Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
I suspect the pressure on ME/CFS patients to take these meds comes not from evidence (there isn't any) but rather conflation of ME/CFS with depression and fibromyalgia where SNRIs are sometimes helpful.
I don't consider myself suicidal and my personality is most often positive. Friends and family called me "bubbly". CFS was just unrelenting on my daily mood as I continued to lose my ability to function normally and personal freedoms.
There are many other effective and less dangerous ways to help the problems that these drugs are prescribed for, but mainstream docs aren't going to know what those are.
SSRIs (and most meds) cause me too many problems. My thyroid problems might be part of why.
However, diet and supplements have raised my serotonin and higher serotonin helps somewhat.
Just a FYI, SSRIs have failed to demonstrate efficacy in CFS for any symptoms (including depression) in double blind RCTs. In a word, they are currently not evidence based treatments for CFS patients.
After I had been on it for maybe two weeks I developed the world's worst ice-pick headache.
I felt terrible. Agitated, jangly, sicker. Whatever shifted in my body due to the ME/CFS, my reaction to medications was definitely one of them.
I have adrenal problems, last year I was actually given an appointment with an endocrinologist because my cortisol was so low. Unfortunately he didn't put me on anything good because I responded well to ACTH, even though a good response (mine was very good considering how low it was) can be indicative of problems with the body's ability to produce ACTH itself.
This happened until finally they lost patience with me and attempted what I can only describe as high pressure sales tactics, which concluded with the doctor spitefully telling me: "You will suffer for years if you don't take this".
Serotonin is Ray Peat's nemesis. I guess he is also + MAO-A like usI have no idea why my body despises serotonin so much!
Please cite! This is a study we would all like to have.
-J
How has diet raised your serotonin levels?
My ACTH is quite low, though I had a response to the ACTH stim test. The ITT test is the gold standard for determining if you have pituitary issues by measuring cortisol response to stressors. I actually did okay with this one in terms of how I felt. If you really want to know how screwed your HPA axis really is, this is the one to do.
Yeah... been there. I'm so sorry you had to go through that. It's pretty awful.
Part of me really wonders what that's all about, psychologically. (From their perspective.) Why is it so important you take an SSRI? I honestly don't understand.
An NRI helped me with OI due to low pulse pressure.
Strattera helped me immensely with OI. I have NMH, not POTS. But, by doc wisely told me to start it with 1/3 capsule every 3 days and to slowly increase. It took about 6 weeks to get up to the low dose of 10 mg twice a day that helped so much.Strattera is an NRI, not an SNRI. It's the one I found helpful as well, for OI. I don't have ADHD or anything similar.
Fascinating way to put it. It's the aggressiveness of it that floors me, though. Why push it that hard? If that were all I could offer a patient with CFS, I would offer it to them and then think I had discharged my duty if they said they didn't want it. Why the near-hysteria when you refuse? I encountered the exact same thing...I believe most doctors see people with CFS as being "radioactive".