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#719224 - 06/25/08 10:15 AM whats best for fibro fatigue?
moodylee Offline
Member

Registered: 03/23/05
Posts: 134
any ideas out there on what actually works for the severe fatigue that comes day after day?. i heard provigil would be really good,but no insurance will cover it,so no doctor will even prescribe it.anyone get prescribed phentermine? ive tried adderall,it made me twice as tired, and ritalin worked for awile,but makes me tired as well.any ideas??im not talking a little bit of fatigue,its severe,that days i feel like i just cant go on at all.i have a hyper son diagnosed with autistic/sprectrum disorder,so i have to keep up with him.

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#719341 - 06/25/08 01:35 PM Re: whats best for fibro fatigue? [Re: moodylee]
neofate Offline
Pooh-Bah

Registered: 10/30/02
Posts: 1393
Loc: Southern, US
It depends on the nature of your fibromyalgia. Generally B12 shots in high doses are a good start. It should also be attempted "long term" to work on aerobic conditioning. You become de-conditioned (or out of shape) over time of not being active with this disease. Some patients can go faster than others.. but a regimen to work up to 30mins of low impact aerobic exercise is key. Don't misunderstand me, this has to be worked up to by many. IE: 6-12months to achieve an average of 30mins a day. Perhaps split up to two 15 minute sessions. It is a slow process, but pays off in the end if one is diligent.

There exist some patients who flare with any activity, but if that were you I don't think you could take care of your child. So be thankful.

What else..

NADH works well with B12 -- Look it up if your interested in it or haven't tried it. Diet plays a key role in fibro patients as well as everyday individuals.

Unfortunately there is no magic pill.. there isn't a magic pill for most anything. It is usually a combination of techniques and simple therapies that synergistically help combat fatigue,.. and they probably won't give 100% relief, but some help is expected if a good regimen is followed and monitored.

If it hasn't been considered yet.. Wellbutrin or a non-sedating SSRI is often used. Ritalin, Dexedrine, and Adderall are staples to combat the fatigue, but there are inherent risks with them and they aren't easy to become prescribed. You actually report these amphetamines don't do the job for you, so in my opinion you need to look at other things.

First, modafinil (Provigil), should definitely be prescribed.. try it even without insurance. If it works, figure out a way to use it. It has much less abuse potential and works in a very different way than Ritalin or any other amphetamine. It could be your saving grace, it is worth a try. Perhaps you could find a Doc with a sample pack,.. or a small script to try it for a week.

Then you need to look at your Sleep. Make sure it is restorative, no apnea's, adequate amounts and so forth. With CFS/Fibro you really have to take care of yourself... more so than someone without, of course. Much study is being conducted right now, and as the disease becomes more and more 'accepted' treatment will progress.

Hopefully that might spur some ideas,.. but if you haven't tried provigil, I'm sure you can work out a way to sample it.

Good luck,
_________________________
-/\/eofate

"Efforts and courage are not enough, without purpose and direction."

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#719528 - 06/25/08 09:55 PM Re: whats best for fibro fatigue? [Re: moodylee]
unizee Offline
Member

Registered: 03/01/08
Posts: 179
Neofate has offered some wise and considered thoughts. Fibromyalgia is still considered by many doctors to be a "histrionic" type of disease of women and is often not taken seriously, therefore leaving sufferers to self-medicate. I note that you've tried amphetamine salts and amphetamine derivatives with success ranging from "none" to "some."

Neofate said:
 Quote:
If it hasn't been considered yet.. Wellbutrin or a non-sedating SSRI is often used. Ritalin, Dexedrine, and Adderall are staples to combat the fatigue, but there are inherent risks with them and they aren't easy to become prescribed.


Of course, keep in mind that there are inherent risks and side effects of any medication. It's up to you (or you and your doctor) to decide if the benefits outweigh those risks. In this case it would be mostly up to you since it is difficult to find a doctor to prescribe these types of meds.

 Quote:
You actually report these amphetamines don't do the job for you, so in my opinion you need to look at other things.


Neofate again has a point, but first remember that not all medications in the same class are equal. You've not tried phentermine and it might be the one that helps you. There are also other medications similar to phentermine with subtle differences that you can try. My caveat to you would be that these meds tend to build a tolerance very quickly so it might be considered to be used on a p.r.n. basis instead of as a maintenance med.

Good luck to you.

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#725428 - 07/08/08 02:22 PM Re: whats best for fibro fatigue? [Re: unizee]
jehza1 Offline
Veteran

Registered: 02/28/08
Posts: 494
Loc: Southwest US
I've taken Provigil, though not for fibro, and it certainly has a different component to it than does any of the other traditional stimulants that I have tried. It worked quite well for me for quite awhile, and then suddenly quit. I took it for about six months, at first 100 mg a day and gradually increased my dosage to 200mgs.

I mention this as you cited that you have been unsuccessful with other stimulants. Provigil (and it's isolated isomeric cousin, Anafril, (I know that I misspelled that, but you can get in generic outside the U.S.) are used by many fibro patients for the very thing you are looking for-energy. In my esteem, it is the best "stimulant" drug out there- as there are less associated risks and abuse potential with it, and really, truth be told, when it worked, was the most effective thing that I ever took for ADHD.

It also did seem to increase my energy quite a bit, but I wouldn't advise taking it with caffeine. I mistakenly took it and had a cup of coffee and the two together caused me to become very "nervous" in the traditional stimulant sense-fidgety, anxious, hyper vigilant ect.

It's a very expensive medication. If you have been diagnosed with sleep apnea or shift work disorder, you can apply through N.O.R.D. and if you qualify, you will get the medication for free. Many doctor's are willing to fabricate such "diagnoses" to get their patient's the medication that they need, as it is being prescribed "off label" for things like fibro, MS, depression and ADHD quite regularly now.

This is something that I saw happen on countless occasions at the mental health clinic that I interned at, which in my esteem, was not ethically unsound as these patients needed the medication but did not have the 1200 every three months necessary to pay for said script.

If you are low income (I'm not sure what the cut off is, as I did not process the paperwork) you may indeed qualify for "free" Provigil. It really is a shame that it is so expensive as it such a good alternative to Ritalin or Adderall, yet since Cephalon still holds the patent, and will for another year or two I think, one must either pay their (ridiculous) price, risk importing from an IOP, or look for some sort of assistance in paying for the medication as I know few people who can afford 300+ a month for a single prescription, especially one deemed a "lifestyle" drug.

I think it worth a try, at the very least. You can go to Provigil's website and download a certificate for a seven day free trial, and see if it works for you. From there, maybe your doctor can help you out with samples on occasion, or you can just buy as many pills as you can afford and use them for when you really feel fatigued.

Hope that helps somewhat,
J
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#725433 - 07/08/08 02:30 PM Re: whats best for fibro fatigue? [Re: moodylee]
Ruggie Offline
GRAND Pooh-Bah

Registered: 03/25/04
Posts: 8800
Loc: Right Here
 Originally Posted By: moodylee
any ideas out there on what actually works for the severe fatigue that comes day after day?. i heard provigil would be really good,but no insurance will cover it,so no doctor will even prescribe it.anyone get prescribed phentermine? ive tried adderall,it made me twice as tired, and ritalin worked for awile,but makes me tired as well.any ideas??im not talking a little bit of fatigue,its severe,that days i feel like i just cant go on at all.i have a hyper son diagnosed with autistic/sprectrum disorder,so i have to keep up with him.


Fibro is known to have fatigue as a major symptom. Have you tried the medication that is now out specifically for fibro called Lyrica? I have also read that muscle relaxers such as Soma, Flexeril, Skelaxin, Zanaflex(zanaflex is a good one that even helps patients to sleep), etc.. also help and a muscle relaxer just may help the fatigue you are experiencing because it helps to relax the muscles in the body. Just a couple of thoughts that may help with the fatigue associated with Fibro.
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#725449 - 07/08/08 03:05 PM Re: whats best for fibro fatigue? [Re: jehza1]
nephro Offline
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Registered: 09/04/06
Posts: 10280
Loc: NOT 40!
 Originally Posted By: jehza1
Provigil (and it's isolated isomeric cousin, Anafril, (I know that I misspelled that, but you can get in generic outside the U.S.) are used by many fibro patients for the very thing you are looking for-energy.


Is this clomipramine? If so, what relationship does it have to modafinil?

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#725480 - 07/08/08 03:58 PM Re: whats best for fibro fatigue? [Re: nephro]
Bluefairy Offline
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Registered: 06/27/07
Posts: 1477
Loc: Deep in Dixie
I used Lyrica a couple of years ago with abdominal adhesion pain. I faithfully tried it for almost a year. It never helped much with the adhesions, and I noticed no help with my pain from fibro. (which I have as an addition to Lupus, not a stand alone diagnosis).

It is horribly expensive, and no generic exists.

It has been prescribed for all types of chronic pain around here for the last couple of years, with people told they have to take it for a matter of months before they will notice a significant difference.

My sis and I have both been prescribed it for adhesions, my mother and stepmom for diabetes nerve pain, my uncle for pain left over from a stroke, and one person I know for gout. I guess this new on-label use for Fibro is possibly that they noticed some help in some fibro patients who were taking it for other reasons.

From people I have talked to it seems to be most effective for nerve pain, rather than other types of chronic pain.

Then again, it may help that it is so expensive, you may feel like anything that costs that much has to help.
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#725497 - 07/08/08 04:22 PM Re: whats best for fibro fatigue? [Re: Bluefairy]
Ruggie Offline
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Registered: 03/25/04
Posts: 8800
Loc: Right Here
That is a shame that the Lyrica is so much money, especially if helps some patients with Fibro. This country has to start lower med costs, it is just so out of hand. But as we all know big pharma will always get their way in this country with prices, even when the med costs so much less than what we have to pay for them. But big pharma has the Gov't in their pockets. It is really sad. I think the US has the highest health care costs out of all the other country's. It has to stop. People are becoming homeless due to having having to pay their health care bills. Even doctors won't let anyone pay in payments, nope, they want it all up front, some even before you see the doctor.

Blue, have you ever tried a muscle relaxer, I don't know if they would help, but I am thinking that a muscle relaxer may help with the pains and fatigue, especially if it is pain that is like a spasm within the muscles.
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#725532 - 07/08/08 05:08 PM Re: whats best for fibro fatigue? [Re: nephro]
jehza1 Offline
Veteran

Registered: 02/28/08
Posts: 494
Loc: Southwest US
 Originally Posted By: nephro
 Originally Posted By: jehza1
Provigil (and it's isolated isomeric cousin, Anafril, (I know that I misspelled that, but you can get in generic outside the U.S.) are used by many fibro patients for the very thing you are looking for-energy.


Is this clomipramine? If so, what relationship does it have to modafinil?


Here's the drug I was referring to...I botched the spelling, it's called Adrafinil. As Provigil (mondafinil) is a racematic drug, a new synthesis of mondafinil, called ARMONDAFINIL is, I think, the "r" isomer to modafinil-it's much milder than Provigil (some people report nervousness, headaches, muscle tension as common side effects to Provigil). I know that Cephalon is going to launch an isolated isomer of mondafinil ( r-mondafinil or armondafinil) called NuVigil when the patent for Provigil expires in the U.S. It's supposed to be a cleaner version of Provigil.

Andrafinil, is a parent drug (or cousin, really) to mondafinil, and is already available in other parts of the world. I have read reports of this (andrafinil) being superior to mondafinil as well as reports of people saying that it did nothing for them at all.

I believe it's known in Europe as Olmifon

I got this off of a website, biogenesis anti-aging, that offers Olmifon.
"
Adrafinil / Olmifon Enhances Mental Clarity and Alertness.

Adrafinil / Olmifon improves brain chemical processes to boost alertness without affecting normal sleep patterns.

Adrafinil is part of a new class of drug called ‘eugeroics’, which means ‘good arousal’. Designed to promote vigilance and alertness, it is a stimulant and anti-depressant that helps to sharpen mental focus by enhancing the chemical processes within the brain without affecting heart rate or pressure.

Approved in many European countries for treating narcolepsy, a condition characterized by excessive daytime sleepiness and other unusual symptoms, Adrafinil has also been found to provide benefits to non-narcoleptic users. Generally, they find that Adrafinil gives them increased energy and reduces fatigue, while improving cognitive function, mental focus, concentration and memory. It has been reported that quiet people who take Adrafinil become more talkative, reserved people become more open and passive people become more active.

Compared with more familiar stimulants, ranging from caffeine to methamphetamine, Adrafinil is considered gentler because it provides similar benefits but with much less of the anxiety, agitation and insomnia associated with these conventional stimulants. In particular, Adrafinil’s unique ability to only arouse when stimulation is required means that the user is able to sleep when he or she wishes to.

The effect of Adrafinil, unlike conventional stimulants, builds subtly over a period of days to months. This appears to be based on its ability to selectively stimulate adrenergic receptors in the brain. These receptors normally respond to norepinephrine (noradrenaline), a neurotransmitter linked to alertness, learning, and memory. This is in contrast to conventional stimulants, which stimulate a broader spectrum of brain receptors, including those involving dopamine. Its more focused activity profile may account for Adrafinil's relative lack of adverse side effects. "

Basically, mondafinil and adrafininil are closely related, and both currently available in the global pharm market. Armondafinil, or NuVigil as it will be called in the U.S., is not yet available, but in clinical trials has less side effects than Provigil (according to Cephalon) as it is simply a cleaner version of mondafinil.

Confused yet? ;\)

Once NuVigil is launched, (and a subsequent generic of mondafinil becomes available) I'm sure that many more fibro patients will be prescribed this drug, as it will be on more insurance company's formularies.




Edited by jehza1 (07/08/08 05:37 PM)
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The average pencil is seven inches long, with just a half-inch eraser - in case you thought optimism was dead.

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#725779 - 07/09/08 08:55 AM Re: whats best for fibro fatigue? [Re: jehza1]
nephro Offline
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Registered: 09/04/06
Posts: 10280
Loc: NOT 40!
Right! I was led to Anafranil, which is a brand of clomipramine (prescribed for depression and OCD), but adrafinil is a generic name so won't be capitalised. Even so, the names are frighteningly similar, and I'm surprised the authorities have allowed this to happen. Less similar names have been forced to change due to fear of dispensing errors.

But if adrafinil is metabolised to modafinil (if The Wikipedia article is accurate) it can't really be a cleaner drug than modafinil.

Perhaps it's another case of Our drug's Gone Generic So Let's Bring Out One Just Like It syndrome.

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#725783 - 07/09/08 09:06 AM Re: whats best for fibro fatigue? [Re: moodylee]
vba195 Offline
Newbie

Registered: 08/03/07
Posts: 46
Moodylee, try an enzyme supplement called Wobenzym. Do a Google search of where to get it and compare prices. I get it at swansonvitamins.com. It will boost your energy and mental clarity. I will take this for the rest of my life, that's how good it works for me. Most people lack the proper enzymes needed to digest food, therefore the body borrows from different other parts, such as the immune system to aid digestion. Once you have the proper enzymes doing the job, your body can function the way it should. If you are considering it, find out for yourself what role enzymes play in our bodies. Amazing to me! Sorry to go on, but I just had to tell you that this CAN help you and they are 100% safe. The only side effects are feeling better.


Edited by vba195 (07/09/08 09:12 AM)
Edit Reason: spelling

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#725875 - 07/09/08 12:04 PM Re: whats best for fibro fatigue? [Re: nephro]
jehza1 Offline
Veteran

Registered: 02/28/08
Posts: 494
Loc: Southwest US
 Originally Posted By: nephro
Right! I was led to Anafranil, which is a brand of clomipramine (prescribed for depression and OCD), but adrafinil is a generic name so won't be capitalised. Even so, the names are frighteningly similar, and I'm surprised the authorities have allowed this to happen. Less similar names have been forced to change due to fear of dispensing errors.

But if adrafinil is metabolised to modafinil (if The Wikipedia article is accurate) it can't really be a cleaner drug than modafinil.

Perhaps it's another case of Our Drug's Gone Generic So Let's Bring Out One Just Like It syndrome.

Here's the confusing part (re: cleaner drug) they are coming out with another drug, armondafinil or r-mondafininl, which is to be called NuVigil in the US-which is supposed to be a cleaner version of mondafinil (and by extension, perhaps adrafinil) as it is only the r isomer, hence does not have the potential PNS side effects that most racematic stimulants do ( although Provigil is totuted as not having any cardiovascular side effects anyway, but that has obviously not proven to be true.) So there wil be two drugs-adrafinil and armondafinil that are relatives to modafinil, one more like a cousin, and one more like a genetically enigineered child ;\)

Clear as mud?

***and yes, it is most assuredly being released to counteract Provigil's patent expiriring-as they seem to be the same drug, essentially.
_________________________
The average pencil is seven inches long, with just a half-inch eraser - in case you thought optimism was dead.

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#725894 - 07/09/08 12:35 PM Re: whats best for fibro fatigue? [Re: moodylee]
PharmGrrl61 Offline
Member

Registered: 03/14/06
Posts: 120
Loc: "The SouthEast"
 Originally Posted By: moodylee
any ideas out there on what actually works for the severe fatigue that comes day after day?.


I have incapacitating fatigue. I have fallen asleep standing up and slept through several hurricanes.
Ritalin and Adderall were both pretty useless.
Provigil... or actually, generic modafinil from India... has given me back my life.
They are still giving out the free 7-day trials. Perhaps a doctor would write you a prescription for 7 if s/he knew you could get them for free? It's worth a try! Here's a link for the voucher: Provigil
If you find that it does help, then there are several excellent sources that are affordable and of good quality.

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#726301 - 07/10/08 08:35 AM Re: whats best for fibro fatigue? [Re: PharmGrrl61]
Claire024 Offline
Newbie

Registered: 06/24/08
Posts: 25
Anyone try Olmifon (Adrafanil)? I ordered it from an IOP and I'm having a horrible reaction to it...heart racing, paranoia, agitation. I've taken ritalin and adderall before with no problem, so i know i'm not particularly sensitive to stimulants in general. Just wondering if anyone else had such negative effects from Olmifon/Adrafanil? Thanks

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#726321 - 07/10/08 09:21 AM Re: whats best for fibro fatigue? [Re: Claire024]
nephro Offline
GRAND Pooh-Bah

Registered: 09/04/06
Posts: 10280
Loc: NOT 40!
Adrafinil is the one that is metabolised into modafinil.

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#726330 - 07/10/08 09:39 AM Re: whats best for fibro fatigue? [Re: Claire024]
JokerOwling Offline
GRAND Pooh-Bah

Registered: 07/14/07
Posts: 1971
Loc: here at the moment
 Originally Posted By: Claire024
Anyone try Olmifon (Adrafanil)? I ordered it from an IOP and I'm having a horrible reaction to it...heart racing, paranoia, agitation. I've taken ritalin and adderall before with no problem, so i know i'm not particularly sensitive to stimulants in general. Just wondering if anyone else had such negative effects from Olmifon/Adrafanil? Thanks

I have tried it.It didn't help the fatigue,although it did keep me awake.
I did have some of the side effects you mentioned,but they were only mild.

Have you tried 1,3-dimethylamylamine? I've just ordered some to try.Its suppose to be similar to adderall without the side effects.

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#726348 - 07/10/08 10:23 AM Re: whats best for fibro fatigue? [Re: JokerOwling]
jehza1 Offline
Veteran

Registered: 02/28/08
Posts: 494
Loc: Southwest US
I know that Olmifron is a cousin to Provigil, some report less side effects with it, some more. I take Vyvanse and it is effective for my purposes. But I also had good success with Provigil for quite sometime before it stopped working for me. Maybe I missed this in your post-what is your purpose for taking the medication?


Edited by jehza1 (07/10/08 10:25 AM)
_________________________
The average pencil is seven inches long, with just a half-inch eraser - in case you thought optimism was dead.

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#733425 - 07/23/08 02:58 AM Re: whats best for fibro fatigue? [Re: jehza1]
Code21 Offline
Veteran

Registered: 07/05/07
Posts: 652
Loc: K-Pin Highway
My fatigue is often incapacitating as well. I'm very curious about trying Provigil. I've tried Dexedrine in the past with BAD results. I am very sensitive to stimulants, even caffeine. Is the Provigil worth it for me to try?
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#743167 - 08/07/08 12:01 PM Re: whats best for fibro fatigue? [Re: JokerOwling]
JokerOwling Offline
GRAND Pooh-Bah

Registered: 07/14/07
Posts: 1971
Loc: here at the moment
 Originally Posted By: JokerOwling
Have you tried 1,3-dimethylamylamine? I've just ordered some to try.Its suppose to be similar to adderall without the side effects.

I just wanted to update.
I've been taking:
1,3-dimethylamylamine
Phenethylamine(PEA)
Hordenine
Sulbutiamine


for a couple of weeks now,with a day off here and there,and I have to say I'm very suprised at how well the above combo works for fibro fatigue,or any type of fatigue for that matter.I also add some DL-phenylalanine and/or L-dopa(mucuna pruriens 95%extract) and tyrosine plus others if I feel like it.
I also take a number of medications and there has been no interactions.
The best part of the above combo is there are no major side-effects(jitters,heart racing etc).They also act as a minor anti-depressant and memory enhancer.

If anyone else tries them long term,vit B12,essential fatty acids(EFAs-like Flaxseed Oil) and plenty of anti-oxidants are a good idea to take as well.

I was actually well suprised at how 1,3-dimethylamylamine works as a stimulant.It's great for fat burning as well.
Sulbutiamine is also great for fibro-fog.

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#747602 - 08/15/08 01:24 PM Re: whats best for fibro fatigue? [Re: JokerOwling]
efitness11 Offline
Stranger

Registered: 08/09/08
Posts: 2
Loc: Kentucky
I just bought Drenbuterol from GNC. So I will let you know what happens. One thing is it is much cheaper to buy online than at the store.

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