A CFS crash that made me wonder how do we do this

So I have been ok for a few months. The only issue I had was bones popping out of place WAY to often, Since then I decided to lower the midodrine since I was doing better and that did the trick.

But I have not have a crash or the regular CFS fatigue for about a few months.
Then today I felt it. That tiredness and then the wave of this substance that invades my brain and wipes me out unconscious.

I freaked out, all I thought Holly shit how did I did this for whole days / months / years at the time. I cannot go there again, there is no way I can make it through another relapse.

I know compared with much, is a good problem to have but the feeling of CFS is so overwhelming that I had forgotten or I don't even know how to put it, I DONT MISS IT. for sure. But also reminded me of the fragility of my good periods. I have crash every year every fall, I hope this year will be different because to be honest I don't know if I can do this again.

Note: I still manage energy, and I follow a very strict livestyle to feel somewhat decent, but I have my other diseases (colitis is acting up) and POTs to deal with. But CFS mostly is doing great. I don't know if I attribute the IBS like thingy to CFS or Colitis, that is an issue still.


With ME/CFS, so many symptoms go with it. I'm so sorry to hear you were doing so well. Crashes are just so hard to predict! They're delayed so we think we're ok....than crash. I have several other issues that are neurologic. Manny lesions in my brain. I have IBS, Brain fog, I don't think I have colitis thank goodness.
Please hang in there, you know what to do now and so you can get better with rest. It's hard.....really hard. I get it. PR has good people just like us and good information.
Don't give up hope...
The 3rd paragraph is so me. Theres no way I thought I could go back. I'm still here, so I guess I survived the pit of shit fall. Im hoping my body remembers again when I had 80% of my health. Damn, that was a bit over a year ago.

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