues come back, so that we can see if it was working.
I quit on 5 January and the skin issues came back, albeit mildly. However, about a week later I also started to become more lightheaded, orthostatic intolerance getting worse, etc. Since a few days ago I completely crashed, my entire nervous system is out of whack, I am very lightheaded, on the verge of fainting all the time, super dizzy, etc. It feels like I have very low BP but our BP taker is broken so haven’t been able to measure it. Also I have other MCAS issues like trouble breathing and a very bad headache.
Now my question is: is the fact that I stopped with the Nalcrom and now experience these symptoms a sign that I’ve had MCAS? To me it does feel like it, but the only weird thing is that before starting to take Nalcrom things were all normal. So my theory would be that I’ve had MCAS for a long time, and it’s a cause of my OI, but over the years my body somehow found a way to regulate it. Then I took the medicine and it took that regulation function over -> then I stopped the medicine and now my body has to deal with it again. Is that a plausible theory?
The reason why I think it could be MCAS is the following. I’ve had quite bad skin issues, like rashes and eczema, since getting ME/CFS so my doctor suggested to take Nalcrom, which is cromoglicic acid. I had taken it a few times before but it never did anything so we opted for a pretty high dose (4x 200mg per day). I took it for a month or so, during which my skin symptoms mostly went away. On 5 January me and my doctor decided that I quit with Nalcrom to see if the skin issues come back, so that we can see if it was working.
I quit on 5 January and the skin issues came back, albeit mildly. However, about a week later I also started to become more lightheaded, orthostatic intolerance getting worse, etc. Since a few days ago I completely crashed, my entire nervous system is out of whack, I am very lightheaded, on the verge of fainting all the time, super dizzy, etc. It feels like I have very low BP but our BP taker is broken so haven’t been able to measure it. Also I have other MCAS issues like trouble breathing and a very bad headache.
Now my question is: is the fact that I stopped with the Nalcrom and now experience these symptoms a sign that I’ve had MCAS? To me it does feel like it, but the only weird thing is that before starting to take Nalcrom things were all normal. So my theory would be that I’ve had MCAS for a long time, and it’s a cause of my OI, but over the years my body somehow found a way to regulate it. Then I took the medicine and it took that regulation function over -> then I stopped the medicine and now my body has to deal with it again. Is that a plausible theory?
