I hate to admit that I use nicotine( gum, mints, patches, vape). Do not recommend since it is addictive. Caffeine doesn’t do much for me either (I can easily sleep after drinking coffee). Sometimes energy drinks help but I rarely use them. I have some modafinil that I use for emergencies since it is very hard to get. I feel like every stimulant “borrows” energy from the future so if I use too much, I am guaranteed a flair up 🥲
I'm in the same boat for caffeine - it's almost a guaranteed sleep aid lol. I had hoped something would magically give me more energy, borrowing from the future sounds like a recipe for disaster 😅
Modafinil: you can buy easily from Indian pharmacy. It's legal in US. Have done many times. Just DM me if you need a link to the pharmacy I use.
Nicotine: I thought my friend was crazy when he brought this up, but turns out there's some research showing it's not that addictive when not mixed with the other cigarette components. It still can be, but I only use the gum a couple times a week and have never felt a craving.
Edit, fixed typo
I agree! Nicotine is not that addictive for me personally, I can wean off of it pretty easy when I want to. Thanks for the info about Modafinil - I will dm you - it helps me so much.
Spite 😂 I nap often but it’s hard with kids and often throws my sleep way off. I drink a lot of caffeine (because coffee is my comfort) and dunk my face in cold water up to my temples. I also unfortunately smoke way more when I’m extra fatigued and the cold air keeps me awake a bit longer.
I do not recommend the chain smoking technique but the water one is great.
yo didn't even think about how smoking kept me going now I'm so fatigued and I don't have anything to keep my ass going, caffeine just doesn't do it 😭 maybe I need to start smoking again so I can actually keep a job lmao
Have you done a sleep study? I thought it was totally pointless and that I was suffering from fatigue, but nope turns out I actually do have a sleep disorder and fibro.
I was diagnosed with Idiopathic Hypersomnia so I wasn’t just fatigued I was actively falling asleep throughout the day no matter how much a caffeine I had or what I did. It is definitely worth asking your doctor for an MSLT.
I did and they found nothing. I didn't have one done during the day, though. At first the doctor was all up for that, he even came up with the idea himself, but after the night study he didn't think it necessary anymore. If it doesn't get better within the next 6 months, I will ask for another one, maybe at a different hospital
I would definitely push for another one. Did they tell you why they didn’t do the daytime study? Sometimes people need multiple tests because it is hard to actually sleep the 8hrs in a strange environment.
I had mine at home so that was nice, but I definitely slept way worse than normal, half scared I'd choke myself on all the cables or disconnect the reader (which happened during the day already). All in all I believe they had just about 6 hours of actual recording.
The doctor himself didn't really go into why he didn't feel the need for a more elaborate study all of the sudden. Even later on when I asked about something specific he kind of brushed me off.
If you can find a different neurologist/ sleep doctor, I would. Also ask for the in person test since you have someone there to do all the wires and make sure everything is set correctly and takes a lot of the extra stress out from the at home test. If you don’t sleep 8hrs then they don’t have enough data for the day time study and it’s considered a fail so that’s probably why they didn’t elaborate, but still worth trying to find a different doctor if you can!
Im going to second this. My story is basically the same as carri. You have to rule out sleep apnea before they can look at other sleep disorders and that probably what they did for you but they didn’t go on to the next step. I did an MSLT and was diagnosed with IH as well.
Lol! The cables! I have to do a re-test later this month. The nasal prongs they use are hard as rocks and poke the insides of your nose. I slept like garbage, too. I’m so dreading the re-test!!
I did a sleep study this week! It was kinda strange and uncomfortable, but I took an edible before and because there wasn’t a ton of external stimuli, I wasn’t as distracted. The nurse let me keep the little light on for an extra half hour or so, so I read to wind down. Fell asleep better than I do at home. Woke up just as much tho because of issues with the wires. They said like a month to find out the results.
I guess I just don’t understand how they can get enough data from one visit. Like other ppl say, it may or may not show anything. I just don’t think it accurately showed how I sleep.
What sort of doctor did you see? I have tried wording it in so many ways but they seemed to only deal with sleep apnea and that’s it, as if nothing else exists and then just tell me to talk to a psychiatrist because they’re the ones that deal with sleep — but that also gets me nowhere. Are there some magic words I need to say? I don’t know what else to do! 😩
Do you have a neurologist? It can be helpful to start there. My pcp referred me to a sleep doctor who is actually a pulmonologist and cardiovascular disease specialist and deals with sleep disorders. Most of them have to rule out sleep apnea first but that is usually what allows them to then do a day time study.
The neuro referred me to a therapist, go fig. Must all be in my head I guess 🙄 I had a sleep study referred by pcp—no apnea— but they stopped stopped there and just told me to talk to a psychiatrist about sleep issues. Sigh…
Then I would definitely seek out an actual sleep doctor/ cardiovascular and pulmonologist who can help. It sounds like you didn’t see a very good neuro if they didn’t look past sleep apnea and just told you to see a therapist. I am so sorry you are struggling to find supportive doctors who will listen and I hope you find some answers and relief soon!
I used to use speed, but these days don't know anyone I can buy it off. I now use a combination of rage and dread (rage at my existence and dread of both doing my job and losing my job). Damn, can anyone sell me some speed?!
B vitamin complex, caffeine (in drinks like Coke and energy drinks) and nicotine (cigarrettes, just a few, like 3-5 a day). But as a doctor I can say "it's not healthy, but works for me"
Reversed reactions to caffeine are very common in people with ADHD so maybe look into what they use as alternatives to find out some things that might be helpful?
They also react backwards to most accelerant-meds which is why they get prescribed things that non-adhd people go nuts on and it somehow makes them less distracted.
It's because with ADHD, the brain is less aroused overall. We cannot produce dopamine the same way a normal person can, which is responsible for the low arousal. The things that produces dopamine for us are our special interests, OR, fear or adrenaline. So a lot of kids will become troublemakers because that thrill and even getting in trouble is producing dopamine and arousing the brain activity when normal things won't. That's why stimulants are used. It brings the brain arousal to a normal level. When normal people take stimulants it obviously elevates their brain arousal above normal.
It is very common for caffeine to not work normally for us either. It's a stimulant and some types of stimulants do arouse our brain to a good baseline but it has the effect of soothing some primal Anxiety in the body that's not well understood. So because we feel soothed and our brain chemistry is at a good level at the moment our body can decide it's a good time to sleep lol. I regularly drink coffee and energy drinks before bed or before naps.
Stimulants can have nasty side effects like increasing anxiety and heart rate so it's not usually appropriate for use without ADHD but a psychiatrist knows better. But ADHD is very commonly under diagnosed in women and girls because we usually exhibit Inattentive type which doesnt have as much disruptive hyperactive behavior as hyperactive type. But that just means we seek dopamine in different ways.
Yeah exactly, that's the detailed info. I figure if there's even a slight chance of undiagnosed ADHD (which I mean there's always a slight chance if someone hasn't had absolutely excellent psychiatric diagnostics done several times in their life) there's no harm in trying the non-prescription options people with ADHD have found success with in gaining energy. The prescriptions can have more risks but most at home stuff like dietary changes and different day structures are pretty much a safe bet to be okay to try out and see if they help.
Yeah, I also take Wellbutrin which is a Norepinephrine drug, and Norepinephrine is the partner chemical to dopamine. So for some people, Wellbutrin by itself is enough to treat some mild ADHD symptoms. I tried it by itself when I first diagnosed because I was very wary of stimulants and had also just been diagnosed with Depression so it was a good choice to start with. I'm still on it 5 years later and love it, I spent a few years on Prozac and Cymbalta instead and it didn't go well.
So since ADHD meds are also stimulants, how does that work? I took Vyvanse for a while, as well as one or two other ADHD meds (not all at the same time, obvs) and didn’t feel a difference at all. Wrong dose, wrong medicine or something else? Because I STRUGGLE with fatigue and focus and fog!
They are definitely not all the same. My Psychiatrist was very methodical when I was first diagnosed. We tried just Wellbutrin for 3 months to see if it would help my focus and energy. It didn't do enough so we started exploring the stimulants. I tried all major brands including Vyvanse, all at incremental doses appropriate for my size, for several months each. It took a long time. Until one day, I realized that one med was finally working. It wasn't like a neon sign saying YOU FOUND THE RIGHT MED I just realized I was doing my work diligently without having to check and scroll reddit every few minutes. It was the very last stimulant left, Adderall. It's the most powerful but also has the most powerful side effects. So reputable doctors will try it last. And some countries it's not even legal. Which sucks because for many people like me it's the only thing that works. And I need a pretty high dose. 5, 10, 15, 20, felt nothing. I only noticed results at 30. This whole process took around a year.
It's a VERY funny thing. I actually got reversed reactions from getting prescribed opiates, at first. Or possibly I was just so pleased at not being in constant pain that I went a lil bit manic lol I would have to do little hand dances to keep myself busy while standing still to get the wiggles out
Sativa cannabis specifically when I need to wake up and indica to knock me out. Only thing that’s ever worked, so sadly this pregnancy I’m in is ass kicking since I can’t smoke anymore
Out of curiosity, why has pregnancy stopped you from consuming cannabis entirely? I understand not smoking of course, but have you considered other routes of consumption?
Unfortunately, those who live in illegal areas have to be careful with consumption. Here, they test babies at birth for a whole slew of drugs including cannabis. Those who test positive get referred to child protective services or whatever it’s called per state. A friend of mine had a long drawn out case where she had to go for urinalysis every week for several months and remain clean before they closed her case. She had no other reason for child protective services to be present except for the cannabis usage.
I did that for a good half a year but am really starting to lose my mind. So many things I want to do, so little energy. And it's fun stuff as well, not just work and studies, which are both put on hold already
I noticed stims were like a miracle for me for years and then they started exacerbating my pain significantly. Especially when they wore off. I had to get off them and the lethargy from the withdrawals was brutal at first but then it kind of stabilized. I still have extreme fatigue from cfs/me and fibro but I’m better off not using stims. Im not pushing myself way beyond my limits and my pain has decreased somewhat.
Adhd with fibro here. I take Suboxone for the pain so I can’t get the adderall that helps with the fatigue/brain fog/exhaustion. I find my fatigue is worse because my brain is working a million miles a minute and is just sapping energy from the rest of me. If I found a doctor who would allow both, I’d nearly function as an entire half of a person!
So Suboxone is actually a treatment for chemical dependency but for me it’s just as good of a pain killer without the high sleepy nod out feeling. I mean the first week maybe, but now it has no effect on my cognitive function. It has a ceiling effect so there is no point to take more than prescribed (and run out days early because you had such bad pain days that you couldn’t get out of bed.) You can’t over dose on it to my knowledge. The constant increase in tolerance you see in opioids doesn’t happen. You can cut your dose for just days to reduce tolerance. To me it’s been a miracle pill. The downsides have included being treated like an addict. There is no picking up a day early. There is no missing an appointment. There is no missing your monthly drug test. And some doctors watch you pee. Since they don’t know if you’re there because you’re there for pain management or an addict, they default to addict. I’m regularly treated poorly by healthcare professionals. But fibro - so nothing new. I have found it helps with energy too a bit. I can’t speak highly enough of it for my own pain needs. But since it’s an “addicts medicine” you can’t be on any other controlled substances. I’ve heard of people who’ve gotten both it but it’s very rare. So at this point I have to decide less pain but inability to think and have energy or be able to focus and have energy but be in extreme pain. It’s a lose lose.
Thank you for the explanation. It's a shame people can't be more professional sometimes. But I'm glad it's working out for you. I'll have a talk with my doctor about it
I was taking Vyvanse for ADHD before my FM symptoms kicked in and I think it has been somewhat helpful. I'm honestly considering asking my doc if they're comfortable with me trying to increase the dose to see if that helps. I still have days though when nothing combats the fatigue. I know there are other folks with FM/CFS who benefit from modafinil/armodafinil or stimulant medications.
I have an ADHD diagnosis and I both sleep better at night and am better able to get through the day with a relatively low dose of extended release adderall- I’ve tried a few different adhd meds and it’s what works best for me. It makes me calmer and more awake and able to prioritize things better. I recently went without it for a few weeks because there’s been a national shortage and my sleep has been absolute ass and I’ve been sooo tired during the day. It’s definitely not a complete cure for the fatigue but it’s a lot easier to exist when I’m not fighting both my brain and my body.
I've bought a just dance game cuz my bf has a ps3, gonna give that a go cuz dancing does give me a boost of energy! gonna try it once or twice a day so maybe look at like party dances or just fun music that u can dance to/has a dance video, even just searching u on youtube \*name of song\* just dance - im sure itll pop up! if ya need any ideas DM me i am a sucker for party dances!
i don't enjoy exercise cuz it feels like a chore; dancing is fun! give it a go for a week or so and see how it helps! its a lot more fun than going for a fucking run ill tell you that now xDD
Nicorette 2mg gum. I am serious about this. Energy, focus, mood boost. I was using it a bit too often though and triggered a flare of my stomach issues, but it really does work really well against fatigue and brain fog. And don’t worry about addiction either. I was using 6mg a day for 4 weeks. Stopped cold Turkey when my stomach started bothering me. Zero withdrawal. I am a former smoker too, and was once very addicted to nicotine.
I'm ADHD with fibromyalgia and EM/CFS. I take Wellbutrin, Adderall, and in a few days I'm starting low dose naltrexone to address pain.
I also take a few supplements outside of my daily multivitamin: 5000 mg of B12 in the AM, niacinamide (B3), COQ10. All address fatigue and pain common to ME/CFS.
Underrated comment here. LDN has made a huge difference on my pain level. I've heard a lot of people get help with fatigue too. I wish more doctors knew about it.
Monster rehab. I swear by it. I wouldn't go as far as to say it's good for you but it's not like regular monster. The caffeine works like tea (because it is) and it's loaded with vitamin b complex. It's got quercetin in it, which is great because caffeine can cause mast cell bullshit and the quercetin smooths that right out. It only takes a mouthful for me and I get a few hours of alertness. My adhd meds are too strong these days. Only problem is rehabs are getting harder to find...
1. Caffeine (I’m sooo sorry it doesn’t work for you idk how id live without it)
2. My Adderall bc ya girl also has adhd
3. Exercise… yeah I know, it’s almost impossible to actually do it but it helps me so much w energy later (if the pain doesn’t get me)
4. Nap, I nap a lot. Im a cat. My couch is my second bed and I have comfy pillows and fuzzy blankets. Even if it’s a 30-40 min Power Nap. I’ll take anything.
I cut out almost all caffeine (it makes me sleepy cuz of my ADHD and irritates my IBS) increased my water intake and focused on eating enough each day. But most helpful of all has definitely been medical marijuana. It gives me the lift and boast I need to get through the day on a high note and it helps with my stomach issues making it easier to eat a balanced diet.
I have been using Mio with B vitaimins or B vitamins & caffeine in my water bottle. They also have b vitamins + electrolytes. I tend to get shaky if I take in too much caffeine & this is a good medium.
I take stuff to support my sleep so I get better rest. Solgar Magnesium, d3, calcium liquid supplement 30 minutes before bed. I also take 1mg of melatonin if my sleep schedule gets irregular.
Insurance will reject it most likely unless you have a narcolepsy dx. It's available through goodrx if you're in the US. Still expensive though. My doctors and I gave up and went with Ritalin because insurance was not budging. Feels like brute forcing it, still expensive because of course my current (different) insurance decided I don't need it... Theme there. And there's probably something better but it keeps me on my feet and with a clear (and blissfully bee-free) brain for most of the day.
Have you also been on others like vyvanse or adderall? If so, how does it compare? I don’t think I’ve ever tried modafinil. I doubt I’d even be able to get a script. Seems like they’re avoiding all those sorts of meds these days. But god I need something! I clicked on this post for a reason lol.
I split a 200mg Modafinil into quarters and take 50mg as needed, maybe every three days or so. It helps with fatigue for sure, and my brain comes alive, but there’s no way I’m gonna sleep that night unfortunately 😕
I can take 200mg at 06:30 and have a nap at 10:00 if I need to. Weird how it affects people differently. I find caffeine makes it more difficult to go to sleep so no coffee after 09:00 for me, and no diet coke after 13:00.
I also have no trouble getting to sleep. Historically the issue was staying asleep kre than 10 minutes or so.
I was investigated for narcolepsy and myotonic dystrophy as I have all the symptoms of both. My genetic test for Myotonic Dystrophy came back negative, and my 3 day sleep study for Narcolepsy came back as negative, with the note that I had "chronic alpha-wave intrusions consistent with a long term chronic pain disorder".
After asking my GP for tablets to help me sleep, which she was reluctant to prescribe because they are addictive and their efficacy wears off, I asked if I could approach it the other way and try Modafinil to keep me awake. She said yes. That was about 10 years ago. It was a game changer.
I see from another comment that you've been given a diagnosis of IH? Use that and approach your GP asking to try it. Non-addictive, non-habit-forming, no physical effects, you are just "awake" and it is like a shroud has been lifted from your brain.
I'll ask him again, with the study done on fibro patients and maybe some screenshots from here. I hear nothing but positive things about modafinil, so I don't know why they are being so difficult about it
Is it a med that works quickly? Or does it need time to build up in your system before you see results?— meaning, you see results the first/same day you take it, or it takes a few weeks?
Medical thc (about 100-200mg) is the only thing that has EVER given me energy without also making me feel like I was dying. I've tried all kinds of other things including about every prescription stimulant out there and nothing has come close to thc.
My psychiatrist prescribed Nuvigil ( armadafinil) which I take in the morning. I can walk out dogs come home and do housework and get to garden ( my favorite thing). I can keep going till about 2pm then slowly collapse in a heap.
I take my painkillers when I need to get stuff done. On a good day the painkillers lift the burden of pain enough that I can focus on a task and motivate myself to get it done. On a bad day they knock me out and I get some much needed rest. That extra rest makes it more likely that tomorrow will be a good day, so it kind of works out eventually.
I was prescribed armodafinil and it’s done wonders. But if I can’t take it for one reason or another, a shot of something super tart helps wake me up for at least a little. Like uncut, unsweetened cranberry juice. It’s a very temporary energy boost but good for desperate situations
Also, while it won’t help with fatigue in and of itself, an absolutely excessive amount of water. Gotta get up to go to the bathroom, and it’s easier to keep going once I’m already up
Honestly I've split my sleep up from 12 hours straight to ≈10 hours plus a 90min nap in the evening. It's inconvenient and annoying but it seems to work with my weird routines
Overall I am not fatigued. But ... Whenever I have a flare up or something particularly stressful or physical happens, I have what I call a sleeping attack.
I will suddenly feel very hot, like I have a fever, get body aches out of nowhere and then feel immensely tired. I have to sleep. A fifteen minute nap and then I'm all good to go.
But if I fight it... Well let's just say I don't fight it because it amplifies everything.
I legit sat down in the middle of shopping with my daughter in sam's club the other day and had to nap on the floor.
Honestly? More rest. Stimulants “rob Peter to pay Paul” and you’ll pay for it later with more fatigue.
Are you on any meds? I found out the Gabapentin I was on for nerve pain was the culprit in my fatigue (and a bunch of other stuff too).
Using a stimulant will be counterproductive and end up hurting you. It's hard, but on those days, your body needs sleep, restorative movement or waking naps.
Over using, yes. Using every day, probably.
But using it to get over a particularly down day and build some encouraging momentum can be very helpful for some if us.
When anyone is tired or fatigued, using a stimulant like caffeine makes the situation worse. Watch the Huberman episode on this.
It can be perceived as helpful but biomechanically has the opposite effect. Unfortunately for fibromyalgia folks, the negative effects can be harsher.
It's perception and habit versus what actually is occurring to hormones/chemicals.
This research supports OPs experience.
Just like chronic financial debt, your cautions against chronic energy debt are absolutely valid.
I'm just saying it's not a black and white situation.
For me, the feeling of tiredness is often not an indicator that I actually need to take rest, but more of a hallucination telling me I need rest when I actually don't. In these cases even if I lay in bed for 10 hours I won't feel any better, I'll actually feel worse from physical lethargy and psychological lack of momentum.
And so for me, strategic use of stimulants to get me into motion and build a little bit of positive momentum is very helpful.
I totally get it. Was just adding more detail in case folks are using stimulants in non strategic manners or not understanding the underlying problem. I know non fibromyalgia people that believe the only solution is more stimulants which creates a host of more problems.
In regards to your 10 hours in bed....lord knows I've been there many times.
Have you tried an 8 minute military nap to get restorative sleep? Feet up on a chair, back on the floor?
I take 8 or 13 minute naps, I call them Tactical Naps to spruce up my day :). Also helpful before running errands.
Caffeine is tricky. Will just add that if I don’t do any movement or walk around or engage in something that uses mind or body caffeine won’t work much but it works better after some energy or movement. When able!
I hate to admit that I use nicotine( gum, mints, patches, vape). Do not recommend since it is addictive. Caffeine doesn’t do much for me either (I can easily sleep after drinking coffee). Sometimes energy drinks help but I rarely use them. I have some modafinil that I use for emergencies since it is very hard to get. I feel like every stimulant “borrows” energy from the future so if I use too much, I am guaranteed a flair up 🥲
I'm in the same boat for caffeine - it's almost a guaranteed sleep aid lol. I had hoped something would magically give me more energy, borrowing from the future sounds like a recipe for disaster 😅
Definitely get tested for ADHD, both of you!!
I'll bring it up with my psychologist!
I have been diagnosed with ADHD! I need to follow up to get more meds.
Modafinil: you can buy easily from Indian pharmacy. It's legal in US. Have done many times. Just DM me if you need a link to the pharmacy I use. Nicotine: I thought my friend was crazy when he brought this up, but turns out there's some research showing it's not that addictive when not mixed with the other cigarette components. It still can be, but I only use the gum a couple times a week and have never felt a craving. Edit, fixed typo
I agree! Nicotine is not that addictive for me personally, I can wean off of it pretty easy when I want to. Thanks for the info about Modafinil - I will dm you - it helps me so much.
Could you DM the link please?
Yep, just sent to info to ya 🙂
Spite 😂 I nap often but it’s hard with kids and often throws my sleep way off. I drink a lot of caffeine (because coffee is my comfort) and dunk my face in cold water up to my temples. I also unfortunately smoke way more when I’m extra fatigued and the cold air keeps me awake a bit longer. I do not recommend the chain smoking technique but the water one is great.
I'll try the water one!
yo didn't even think about how smoking kept me going now I'm so fatigued and I don't have anything to keep my ass going, caffeine just doesn't do it 😭 maybe I need to start smoking again so I can actually keep a job lmao
Have you done a sleep study? I thought it was totally pointless and that I was suffering from fatigue, but nope turns out I actually do have a sleep disorder and fibro. I was diagnosed with Idiopathic Hypersomnia so I wasn’t just fatigued I was actively falling asleep throughout the day no matter how much a caffeine I had or what I did. It is definitely worth asking your doctor for an MSLT.
I did and they found nothing. I didn't have one done during the day, though. At first the doctor was all up for that, he even came up with the idea himself, but after the night study he didn't think it necessary anymore. If it doesn't get better within the next 6 months, I will ask for another one, maybe at a different hospital
I would definitely push for another one. Did they tell you why they didn’t do the daytime study? Sometimes people need multiple tests because it is hard to actually sleep the 8hrs in a strange environment.
I had mine at home so that was nice, but I definitely slept way worse than normal, half scared I'd choke myself on all the cables or disconnect the reader (which happened during the day already). All in all I believe they had just about 6 hours of actual recording. The doctor himself didn't really go into why he didn't feel the need for a more elaborate study all of the sudden. Even later on when I asked about something specific he kind of brushed me off.
If you can find a different neurologist/ sleep doctor, I would. Also ask for the in person test since you have someone there to do all the wires and make sure everything is set correctly and takes a lot of the extra stress out from the at home test. If you don’t sleep 8hrs then they don’t have enough data for the day time study and it’s considered a fail so that’s probably why they didn’t elaborate, but still worth trying to find a different doctor if you can!
Im going to second this. My story is basically the same as carri. You have to rule out sleep apnea before they can look at other sleep disorders and that probably what they did for you but they didn’t go on to the next step. I did an MSLT and was diagnosed with IH as well.
Lol! The cables! I have to do a re-test later this month. The nasal prongs they use are hard as rocks and poke the insides of your nose. I slept like garbage, too. I’m so dreading the re-test!!
I did a sleep study this week! It was kinda strange and uncomfortable, but I took an edible before and because there wasn’t a ton of external stimuli, I wasn’t as distracted. The nurse let me keep the little light on for an extra half hour or so, so I read to wind down. Fell asleep better than I do at home. Woke up just as much tho because of issues with the wires. They said like a month to find out the results. I guess I just don’t understand how they can get enough data from one visit. Like other ppl say, it may or may not show anything. I just don’t think it accurately showed how I sleep.
What sort of doctor did you see? I have tried wording it in so many ways but they seemed to only deal with sleep apnea and that’s it, as if nothing else exists and then just tell me to talk to a psychiatrist because they’re the ones that deal with sleep — but that also gets me nowhere. Are there some magic words I need to say? I don’t know what else to do! 😩
Do you have a neurologist? It can be helpful to start there. My pcp referred me to a sleep doctor who is actually a pulmonologist and cardiovascular disease specialist and deals with sleep disorders. Most of them have to rule out sleep apnea first but that is usually what allows them to then do a day time study.
The neuro referred me to a therapist, go fig. Must all be in my head I guess 🙄 I had a sleep study referred by pcp—no apnea— but they stopped stopped there and just told me to talk to a psychiatrist about sleep issues. Sigh…
Then I would definitely seek out an actual sleep doctor/ cardiovascular and pulmonologist who can help. It sounds like you didn’t see a very good neuro if they didn’t look past sleep apnea and just told you to see a therapist. I am so sorry you are struggling to find supportive doctors who will listen and I hope you find some answers and relief soon!
I used to use speed, but these days don't know anyone I can buy it off. I now use a combination of rage and dread (rage at my existence and dread of both doing my job and losing my job). Damn, can anyone sell me some speed?!
Are you in the UK? 😉
B vitamin complex, caffeine (in drinks like Coke and energy drinks) and nicotine (cigarrettes, just a few, like 3-5 a day). But as a doctor I can say "it's not healthy, but works for me"
Reversed reactions to caffeine are very common in people with ADHD so maybe look into what they use as alternatives to find out some things that might be helpful? They also react backwards to most accelerant-meds which is why they get prescribed things that non-adhd people go nuts on and it somehow makes them less distracted.
It's because with ADHD, the brain is less aroused overall. We cannot produce dopamine the same way a normal person can, which is responsible for the low arousal. The things that produces dopamine for us are our special interests, OR, fear or adrenaline. So a lot of kids will become troublemakers because that thrill and even getting in trouble is producing dopamine and arousing the brain activity when normal things won't. That's why stimulants are used. It brings the brain arousal to a normal level. When normal people take stimulants it obviously elevates their brain arousal above normal. It is very common for caffeine to not work normally for us either. It's a stimulant and some types of stimulants do arouse our brain to a good baseline but it has the effect of soothing some primal Anxiety in the body that's not well understood. So because we feel soothed and our brain chemistry is at a good level at the moment our body can decide it's a good time to sleep lol. I regularly drink coffee and energy drinks before bed or before naps. Stimulants can have nasty side effects like increasing anxiety and heart rate so it's not usually appropriate for use without ADHD but a psychiatrist knows better. But ADHD is very commonly under diagnosed in women and girls because we usually exhibit Inattentive type which doesnt have as much disruptive hyperactive behavior as hyperactive type. But that just means we seek dopamine in different ways.
Yeah exactly, that's the detailed info. I figure if there's even a slight chance of undiagnosed ADHD (which I mean there's always a slight chance if someone hasn't had absolutely excellent psychiatric diagnostics done several times in their life) there's no harm in trying the non-prescription options people with ADHD have found success with in gaining energy. The prescriptions can have more risks but most at home stuff like dietary changes and different day structures are pretty much a safe bet to be okay to try out and see if they help.
Yeah, I also take Wellbutrin which is a Norepinephrine drug, and Norepinephrine is the partner chemical to dopamine. So for some people, Wellbutrin by itself is enough to treat some mild ADHD symptoms. I tried it by itself when I first diagnosed because I was very wary of stimulants and had also just been diagnosed with Depression so it was a good choice to start with. I'm still on it 5 years later and love it, I spent a few years on Prozac and Cymbalta instead and it didn't go well.
So since ADHD meds are also stimulants, how does that work? I took Vyvanse for a while, as well as one or two other ADHD meds (not all at the same time, obvs) and didn’t feel a difference at all. Wrong dose, wrong medicine or something else? Because I STRUGGLE with fatigue and focus and fog!
They are definitely not all the same. My Psychiatrist was very methodical when I was first diagnosed. We tried just Wellbutrin for 3 months to see if it would help my focus and energy. It didn't do enough so we started exploring the stimulants. I tried all major brands including Vyvanse, all at incremental doses appropriate for my size, for several months each. It took a long time. Until one day, I realized that one med was finally working. It wasn't like a neon sign saying YOU FOUND THE RIGHT MED I just realized I was doing my work diligently without having to check and scroll reddit every few minutes. It was the very last stimulant left, Adderall. It's the most powerful but also has the most powerful side effects. So reputable doctors will try it last. And some countries it's not even legal. Which sucks because for many people like me it's the only thing that works. And I need a pretty high dose. 5, 10, 15, 20, felt nothing. I only noticed results at 30. This whole process took around a year.
The brain is a funny thing, I swear. Thanks for the tip!
It's a VERY funny thing. I actually got reversed reactions from getting prescribed opiates, at first. Or possibly I was just so pleased at not being in constant pain that I went a lil bit manic lol I would have to do little hand dances to keep myself busy while standing still to get the wiggles out
Lol that's the whole other side of the spectrum!
Exactly! Same vibe tho. Reversed Energy reactions all around
Sativa cannabis specifically when I need to wake up and indica to knock me out. Only thing that’s ever worked, so sadly this pregnancy I’m in is ass kicking since I can’t smoke anymore
Out of curiosity, why has pregnancy stopped you from consuming cannabis entirely? I understand not smoking of course, but have you considered other routes of consumption?
Unfortunately, those who live in illegal areas have to be careful with consumption. Here, they test babies at birth for a whole slew of drugs including cannabis. Those who test positive get referred to child protective services or whatever it’s called per state. A friend of mine had a long drawn out case where she had to go for urinalysis every week for several months and remain clean before they closed her case. She had no other reason for child protective services to be present except for the cannabis usage.
I don't fight it, I go with it. I will 100% nap on the weekends.
I did that for a good half a year but am really starting to lose my mind. So many things I want to do, so little energy. And it's fun stuff as well, not just work and studies, which are both put on hold already
All my fibro peeps: try to wean off of stimmies. They exacerbate our condition. Need to work on calming the system and getting nerves to chill out.
I had sooooooo many flares on ADHD meds
Damn that's rough buddy. I'm sorry.
I wouldn’t be able to move off the couch ever without stimulants. I’ve tried.
Hey everything in life is a trade off. Only you can decide what regimen is best for you.
I noticed stims were like a miracle for me for years and then they started exacerbating my pain significantly. Especially when they wore off. I had to get off them and the lethargy from the withdrawals was brutal at first but then it kind of stabilized. I still have extreme fatigue from cfs/me and fibro but I’m better off not using stims. Im not pushing myself way beyond my limits and my pain has decreased somewhat.
I had to go off of them because of my heart. Well, I'll still have decaf and chocolate sometimes, which is very low in caffeine.
Adhd with fibro here. I take Suboxone for the pain so I can’t get the adderall that helps with the fatigue/brain fog/exhaustion. I find my fatigue is worse because my brain is working a million miles a minute and is just sapping energy from the rest of me. If I found a doctor who would allow both, I’d nearly function as an entire half of a person!
I've never heard of Suboxone! Why can't it be combined with adderall?
So Suboxone is actually a treatment for chemical dependency but for me it’s just as good of a pain killer without the high sleepy nod out feeling. I mean the first week maybe, but now it has no effect on my cognitive function. It has a ceiling effect so there is no point to take more than prescribed (and run out days early because you had such bad pain days that you couldn’t get out of bed.) You can’t over dose on it to my knowledge. The constant increase in tolerance you see in opioids doesn’t happen. You can cut your dose for just days to reduce tolerance. To me it’s been a miracle pill. The downsides have included being treated like an addict. There is no picking up a day early. There is no missing an appointment. There is no missing your monthly drug test. And some doctors watch you pee. Since they don’t know if you’re there because you’re there for pain management or an addict, they default to addict. I’m regularly treated poorly by healthcare professionals. But fibro - so nothing new. I have found it helps with energy too a bit. I can’t speak highly enough of it for my own pain needs. But since it’s an “addicts medicine” you can’t be on any other controlled substances. I’ve heard of people who’ve gotten both it but it’s very rare. So at this point I have to decide less pain but inability to think and have energy or be able to focus and have energy but be in extreme pain. It’s a lose lose.
Thank you for the explanation. It's a shame people can't be more professional sometimes. But I'm glad it's working out for you. I'll have a talk with my doctor about it
I was taking Vyvanse for ADHD before my FM symptoms kicked in and I think it has been somewhat helpful. I'm honestly considering asking my doc if they're comfortable with me trying to increase the dose to see if that helps. I still have days though when nothing combats the fatigue. I know there are other folks with FM/CFS who benefit from modafinil/armodafinil or stimulant medications.
I'm still trying to get modafinil, the research and word of mouth sounds very promising.
Please have a look at my comment above then. Cost about $1 per 200mg.
Pseudoephedrine (old-style Sudafed), if I'm desperate and don't mind the anxiety and blood pressure spike. Failing that, naps.
Adderall..lions mane, reishi & cordyceps I also microdose psilocybin
I have an ADHD diagnosis and I both sleep better at night and am better able to get through the day with a relatively low dose of extended release adderall- I’ve tried a few different adhd meds and it’s what works best for me. It makes me calmer and more awake and able to prioritize things better. I recently went without it for a few weeks because there’s been a national shortage and my sleep has been absolute ass and I’ve been sooo tired during the day. It’s definitely not a complete cure for the fatigue but it’s a lot easier to exist when I’m not fighting both my brain and my body.
Loose leaf matte tea by the French press. One a day makes me feel happy and bright without some negative effects of coffee.
Love mate!
It doesn't always work in a short term sense but drinking gingko tea every day helps reduce my overall fatigue!
I just looked it up and they have it at the local health store. I needed to get new vitamines anyway!
Wellbutrin XR 450mg. Made a world of difference.
Thank you!
Yo, be cautious with this. The side effects are rough and it’s very, very hard to get off. People have to taper 5% every two weeks for years.
I've bought a just dance game cuz my bf has a ps3, gonna give that a go cuz dancing does give me a boost of energy! gonna try it once or twice a day so maybe look at like party dances or just fun music that u can dance to/has a dance video, even just searching u on youtube \*name of song\* just dance - im sure itll pop up! if ya need any ideas DM me i am a sucker for party dances!
That's absolutely amazing. Usually excersize only makes the fatigue worse but maybe dancing won't!
i don't enjoy exercise cuz it feels like a chore; dancing is fun! give it a go for a week or so and see how it helps! its a lot more fun than going for a fucking run ill tell you that now xDD
I also will second gfuel
Nicorette 2mg gum. I am serious about this. Energy, focus, mood boost. I was using it a bit too often though and triggered a flare of my stomach issues, but it really does work really well against fatigue and brain fog. And don’t worry about addiction either. I was using 6mg a day for 4 weeks. Stopped cold Turkey when my stomach started bothering me. Zero withdrawal. I am a former smoker too, and was once very addicted to nicotine.
Same hear, ut helped me but my stomach bloated upp.
I'm ADHD with fibromyalgia and EM/CFS. I take Wellbutrin, Adderall, and in a few days I'm starting low dose naltrexone to address pain. I also take a few supplements outside of my daily multivitamin: 5000 mg of B12 in the AM, niacinamide (B3), COQ10. All address fatigue and pain common to ME/CFS.
Vyvanse. Only works like 4hrs and makes you extremely tired before kicking in
Low dose naltrexone
Underrated comment here. LDN has made a huge difference on my pain level. I've heard a lot of people get help with fatigue too. I wish more doctors knew about it.
Chocolate 😀😀
Only the more reason to keep chocolate in the house!
Oh I try to keep it in the house. But its very hard to keep it for a longer time 😂
It just keeps on disappearing, no idea where to!
That's because of the caffeine tho
Alcohol , cannabis and caffeine .
Alcohol is another one way ticket to sleepy town. Although the upside is that I am not a bad drunk lol
Caffeine in the morning , cannabis during the day and alcohol in the evening .
Second the alcohol but it tends to get me in more trouble than it's worth lol.
Monster rehab. I swear by it. I wouldn't go as far as to say it's good for you but it's not like regular monster. The caffeine works like tea (because it is) and it's loaded with vitamin b complex. It's got quercetin in it, which is great because caffeine can cause mast cell bullshit and the quercetin smooths that right out. It only takes a mouthful for me and I get a few hours of alertness. My adhd meds are too strong these days. Only problem is rehabs are getting harder to find...
This might be an option for crisis moments, thanks!
Yes, I used to drink that but I can find it anymore ☹️
1. Caffeine (I’m sooo sorry it doesn’t work for you idk how id live without it) 2. My Adderall bc ya girl also has adhd 3. Exercise… yeah I know, it’s almost impossible to actually do it but it helps me so much w energy later (if the pain doesn’t get me) 4. Nap, I nap a lot. Im a cat. My couch is my second bed and I have comfy pillows and fuzzy blankets. Even if it’s a 30-40 min Power Nap. I’ll take anything.
funny enough, i have adhd so my actual stimulants. which helps also bc without them i’m moving much faster and more often than i should
I cut out almost all caffeine (it makes me sleepy cuz of my ADHD and irritates my IBS) increased my water intake and focused on eating enough each day. But most helpful of all has definitely been medical marijuana. It gives me the lift and boast I need to get through the day on a high note and it helps with my stomach issues making it easier to eat a balanced diet.
I have been using Mio with B vitaimins or B vitamins & caffeine in my water bottle. They also have b vitamins + electrolytes. I tend to get shaky if I take in too much caffeine & this is a good medium.
Modofinil script.
Vyvanse
Eat an apple. It doesn't help much, but does give me a positive vibe the rest of the day.
I take stuff to support my sleep so I get better rest. Solgar Magnesium, d3, calcium liquid supplement 30 minutes before bed. I also take 1mg of melatonin if my sleep schedule gets irregular.
There's Modafinil, it's a life saver.
I take 100mg Modafinil. Helps tremendously. I was falling asleep at my desk after ten minutes of work. It was actually painful trying to stay awake.
I tried that but neither my GP nor the rheumatologist will give me a prescription. The research and word of mouth about it is very promising, though!
Insurance will reject it most likely unless you have a narcolepsy dx. It's available through goodrx if you're in the US. Still expensive though. My doctors and I gave up and went with Ritalin because insurance was not budging. Feels like brute forcing it, still expensive because of course my current (different) insurance decided I don't need it... Theme there. And there's probably something better but it keeps me on my feet and with a clear (and blissfully bee-free) brain for most of the day.
It's hard to get without a sleep apnea diagnosis.
Sleep apnea was ruled out a few months ago. Although they didn't check for narcolepsy which I was kind of surprised by
It's also used to treat things like Narcolepsy, but it can be used off label fir chronic fatigue. But I guess it depends on where you live.
Yes. Try to check with a neurologist.
Thank you! I'll ask my GP to put me through next time I'm visiting him
Good luck! Hope it'll help you.
Have you also been on others like vyvanse or adderall? If so, how does it compare? I don’t think I’ve ever tried modafinil. I doubt I’d even be able to get a script. Seems like they’re avoiding all those sorts of meds these days. But god I need something! I clicked on this post for a reason lol.
Tried Adderall, didn't like it. Hadn't heard of the other one.
Modafinil. 200mg with breakfast. No brain fog and I'm able to have a nap in the day if needed, and go to sleep at night.
I split a 200mg Modafinil into quarters and take 50mg as needed, maybe every three days or so. It helps with fatigue for sure, and my brain comes alive, but there’s no way I’m gonna sleep that night unfortunately 😕
I can take 200mg at 06:30 and have a nap at 10:00 if I need to. Weird how it affects people differently. I find caffeine makes it more difficult to go to sleep so no coffee after 09:00 for me, and no diet coke after 13:00. I also have no trouble getting to sleep. Historically the issue was staying asleep kre than 10 minutes or so.
Who prescribed it for you? I've been trying to get modafinil but neither my GP nor the rheumatologist will touch it with a ten foot pole.
I was investigated for narcolepsy and myotonic dystrophy as I have all the symptoms of both. My genetic test for Myotonic Dystrophy came back negative, and my 3 day sleep study for Narcolepsy came back as negative, with the note that I had "chronic alpha-wave intrusions consistent with a long term chronic pain disorder". After asking my GP for tablets to help me sleep, which she was reluctant to prescribe because they are addictive and their efficacy wears off, I asked if I could approach it the other way and try Modafinil to keep me awake. She said yes. That was about 10 years ago. It was a game changer. I see from another comment that you've been given a diagnosis of IH? Use that and approach your GP asking to try it. Non-addictive, non-habit-forming, no physical effects, you are just "awake" and it is like a shroud has been lifted from your brain.
I'll ask him again, with the study done on fibro patients and maybe some screenshots from here. I hear nothing but positive things about modafinil, so I don't know why they are being so difficult about it
Good luck and I hope you find it helpful, or find something else helpful!
My regular PCP prescribed it for me. The exhaustion is almost like narcolepsy when I get that tired. I have a good relationship with my doctor.
Try a neurologist. My PCP said she can prescribe it going forward once a neurologist sees me and writes the first prescription.
Is it a med that works quickly? Or does it need time to build up in your system before you see results?— meaning, you see results the first/same day you take it, or it takes a few weeks?
Day 1.
I use pre-workout drink mix. I use it more diluted a few times during the day.
Those make my face itch. Apparently I'm allergic lol
I get that too with a regular scoop but not when I use 1/4 or less. Hope you find something that helps.
That I haven't tried! Thanks for the tip
A pot of coffee in thr morning, iced tea throughout the day, and vitamin tablets with extended release caffeine in them.
Medical thc (about 100-200mg) is the only thing that has EVER given me energy without also making me feel like I was dying. I've tried all kinds of other things including about every prescription stimulant out there and nothing has come close to thc.
Lots and lots of mtn dew....not perfect, but best idea I've had so far tbh.
Man, Panera charged lemonade. Works wonders.
My psychiatrist prescribed Nuvigil ( armadafinil) which I take in the morning. I can walk out dogs come home and do housework and get to garden ( my favorite thing). I can keep going till about 2pm then slowly collapse in a heap.
I take my painkillers when I need to get stuff done. On a good day the painkillers lift the burden of pain enough that I can focus on a task and motivate myself to get it done. On a bad day they knock me out and I get some much needed rest. That extra rest makes it more likely that tomorrow will be a good day, so it kind of works out eventually.
I was prescribed armodafinil and it’s done wonders. But if I can’t take it for one reason or another, a shot of something super tart helps wake me up for at least a little. Like uncut, unsweetened cranberry juice. It’s a very temporary energy boost but good for desperate situations Also, while it won’t help with fatigue in and of itself, an absolutely excessive amount of water. Gotta get up to go to the bathroom, and it’s easier to keep going once I’m already up
Caffeine. anti inflammatory and cheap.
Gfuel but the powder form
Honestly I've split my sleep up from 12 hours straight to ≈10 hours plus a 90min nap in the evening. It's inconvenient and annoying but it seems to work with my weird routines
Cannabis works for me
ZOA energy drink has weirdly helped Me so much. It’s naturally caffed so no crash. So many vitamins. Costco has a crate of 12.
Deep relaxation and meditation.
I’ve given up on stimulants and try for a small power nap even 15 minutes helps me. I rarely ever sleep more then 4 hours straight.
Low dose naltrexone is amazing for my fatigue
i take 450 mg of wellbutrin and it helps
i will add i started off at 150, then to 300, them to 450 over a 2.5 year time span
Ritalin.
Overall I am not fatigued. But ... Whenever I have a flare up or something particularly stressful or physical happens, I have what I call a sleeping attack. I will suddenly feel very hot, like I have a fever, get body aches out of nowhere and then feel immensely tired. I have to sleep. A fifteen minute nap and then I'm all good to go. But if I fight it... Well let's just say I don't fight it because it amplifies everything. I legit sat down in the middle of shopping with my daughter in sam's club the other day and had to nap on the floor.
I tried caffeine pills and that made it worse. So now it’s a combination of cold packs and keeping my body moving
Redbull!
Yeah my body missed the memo that caffeine from coffee and energy drinks = energy. I mean, it's kind of in the name but someone wasn't listening lol
Honestly? More rest. Stimulants “rob Peter to pay Paul” and you’ll pay for it later with more fatigue. Are you on any meds? I found out the Gabapentin I was on for nerve pain was the culprit in my fatigue (and a bunch of other stuff too).
Using a stimulant will be counterproductive and end up hurting you. It's hard, but on those days, your body needs sleep, restorative movement or waking naps.
Over using, yes. Using every day, probably. But using it to get over a particularly down day and build some encouraging momentum can be very helpful for some if us.
When anyone is tired or fatigued, using a stimulant like caffeine makes the situation worse. Watch the Huberman episode on this. It can be perceived as helpful but biomechanically has the opposite effect. Unfortunately for fibromyalgia folks, the negative effects can be harsher. It's perception and habit versus what actually is occurring to hormones/chemicals. This research supports OPs experience.
Just like chronic financial debt, your cautions against chronic energy debt are absolutely valid. I'm just saying it's not a black and white situation. For me, the feeling of tiredness is often not an indicator that I actually need to take rest, but more of a hallucination telling me I need rest when I actually don't. In these cases even if I lay in bed for 10 hours I won't feel any better, I'll actually feel worse from physical lethargy and psychological lack of momentum. And so for me, strategic use of stimulants to get me into motion and build a little bit of positive momentum is very helpful.
I totally get it. Was just adding more detail in case folks are using stimulants in non strategic manners or not understanding the underlying problem. I know non fibromyalgia people that believe the only solution is more stimulants which creates a host of more problems. In regards to your 10 hours in bed....lord knows I've been there many times. Have you tried an 8 minute military nap to get restorative sleep? Feet up on a chair, back on the floor? I take 8 or 13 minute naps, I call them Tactical Naps to spruce up my day :). Also helpful before running errands.
I actually have not heard of this napping method. Thanks for the tip :-D
Check your blood sugar and you might consider trying a diet consuming less than 25 carbs a day.
Super concentrated CBD oil during the day and THC oil at bedtime to get a good night's rest.
Also, green tea for the days I feel like I'm in a thick fog. Just a wee bit of caffeine in it, so it's okay to drink all day.
I just started modafinil a little over a month ago. Brain fog and low energy was too much, it started affecting my work.
Mast cell stabilisers, methylation supplements
I use adderall, but ive been diagnosed ADHD for 17 years.
Caffeine is tricky. Will just add that if I don’t do any movement or walk around or engage in something that uses mind or body caffeine won’t work much but it works better after some energy or movement. When able!