Always Tired

Hi everyone!

Are any of you experiencing chronic tiredness? I am able to sleep well through the night (getting up around 2-3 times, but quickly falling back asleep). I am very fortunate that my EM hasn't been flaring too much at night lately and keeping me up at night. Even with being able to sleep well, I never seem to feel well. I'm always tired and feel like I could take a nap all the time!

I tested negative for primary EM, but my blood work looks good so far, so that should not be causing excessive exhaustion like I am experiencing.

I recently saw a sleep doctor and he is going to have me take a sleep study, but I thought I would check and see if any of you are experiencing symptoms like this.

Stay cool!


I am always feel tired. Some days worse than others. Besides erythromelalgia I have Epstien Barr Virus, which can make one feel awful and very tired. I recently have been wondering if erythromelalgia makes one feel weak/tired. I wake often throughout the night, most times I too fall right back to sleep. Many times my mouth and throat are so dry I get up and drink 2+ glasses of water before going back to bed.

Thank you for all of the comments! I am in my mid twenties, so I can really relate to not feeling like I "should" at my age. All I want to do is sleep most days. I'm sorry that most of you are unable to sleep at all. I can only imagine how exhausting that must be.

I will let everyone know what I find out!

Hello Mary.
I am exhausted all of the time too. As I was telling Tizzy in her post I’m not sure if it is part of the condition , a secondary condition ( undiagnosed possibly) or just from suffering so much pain on a regular basis.

HI folks.

Chronic pain is generally associated with low serotonin levels. And low serotonin is related to depression and mood disorders. So, what you may be experiencing is physical tiredness from dealing with pain and sleep disturbance as well as all of the emotional upheaval that comes with having chronic pain and the worries associated with that (e.g., will I be able to handle this pain, will it get worse, what will happen to me in the future, will I be fully disabled?).

Even though you go back to sleep quickly after being awakened several times in the night, your body may not be able to get back to deep sleep that is restorative and is required for cleaning out toxins from the body and brain.

Some medications also cause tiredness in larger doses but not at all in micro doses. Lyrica can relieve low level depression as well as improve sleep for some EM sufferers. Cymbalta can also help with mood as well as help EM pain, but again, in lower doses so that it doesn't cause drowsiness.


Hi Mary,

I also always feel tired and sometimes exhausted without doing exercise or anything. I have never fallen asleep within an hour of going to bed since my childhood, but this time it is different. I started to wake up in the night in order to relieve my flushing-flaring face. My sleep quality is very poor. Even a low voice wakes me up. I developed sensitivity against loudness.

Another thing is temperature. Since I choose to live in cool enviroment (17-19 Celsius) to calm down my face and upper part of body, I frequently start shivering. That, too, gives me fatigue. I feel muscle pain. There could be a corelation between them, as well as not being able to sports.

Hi Veerla,

I couldn't agree more that too much sleep can also cause exhaustion. I just can't seem to find the right balance yet. I honestly can't remember the last time I felt awake and alert and not tired.

I haven't been taking melatonin, but the information from Dragica about serotonin levels was very valuable. Thank you for sharing! I will have to talk to my doctor about trying Cymbalta or a different anti-depressant.

I agree we should all continue to keep the conversation going about what we have found helps us. I will be sharing information on how my sleep study goes (in late December). I doubt they will find much, but you never know.

And yes, my user name is based off of Alicia Key's song. I try to keep my sense of humor (as much as possible) with this disease!

Have a great day!


Veerla said:

Hi all,

I think having too much sleep, or not enough sleep is both not healthy and mostly results in being more tired. I did find some relief by using Melatonin (over the counter meds), which helps me sleep more deeply and I feel more fresh when I wake up (and establishes a more healthy bio-rhythm). So maybe something for others? I am really enthusiastic about I, because I tried many other things for sleeping: sleeping pills, marijuana, marijuana oil, meditation, trying to get some rhythm by going to bed every night at the same time etc. All didn’t help enough, or made me too drowsy. But, before taking melatonin always consult your dr.!

Cymbalta had an extreme effect on me: I wasn’t capable of feeling. I felt really blank, not capable of love or joy. I only realised this after taking it for months. Now, I am taking Lyrica which helps me better. What I want to say is that every medication has a different effect on every individual. So if the first one doesn’t help, find another one until you realise that a specific medication is indeed helping you. Most anti-depressants both effect nerve pain and mood swings/ depression. So keep trying, and try to be reflective about how you are really feeling. Because when I was on Cymbalta I realised it far too late, and messed up some stuff. Only to realise later that it was the Cymbalta that caused my moods.

Anyways, I think we should be communicating about what helps everybody to fall asleep. There are quite some options, and maybe we can learn from each other. For instance, watching a series on my laptop when I go to bed really helps me. Because when I don’t have some sort of distraction I experience the pain extensively and completely which results in being awake for hours. So watching a series with head phones create a nice bubble and a distraction. Maybe listening to an audio-book, or music can help you too?

@ Mary a.k.a thisgirlisonfire (is that nickname a reference to the song? Really creative, albeit awful knowing what you go through). Maybe melatonin can help you too? Creating a more normal sleeping pattern which may help in not feeling like sleeping all the time. Or have you already found something that helps?

Have a nice Sunday everybody.



Ps: didn’t know about serotonin levels so thanks for the info. Quite helpful.

Hi everyone!

I'm sorry it has taken me so long to give you an update. The sleep study showed that I actually have no sleep disorder and that I am actually a great sleeper! That isn't very helpful though, since I am still tired all the time.

After a few more appointments with my doctor, it seems that I may have fibromyalgia. I have been having some aches and pains in tender spots, so I may be in the early stages. This could also explain why I am so tired all the time.

I hope all of you are doing well and not having many flares!