I agree Lily. On days I am bed bound I simply WILL NOT take it. It would not work anyway. Not when your down like that. You would just be lying there with your mind ticking away and your heart beating faster. No fun
Adderall for Energy Boost in ME/CFS: January 15, 2010
- Thread starter myronhoffman
- Start date
K
(methylphenidate = Ritalin)
Does Methylphenidate Reduce the Symptoms of Chronic Fatigue Syndrome?
D. Blockmans, et al.
American Journal of Medicine (2006) 119, 167.e23-167.e30
ABSTRACT
PURPOSE: Chronic fatigue syndrome is a clinical entity consisting of prolonged and debilitating fatigue in which concentration disturbances are very frequent. Until now, no medical treatment has shown any efficacy. The objectives of this study were to investigate the short-term effects of methylphenidate, an amphetamine derivative, on fatigue, concentration disturbances, and quality of life.
SUBJECTS AND METHODS: A double-blind randomized placebo-controlled crossover study was conducted in 60 patients who fulfilled the 1994 Centers for Disease Control criteria for chronic fatigue syndrome and had concentration difficulties. Patients were enrolled between March 2003 and March 2004 at the outpatient department of a university hospital referral center for chronic fatigue syndrome patients. Random assignment to 4 weeks treatment with methylphenidate 2 10 mg/day, followed by 4 weeks of placebo treatment, or 4 weeks of placebo treatment, followed by methylphenidate treatment. Fatigue and concentration were measured with a Checklist Individual Strength (CIS) and a Visual Analogue Scale (VAS).
RESULTS: Fatigue scores fell significantly during methylphenidate intake in comparison with baseline (mean difference: – 0.7, P = .010 for VAS; mean difference: – 11.8, P < .0001 for CIS) and in comparison with placebo (mean difference: – 1.0, P = .001 for VAS; mean difference: – 9.7, P < .0001 for CIS). Concentration disturbances, measured with a VAS improved significantly under methylphenidate treatment compared with baseline (mean difference: – 1.3, P < .0001) and compared with placebo (mean difference: – 1.1, P < .0001). A clinical significant effect (≥ 33% improvement or CIS ≤ 76) on fatigue was achieved in 17% of patients, who were considered responders; on concentration in 22% of patients.
CONCLUSIONS: Methylphenidate at a dose of 2 10 mg/day is significantly better than placebo in relieving fatigue and concentration disturbances in a minority of chronic fatigue syndrome patients. Further studies are needed to investigate the long-term effects of this treatment.
Does Methylphenidate Reduce the Symptoms of Chronic Fatigue Syndrome?
D. Blockmans, et al.
American Journal of Medicine (2006) 119, 167.e23-167.e30
ABSTRACT
PURPOSE: Chronic fatigue syndrome is a clinical entity consisting of prolonged and debilitating fatigue in which concentration disturbances are very frequent. Until now, no medical treatment has shown any efficacy. The objectives of this study were to investigate the short-term effects of methylphenidate, an amphetamine derivative, on fatigue, concentration disturbances, and quality of life.
SUBJECTS AND METHODS: A double-blind randomized placebo-controlled crossover study was conducted in 60 patients who fulfilled the 1994 Centers for Disease Control criteria for chronic fatigue syndrome and had concentration difficulties. Patients were enrolled between March 2003 and March 2004 at the outpatient department of a university hospital referral center for chronic fatigue syndrome patients. Random assignment to 4 weeks treatment with methylphenidate 2 10 mg/day, followed by 4 weeks of placebo treatment, or 4 weeks of placebo treatment, followed by methylphenidate treatment. Fatigue and concentration were measured with a Checklist Individual Strength (CIS) and a Visual Analogue Scale (VAS).
RESULTS: Fatigue scores fell significantly during methylphenidate intake in comparison with baseline (mean difference: – 0.7, P = .010 for VAS; mean difference: – 11.8, P < .0001 for CIS) and in comparison with placebo (mean difference: – 1.0, P = .001 for VAS; mean difference: – 9.7, P < .0001 for CIS). Concentration disturbances, measured with a VAS improved significantly under methylphenidate treatment compared with baseline (mean difference: – 1.3, P < .0001) and compared with placebo (mean difference: – 1.1, P < .0001). A clinical significant effect (≥ 33% improvement or CIS ≤ 76) on fatigue was achieved in 17% of patients, who were considered responders; on concentration in 22% of patients.
CONCLUSIONS: Methylphenidate at a dose of 2 10 mg/day is significantly better than placebo in relieving fatigue and concentration disturbances in a minority of chronic fatigue syndrome patients. Further studies are needed to investigate the long-term effects of this treatment.
K
Keep your dosage low (i.e., 20mg or less / day).
but... Do not take Ritalin / Adderall if you have heart problems or very high blood pressure.
Little worry about 'addiction' - simply not an issue for PWC.
but... Do not take Ritalin / Adderall if you have heart problems or very high blood pressure.
Little worry about 'addiction' - simply not an issue for PWC.
As you say, Levi, MAOI's can be quite dangerous and there are many drugs and foods that they cannot be used with, that doing so will can cause hypertensive crisis that can be lethal. Adderall does not fall into the category of an MAO, however. I was actually going to try selegiline, had the script and the patches and switched a lot of my other medications in order to try it, then changed my mind. However, if I really thought my problem was depression and it was non-responsive to other anti-depressants, I certainly would give the MAOI's a try. They are old, old drugs that worked well for depression back in the day and probably aren't used enough for major depressive disorders these days because of the danger. The older ones like Parnate and Nardil are cheap too.
My doc also prescribed Nuvigil last summer and gave me a bag of samples, but I sorta thought since the patent was about to expire on Provigil. they were just trying to put out a new drug that was similar in order to collect the big bucks. I guess I've sort of given up on trying anything new.....
My doc also prescribed Nuvigil last summer and gave me a bag of samples, but I sorta thought since the patent was about to expire on Provigil. they were just trying to put out a new drug that was similar in order to collect the big bucks. I guess I've sort of given up on trying anything new.....
There is a generic Aderall XR available in the US as of now. I think it was released in Sept. of 2009, but it seems to be getting very mixed reviews as to it's effectiveness compared to the "Shire" brand. When it goes generic, only the medical or drug components are generically available. The process used to create the "time released" component is considered to be a trade secret and "Shire" has the rights to it right now. Back to the generic - whatever process they are using to incorporate the "time released" component doesn't seem to be working for some people.
Interesting on the Adderall, Levi. It's prescribed very freely these days with the usual cautions about cardiovascular conditions, high blood pressure, glaucoma, etc, and of course it is contraindicated with an MAOI.
I have a wonderful psychiatrist who believed something was organically wrong and actually referred me to a couple of specialists, , one being a neurologist who diagnosed MS. He'd phone them and talk with them while I was there. If not for his creativity, I probably wouldn't have gotten what little help I did in order to keep working. He's an ace with combining meds that others wouldn't , but never talked about Adderall in relation to MAOIs other than of course they cannot be taken together, which I was well aware of. I should be clear as well that we were not working with depression either. I was adamant and so was he that this was not depression. At that time he suspected CFS, but then with the MS diagnosis we were trying to affect what we were being told was MS-fatigue, which neither of us felt was a fit either.
In fact I took Adderal with many foods and meds that would be contraindicated with an MAOI. Adderall is certainly contraindicated when taking MAOIs and it's one thing I REALLY didn't want to give up in order to take the Seligiline. Oh, I frequently used Darvocet as well for FM, not very helpful, but better than nothing - and it is contraindicated with MAOI's so I was going to switch to Vicodin, which made he horrendously nauseous. I was really kind of on my last leg by then, but I was hoping to be able to continue some part-time special projects for the company I'd worked for for 21 years. So I kind had myself convinced to make some drastic changes, but in the end decided it was too much change and I should just hobble along as long as possible. Are you considering trying Seligiline?
Now that you mention the Nuvigil and the coffee incompatibillity - I'm afraid that would have been a deal breaker for me too . Interesing that you found quite a difference between Nuvigil and Provigil. How so? Many people seem to tolerate it (Provigil) so well and I really wanted it to work.
I have a wonderful psychiatrist who believed something was organically wrong and actually referred me to a couple of specialists, , one being a neurologist who diagnosed MS. He'd phone them and talk with them while I was there. If not for his creativity, I probably wouldn't have gotten what little help I did in order to keep working. He's an ace with combining meds that others wouldn't , but never talked about Adderall in relation to MAOIs other than of course they cannot be taken together, which I was well aware of. I should be clear as well that we were not working with depression either. I was adamant and so was he that this was not depression. At that time he suspected CFS, but then with the MS diagnosis we were trying to affect what we were being told was MS-fatigue, which neither of us felt was a fit either.
In fact I took Adderal with many foods and meds that would be contraindicated with an MAOI. Adderall is certainly contraindicated when taking MAOIs and it's one thing I REALLY didn't want to give up in order to take the Seligiline. Oh, I frequently used Darvocet as well for FM, not very helpful, but better than nothing - and it is contraindicated with MAOI's so I was going to switch to Vicodin, which made he horrendously nauseous. I was really kind of on my last leg by then, but I was hoping to be able to continue some part-time special projects for the company I'd worked for for 21 years. So I kind had myself convinced to make some drastic changes, but in the end decided it was too much change and I should just hobble along as long as possible. Are you considering trying Seligiline?
Now that you mention the Nuvigil and the coffee incompatibillity - I'm afraid that would have been a deal breaker for me too . Interesing that you found quite a difference between Nuvigil and Provigil. How so? Many people seem to tolerate it (Provigil) so well and I really wanted it to work.
Dextroamphetamine
Abstract
There is an evidence that increased capillary permeability in the standing position is related to a deficit in the sympathetic nervous system. The leakage of this fluid leads to various clinical conditions which frequently puzzle the consulting physician because despite the frequency of this condition intelligent physicians and patients are unaware of the cause of their condition. One of the most common manifestations is the inability to lose weight despite proper dieting. A randomized study comparing the efficacy of a diuretic, a converting enzyme inhibitor, spironolactone and a sympathomimetic amine on weight loss in diet refractory women found that only the latter in the form of dextroamphetamine sulfate demonstrated significant weight reduction over a six month time span. In fact, the dextroamphetamine sulfate proved effective when given in the next 6 months to the three groups failing to respond for the first 6 months. The diagnosis of a deficit in sympathomimetic amines is established by demonstrating an abnormal clearance of a water load in the erect position and exclusion of other conditions that are associated with an abnormal free water clearance, e.g., hypothyroidism, renal or liver disease or congestive heart failure. The original definition of an abnormal water load test was excretion of <55% of a 1500ml water load in 6h but we found that <75% defines a greater population who suffer from this problem. There are several conditions that have proven refractory to conventional theory that respond quickly and effectively to sympathomimetic amines. There have been many anecdotal reports of relieving interactable pain syndromes quickly and efficiently with sympathomimetic amine theory, despite failure with a multitude of other therapies. These include interstitial cystitis and pelvic pain that was attributed to endometriosis, gastrointestinal pain including esophagitis and gastroparesis, headaches, joint pain, fibromyalgia, and carpal tunnel syndrome. It is not clear if the improvement in pain is related to a decrease in fluid retention or a direct effect of the sympathomimetic amines on the sympathetic nervous system. Sympathomimetic amine theory has helped other conditions besides pain, e.g., chronic fatigue, vasomotor symptoms in young women not associated with decreased ovarian egg reserve, and chronic urticaria resistant to all other therapies. Thus, these studies strongly suggest that physicians be aware of this condition involving a deficit in the sympathetic nervous system when faced with various enigmatic complaints especially if standard therapy has not proven effective.
I copied the above. I was on a much higher dose but find that I do not need much to help the dysautonomia. When I wake up I take it first thing and then lay down for an hour. The extra energy buzz that you get from it only lasts for a few months- thats where the addictive part would come in, you would need to take more. But as far as the dysautonomia is concerned a small dose of the sr has been very helpful for me.
Abstract
There is an evidence that increased capillary permeability in the standing position is related to a deficit in the sympathetic nervous system. The leakage of this fluid leads to various clinical conditions which frequently puzzle the consulting physician because despite the frequency of this condition intelligent physicians and patients are unaware of the cause of their condition. One of the most common manifestations is the inability to lose weight despite proper dieting. A randomized study comparing the efficacy of a diuretic, a converting enzyme inhibitor, spironolactone and a sympathomimetic amine on weight loss in diet refractory women found that only the latter in the form of dextroamphetamine sulfate demonstrated significant weight reduction over a six month time span. In fact, the dextroamphetamine sulfate proved effective when given in the next 6 months to the three groups failing to respond for the first 6 months. The diagnosis of a deficit in sympathomimetic amines is established by demonstrating an abnormal clearance of a water load in the erect position and exclusion of other conditions that are associated with an abnormal free water clearance, e.g., hypothyroidism, renal or liver disease or congestive heart failure. The original definition of an abnormal water load test was excretion of <55% of a 1500ml water load in 6h but we found that <75% defines a greater population who suffer from this problem. There are several conditions that have proven refractory to conventional theory that respond quickly and effectively to sympathomimetic amines. There have been many anecdotal reports of relieving interactable pain syndromes quickly and efficiently with sympathomimetic amine theory, despite failure with a multitude of other therapies. These include interstitial cystitis and pelvic pain that was attributed to endometriosis, gastrointestinal pain including esophagitis and gastroparesis, headaches, joint pain, fibromyalgia, and carpal tunnel syndrome. It is not clear if the improvement in pain is related to a decrease in fluid retention or a direct effect of the sympathomimetic amines on the sympathetic nervous system. Sympathomimetic amine theory has helped other conditions besides pain, e.g., chronic fatigue, vasomotor symptoms in young women not associated with decreased ovarian egg reserve, and chronic urticaria resistant to all other therapies. Thus, these studies strongly suggest that physicians be aware of this condition involving a deficit in the sympathetic nervous system when faced with various enigmatic complaints especially if standard therapy has not proven effective.
I copied the above. I was on a much higher dose but find that I do not need much to help the dysautonomia. When I wake up I take it first thing and then lay down for an hour. The extra energy buzz that you get from it only lasts for a few months- thats where the addictive part would come in, you would need to take more. But as far as the dysautonomia is concerned a small dose of the sr has been very helpful for me.
I feel like I'm always seeing studies which show certain drugs have a positive impact for a minority of CFS patients, but there never seems to be any follow up on how to identify which minority would be most likely to benefit! I want to know if I'm part of that minority - but don't really want to be going through a pick 'n' mix of medication to find out.
ps: thanks for digging up that abstract Kim.
ps: thanks for digging up that abstract Kim.
I just remembered this am something my dysautonomia doc said about adderall--maybe some of you know more about what this means--I am just parroting the words. He said it stimulated the reticular activating area in the brain. Anyone?:innocent1:
From Wiki: "Attention
The reticular activating system also helps mediate transitions from relaxed wakefulness to periods of high attention.[6] There is increased regional blood flow (presumably indicating an increased measure of neuronal activity) in the midbrain reticular formation (MRF) and thalamic intralaminar nuclei during tasks requiring increased alertness and attention."
Sushi
From Wiki: "Attention
The reticular activating system also helps mediate transitions from relaxed wakefulness to periods of high attention.[6] There is increased regional blood flow (presumably indicating an increased measure of neuronal activity) in the midbrain reticular formation (MRF) and thalamic intralaminar nuclei during tasks requiring increased alertness and attention."
Sushi
Sushi
Thanks for that bit of info. Very interesting. I definitely helps me with brain/thinking/alertness except if I am having a crash, then as I said before the CFS over rides all things
Thanks for that bit of info. Very interesting. I definitely helps me with brain/thinking/alertness except if I am having a crash, then as I said before the CFS over rides all things
Sushi
Since I did not know what dysautonomia was, I looked it up. I think this is a huge part of my CFS. What I read was that in a normally functioning body the 2 components of the autonomic nervous system, the sympethetic & parasympathetic , are in perfect balance from moment to moment & can go from one to the other instantly as needed.
That process is totally way out of kilter in me. Sushi is there really such a thing as a dysautonomic doc? I would like to hear more about what your experience with this has been and any ways you may be treating/dealing with it. If its too off topic, maybe it should be a new thread?? Or you could PM me.
This gives me an idea for that never ending dilemma of what tell people or how do you explain your CFS to people, new people or people you know will roll their eyes. From now on I am going to say I have Dysautonomia!
Since I did not know what dysautonomia was, I looked it up. I think this is a huge part of my CFS. What I read was that in a normally functioning body the 2 components of the autonomic nervous system, the sympethetic & parasympathetic , are in perfect balance from moment to moment & can go from one to the other instantly as needed.
That process is totally way out of kilter in me. Sushi is there really such a thing as a dysautonomic doc? I would like to hear more about what your experience with this has been and any ways you may be treating/dealing with it. If its too off topic, maybe it should be a new thread?? Or you could PM me.
This gives me an idea for that never ending dilemma of what tell people or how do you explain your CFS to people, new people or people you know will roll their eyes. From now on I am going to say I have Dysautonomia!
Juniemarie,
Yes there are dysautonomia specialists though not very many and most have long waiting lists. This was my first diagnosis, so I worked with a dys doc first. Trouble is, though there is a huge crossover between dysautonmia and CFS, most of the dys docs only know drugs. My doc knew drugs very, very well--from his own specialization and experience and though he helped me to get my raging symptoms under control, when I could function better I wanted to treat root causes. He agreed, but didn't know anything but allopathic medicine (he respected other routes, just couldn't guide me there). So eventually I did my own research and have done very well with other methods of treatment. I'll PM you details, as I have posted bits and pieces on different threads.
Cort has a great article (somewhere on this site!) about dysautonomia. It is in 3 parts and the title is something like: "The Perils of Standing" --sorry Cort couldn't figure out how to find it!
And yes, I use dysautonomia as my "what to tell people" as it sounds impressive and mysterious and usually shuts people up!
Best,
Sushi
Yes there are dysautonomia specialists though not very many and most have long waiting lists. This was my first diagnosis, so I worked with a dys doc first. Trouble is, though there is a huge crossover between dysautonmia and CFS, most of the dys docs only know drugs. My doc knew drugs very, very well--from his own specialization and experience and though he helped me to get my raging symptoms under control, when I could function better I wanted to treat root causes. He agreed, but didn't know anything but allopathic medicine (he respected other routes, just couldn't guide me there). So eventually I did my own research and have done very well with other methods of treatment. I'll PM you details, as I have posted bits and pieces on different threads.
Cort has a great article (somewhere on this site!) about dysautonomia. It is in 3 parts and the title is something like: "The Perils of Standing" --sorry Cort couldn't figure out how to find it!
And yes, I use dysautonomia as my "what to tell people" as it sounds impressive and mysterious and usually shuts people up!
Best,
Sushi
Way to Go Sushi. I am going to look for Kurt's article. He just provided me with some very interesting info on another thread. Hope I can find it with the crappy search tool this forum has! I Pm'd you an answer to your other question
Sorry, you said Cort I will search again. I had just posted a message to Kurt and well.......you know how it is! It got stuck in my mind
Juniemarie,
I don't think the article is on the forum, but somewhere on Phoenix Rising--at least it used to be there in the site's earlier incarnation. I couldn't see how to search the site, though I didn't spend much time trying! I thought it was one of the best articles on dysautonomia I have read--thanks Cort!
Sushi
I don't think the article is on the forum, but somewhere on Phoenix Rising--at least it used to be there in the site's earlier incarnation. I couldn't see how to search the site, though I didn't spend much time trying! I thought it was one of the best articles on dysautonomia I have read--thanks Cort!
Sushi
K
Esther, you're very welcome.
My suggestion (as a patient only): it's safe to give this one a try (Ritalin or Adderall, generic or not). Start with small dosage, even 5-10mg, you'll feel it's effect, and any distressing side effects, if you have any. Then you will know if it's ok for you. Only caveat, don't do this if you have heart condition or very high blood pressure, please.
Only distressing side effect that I've found is a very quick drop in energy when generic Ritalin wears off, almost like being washed over with sudden depression, can feel very destabilising and worrisome. Ritalin generic works fast, then stops working fast, within about a 5 hour time frame. Adderall generic ramps up and down a bit more slowly, over about 7-8 hours. Brand name meds are better, esp. XR versions, but generic all I can afford for now, and just fine for me now that I've sorted out the timing/dosages issues.
My suggestion (as a patient only): it's safe to give this one a try (Ritalin or Adderall, generic or not). Start with small dosage, even 5-10mg, you'll feel it's effect, and any distressing side effects, if you have any. Then you will know if it's ok for you. Only caveat, don't do this if you have heart condition or very high blood pressure, please.
Only distressing side effect that I've found is a very quick drop in energy when generic Ritalin wears off, almost like being washed over with sudden depression, can feel very destabilising and worrisome. Ritalin generic works fast, then stops working fast, within about a 5 hour time frame. Adderall generic ramps up and down a bit more slowly, over about 7-8 hours. Brand name meds are better, esp. XR versions, but generic all I can afford for now, and just fine for me now that I've sorted out the timing/dosages issues.
K
Interesting abstract, thank you glenp.
but PLEASE could you kindly post the entire citation for the article too - so that interested readers may track down the original article.
Author
Full title of article
Journal name
Volume number
Year
Or if you read the abstract online somewhere, might you post the web address?
Thank you again, glenp
but PLEASE could you kindly post the entire citation for the article too - so that interested readers may track down the original article.
Author
Full title of article
Journal name
Volume number
Year
Or if you read the abstract online somewhere, might you post the web address?
Thank you again, glenp
K
Agreed. Useless if you're in a crash, me too.
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I saw a wonderful psychopharm, who was also a sleep specialist. He gave me Provigil, which made me severely nauseated. Then ritalin, which did the same and also gave me fluish side efffects. Adderall did the same. When I taught school I had students on ritalin for hyperactivity and some had to be taken off of it because they lost their appetites, stopped eating and stopped growing. I recognized the same side effects. I do trust this doc implicitly. Unfortunately, there was a political shakeup in his hospital and he can only do research now. This has nothing to do with CFS, just massacre type politics.
I was on Adderall for ADD before developing CFS/ME. I realized something was wrong when the morning dose didn't give me that get up and go feeling, so I quit using it for more than a year. During that time my symptoms just slowly and gradually became worse, despite trying pretty much everything. For a long time I was pretty certain
I went back on it and it helped a lot, but like others have mentioned it did give me a false sense of energy, and I'd end up using too much and regretting it for the next three or four days.
Then I found an interesting thread here about opiates wiping the fatigue, brain fog, and creating a shield that prevents PEM. I haven't been able to get a script for them yet, but using old vicoden from a wisdom tooth removal basically worked a miracle for me. So I've been trying to get them where I can, risk of dependency be damned.
The mix of Adderall and an opiate is essentially a godsend. The Adderall helps with the brain fog and gives a slight boost of get-up-and-go, while the opiate prevents PEM and basically erases that really strange pain from the fatigue. The right balance of meds gives me the ability to do things all day long and have no consequences the next day.
It isn't perfect, however.
Firstly, like many of us I'm sensitive to medication. I've tried various antidepressents and even at miniscule doses I end up absolutely slathered in side effects. The doses of adderall and opiates required to have a positive effect take a couple of days to work up to because my system has to adjust. If I've been out of meds then I can count on an intense migraine for the first day I start taking them again, and another for the second. The third day is less intense, and from then on I can pretty much dose as needed without consequence. I also take various supps.
Another issue is that strangely, taking Adderall can increase the FEELING of some aspects of the fatigue, yet increase my ability in that same area. For example I may FEEL more fogged one day, but if I sit down and do a crossword or try to write the words come easily. One time I felt physically weaker, but before I took meds I was unable to break a pill in half and after it was easy. Somehow the feeling lies. I find this very strange and if anyone has an explanation for it I would be very intrigued.
Also, if anybody has any other clues regarding things that magically prevent PEM other than opiates I'd be really grateful to know of them! I'd prefer not to form a long term physical dependence if I don't have to. But if it's the only thing that works? Worth it.
Some further concerns and questions:
1) Does the chemical function of Adderall overlap at all with the mitochondrial malfunction in CFS? In other words, does the Adderall force the mitochondria into overaction and will this in turn accelerate the speed at which the illness progresses?
2) Does the Adderall use up stores of fuel that are also needed by the mitochondria, and if so, what are they? What are the best supplements and diet requirements to replace this fuel?
For a point of reference, without meds I'm sitting around 70% on the AYME ability scale (it fluctuates either direction), which according to them is just crossing into "moderate". So it may be that this kind of thing won't work for others, I don't know.
I'd be very fascinated to know if this kind of thing has worked for others and if it can help long term or if this leads directly to being bedridden?
Thanks for taking time to read my super long post. I just wanted to put down an in-depth reply for all of you who asked.
I went back on it and it helped a lot, but like others have mentioned it did give me a false sense of energy, and I'd end up using too much and regretting it for the next three or four days.
Then I found an interesting thread here about opiates wiping the fatigue, brain fog, and creating a shield that prevents PEM. I haven't been able to get a script for them yet, but using old vicoden from a wisdom tooth removal basically worked a miracle for me. So I've been trying to get them where I can, risk of dependency be damned.
The mix of Adderall and an opiate is essentially a godsend. The Adderall helps with the brain fog and gives a slight boost of get-up-and-go, while the opiate prevents PEM and basically erases that really strange pain from the fatigue. The right balance of meds gives me the ability to do things all day long and have no consequences the next day.
It isn't perfect, however.
Firstly, like many of us I'm sensitive to medication. I've tried various antidepressents and even at miniscule doses I end up absolutely slathered in side effects. The doses of adderall and opiates required to have a positive effect take a couple of days to work up to because my system has to adjust. If I've been out of meds then I can count on an intense migraine for the first day I start taking them again, and another for the second. The third day is less intense, and from then on I can pretty much dose as needed without consequence. I also take various supps.
Another issue is that strangely, taking Adderall can increase the FEELING of some aspects of the fatigue, yet increase my ability in that same area. For example I may FEEL more fogged one day, but if I sit down and do a crossword or try to write the words come easily. One time I felt physically weaker, but before I took meds I was unable to break a pill in half and after it was easy. Somehow the feeling lies. I find this very strange and if anyone has an explanation for it I would be very intrigued.
Also, if anybody has any other clues regarding things that magically prevent PEM other than opiates I'd be really grateful to know of them! I'd prefer not to form a long term physical dependence if I don't have to. But if it's the only thing that works? Worth it.
Some further concerns and questions:
1) Does the chemical function of Adderall overlap at all with the mitochondrial malfunction in CFS? In other words, does the Adderall force the mitochondria into overaction and will this in turn accelerate the speed at which the illness progresses?
2) Does the Adderall use up stores of fuel that are also needed by the mitochondria, and if so, what are they? What are the best supplements and diet requirements to replace this fuel?
For a point of reference, without meds I'm sitting around 70% on the AYME ability scale (it fluctuates either direction), which according to them is just crossing into "moderate". So it may be that this kind of thing won't work for others, I don't know.
I'd be very fascinated to know if this kind of thing has worked for others and if it can help long term or if this leads directly to being bedridden?
Thanks for taking time to read my super long post. I just wanted to put down an in-depth reply for all of you who asked.