Drug info

[Aloysia]

Hi,

I'm wondering if anyone has experience (good or bad) with taking any if the following for Chronic Fatigue Syndrome:

- Methylphenidate

- Modafil

- Low dose TCA (Amitriptyline 10 mg)

- Trazodone

- Mirtazapine

- Ativan

- Gabapentin

Thank you!!

Take care,

Heather

[T1ana]

Hi, I took gabapentin for my back (arthritic lower lumbar region, general joint pains etc) and mirtazapine for similar and depression. You're supposed to keep increasing the gabapentin til it starts to work but nothing was happening and I felt very uncomfortable with how many so I sought an alternative. I can't say either actually made much difference at the time - I was in a very bad place 2014-15 - overworked, bullied at work, working 72 hr week and couldn't sleep - both helped make me feel very weary all the time which wasn't helpful! when I was actually able to fit sleep in I was sleeping so that obviously worked! I actually od'd on amitriptyline (deliberately) because I wanted to sleep and never wake up. Be careful with dosage - gave me arrhythmia which is what actually saved my life cos I woke and emergency services were called in. And that breakdown/burnout came after so I left that job and didn't/ couldn't work for several months which I now know was a CFS boom/bust episode (I had already had two others). This predated my subsequent CFS/hyper mobile joint syndrome diagnosis by a couple of years in 2016/17. Incidentally I had a further breakdown in 2018. What had transformed my joint pain and depression and made cfs more manageable is HRT believe it or not (I am now 60...). All of my symptoms became so much more unmanageable as I hit 50 and peri-menopause. It's taken a while but kicked antidepressants into touch over a year ago and I am walking and doing yoga again. I still have my moments/bad days/odd weeks but generally in much less pain and able to manage the fatigue ok.

[peege]

Hi, good question 🤔. When my GP diagnosed CFS in 2016 after blood tests (I refused to believe it but that's another story) he prescribed Sertraline telling me that it was worth a try as others found it did help. I really don't know if it does help . I stopped taking it for a while but started again during the pandemic for a bit of support whilst isolated. Still taking it on the off-chance it works 🙄

[ceramo in reply to peege]

It is disappointing that there is no really effective drug protocol for many of us. The treatment for my then unknown illness from 1969 was benzodiazipines. They did work, but now over half a century later my dependence is a problem. I also now take ivabradine for orthostatic intolerance, it steadies the heart without lowering bloodpressure. So many of us have bad reactions to this or that drug and even to some diet supplements. Basically I take loads of supplements to help me towards better functioning, and esp. adaptogens like ginseng or ashwagandha or rhodiola rosea. And I use devices to try to regulate my autonomic nervous system. Pacing is crucial and the app connected to my Garmin watch is really helpful - once I got more used to it. I do minimal yoga based on my practice of 40 yrs - when I can. I will be 80 this month.

[peege in reply to ceramo]

You've obviously done well to reach 80 with all that you've been though ceramo .I too take lots of supplements particularly Vitamin B12 and Ubiquinol for the CFS plus loads for my immune system to help avoid chest infections to with I'm prone (asthma & small airways disease). I did pilates for years but gave up a year ago & really with i hadn't 🙄. Pacing is so hard particularly with little grandchildren (who's parents don't really get it).

[AnnB63]

Hi,

I have CFS, anxiety disorder and ADHD. I have recently been prescribed Methylphenidate for ADHD and during a period of titration have increased from 10mg to 60mg daily. Interestingly, I have noticed that my CFS and anxiety symptoms have lessened, not hugely but noticably so.

Ann.