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Use of stimulants for cfs

Discussion in 'Drug and supplement treatments' started by Spun, May 2, 2019.

  1. Spun

    Spun Established Member

    What do you think about using stimulants like ritalin or adderal to treat the fatique and the brain fog?
    Ritalin helps me very much or better said without it i would stay in bed 24/7.
    Of course it doesn't cure the cfs but it helps with some symptomes.
  2. lansbergen

    lansbergen Senior Member (Voting Rights)

    If you want to overdo take stimulans. If you want to give your body a chance to recover do not overdo.
    Leila, andypants, Aroa and 6 others like this.
  3. Spun

    Spun Established Member

    I agree that you must use any stimulant with caution but as i wrote allready without ritalin i am not able to stand up and would be lying in bed all the time. So i can walk a little bit and go in my garden to get fresh air and a bit sunlight. Only lying in bed makes it even worse for me.
  4. Hutan

    Hutan Moderator Staff Member

    The Royal Children's Hospital in Melbourne routinely prescribes Ritalin for children diagnosed with CFS. They prescribed it for my son; it seemed to help for the first few days but the effect wasn't sustained and he stopped taking it.

    60 patients; blinded crossover study, 4 weeks of Ritalin, 4 weeks of placebo.
    A clinically significant effect (> or =33% improvement or CIS < or =76) for fatigue was achieved in 17% of patients, who were considered responders; a clinically significant effect for concentration in 22% of patients. On average, the response was statistically significant but pretty small and it was a short trial.

    87 patients; double blinded, placebo controlled; 12 weeks of Ritalin plus a nutrient supplement.
    There was not a statistically significant response although there was a trend to better results with the combined treatment. That trend was very weak if dropouts from the trial were accounted for.

    There's a suggestion in the literature that the benefit wears off with repeated dosing. There are some side effects to consider and, being a stimulant, it probably makes it more likely that signals of fatigue that might prevent bad PEM are covered over. For me, if I need to be alert for a particular event, I'd rather drink a cup of coffee or two.
    MEMarge, lycaena, andypants and 10 others like this.
  5. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Metro Vancouver, BC - Canada
    I was prescribed Ritalin many years ago and it made me absolutely hyper. I was only getting a couple of hours sleep a night and I was bouncing off the walls while I was on it. Never again.
  6. rvallee

    rvallee Senior Member (Voting Rights)

    It helped a bit with cognitive symptoms when I was in remission and had mild overall symptoms, but it tapered off and the side effects became more of a problem than help. The dose at which they started becoming too high was low, another case example of how our reaction to many medications is higher than normal.

    I don't think they can provide meaningful long-term benefits.
  7. JemPD

    JemPD Senior Member (Voting Rights)

    Caffeine works quite well for me, but, as you describe, it makes it almost impossible to pace & therefore i always overdo it & pay for it badly afterwards, so i just use it for emergencies only when circumstances really require it.
    I'm sure other stimulants would likely work for me as i feel almost normal on strong caffeine, (apart from my racing heart & purple face & hot flush sweating lol!) But then a massive shot of adrenaline in the form of rage/terror works just as well.
    But i pay for it horribly afterwards.
  8. Wonko

    Wonko Senior Member (Voting Rights)

    Overall i use caffeine, from coffee, rarely. I do not find that the caffeine in black tea has the same effect.

    Caffeine, from coffee, can, and usually does provide a little more oomph than not, by which I means it affects things just enough so that instead of sitting pondering whether I can do something I just do it.

    I pay for this, I sleep a lot more during the day when I drink coffee, and it doesn't appear that my overall activity levels increase, in fact it looks like they drop considerably.

    When I'm quite bad I have been known to shut down halfway through a cup. It seems sometimes my available energy levels are low enough so that the slight increase in the rate of drain caused by caffeine is enough for my body to decide that it doesn't have the resources to run me, so I get shut down until there are enough.

    But in terms of getting things done, coffee can be helpful.
    andypants, Spun, alktipping and 3 others like this.
  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Regular tea maybe helps a bit, but caffeine can make me angry.

    I once had a chocolate and banana drink - don't know what else was in it, but I felt very angry - no instigating event - just really furious. Ah.....maybe a deep seated?!.##*** feeling being expressed towards the powers that be who have #123???!!! over my life!!!!
  10. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    At work I used caffeine and sugary snacks to get a boost of energy to work long hours. I reduced my coffee to one in the morning but it still affected sleep. I knew I was affected by coffee for years but still relied on it to push myself. Nowadays I’m decaf only and that’s only when I’m out. On a couple of occasions I have forgotten to specify decaf and that led to 18-24 hours without sleep. Im always very careful now.

    I think there’s definitely adrenaline kicking in when I do anything very demanding which for me is being ou for more than 3 hours without a chance to take a rest break. Less if there’s standing involved. to an extent to be able do important stuff on adrenaline makes things still possible but I’m getting loads more cautious about what qualifies as truly important.
    MEMarge, andypants, JemPD and 3 others like this.
  11. roller*

    roller* Senior Member (Voting Rights)

    i tried ritalin (2012 ?), was like being jittery or "nervous", while being glued to the chair.
    the best thing ever was viagra (im female), but it seemed to loose effect after 2 months. im still wondering, if i should take it again.
    Hutan, dan6000, andypants and 2 others like this.
  12. Spun

    Spun Established Member

    For me coffee is too weak to have any impact on the fatigue symptoms, no matter how much i drink. In the beginning of my sickness i tried modafinil which helped a little and had no side-effects at all. my doctor decided to try ritalin because it has more stimulating effects compared to modafinil. perhaps i will try modanfinil again toghether with a lower dose of ritalin combiend to have less side-effects in the future if i find a doctor who prescripes me modanfinil.
    andypants and alktipping like this.
  13. Cinders66

    Cinders66 Senior Member (Voting Rights)

    I’m severe with mental fatigue as primary symptoms, Ritalin and modafonil has same effect of switching on brainfor hours, horrible when poor tired brain Just needed to rest. Obviously everyone has different presentation so if extreme brain fatigue needing lots of complete brain rests isn’t main issue then they might be tolerable and helpful. If you need to sleep often Also I don’t know how they could be tolerated.
  14. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

    I use caffeine in the form of dark chocolate and black tea in the morning, then green tea in the afternoon. I don't like coffee. Black tea in the afternoon is enough to interfere with my sleep.
  15. alex3619

    alex3619 Senior Member (Voting Rights)

    In the small number of cases where I talked to other patients about this, stimulants can help if used rarely to assist coping with big events. Continued use is devastating. I suspect this might be due to feeling like you can do more and so pushing yourself harder. I also wonder if enough stimulants could by themselves induce a relapse even if you are careful.

    The gold standard for any study on treatments for ME and CFS should be how much more someone can physically do over time. Its not about how they tick boxes on a form. I have not read the studies in question, maybe someone can comment further?
  16. Webdog

    Webdog Senior Member (Voting Rights)

    Holodeck #2
    Trish, Spun, adambeyoncelowe and 3 others like this.
  17. Mij

    Mij Senior Member (Voting Rights)

    I actually feel better taking a mild sedative.
    andypants and Spun like this.
  18. Spun

    Spun Established Member

    I also read the kpax study and i wonder if the ritalin or the supplements did help. As far as i understood the study, kpax did help only the patients with very heavy symptoms. did anyone tried kpax without ritalin and can say if it has positive effects?
  19. Sbag

    Sbag Senior Member (Voting Rights)

    I was prescribed Modafinil for my ME a few years ago. When I started taking it I thought it was wonderful - it enabled me to get through the day without having to keep napping. I did realise that although I was awake it didn't give me any extra energy so I had to be careful not to overdo things as it was easier to carry on when I should stop. My prescription was 2 pills a day which I took for a couple of years.

    However then I started getting lots of other symptoms which I thought were due to worsening ME - the most worrying was the changes in my heart - I was getting a lot of palpitations and could feel it racing and it felt like it was beating out of my chest. It would be racing at 120bpm when I was trying to get to sleep at night.
    After taking the pills in the morning I would get bad stomach issues - always having to race to the toilet. Also shaking, sweating etc.

    With the heart issues I did go to the Dr and he gave me a monitor thing which didn't actually record anything because it wasn't working! He never followed up. But it clicked that all of these issues were probably due to the Modafinil.

    So I stopped taking them. Cue big crash! The pills were obviously keeping my body racing even when I was resting. So when I stopped taking them the difference was dramatic - the fog descended and I was back to being in bed most of the day. However over time the heart issues and all of the other problems subsided. So I can almost certainly say that these were due to the ongoing use of the stimulant and not worsening ME.

    Now I have been off the pills for over a year but have started using them again on "special occasions" - if I need to drive somewhere or am out for the day doing something and need to stay awake. I do realise this isn't the best thing to do but sometimes we choose to have a "normal" day where we do things with other people even if we have to pay for it after. The pills do allow me to do this but I try and take as small a dose as possible.

    My take on use of stimulants like this is that they have a huge impact and toll on your body. I wasn't told this at the start and wouldn't have used them quite as prescribed if I had realised. I think they have had a lasting impact on my body and I regret having taken them.

    If I were in the situation again where I was newly prescribed them and knew everything that I did now I would say that yes they can be useful but don't take them every day regardless of what you are doing. They aren't a medication that needs to build up in your system so there is no point in taking them if you are planning to do nothing all day - in fact it makes it worse as you will never be able to rest properly. I would rather have been told to only use them if I needed them and to try as low a dose as possible (rather than taking the prescribed amount every day).

    Ultimately they seem to harm our ME bodies but so does any excessive effort. I think these medications will make the post exertional effects worse than if you do something without taking them. But sometimes we choose to push our bodies because we have to do something or because we want to do something normal like having a day out with friends. Taking a stimulant (for me) makes this possible but I know I will feel worse for it. So now it is a calculated choice that I make. I hardly ever take them now but do occasionally. I feel that if I had used them more sparingly to start with then I wouldn't have as much of a bad reaction to them now - so maybe there is a better way to use them.

    So overall I am not advocating them in any way but they can have a use (like coffee etc) , but with a huge warning flag on them. it is another one of those choices we have to make - do something we like knowing it will have a negative effect.
    Hutan, Spun, Ebb Tide and 4 others like this.
  20. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    I haven’t been prescribed stimulants although in the early days when I didn’t realise I was ill, I gradually increased my coffee intake to quite a high level (like 20-30 espresso shots per day...each with 2 spoonfuls of sugar). I even bought a cheap Nespresso machine for work so I could get my fix.

    Now I have weaned myself off of caffeine and massively reduced sugar (it was making me a lot worse). I still have a double caff espresso to wake me up for work as part of my morning routine, but the rest of the time it’s decaff all the way and a lot less cups than before (decaf still has caffeine in it).

    In my case I don’t think blanketing symptom signals is helpful and it’s just fraught with unexpected payback making it difficult to pace.
    Hutan, Mij, Ebb Tide and 2 others like this.

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