So. I am stopping Rapamycin because it has not helped my quality of life. In fact it seems to be worsening it at least in terms of energy/ability.
It helps with one type of pain but that doesn't matter if I keep crashing so hard I can't even feed myself.
I kept going with the medicine hoping the extra fatigue and crashes were a temporary side effect. This is/was the only pain relief I get.
In the 7 weeks I've been on the medicine there have been 8 full days where I do not have the energy to eat. These are not necessarily consecutive days. I did not count the half days where I could eat one meal but not two others.
I have also had several major crashes and before starting the medicine I was trending the opposite way and getting less crashes.
If I get any worse I will be 100% bedbound and unable to bathe myself. That is the only thing I can do on my own right now and it costs me the entire day's worth of energy.
The subset of people with similar conditions as me that take rapamycin and respond well to it report the opposite. This just isn't the treatment for me.
I also used up the last bit of energy I had trying to try one last time to get a primary care doctor. This was my last hope.That was a huge waste of time. For some reason the past few years doctors offices will not give any information unless you fully register with them ,give health insurance info and such. This kind of cognitive activity really drains me and it's always ended up not being worth even trying.
I need a break. These crashes can become permanent baseline worsening events .I don't know if I can run this account anymore as I am too sick to care for myself. This could be temporary or it could be permanent. I am trending downward fast.
I should be able to continue the sbi giveaway on my main account as that is just cut/paste and my husband can help with it if need be.
I do not have the cognitive function or energy to say much more on this.
Bells functionality score: 0
Pain scale 8 I get zero treatment for my pain so that's awesome right now. No the ER will not help.
Please do not comment and tell me to hang in there or stay positive. That will only hurt me right now. If you have the urge to do so please do not comment.I mean no offense by this.
I don't know what else to say