Use of antidepressants for/with ME/CFS?

Hutan

Hutan

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The online guidance to doctors that I am reviewing has the following section about the use of antidepressants as treatments for ME/CFS:

1. The use of antidepressants in CFS has not shown a significant benefit:2

· There can be similarities in symptoms between CFS, depression, and fibromyalgia. In some patients with overlapping symptoms, consider a trial of antidepressants.

Trial of antidepressants

· Local specialist opinion suggests there appears to be a subgroup of patients with chronic fatigue syndrome (CFS) who may respond to antidepressants even though they do not meet the criteria for a diagnosis of depression. An SSRI is an appropriate first-line agent.

· If an antidepressant is trialled, advise patients that an immediate response is not expected and can take several weeks.

· Antidepressants may themselves provoke or exacerbate fatigue and should be discontinued in patients who do not demonstrate symptom improvement within a reasonable time frame (e.g., 6 to 8 weeks).

· Tricyclic antidepressants may be useful in low doses for symptom control for pain and insomnia.​

The possibility of depression as a consequence of having a chronic disease and the possible need for counselling regardless of whether there is clinical depression or not are covered elsewhere in the document. So this part of the guidance doesn't need to cover the treatment of identifiable depression.

Has anyone found that anti-depressants have had a positive impact on their ME symptoms including pain and insomnia? If so, what cautions would you note about their use?

Are there any good studies relevant to this question?

Thanks!
 
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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.
 
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oldtimer said:
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.
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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 prescribed Prozac when I was miserable from having to give up work and the GP thought I was depressed. One dose gave me the most horrendous nausea and generally feeling ten times worse in every way so I gave up and never took a second dose.
Tried amitryptiline for sleep and pain a couple of times. Even with extremely low dose (less than 5 mg) I felt so sick and horrible it wasn't worth it and I gave up.
My daughter takes 20mg amitryptiline at night to help her sleep and with pain. She finds it helpful. She came off it for a couple of years to test what would happen, slept and felt worse, so went back on it.
 
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.
 
I have gradual onset so not exactly sure when ME started I was told by a specialist at least 10 years ago. I was diagnosed with CFS 3 years so. Before that I had a minor depression diagnosis and had been on Prozac since 14 years ago. Prozac neither prevented me getting ME or improved it. I was taking it during gradual onset worsening. I stopped taking Prozac 2 years ago it has not made any noticeable difference to ME.

I am not a fan of Ami/nortryptiline as the strong sedative effect even on 10mg was not worth it and the benefit for insomnia reduced after 18months. and for someone already overweight the increased weight gain was very unhelpful pushing me to my highest ever weight. ETA given I am overweight and on two hypertension meds and was already taking Prozac I am not sure i should have been prescribed Amitryptiline at all I think there is some info on ME Association saying people on SSRIs shouldn’t be taking tricyclics. Will try to find a link.
 
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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.
Hutan said:
Local specialist opinion suggests there appears to be a subgroup of patients with chronic fatigue syndrome (CFS) who may respond to antidepressants even though they do not meet the criteria for a diagnosis of depression.
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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.”
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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 think the dose of amitriptiline and other tricyclics used for pain is much lower than the dose used for antidepressant effects. I have a couple of friends who do not have ME who have been prescribed low dose amitryptiline for pain - in one case nerve pain in the neck and in the other in the hip before she had a hip operation. They found it helped them sleep better by reducing the pain when they took it at night.
 
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.

Hutan said:
· If an antidepressant is trialled, advise patients that an immediate response is not expected and can take several weeks.
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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?
 
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.
 
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