Use of antidepressants for ME/CFS?

I've been on sertraline for about a month, and recently on venlafaxine for 5 weeks. Not only they didn't help but I was feeling really bad on them. Venlafaxine was much worse.

 

I know of this study which shows that neuropathic pain improves with TCAs but not SSRIs.

I suspect this is significant as to pharmacological treatment of ME/CFS symptoms.

 

During my "try anything and everything"phase in the 1990s, I tried several tricyclics and SSRIs for sleep and pain. The tricyclics helped with sleep but left me permanently hung over and the SSRIs didn't have any effect on anything. One bright spark told me I suffered from atypical depression - without the symptom of depression!!

Being super sensitive to many drugs, I was unable to get past extremely low doses of both types, except for Zoloft which was like eating Tic Tacs - no effect whatsoever.

In the past twenty years I've never mentioned ME/CFS to any doctors but a few years ago I asked for Zoloft to help with insomnia when I was dealing with my parents illnesses and deaths. Again no effect, so I was prescribed Citalopram instead. It dulled my senses so much I was forced to stop after a month or so because I had to play a few simple violin pieces for a concert and was totally incapable of any form of emotional feeling. It was the most unpleasant sensation of being creatively dead and not being able to tap into any emotion at all.

I would never take tricyclics now (or more than the occasional use of any of the old fashioned antihistamines and a whole host of other drugs) because of their anticholinergic effects and the association with dementia in the over 65s.

 

I tried Prozac and citalopram (mainly for 'energy' rather than mood).

Prozac (a tiny dose of 4mg) gave me energy for the first day but rapidly increased my fatigue on the following days. Serotonergic drugs seem to increase my sleepiness, rather than the fatigue I normally feel.

Citalopram did nothing at first. Then they upped my dose and it worked for a few days, but afterwards it made me manic and I had strong, intrusive suicidal impulses which I'd never had before. I had to stop.

Amitriptyline currently works for my sleep and pain. However, I can't shift beyond 25mg on it, even though the pain relief is slightly worse than it was when I first started. 50mg leaves me feeling drugged the next day, even if I take it earlier in the evening.

 

It's worth pointing out that those who were taking tricyclics might have been at higher risk of dementia anyway (e.g., they were already showing signs of neurological or psychiatric impairment in the first place, hence why they were prescribed the drug). We can't necessarily infer causation from the link.

 

I was tried on Prozac some years ago. Mood wise it helped even things out but it seemed to disturb my sleep even more so I came back off them and have not tried anything else since.

 

I have amitriptyline on hand to help with sleep and pain. I use it a few times a month, and not more than twice in a row. I use it to 'catch up' on my sleep when the insommnia is really getting to me, and for when the pain is worse than usual. I take 5mg which knocks me out for about 12 hours and leaves me groggy for several more. I know it's far from ideal but I don't really want to go back to the doctors and I don't want to be using something every night if I can avoid it.

I took citalopram for several months, don't remember a lot about it now except that it helped me through a stressful time of high anxiety. I don't remember the dose. On it I felt like I was in a bubble, kind of removed from everything. On balance they were helpful but I was very happy to stop when ready. I came off slowly by reducing in approximately 10% stages but can't remember how long it took. Mild side effects coming off of insommnia and nausea, the worst week was when I stopped completely.

 

I was prescribed low dose trazodone for sleep and it works very well for me. I haven't needed for ME insomnia for years because my sleep is fairly decent.

It doesn't work as well for menopause type insomnia but I take it at times because it helps take the 'edge' off. Menopause is a wild thing to deal with.

In the early years of ME I was prescribed amitriptyline for sleep, but it did not work for me.

 

This is an interesting subject. I think the term "antidepressant" for these drugs can be a bit misleading because they are also prescribed for sleep- and pain problems. They have an effect on neurotransmitters with many functions and complexities in the human brain.

That being said, I do not think this is useful, because drugs can always have side-effects.

There was a discussion about this in the comments on the NICE draft scope. Hope 4 ME Fibro Northern Ireland commented:

“It has come to our attention that patients who are NOT feeling depressed are being asked to take anti-depressants because of a supposed benefit for ME. We suspect the reasoning is rather different and that these drugs are being prescribed on the basis that it is assumed that depression is the cause of the ME symptoms. Patients are also reporting that they are having extreme difficulty coming off these drugs once they have started. We suggest that the anti-depressants should not therefore be offered to patients when they present with ME. Should secondary depression occur then a new assessment can take place.”​

NICE responded:

“Anti-depressants are commonly used in clinical practice for conditions other than mood. They are commonly used for treatment of neuropathic pain, to help with sleep, and to treat chronic headache. There is evidence for use of anti-depressants in these areas and their use in pain and headache are covered in other NICE guidelines. We agree that appropriate assessment of mental state should take place to inform prescribing.”
​

Don't think this was the correct response. The old CDC toolkit for example warned:

"Prescribing drugs for depression when a person is not depressed may make symptoms worse. Use caution in prescribing/taking antidepressants. Some antidepressants may make individual CFS symptoms worse or cause side effects."
​

 

I tried various SSRIs and also amitriptyline over the years. The aim was to reduce pain and improve sleep and the prescribed dose was very low. I really, really wanted them to work. None of them did.

To make matters worse all if them gave me a severe hangover effect that lasted all of the following day. They also prevented me from sleeping. 4 or 5 am there I would be wired but tired, like I'd been downing caffeine.

That should come with a warning - if you react like me then you'll be in some state after a few weeks, as I found my reaction to the same dose got dramatically worse over time. This is easily enough to tip someone into a prolonged crash.

Serious question here, if it's not going too far off topic, I'd love to know why the side effects kick in virtually straight away, yet it takes weeks to feel any benefit? Does anyone know why?

 

I’m on sertraline for mental health issues and while it helps a lot with that they have no effect on my ME/CFS.

 

The pharmacist told that trazodone (in low dose) is used mainly for sleep because it works so well, and not prescribed as much for depression anymore.

Oh, and trazodone is non addictive, you can discontinue when not needed.

 

I have not noticed any correlation between taking any of several types and my overall health. I was in remission with and without. I relapsed with and without. I slept badly with and without. I slept well with and without. My mood was unchanged. It doesn't really change anything significant, just adds to it, but like trying to raise some frequencies instead of dropping the bad ones, without any noticeable effect on the actual symptoms. Side-effects make it a hard pass.