Sleep

[Roch123]

I was diagnosed w fibromyalgia at the Mayo Clinic in Minnesota October 2022. I’ve been on low dose Cymbalta for almost 2 months which is causing severe insomnia. Any suggestions for anything that can help w sleep?

 

[JayCS]

Hi Roch, and welcome!
Personally, I wouldn't stay on any med that is causing insomnia, since sleep is such a core need.
So if you need to stay on the med route as a life-belt, I'd try switching to pregabalin/Lyrica, or amitriptyline/Elavil if you've been prescribed duloxetine/Cymbalta for depression issues.
First question would be if it's helping anything at all, in that case just weaning it off might be helpful.
When we start off on this journey, we often follow the docs too much, but self-assessment and self-advocating is what we need to learn. I was much better off when I got out of the hands of the docs. Mayo Clinic will know what they're doing much more than my docs of course, but no doc knows our body well.

For my sleep suggestions you might like to click here for my reply post on this thread:

So sick of having no energy. I'm new to the forum, just looking for support bc i feel so alone and feel like no one gets it

Hi! I'm new to the forum.. just looking for support. I'm so sick of having no energy, sleeping constantly and still no energy... on top of that, my pain is terrible everyday... worse some days. Any suggestions to help get me out of this funk would greatly be appreciated!!

www.fibromyalgiaforums.org

 

[sunkacola]

When we start off on this journey, we often follow the docs too much, but self-assessment and self-advocating is what we need to learn. I was much better off when I got out of the hands of the docs.

I agree with this.

@Roch123 : While doctors are very helpful with some things, and are necessary for others, they tend not to be as much help for fibromyalgia as with other things.
Many of us, myself included, have found that taking the reins on our own medical care is far more effective than following what the doctors say. this is because we all manifest this syndrome differently and what works for one, or for one thousand, won't necessarily work for any one individual. the best approach is to do your own experimentation to find out what works best for you.

Unless the cymbalta is extremely helpful to you in some other way, I advise going off it since it is causing insomnia because lack of sleep is one of the worst things for fibro people, guaranteed across the board to make things worse. Of course, go off it with your doctor's supervision and do it gradually. I suggest you think about not going immediately onto another medication to replace it, but instead do some exploration yourself to see if there are non-medication things you can do for yourself that will help. Here is a post all about how to do that:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[cookiebaker]

completely agree with both Jay and sunkacola.

Unwanted side effects are something that should seriously be taken into consideration when taking medications - and insomnia is most definitely an unwanted side effect.
Trying to fix the insomnia by taking something else will just lead to more problems and no one wants that.

Talk to your doc about coming off the Cymbalta - do NOT just stop taking it - you could cause some serious withdrawal issues by doing that... It is always best to discuss medication changes with your doc, and how best to go about making those changes.

 

[Roch123]

Thank you all for ur helpful advice!

 

[johnsalmon]

When we start off on this journey, we often follow the docs too much, but self-assessment and self-advocating is what we need to learn. I was much better off when I got out of the hands of the docs. Mayo Clinic will know what they're doing much more than my docs of course, but no doc knows our body well.

doctors must be different over there I could n ot survive with out the Doctor True not all doctors are good but if you are not happy with the Doctor get a different one - I changed after the Doctor seemed lost of what to do and after a bit of research found a young doctor who changed my scripts and set out to find the best medication for the pain - I ended up with Lyrica after trying a number of others, which has a side effect of fluid retention which I take medication for so we not only treat the main problem but any side effects - if you have severe insomnia after starting your medication then talk to the Doctors (I believe the Mayo clinic is highly respected) and you may get a change of medication or medication to over come the side effects. There is no easy fix sadly - its a period of trying different treatments till you find the best fit.

 

[cookiebaker]

doctors must be different over there

Sadly, most are far too happy to just write a prescription, and the actual health/well being of the patient be damned. Just my opinion here, and perhaps I am a bit too jaded to be impartial - my personal experience definitely colors my opinion.
Some are a bit better than others, but around here at least, most seem uninterested in actually helping you get better... if you get better, then you dont come in as often, and they dont get to make as much money off of you.
And while the Mayo clinic is definitely a few steps above most, they are not infallible.

Any med that causes insomnia is not one I would want to be on... fluid retention is one thing, insomnia is a far greater problem.
Our bodies need rest - it is as vital as food and air, even for a healthy person, more so for someone with fibro.
If a med is causing the insomnia, then it is probably better to get off that med and try something else, rather than try to compensate with yet another med (one that could potentially be addictive - yes, some sleeping meds ARE addictive)

Also worth noting re: fluid retention, not everyone can take meds for that - I am one of those. My blood pressure runs to the low side, and any kind of diuretic is not a good idea for me. I know this after discussing an edema problem with my primary - she did not want to put me on any kind of diuretic because of my low BP...
turns out that the edema was most likely a side effect of a med i was on... the issue has mostly resolved now, all on its own, since dropping that med. But here is the kicker... I requested to go off that med, my primary wanted to keep me on it, and really had no interest in trying to find out why i was having edema problems. No one at that clinic seemed interested in trying to figure that out.. Needless to say, I am in the processes of changing clinics & primary care providers.

 

[sunkacola]

My opinion is that it is better to not take any medication that is causing a negative side effect, rather than taking yet another drug to counteract the side effect.
That can lead to taking far more medications, and our bodies are not designed to function properly only due to the effects of drugs.
To begin that is to step onto what could be a very slippery path that only leads downhill.

While everyone is different, I would never advise a person to simply take another drug to counteract the effects of one drug.

 

[Badger]

I take Amitriptyline 10mg and Pregabalin 300mg which help towards sleep but these dosages are lower than in the past. 30mg Amil and 450mg Pregab left me too drowsy and foggy. Those side effects are better so far the current dosage. Sticking to a sleep routine were you are early to bed and early to rise will help the body to adjust. I've found a sleep hypnosis track or yoga nidra (body scan) make a difference although I'll have to stick to routine myself in future. It can be tricky with meds, if I forget to take Pregab in the evening I'm wide awake all night. Atb

 

[JayCS]

doctors must be different over there I could not survive with out the Doctor True not all doctors are good but if you are not happy with the Doctor get a different one - I changed after the Doctor seemed lost of what to do and after a bit of research found a young doctor who changed my scripts and set out to find the best medication for the pain - I ended up with Lyrica after trying a number of others, which has a side effect of fluid retention which I take medication for so we not only treat the main problem but any side effects - if you have severe insomnia after starting your medication then talk to the Doctors (I believe the Mayo clinic is highly respected) and you may get a change of medication or medication to over come the side effects. There is no easy fix sadly - its a period of trying different treatments till you find the best fit.

Not sure if you're really answering me here, despite quoting me.
Docs on average will be different here in Germany:
for fibro less inclined to prescribe any meds - none of the pain/rheum clinics that I could go to deal in meds.
I'm pretty sure I could have got my orthopedist or my pain docs to prescribe some...
However "meds 'n me mutually disagree".
My side effects were much too severe or much (amitriptyline: 8) to be improved with other meds.
Probably due to my MCAS.
My MCAS allergist also recommends me to stay away from MCAS meds as well...
Like sunkacola I think meds cause many side effects we don't immediately realize and thus cannot be counteracted in time.

But it sounds as if you were offering advice to Roch123 rather than me.
Roch123: An aside to Rochester, as a Mayo location?