Could Vyvanse reduce some of the ‘brain drain’ occurring in chronic fatigue syndrome?
When people with ME/CFS say they’re not the same person they used to be, it’s not just physical illness they’re talking about it; for many the ‘mental component’; the loss of sharpness, of focus, of the ‘cognitive grace’ they used to experience can be difficult. Losing or altering such intimate parts of who we consider ourselves can be challenging to say the least.
So when something shows up that may reverse some of the ‘brain drain’ it’s interesting. Brain stimulants are used (or at least tried) fairly regularly in chronic fatigue syndrome but few studies have examined their effects. Now a rare placebo-controlled double-blinded trial suggests a new and less addictive type of amphetamine called lisdexamfetamine dimesylate or Vyvanse, could work for some patients.
Amphetamines increase energy levels, enhance concentration and motivation and tend to boost the ‘reward’ centers of the brain. As such they’ve been used legally and illegally to boost performance in many sectors of society including the military, athletes and by college students cramming for exams.
Paul Erdos, one of the greatest mathematicians of the 20th century, claimed he lost a month of work after quitting amphetamines to win a bet, saying “Before, when I looked at a piece of blank paper my mind was filled with ideas. Now all I see is a blank piece of paper.” It’s no wonder, given their cognitive challenges and depleted energy levels, that some people with ME/CFS give stimulants a try…
Problems with physical and psychological dependence, however, have lead amphetamines to be classified as Schedule II drugs which have a high potential for abuse.
Vyvanse
Approved for use in ADHD, Vyvanse is being studied in depression, multiple sclerosis, menopause, excessive daytime sleep, traumatic brain injury, addiction, and binge eating. ADHD may be common in both fibromyalgia and ME/CFS (Saez-Frances et. al. 2012).
Vyvanse affects executive functioning which studies suggests is impaired in chronic fatigue syndrome (ME/CFS). Executive functioning is needed for planning or decision-making (ach!) or when we’re faced with novel situations. If your ability to plan or make decisions took a hit, or if you’ve had more trouble overcoming temptations, or if you feel you’ve become locked into habitual responses since you came down with this disorder, poor executive functioning may be to blame.
The ME/CFS patients in the study had documented problems with executive functioning and over 60% of them also scored above the threshold for ADHD on the ADHD-RS test.
Less confusion, better decision making, more mental alertness, etc. would be a nice thing to have. Let’s see how they did on Vyvanse.
The Study
The participants took from 30 to 50 to 70 mgs/day of the drug or placebo for six weeks. The Behavior Rating Inventory of Executive Function-Adult ( Brief-A) test was used to measure working memory, planning and organizational ability, emotional control, etc. People with a wide variety of disorders ranging from ADHD to autism to multiple sclerosis to depression have abnormal results on this test.
Results
The results were positive with ME/CFS patients on the drug scoring significantly higher (p<.005) on the Brief-A test. Interestingly, the people receiving the drug also experienced significantly less fatigue and less pain. The researchers stated…
“the present study demonstrates that (Vyvanse) is safe and well tolerated among participants with both CFS and clinically significant executive functioning deficits. Although it does not appear to be curative, further studies should be undertaken to assess the rate of relapse following cessation of treatment. Observations in the clinic thus far suggest the benefits are sustained only with ongoing treatment.”
The finding that the drug improved cognition and resulted in less fatigue and pain was intriguing. Nobody knows exactly why a psychostimulant should be able to relieve pain, but one theory is that improved cognition may be able to enhance a person’s ability to filter out pain sensations.
This idea that cognitive ‘weakness’ could result in pain signals being magnified or less well controlled, or on the flip side, that increasing one’s cognitive ‘strength’ could enhance one’s ability to reduce pain levels is appealing. Meditators, after all, have been shown to have a higher tolerance to pain probably because they’re able to blunt the emotional response to pain – which turns on the fight/flight response – which, in turn, increases pain levels.
Executive Functioning and the Prefrontal Cortex
The prefrontal cortex (PFC) could be a key player in this scenario. The PFC, which sits in the front top region of the brain, has long been known as the source of high-level cognitive thought. The PFC, for instance, is supposed to tame the ‘cruder’, more automatic reactions coming from the fear center of the brain, the amygdala, and keep it from over-reacting. Amygdala activation has been linked to fear, the activation of the fight/flight response and increased pain.
Some evidence suggests the prefrontal cortex may not be working well in ME/CFS. If the PFC is too weak to control the amygdala, then a drug that strengthens PFC functioning could quiet down the amygdala and conceivably reduce pain and fatigue levels as well.
Intriguingly, Vyvanse regulates both sympathetic nervous system (noradrenergic) and dopamine activity in the prefrontal cortex. Dopamine levels are typically low in ADD and ADHD, and given the basal ganglia issues found, could be low in ME/CFS as well. Low dopamine levels could conceivably impair executive functioning as well as another major issue in ME/CFS – muscle control and coordination. Could Vyvanse’s effects on the prefrontal cortex be smoothing out an overheated and over-reactive system?
This was a very small study – just 26 people, half of whom got the drug but hopefully we’ll get larger studies in the future.
Side Effects
Vyvanse is a next generation amphetamine which promises fewer side effects than other amphetamines but the list of ‘common’ side effects (>5% in frequency) is a long one and includes dizziness, agitation, nausea, anxiety, diarrhea, weight loss, euphoria, rapid heartbeat and severe side effects can include tachycardia, fever, muscle tremors, seizures, etc. The authors reported few side effects in the small CFS population tested.
- Find out more about stimulants for ME/CFS or fibromyalgia here.
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Use of lixdexamfetamine dimesylate in treatment of executive functioning deficits and chronic fatigue syndrome: A double blind, placebo-controlled study. Psychiatry Res. 2012 Oct 9. pii: S0165-1781(12)00503-3. doi: 10.1016/j.psychres.2012.09.007.
Attention-deficit hyperactivity disorder in chronic fatigue syndrome patients. Sáez-Francàs N, Alegre J, Calvo N, Antonio Ramos-Quiroga J, Ruiz E, Hernández-Vara J, Casas M. Psychiatry Res. 2012 May 28
Very interesting Cort.
You don’t happen to know if, in the research that found ADHD in ME/CFS patients, if they stated which type?
Hyperactive, inattentive or mixed?
Good luck with the new site BTW
Thanks Marco…
I am dimly aware that there are different types of ADHD 🙂 (are there different types of every disorder?) but I don’t recollect them differentiating them out. (I could be wrong…)
I noticed this blog from back in December and wanted to mention that I have a son on the vyvanse for adult add/schizo/bi-polar and a grandson on it for add. This article makes me wonder if my genes are the ones handed down to the boys. Not that it makes a whole lot of difference but it also could, too, I suppose.
I’m just going to pipe up with my anecdotal evidence – I have adult ADHD and CFS/ME/fibromyalgia and I certainly have the hyperactive variant of ADHD. I have found resting extremely difficult, even when exhausted. I liken it to having restless legs, but for my whole body. My body will be so, so exhausted, and I can see that I need to sit still, but I fidget, squirm and get up to do ‘little jobs’. I have found methylphedrinate to be very helpful (stimulants help me stay still… go figure) but would like to try Vyvanse if possible
Thanks for relaying your experience JB. How odd, indeed, it is that stimulants can help our bodies calm down. That fits with Naviaux’s report that a low energy state is a twitchy state.
I don’t think the improved pain has anything to do with improved cognition. It is well known that dopaminergic drugs (both stimulants and non-stimulants) can help cognition, fatigue and pain. Pain can be improved even if cognition is not.
I’m not convinced lisdexamphetamine is better than normal dexamphetamine. It appears to be just a way to override patent protection. This can have its good sides, too: patent-protected drugs are much more likely to be used in studies.
Maija,
I agree with your statement completely, based on my own experience. I was diagnosed with ME/CFS about 4 years ago, allow I had been suffering the symptoms much longer. I have been on several different meds. for pain and found a combination that works most of the time. However, my fatigue and “brain fog” never got any better. The Dr. finally agreed on trying stimulants a year ago (after sleeping through most of two years), ritalin first and then dexamphetamine. And the Dex. has been life saver, without any serious side affects. It’s a generic drug which is very cheap, so I can see the pharmaceutical companies trying to find something patented to try to sale patients.
I disagree with the statement that lisdexamphetamine (Vyvanse) is not better than dexamphetamine (dextroamphetamine). I currently take both, and the difference is remarkable.
I just turned 58 (early 2019). I returned to college in 2009 to finish my undergrad degree in psychology and then a masters degree for counseling psychology (LPC). Around 2010, I was formally diagnosed with ADHD, inattentive type. I began taking 20mg Adderall (regular or XR as needed) in 2011. It was a godsend! I never knew it was possible to read a paragraph in a textbook just one time without getting sidetracked! In 2011, I graduated summa cum laude with a major in psychology and a minor in business administration (4.0/4.0 for 42 hours in psyc classes).
A couple years later while working on my masters degree, I started having a number of health problems, including CFS. It got so bad that I was sleeping 24/7. I’d wake up, take Adderall, and then sleep the rest of the day. Adderall just wasn’t working for CFS.
During this time, I found it very difficult to study for my oral exams to finish my masters degree. My memory wasn’t the same. I had absolutely no energy. I could not think clearly under pressure as I always had before. I was finally allowed to take written exams and passed with high marks. I graduated with a GPA of 3.9/4.0. My issues with studying for orals was not because I was lazy or a poor student. I truly could not focus as before.
After graduating, I found it very difficult to stay awake long enough to prepare for the NCE exam. My doctor decided to switch me to 70mg Vyvanse. Oh, wow! I felt normal again! It was amazing! I have to watch how late in the day I take it because it can make it hard to fall asleep at night, but I don’t mind. To finally have something to make me more normal again is well worth the side-effects.
Because Vyvanse takes about 2 hours to kick in, my doctor also added 10mg dextroamphetamine to the mix. I take dextroamphetamine with Vyvanse when I first wake up. The dextroamphetamine helps me a little, but the real change is when the Vyvanse finally starts working. I have a very noticeable change in my fatigue levels. I can actually get up and do something again! I am ME again!
I do not know how well 10mg of dextroamphetamine compares with 70mg of Vyvanse so that may be part of the reason why I am experiencing such a huge difference between the two meds. I’ve tried taking the dextroamphetamine by itself, and I can easily sleep all day after taking it so it’s really no more helpful to me than Adderall. It is the Vyvanse that makes the big difference.
So for me, there is a huge difference between dexamphetamine (dextroamphetamine) and lisdexamphetamine (Vyvanse).
this is a helpful conversation for me. After years of CFS and getting to the point I couldn’t function to take care of myself I gave in and started trying stimulants. mostly after hearing about the Synergy Trial. I was trying to have “hope” what i am noticing is Ritalin seems to be more helpful to me than Adderall XR 10mg. .. i seem to get more “sleepy” with the adderall XR 10. I am wondering if switching to Vyvanse may be a better choice for me ? also wondering about the dexamphetamine I dont know why i thought that was the same as the adderall XR? still much to learn. I was impressed by Vicki’s Story! that is quite and accomplishment.
Actually I have severe pain due to multiple diseases and disorders and damage to the body and I have found that it does help with physical pain. Idk if the hyper focus on pain is gone or if it is gone because dopamine and possibly endorphins play a crucial role in the reason. Which would make sense. If the brain is happier and more relaxed and of working as hard neither is the brain signaling firing thats going on. Also the same with Modafinil (Provigil) helped my pain as well. So my guess will be the relaxant brain , less hyper focus on pain , or endorphin links to the dopamine pathways and how they signal the CNS of pain.
I agree with Maija, the reduced pain seems related to the dopamine aspect that these drugs address. I was prescribed Vyvanse for CFS and ADD – Inattentive Type. It did indeed help with mental clarity and focus, helping the PFC function bette; however I personally experienced:
– Extreme Insomnia (perhaps due to chemical sensitivity and poor metabolizer, I believe it stays active in my system longer than a healthy metabolizer)
– Mental Exhaustion – After about 8 hours, I experienced a different kind of fatigue. My brain felt wiped out and exhausted as if it had been on HIGH all day, this was very different than “normal” CFS fatigue.
– After several days of use (smallest dose, only once a day, in the a.m.), the positive cognitive effect first experienced no longer was produced, replaced by increased malaise and nausea.
I now limit the use to once a month on a day that I need to accomplish a series of mental tasks.
These are my own symptoms and side effects only, every body is affected differently of course. Just sharing to add to the understanding as one diagnosed with both CFS and ADD.
Thanks Nancy….I have similar experiences with all sorts of medications; things that work seem to trigger an opposite response after a time. It’s as if the energy boost releases something negative for me…
I believe the stimulant Provigil has also been tried with similar results – the effect appears to be temporary.
Sorry, this isn’t the right area maybe to ask this but I’m new to all this and your site…I have reason to believe I have fibromyalgia but doctor after doctor is resisting any kind of diagnosis (primary care passes me to rheumatologists and rheumatologists say they “don’t treat fibro”–huh??!) and they just keep passing me around….I’ve taken some things into my own hands, doing my own research and I came across your site today. I am curious to know what has happened to Dr. Sam Yue and his studies on relaxin and the Vitalaxin product? There seems to be some substantial evidence about the use of relaxin (maybe to help women more specifically but now it seems to have fully disappeared from the market and no way to get it at all. I can say that my symptoms fully disappeared during my last pregnancy….so I can speak to the power of relaxin, and now I want some! (and having more kids is out of the question…..although almost sounds good if I could feel better!) Thank you for any insight you have.
Hi…your story of not getting good care for Fibro is unfortunately pretty common. I don’t know anything about Hue..and relaxin but some people who are pretty up on drugs commented on this thread; maybe they can help out.
Dawn: I did find some info on the hormone Relaxin here: http://www.ncbi.nlm.nih.gov/pubmed/17458501 You have to register for pubmed I believe, but I don’t believe there is any fee.
Interesting thoughts Cort, just wish the underlying mechanisms were fully mapped and understood. From early days of thinking capacity almost zero (lost recognitions too) – even now sudden what I think we call crashes appear regularly, though memory restored.
Yes, indeed..I think these drugs are like mallets where we need stiletto’s…drugs that directly get to the underlying mechanisms. I’m hoping that ME/CFS shares some of the underlying mechanisms in the brain with other disorders and that we’ll get some help understanding and treating it as research in the other disorders proceeds.
Glad to hear some memory ‘restorage’ has occurred.
I’ll have a cognition overview coming up after the New Year.
I’d like to add information about another amphetamine offshoot called Focalin. With 20 years of major CFS issues I opted to try this out. Note that Vyvance is very similar in effect but not as strong (mg for mg). My MD now has multiple CFS patients on Focalin at varying doses (about 30 mg-120mg per day). Yes this absolutely stimulates Dopamine production, but does not exceed a certain level, unlike the killer Meth or Cocaine drugs. Dopamine is key to ALL pleasure centers so it’s best not being able to abuse. There is no hangover or penalty from moderate ‘energy’ over use. Again, this is how I respond.
There is potential for amphetamine-like side effects/reactions/ dependance/mental changes; be very cautious and aware on these ADHD drugs for any changes.
My benefits on drug: Focalin ‘cures’ all depression, just like that. The Dopamine sense of ‘feel good’ took it’s place, overnight. It also provides for false sense of energy. Note that any sense of energy is just plain excellent for me. It is also motivating in the same regard. For some reason the drug also acts as a substantial pain reliever and I don’t know why. So I quit the opiates, a really big deal, same with ineffective anti depressants.
This is a very brief overview of my response to Focalin, a Vyvance related drug.
Thanks so much Rich for providing your experience. Glad Focalin has helped and how about your ability to get off opioids…that’s really something…Thanks!
Nine years later and all of the above still apply, with one caveat- all-around response to Focalin has decreased by about 20%, with no change in dosage.
PS to above:
A pharmacist and an industry insider have described where these new generation ADHD drugs came from. This is close, anyway:
Amphetamine molecule has four distinct components. They took away the three that had most of the addictive issues and side effects and other undesirable features, and here we are with the fourth, albeit re-named and tweaked a bit in different directions.
If my brain energy is working correctly right now, the first thing that comes to my mind is that ALL energy uses mitochondria, right? So, I would think that as the drug does it’s work, it is also using up mitos, thus it could be a problem down the road while on them.
I wonder if we use these meds, could we push our bodies and/or brains beyond what is good for us. Unless we know what is causing an individual’s case of CFS (or, even if they are properly diagnosed), this type of med could do much harm.
I too am concerned about any drug proposed to treat just one or several symptoms without a detailed knowledge of just what impact that drug might have on the systemic issues we all have…if you mess with something here will it make something there worse over time? If as I suspect that we have low level active brain infections due to a breakdown in the blood/brain barrier system…what are the consequences of using any stimulant?
i take vyvanse now. (M.E. Diagnosed 1986)
while it allows me to stay awake and get a couple of things done/able to keep appts, i get extremely fatigued (excertional malaise) when taken on too regular a basis. no more than 2 or 3 days in a row. even then, i seem to have real trouble physically the day after. total muscle and brain depletion.
i’m going to have to be more aware of whether or not my pain is reduced before i comment on that aspect.
i don’t think the answer to my M.E. is in this pill because it really does beat the crap out of me. had to lower initial dosage cuz i was way too jittery and paranoid and it was low dosage to start with.
on the other hand, i’m thankful to have a doctor that came up with the idea to take this otherwise i’d be pretty much bedbound 100% of the time.
it is NOT covered by insurance and is pricey (brain fog’s bad right now or i might be able to tell you exactly how much here in canada and what dosage i started at and what dosae i take now). i will check if anyone really wants to know.
I guess there are no easy answers. I have a similar experience on a much milder stimulant – caffeine…A couple of sips and I’m flying and its great, I concentrate really well, my energy is good, my libido even goes up and at the end I get jittery, my gut starts cramping up…and then am depleted the next day…That’s all from a couple of drinks of coffee.
Just a note to say that Vyvanse is covered by my extended medical in Canada, so maybe it will be for others, too. I haven’t started taking it yet. I am one of those people who is just about bedbound 90% of the time, housebound almost completely. My pain, fatigue and weakness from FM/CFS is constant and intense. I am really hoping Vyvanse will help me but I’m extremely sensitive to medication and I’ve tried so many medications and modalities with no success. I feel like I have to try this because I have virtually no quality of life and I was so full of energy and life before I was struck down by this illness. I just want some quality of life.
btw, thanks for this article. perhaps it might help get insurance company to pay for considering it’s specifically mentioned in study. I will also print out for dr. Thank you.
Good luck – it looks like Vyvanse is an every couple days at small doses sort of thing..its good to get a boost though.
I’ve been taking modifinil now for nearly 10 months. It is a stimulant that is not supposed to be addictive. The scientific community still is unsure exactly how it works. At first 1/2 a dose was enough. Now I usually take a full dose in the morning when I know I am going to need it. I found I cannot take it for more than 3 days at a time now without its effectiveness getting worse and without a high risk of crashing. Would that be the same with vyvanse? Modifinil has helped me do things I just could not do without it. If vyvanse can do the same or better without addictive risk I would be interested in trying it.
I have MS and ADHD (just recently diagnosed). I had taken provigil for several years and LOVED it, but I did increase over time from 50 mg to 300mg, but then backed down to 200mg. It seemed that it wasn’t working as well as before, but I did still stay awake and wasn’t wiped out by mid-day. But then we had to change insurance companies at work and the new company would not pay for it for MS. When I was discussing this with my primary physician and mentioned that I had tested at home for ADHD(score at 70), she suggested vyvanse. It has been amazing! Initially, when I was on 20mg, it would work great throughout the day, but then I would CRASH at 10:30, and there had better be a bed right beside me, because I was down. Now I am on 40mg and although I don’t have the surge of energy that I had on provigil, I do not have any problems staying awake during the day or going to sleep at night. I feel more “even” on vyvanse than I did on provigil and much less “chatty”. I also really looked at my bloodwork and noticed where i was within range on some of the tests, but just barely. So I started taking B12 and B6 and that has also increased my energy level and decreased/ eliminated the brain fog. I can tell the difference between just taking vyvanse and taking it with additional b12 and b6. I was on a multi vitamin (and still do take one), but the additional b vitamins have helped a lot The side affect on vyvanse though (which is why I was on Internet tonight) has been increase in acne (I’m 45 and have never had a problem with acne), and it suddenly dawned on me, that I looked like I was on drugs (which i am, but legally) with all the sores. I did find several posts discussing acne and the combination oily and dry skin and what you can do to treat.
For me the vyvanse has been a lifesaver. With insurance and a printable discount, it currently is only $30 a month for me vs. $650 a month for generic provigil. I have also found that if I really need to get something done on a particular day, I can skip the vyvanse and take 100 mg of the provigil (new insurance again and this one will pay for provigil) and it seems to “work” again. So now, for me, given the choice between the two med’s, I am sticking with Vyvanse, and just taking the provigil a couple of times a month.
Thanks for relating your experience and congratulations on finding something that helps.
my brain fog disappeared on a gluten free diet – something to try before going down the drug route?
Have not tried a gluten free diet as too much work. Am barely able to prepare meals for myself now (I live alone.) I do feel better when can eat mostly fresh, lightly cooked veggies, but that may just be my own system.
BTW, I have had CFS symptoms, then later FM symptoms, since ’76 but became much worse in ’87. Finally diagnosed in ’84;unable to work since ’92. Have tried almost everything but like most of you here am extremely sensitive to meds and have many weird reactions.
Over the years the pain, much of the time, has decreased.(This is relative.) But the fatigue has gotten worse. I can concentrate better, to the extent that I can read a light-weight novel. But my memory for names and specific words is getting much worse. I have never taken any kind of stimulant except the caffeine in Excedrin. Oddly enough, the caffeine (or something) in coffee wires me totally, like it does Cort. Go figure.
Anyway, I am desperate for some energy..I would rather have pain, at least up to a point :>) can function with pain but not, obviously, without energy. But am afraid to take any of these amphetamine-type drugs. Also, “scattered” and racing thoughts are worse than ever, even though I have been meditating consistently for the past 7 yrs. Meditating does/did help but is getting more difficult. Anyone else have this issue?
Sorry to gabble on…Wishing all of you the best.
Thank you, Cort, for this new newsletter. I hope to be able to keep up with the CFS/ME news better.
Correction: Was not diagnosed until ’94. Received disability in ’97.
I’m afraid that Vynase (lixdexamfetamine) is just another amphetamine. The “selling point” (besides that it is patentable) is that it is a prodrug. That means, in order for it to work, it must be first converted (by an enzyme in red blood cells) to dextroamphetamine. Basically, it is dextroamphetamine with a lysine molecule attached. The rationale for making such a molecule is to make the drug less “abusable.” I suppose that is because you are less likely to get a “rush” from taking a large dose as there is a delay while the drug is converted to active form. It also apparently makes it last longer (all this from Wikipedia). That it has been studied in ME/CFS is interesting, but I don’t think we should think this drug is any more specific to ME/CFS than any other amphetamine-like stimulant.
My personal concern and experience is that use of stimulants makes me use more energy than I can afford to in the long run. Occasional use is helpful when needed in a tight spot.
My opinion is that if you want to try amphetamine-type stimulants, why not try one of the old, cheaper generic ones (plain dextro-amphetamine, amphetamine salts or methylphenidate or one of the extended-release versions of such)?
Thank you for this great article. I see it started quite a bit of a discussion.
Could we treat ADHD without poping pills ? I think we can.
I’m on Armodafinil (profiginil) 250 mg a day and Vyvanse 60 mg. But, I still feel exhausted. Not sleepy, but my body feels “done in” or “blah”.
I have Fibromyalgia, Hypersomnia and sleep apnea.
It took me about 2 years to get my Dr to “allow” me to try the Vyvanse.
Does anyone think that an older type drug like Ritalin would work better.
Because I “am” helped “some only” with taking both of those drugs. I still feel fatigued.
What’s the dose of Vyvanse THST anyone is on that ACTUALLY works for them to increase their energy/want to be motivated.
I am STILL unmotivated.
Any input would be appreciated.
Thankyou
How do you get a doctor to give you armofafinil & a higher dose of vyvanse? I’ve been on Adderall XR 30mg 2x per day but that’s the highest dose of stimulants I’ve ever been on over 6 years of stimulants and now I’m on only 30mg of vynanse which doesn’t cut it at all since 30mg of vyvanse is only equal to 11.8mg of Adderall… anyway I was just curious thank you
I take Adderall XR currently but have found over the years I am at the top dose and it’s not working as much anymore. I take it for extreme fatigue because of MS. Does Vyvanse help with this as well? And does it tend to fade out over time like the Adderall is? Thanks
I think everyone is different, but for me; a resounding yes.
I was Dx with MS in 2008, due to numbness/extreme fatigue. My first symptom 7 years earlier was L’hermitte’s sign (electric shock through body when lowering head), but apparently, the fatigue had always been there, just thought I was lazy. The “sign” disappeared the entire time I was pregnant with youngest, then dropped me like an anvil when baby was 2m. Went to see neuro who proceeded to try and Dx me with post partem, even tho his gyno wife referred me due to “the sign” returning along with debilitating fatigue. I swore off all neuros bc they obviously weren’t taking me seriously. Anyway, a visit to a chiro for numbness & “the sign”, which led to another neuro referral who then told me he was so sure I didn’t have MS due to my level of mobility, he was willing to bet his next 2 paychecks on it. But, he would “humor me” with an MRI as a favor to his friend (the chiro). That MRI showed extensive lesions on brain and spinal cord & “significant multiple sclerosis activity”. Bet you already know I didn’t get those checks 😉.
By 5 years later, I was barely a shell of my former self. They like to say it’s because I chose to go the natural treatment route and refused the injections. Maybe so, but a recent MRI showed ZERO new activity/lesions, even though several MRIs in between showed the old lesions as active. Third neuro was a saint and wonderful doc! He listened to me intently and prescribed vyvanse 30mg and I’ve been on that since 2015. It’s allowed me to get a job and KEEP it. Allowed me to get my yard right and have a relationship with my loved ones. During the few years before taking it, the only relationship I had was with my pillow, my couch and the TV.
Recently, my neuro left the clinic, replaced by another WONDERFUL doc, who also left and I was forced to depend on GPs to prescribe. That’s worked out ok since 2020, but now I’m forced to find someone to prescribe it again because my GP is now gone. Maybe I need a new clinic? Idk, but I’ve been crying all day since I’m out of vyvanse Tuesday and still don’t have a doc.
I’m so upset that I may have to return to my semi-vegetative state in a few months once it gets completely out of my system. But, yes it works. For me at least.
Wow. Congratulations on finding Vyvanse and thanks for sharing your experience and good luck finding another doctor. Since there was a clinical trial that worked and you’ve had good experience with it hopefully it won’t be hard to get another prescription. 🙂
My theory as a person who suffers with fibromyalgia, the answer to the question posed in the article on no-one knows how a stimulant can help relieve pain is this. The pain is from overactive pain nerves since stimulants can calm down people with hyperactivity the exact same theory could be said that stimulants can calm down overactive nerves. Therefore if the nerves are no longer overactive it would equal relief of the pain associated with it.
What if the chronic fatigue, as in my case, is in part because of poor sleep? It would seem that in this case a stimulant would worsen both sleep and anxiety.
My son is 18 and was diagnosed with ADHD combined type. He has had CFS for a year and 2 months now after a bout of Epstein Barr Glandular fever (mono). I carefully researched stimulants and believed they would work for him, mostly because of the dopamine enhancing effect. After starting Vyvanse 20mg and having a flare of his MCAS symptoms (intense itching) he is on a low dose Ritalin, 2.5mg 3 times per day and it is really great for him. It’s responsible for bringing him from severe and housebound but not bed bound to moderate and taking a daily walk! The effect of the Ritalin on his brain fog is lasting even on days when he doesn’t take it (because he has a cold or just prefers to have a break), despite the fact that the drug wears off after 4 hours. He also takes LDN and Florinef, CoQ10 and D-ribose along with magnesium, mega multi vitamin/mineral (True Hope), Ashwaganda and L-theanine. He does better when he takes his Recovery Factors but these do tend to inflame his stomach somewhat. I hope others try Dex, Vyvanse, Ritalin and Modafinal at low doses because they are worth a try and there are no lasting effects if it doesn’t work.
Thanks Chrissy for sharing that. I hope to do an interview with the doctor who created the study.
I’ve had CFS/ME for nearly 30 years. Recently formally diagnosed with ADHD – mixed. My doctor put me on 30 Magog Vyvanse and I’ve noticed marked improvement in cognitive, motivation and energy. But because I’m very aware of the pacing importance for my body, I googled “CFS/ME and Vyvanse” to see if I there were any longer term negative effects. This page was one of the first to pop up. I’m grateful for the study. Has there been any newer research done on this?
Not that I know of but the same doctor that did that study has begun another one with another stimulant in ME/CFS.
Dr. Cort Johnson, is there anything that can reduce the fatigue of not being able to stay in bed and sleep
Hi, I am a desperate Mother in the U.K. My daughter died 9 years ago and my only remaining child, Oliver, has been diagnosed with ME which has worsened considerably from mild to severe, after a period of overwork. He has now been housebound for over two months with severe reactive depression, as he has no life. We are aware that the USA is decades ahead of us with medical research and treatments, and have read the drug trials, carried out in the U.S treating ME/CFS with Vynvase/Lisdexamfetamine. However, we cannot find a single psychiatrist here in the U.K, prepared to prescribe it as it is not recommended by NICE for ME. It is recommended here for binge eating and ADHD and regularly given ti chikdren with ADHD. Is there any way we can get the drug prescribed in the U.S and sent to my son?
Yours in hope,
Rosie
I don’t know but Health Rising will soon feature a blog on role that stimulants in general may be able to play in ME/CFS – most of which should be available over there I would think 🙂