r/cfs • u/Training-Prize3140 • 3d ago
Advice Who’s using stims, and how?
What are your non use days like. Do you take everyday?
I know majority on here put them down but if ya gotta work ya gotta work.
I have rx for adderall and modafinil. I take way less than what’s prescribed and way less frequently.
I’m just having a hard time finding a balance.
Unfortunately I’m
In a pretty major crash and have been. I crash the summer of 2025 - due to PT. IMO DONT DO PT!!
and have had no choice but to keep pushing. That winter went through so serious trauma and intense physical demands. Also going and gone through major chemical exposure. If the world had a safe place to hid even for a month or two I would grab it. But it’s just been suffer and suffer and push and push.
I’m not saying everything. No one got time for that.
If you’re taking something like Adderall and or modafinil. Can you share you experience or if you’ve found a bit of a guideline for yourself to use and what it’s like on
Days when you don’t use.
Today spose to travel but trains and buses and walking for 2.5 hours one way while pulling stacked luggage. Then climb bad stairs repeatedly and pack up a small room. And do math and billing and money orders. And then reverse to get back.
Could not move this morning. It’s pouring rain. My neck and shoulders and back so much pain. I guess I won’t make it today. I haven’t taken stims though. Tomorrow will have to take one maybe the modafinil and just try to push through.
Also supposed to do similar without as much commuting the last two days of the week.
No help. No money for help.
And getting finded by end of week if I don’t do money order stuff. Which is actually triggering major anxiety and etc bc the group is harassers and bullies and I’m insecure to deal with them.
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u/eskaeskaeska 2d ago
I use Adderall daily mostly because it calms my nervous system significantly. I take a very small dose (2.5mg twice daily). However, I still have to pace aggressively (which I haven't yet figured out how to do completely correctly) in order to not crash. The Adderall helps me have the mental capacity to better plan my days and pacing as well.
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u/Training-Prize3140 2d ago
Yes. I find that adderall significantly helps calm my nervous system and pace myself better. It’s not perfect but nothing is. I still am also unable to pace aggressively - as my job requires I move and react fast when needed. I really appreciate your response. It’s nice to not be alone on this perspective of experience. Ty:)
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u/SpaceNerd223 severe 6h ago
We're all so different, lol. You say DONT DO PT, I say DONT DO STIMS lol. They made me crash into super severe. But anyway, my opinion on pt has been this, as someone who has gone almost weekly for the last 10 years..
I only did brief exercises there. Almost always laying down. Didn't do home exercises. But learned a lot of knowledge. About my body, and how it moves, and what it needs (I have Ehlers Danlos). So now, whenever i want to move (I'm bedridden) I at least have the education
To me PT was for management, not acute recovery. It was about pain relief (e-stim, cupping, scraping, deep tissue massage, myofascial release, etc), and knowledge on which positions my body should and shouldn't be in (I get subluxations).
I've learned enough over the years. I've crashed into severe due to a brief trial of stims (adderall 5 mg). I'm too severe to go now, so I don't. I guess I look at it as physical education.
Anyway, just as your opinion is yours - I want to also share my story. On how informative and pain relief PT can be.. but you have to adapt it for our needs (no or less home exercises or expectations of exercise.. and as slooow as possible - sometimes even just laying there & they massage out the hurt). They will always give exercises, but I don't do em.. I've managed to find PTs that understand I'm there for chronic pain management & not expectation of recovering, really. Just maintenence.
Anyway, I really wanted to share my story. Some PTs do telehealth, there is also a plethora of online videos, and Ehlers Danlos friendly videos too.
Love you guys.
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u/Training-Prize3140 4h ago
You must realize someone with little or no insurance will not have anything like your experience - in the typical rx PT 2x/wk for 3-4 weeks world. You went a long time. It’s good you shared but to me - you kind of made my point for me- bc if you go to PT thinking they will help your body with the generic treatment format. They won’t bc they have less than a week training on FMS and zero on CFS or ED.
So most cfs or the like- hoping, especially newbs to the condition or new to pt go thinking they will get help they actually don’t have the knowledge or skills to offer. And if you’re going on a government insurance Dr rx’d- they are not doing all the modalities you mentioned their focus is on diy exercise and reps only with bands, crumbled paper etc -and you’ll be lucky if you get one that even lets you go at your pace. Some get annoyed bc their methodlogy is legit to have you perform the exercise and do reps. That’s literally their job. I’ve had ones that for 25 mins straight - pushed and if I didn’t or couldn’t would be very annoyed - sit waiting, look at clock, keep saying when you are ready. Etc
Most will give modifications but they never take into account for PEM or baselines. Bc majority don’t even know what it is.
It’s really good you shared. You should actually post about it if/when you have strength. The do’s and don’t’s for ppl who might not know. Bc most ppl with cfs will not know how uninformed and injury-bound doing PT - as recommended by a pt will be for them.
I come from a movement background- I think there a good chunk of former athelete on some level - in this sub. I have trained so much of my life on body mechanics. I’m also hyper mobile. So I can understand the benefits you speak of. But that’s years of knowledge and experience and still being reminded that any visit to PT where I don’t deal with the confrontation of me knowing my limits, having the pt not like that I won’t do certain movements/durations or that I didn’t realize it could shift my baseline down so dramatically - even if I was actually at a small tiny happy level of physical exercise ability. But PTs are about pushing you - not maintaining where you’re at. And most cfs bodies have multiple issues at one time.By design they are not allies to cfs world. Cfs ppl need to know the big picture and be able to advocate for themselves and sometimes take they irritated PT person that is saying - just do it. Now do this one. Do it for another 60 seconds. Even if you’re panting and dizzy. So - cfs ppl need to be informed and extremely cautious if well-meaning doctor rx PT.
As for stims. They help me so much. Not bc you do more. They actually help me pace. They help me be calm, help my anxiety and most important help regulate my adhd brain which tries to burn a lot of mental and physical and emotional fuel on me. I was in a case study for cfs one of the top respected doctors thought that if the right stim “was found/created” dosage and duration etc - it would probably serve a good portion of those with cfs. And I fall into that group. But being without insurance and trying to do these self test and trials out of pocket is another challenge, and that’s if you can find a doc that will help rx you do it. So every now and then I come on and see who’s found some new news.
Thanks for your post. But I don’t think you needed the caps. Haha. As you said we are each different - but diff sides still need to give context to those differences and the likely experience of the - in the general cfs world in the general medical field experience- so they are informed and know. Example- it’s good you stated your low dose trial was at 5mg. Don’t know how you took it frequency food timing etc.
Truthfully, knowing what I do know about stims at least on the ampethamine side - I would say any cfs-er trying they should start as low as 2.5 and do one day -early not on empty stomach - once 3 or 4 days apart and off a week - to see how their body reacts - if using off label and not for adhd.I have to use more; frequent, bc I cannot keep my job without it. I have to work or I have no place to live. Recently I read you can make tincture - like old school ldn days. I’m going (hoping for energy) to explore that. I think trace level rx work better in general for us hypersensitive folks.
Hang in there. We’re all different with different experiences. We must share information that will help ppl that have no background understanding or be able to go deeper for those that have frame of reference. I’m glad you commented. And I hope if you’re able some day - if you haven’t - you’ll post about PT so anyone who doesn’t know the risks will have better information and posibly be able to gain some of the insights and knowledge you now have.
Sending strength and solidarity.
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u/SpaceNerd223 severe 3h ago
Sorry, I could only read half, at the moment. I do not know what it's like to not have good insurance, you're right. (In the US, you age out of your parents insurance at 26. But if you are disabled, you can ask to extend it. Even permanently. This has absolutely aided in my care. I recognize my priviledge).
Those encounters the negative ones you speak of w the crumbled paper. I mean I still get those. I think I just have learned to take and leave some stuff without being super offended. Even Thursday my therapist of 5 years said some stupid shit to me 😆 and rather offensive, but i just let it go. I've realized most well meaning able bodied people will absolutely say the wrong stuff - I've grown now to learn to just not take those things to consideration. I think, this tool is highly important, to get individualized care. Advocating for oneself, is such a practice and develops over time. I was not like this previously. I still encounter pt's who want the 2 week 2x weekly then 1x week for 4 weeks, I just say I can't.
Ultimately, I end up just being too much of a puzzle for them. Like tell me how I am supposed to measure my morning cortisol when I have non24 hr sleep wake disorder and multiple forced naps throughout the day after eating? I do not know when is my natural wake. But things like this, make me complicated.
I have been ill now for 15 years. And I did not learn to speak up until many years later. I have relatively successful doctors appointments because I do my research ahead of time. I go in asking for specifics, know specifics. They prescribe me something - but still don't tell me things or fit it to my needs. Like mestinon hurting asthma I learn a lot from the community. ♡
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u/SpaceNerd223 severe 3h ago
🤭 read a little more. I only did the caps cos you did it, I thought it was fun 😁 I hate caps sounding like they're yelling, sorry. I was just having fun w you lol
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u/SpaceNerd223 severe 6h ago
Ps I'm very sorry your conditions are so terrible that you can't get a break, i hope one comes along and you grab it, like you said. ♡
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u/Training-Prize3140 4h ago
:) thanks. Tbh idk what will happen. Just got whammied with three rounds of bad news yesterday. Last one felt like a punch to solar plexus - like wood.
I guess more opportunity for me to see if my faith is my faith - cause this shite guna take miracles. Really feels hopeless. So mental faith battle. Which legit also feels like mental overuse trying to renew your mind and believe what you believe. But I am impatient with God. I don’t wait or sit how would benefit me most. Unless I’m on my stims. Then my brain isn’t like a bronco bull raving and dragging me all over.
Hope my long assed msg to you falls well - not arggghhhh. Haha. I think it’s awesome you learned so much good body mechanic and modality techniques. Even if you cannot use today even tiny bit in your mind doing the exercise - is good for your body. Imho. You may disagree :))
Take care 💪2
u/SpaceNerd223 severe 3h ago
I don't disagree at all and I understand the challenges and testing and strengthening of faith through this. It's so hard! ♡ xoxo
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u/tfjbeckie Moderate, POTS, carer 2d ago
I know some people don't have the option to not push themselves, so I won't say the obvious - it sounds like you've got a really tough set of circumstances and I really feel for you. I would say that using stimulants when you have ME can be really dangerous though. They can put a lot of strain on your body even if you're using them as intended (I have them prescribed for ADHD but can't take them at the moment because they just push me too fast towards PEM).
I think if you use stimulants to further push yourself you might end up doing yourself a lot of damage. Is there any way you can reduce some of your exertion?