chronic fatigue syndrome

[notredame]

Can anyone recommend a drug that would help my chronic fatigue syndrome? It's supposedly a side effect of my fibromyalgia, but it's disabling in its own right. Would ritalin or adderall (Sp) help someone like me?

[NastyNate]

Adderall does help people with Chronic fatigue syndrome but Adderall is mainly a focus drug and its really needed for people that have problems focusing. I would recommend Provigil or Nuvigil since its mainly a "wakefulness" drug rather than a focus drug. But always consult with a physician when dealing with situations like this as they know what to best prescribe to their patient.

[billyboy1965]

Can anyone recommend a drug that would help my chronic fatigue syndrome? It's supposedly a side effect of my fibromyalgia, but it's disabling in its own right. Would ritalin or adderall (Sp) help someone like me?

Even if they did you'd be nuts to listen to them. No doubt you're already being treated for your fibromyalgia and with what, we don't know. This question should only be answered by your doctor, or another doctor for a second opinion.

You're asking about Schedule II medications. Do not take those lightly.

[brienzi]

I don't think there is any Approved drug on the market Specifically for CFS..
The last one that applied for NDA was from HEB(stock ticker)pharma and was rejected...

[notredame]

Even if they did you'd be nuts to listen to them. No doubt you're already being treated for your fibromyalgia and with what, we don't know. This question should only be answered by your doctor, or another doctor for a second opinion.

You're asking about Schedule II medications. Do not take those lightly.

I'm not being treated for my fibromyalgia by my doctors--they do not know what the eff they are doing and the last time I took anything they prescribed, it made me feel even worse than I did before I took it, and that is saying a lot. I'm on my own for getting help for myself--and I'm going to have to take some risks; apparently, doctors today have no problem with prescribing drugs that were never designed to treat diseases that they're now being prescribed for, so I don't think that I'm in any more danger than I would be in the hands of a doctor.

Besides--I know how to check for drug interactions on web md and elsewhere.

[TenaciousE]

It drives me crazy when people start multiple seperate posts on what is basically the same question. In this case dealing with fatigue.

Adderall is a controlled med with a history of abuse by drug seekers and college students. Because of this the DEA controls the amount that can be manufactured. This has led to shortages of the drug, leaving those who REALLY need the drug without the ability to obtain it.

So I recommend that you start your morning with a strong cup of coffee and leave drugs like Adderall and Ritalin to those who have a serious medical condition diagnosed by a doctor and need these drugs to control their condition.

I also advise against self diagnosis and cures, especially when it is clear that you have not thoroughly researched these diseases or meds you mentioned. Because if you did you would know that Adderall and Ritalin are used for ADHD/ADD and not fibromyalgia or CFS.

And if you are suffering from a medical condition, than you are only harming yourself by not getting it properly diagnosed, because you could be wasting precious time if you have a serious condition that is get progressively worse.

[notredame]

Can anyone tell me what they take for chronic fatigue syndrome, and from where they get whatever it is that they take? Thank you for any help.

Please note that there is no one medicine that's been approved specifically for chronic fatigue even by our defunct medical system--so we are on our own in finding help.

[Art Vandelay]

I was diagnosed as having chronic fatigue syndrome until I tested positive for lyme. The symptoms for both disorders are quite similar. It's been 2 years since I was most recently infected with bourrelia bourgdeferi and babesia. At this point I take 10-20 mgs of adderral daily so I am able to work and break thru the fatigue. Trust me I'm not too jazzed about taking what amounts to amphetamine but until this profound fatigue stops I will stay on this regiment.

If you have bad muscle aches I would recommend magnesium and wobenzyme. My joint and back pain is so bad at times that I have to take codeine for the pain.
For the neck stiffness(encephalitis) I would recommend stretching and professional massages. I also take a variety of antibiotics to kill the bacteria, the most effective being doxycycline.

I have noticed a lot of common symptoms from fibromyalgia, chronic fatigue syndrome, ms, gulf war syndrome and lyme disease. Good luck with chronic fatigue I know it's exhausting and the level of exhaustion is indescribable. Hopefully you don't have lyme disease.

[msaok]

@notredame I read the other unfortunate thread and thought I might be able to give some encouragement.
If several physicians already concur that you have fibromyalgia/CFS, your treating physician should not be surprised or overset by you reporting problems with brain fog. The question of whether to treat it with ritalin vs provigil or some other med is complicated (I would think) since your symptoms are probably widespread are you are likely on other meds. IMO, since you are already under a doctor's care and have this established diagnosis, your best bet would be to say something like "My brain fog is disabling. I read in support forums that some people have been helped by ritalin and I'd like to try this." If the doctor doesn't think this is a good idea, he/ she'll explain why and you can either tell her you'd like to try it in spite of the risks, or you can ask her to suggest an alternative.
Buying them online without a script is expensive, illegal (just saying), and the truth is you could get counterfeits (esp. now when these short acting stimulants are in short supply). I'm having my own issue finding short acting dexedrine even with a script, but I haven't resorted to trying to get them from nrop for fear of getting counterfeits.
Think it over.

[billyboy1965]

Can anyone tell me what they take for chronic fatigue syndrome, and from where they get whatever it is that they take? Thank you for any help.

Please note that there is no one medicine that's been approved specifically for chronic fatigue even by our defunct medical system--so we are on our own in finding help.

There are no cures for many ailments facing civilization. Cancer, HIV/AIDS, and Hepatitis C are among the most serious right down to the common cold. I believe you are in a huge minority when you say "because of our defunct medical system" we are on our own.

Millions of people will disagree with you. My father with his quadruple heart surgery. My several friends with HIV who are living normal lives. Diabetics. Cancer survivors. Premature babies. The list is endless.

Positive attitude is a huge factor, probably more than medication, in relieving pain and distress attributed to these and many diseases. Just by your mention that "you are on your own" indicates to me that you do not have a positive attitude and are unwilling to listen to anybody who can provide medical advice. You will dismiss treatment because it's effed up. You've made up your mind.

Chronic Fatigue Syndrome has similarities and characteristics to many disorders. I'm shocked you were even diagnosed given your distaste of the medical profession. Maybe you were diagnosed with something else but didn't like that one so you continued to be diagnosed until you found one they couldn't treat.

If you are serious about a remedy, you will try anything. You will try therapy. You will try antidepressants. You will try acupuncture. You will try exercise. You will join CFS support groups to discuss and share your stories.

The last thing you should do is blame your sickness on a defunct medical system.

Good luck on your endeavor on your own. You're going to need it.

[gsg909]

I thought I read some people on here take Modafinil for CFS

[notredame]

Why is it you can't face the fact that your beloved defunct medical system is rated by WHO (that's The World Health Organization) as about as competent as Trinidad's? You have to make up stupid hypotheses about me because you so need to believe in your defunct system--which is EXCELLENT in diagnosing a disease, and, in many cases, utterly powerless to CURE it.

I had a very positive attitude before I suffered for eight years at the hands of scores of doctors who gave me scores of prescriptions and told me to take them and my symptoms would be greatly reduced. I had a very positive attitude before eight years of meaningless pain because of incompetent doctors in several different states. And after all that, I don't feel obligated to trust a system that has not only failed me, but has failed the thousands of people every year who DIE of diseases CAUSED by doctors. Two members of my immediate family died because of medications given to them by incompetent doctors who knew their medical histories and gave them these medications anyway.

So go ahead attacking anyone who disproves you or disagrees with you. Because the problem isn't with my *attitude*--the problem is with the ego of someone who has now followed me through three different threads just because I had the audacity to contradict him. And your ego, like the incompetence of the system you so value, is not my problem--not anymore.

*This post was auto-merged. The following text was added 11 minutes after the last post:*

@notredame I read the other unfortunate thread and thought I might be able to give some encouragement.
If several physicians already concur that you have fibromyalgia/CFS, your treating physician should not be surprised or overset by you reporting problems with brain fog. The question of whether to treat it with ritalin vs provigil or some other med is complicated (I would think) since your symptoms are probably widespread are you are likely on other meds. IMO, since you are already under a doctor's care and have this established diagnosis, your best bet would be to say something like "My brain fog is disabling. I read in support forums that some people have been helped by ritalin and I'd like to try this." If the doctor doesn't think this is a good idea, he/ she'll explain why and you can either tell her you'd like to try it in spite of the risks, or you can ask her to suggest an alternative.
Buying them online without a script is expensive, illegal (just saying), and the truth is you could get counterfeits (esp. now when these short acting stimulants are in short supply). I'm having my own issue finding short acting dexedrine even with a script, but I haven't resorted to trying to get them from nrop for fear of getting counterfeits.
Think it over.

The thing is--after having been diagnosed by three doctors who couldn't cure me, I stopped seeing people who did nothing but give me pills that made me feel worse. So, actually, I'm not donating any more money to the doctors who diagnosed me but couldn't help me--in short, I am not seeing a doctor who can't help me. It's pointless, and I hate thinking that someone is making money off of my suffering.

The truth of the matter is this--doctors in America are EXCELLENT are telling you that, for example, you have cancer and you have five months to live; but there's nothing they can do to cure that cancer. Likewise, I've been told quite accurately that I have fibromyalgia, which means debilitating pain and fatigue. And there is absolutely nothing any doctor I have seen over eight years has been able to do to help me with this ailment.

So, make up stuff about me, make stupid assumptions about me, my pain and my attitude (I don't mean you @msaok--I mean the egomaniac we are both necessarily aware of)--whatever rocks your (gen. you) boat. If you (again, gen. you) so desperately need to believe that American doctors are, on the whole, kind, understanding and give a flying flip about their patients' actual debilitation and suffering, then feel free to shoot the messenger; or if you so desperately need to be right about everything that you're willing to attack and make absurd, vicious assumptions about someone whom you know is suffering because your ego is more important than someone else's pain--then have at it. It's the unfortunate problem of the said egomaniac--not mine.

[msaok]

@notredame it's true there's no cure, and that is very hard.
It's also true FM/CFS is not fatal, so managing symptoms (while not easy), is your best shot at improving your quality of life. Unfortunately, it's largely trial and error getting to the right meds at the right dose.
Obviously, you can obtain medications on your own and google side effects, drug interactions, etc . You would be better served, though, googling forums and support groups dealing with FM/CFS. The folks there will understand what you've been through and will have useful recommendations, including I would bet, on finding the right doctor.

[Jeremy Fisher]

I had a very positive attitude before I suffered for eight years at the hands of scores of doctors who gave me scores of prescriptions and told me to take them and my symptoms would be greatly reduced. I had a very positive attitude before eight years of meaningless pain because of incompetent doctors in several different states.

I hear you ND. I don't have much faith in doctors either. Every time I go to a new doctor (which is rare, I feel like I am educating them, or managing up as I like to say). Why should we help them when they are supposed to help us? I have chronic pain and have for over 20 years. Several of my issues I have solved myself. I currently have a PCP who believes in integrated medicine and in me. We make a good team I think.

So trust yourself; trust your instincts; don't trust internet meds. They are iffy at best and can not be counted on. They don't always show up and often they are fake. Unless one is looking for benzos. They seem pretty easy to get.

I recently found a great website which provides a lot of information about trigger points and CMS. I thought that section was pretty good and very applicable to me. This site also had a section on CFS which you may find interesting. I don't know.

BRB with the link, as I have it bookmarked to show my PCP at my monday physical. Big YUCK. So tired of talking about my stuff. "Yea, I hurt. It sucks. I try not to get too depressed over my restrictions. If I think about it too much I will jump in front of a moving train. And how are you doc?"

Here's the link. Let me know what you think. I am curious as I don't have CFS, just the muscle thing. http://homepages.sover.net/~devstar/perpet.htm

Feel free to be honest. I can take it. Just curious.

Waterfall

[brienzi]

@notredame I suggest u go on google finance and type in HEB..That stands for Hemispherx Pharma..
They are the latest biotech whose drug was not approved by the FDA for CFS, although it showed some good results in treating this illness...U may find a wealth of info about this disease there and possibly some treatment options..I believe their drug was called ampligen, and while not approved by the FDA, it may soon be approved in another country(I'm going off the top of my head here)
so check it out, u will find an abundance of info on the HEB website..

*This post was auto-merged. The following text was added 2 minutes after the last post:*

Hemispherx Biopharma, Inc. Publishes Data On The Bioactivity Of Ampligen In Chronic Fatigue Syndrome (CFS)


Monday, 19 Mar 2012 08:30am EDT
Hemispherx Biopharma, Inc. announced the publication of a peer-reviewed article providing the results from the AMP-516 Phase III Clinical Trial of Ampligen= [rintatolimod, Poly (I) • (C12,U)], an experimental therapeutic, in the high impact, online journal, PLoS ONE. The report is entitled "A Double-Blind, Placebo-Controlled, Randomized, Clinical Trial of the TLR-3 Agonist Rintatolimod in Severe Cases of Chronic Fatigue Syndrome". In the current PLoS One publication, a Phase III, FDA authorized study in CFS evaluated the safety and therapeutic effectiveness of Ampligen, an experimental therapeutic, in 234 subjects with debilitating CFS at 12 clinical sites in the United States. The Ampligen treatment was generally well-tolerated. The primary endpoint, exercise tolerance, improved an average of 21% in subjects receiving Ampligen compared to placebo and the proportions of patients with exercise improvements of at least 25% and 50% were 1.7 and 1.9-fold greater for the Ampligen group versus placebo (p<0.05). An ad hoc continuous responder analysis of exercise improvement between 25% and 50% at 5% increments demonstrated a significantly greater response for patients receiving Ampligen compared to placebo. The Ampligen cohort also reduced dependence on medications used to reduce symptoms of CFS compared to the placebo group (p<0.05), adding additional insight to the recent CDC/Harvard study which emphasizes the overwhelming economic burden of medical care for CFS sufferers.

[billyboy1965]

So go ahead attacking anyone who disproves you or disagrees with you. Because the problem isn't with my *attitude*--the problem is with the ego of someone who has now followed me through three different threads just because I had the audacity to contradict him. And your ego, like the incompetence of the system you so value, is not my problem--not anymore.

You have disproved nothing.

THREE different threads for the same topic. One is sufficient.

Doctors are only human. They can not cure ANYTHING. Not one thing. There is only ONE healer. If you're pointing your finger at anyone, tell it to Him.

[Art Vandelay]

I think chronic fatigue is lyme disease. The symptoms are the same. To truly get treated you should first get tested for lyme disease. Find a lyme doctor in your area. Or continue treating chronic fatigue syndrome as you currently are.

Our medical system is expensive and you pretty much have to diagnose yourself. I get most of my meds for lyme disease from doctors in our country. Only thing I get online is codeine for pain cause my doctor doesn't prescribe narcotics.

[mountaineer]

I used to get prescriptions for Wellbutrin but not for Chronic Fatigue but for depression .It is a mild stimulant according to my PDR .I tried not taking it several times before I quit seeing my former doctor and would sleep most of the day .Having trouble staying awake .I had trouble for a long time not being able to stay awake after I got up in the morning after I quit taking it .The generic Wellbutrin for 60 150mg SR tabs cost me about $45 a month .I have been tempted go back to my former doctor to start taking it again.All the online sources for it are way to expensive .
I have been a health and fitness buff for a long time taking many kinds of Health Supplements over the years .I started taking a pre-workout OTC health Supp called Craze a few months back .It has helped me immensely .I take it twice a day now instead of using it for a pre-workout supp .I use it for pre-workday and intra-workday helper .I usually just take one serving one serving mixed with about 8 oz of water each morning .Then maybe later drink a big 16 oz of coffee .most times only drinking half the 16 oz of coffee now .i have quit taking prescription meds altogether now .I only take generic tylenol and aspirin for my pain now and also have cut back on the amount of those I take now .
I order the Craze from either www.dpsnutrtion.com or www.supplementwarehouse.com for about 30 to $32 a container that has 45 servings .Try it might help you ,it has helped me .

[Jeremy Fisher]

@notredame it's true there's no cure, and that is very hard.
It's also true FM/CFS is not fatal, so managing symptoms (while not easy), is your best shot at improving your quality of life. Unfortunately, it's largely trial and error getting to the right meds at the right dose.
Obviously, you can obtain medications on your own and google side effects, drug interactions, etc . You would be better served, though, googling forums and support groups dealing with FM/CFS. The folks there will understand what you've been through and will have useful recommendations, including I would bet, on finding the right doctor.

I like a lot of this post but also don't want @notredame to leave this board. He can be the member of many boards.

ND, this is my approach towards doctors. If I don't like what they say or suggest I take, I just don't do it. Now I have in the past filled scripts and tried just a couple of pills and then stopped. This of course will not work w/ADs. I think a specialist is a good idea and be honest and forceful w/them. If they won't give you speed (easier to spell) oh well, maybe they can help you in other ways. Maybe they can get you on that new drug @brienzi mentioned, or one of the trials.

And who knows maybe you do have lyme disease as @Art Vandelay suggested? Worth checking out. Same w/ @mountaineer 's, suggestion about Wellbutrin. Interesting to know it's a mild stimulant.

Taking care of one's health sometimes can be a full time and exhausting to folks who are not already suffering from fatigue issues.

And please stop arguing w/ @billyboy1965, he is a good soul. Also he is right, you did create several threads on the same topic. Next time, if you want - just post again in the original thread, and it will get bumped back up to the top.

Sincerely,

Water

[msaok]

[QUOTE=Waterfall;271878]I like a lot of this post but also don't want @notredame to leave this board. He can be the member of many boards.
I agree. And I sincerely hope my remarks did not sound like some kind of dismissal from this board. I meant only to suggest there are forums more specific to @notredame 's needs.
<snip>
And who knows maybe you do have lyme disease as @Art Vandelay suggested? Worth checking out. <snip>

It is worth checking out. But a warning.... if he is fed up to here with the seeming incompetence of doctors treating cfs, he better gird himself for the firestorm of controversy surrounding the very existence chronic lyme.

Taking care of one's health sometimes can be a full time and exhausting to folks who are not already suffering from fatigue issues.

True dat. And another good reason to look in on the cfs boards AS WELL AS THIS ONE . There will be tons of validation there for him.