Hello! I post normally on the fibro/cfs/ms boards, but I am desperate for some information about adderall and so far have not been able to find the info I need. I do not have ADD, but I do take adderall and I'm hoping some of you on this board who use Adderall can share some of your knowledge with me.

I have been ill for four years and in May was finally diagnosed with fibro/cfs, while my doctor strongly suspects MS. (I'm still undergoing the diagnosis process for that).
Two of my worst symptoms are severe, debilitating fatigue and brain fog (this includes memory issues, poor word recall, disorganized thinking, etc).
My doctor prescribed Adderall and I began taking it at the end of June. Started on 5 mg 2x a day, and for the first few days I felt my thinking was a bit clearer, although it did nothing to combat the fatigue and weakness.
Two weeks later, doctor increased my dosage to 20 -25 mg. Again, initially I seemed to see some cognitive benefits and a very slight decrease in fatigue. But I was still a million times more tired and weak than a normal, healthy person. (I am a 33 year old female, had been active, worked out 5x a week, ate very well, never drank or smoked.)
Last week the doctor told me to start taking 35 - 45 mg a day, spaced out however I felt would suit me best. Since I seem to metabolize this medication very quickly (one dose lasts only about 3 to 3.5 hours), I take it
3x per day to try to get the maximum amount of effect from it. I try to take the next dose before the last dose has worn off.
Even at 45 mg, I still nap during the day, am tired, have bad muscle weakness, and the brain fog had only decreased minimally.
I also have had NO side effects from this drug, except for a bit of a tinny taste in my mouth after taking the meds. (This happens to me even with Tylenol).
Sorry for the long post. Essentially my question is, in your experiences with Adderall, is it worth it for me to keep increasing the dose? One of my doctors said everyone is different and it's a matter of finding "My" effective dose. But I'm taking this for fatigue and not ADD. If I'm only slight improvement in fatigue at 45 mg, will I really see a benefit if I go up to 60, 75, 80 mg? I don't want to give up on this if it will work. But I don't want to keep increasing in vain.
I have done so much research on this drug and hear people say how it "wires" them or gives them extreme energy and motivation. I don't understand how I can be on 45 mg (which seems high to me) and still be able to go to sleep, or be so tired I can't think or move very quickly. I feel like my mind and body are stuck in quicksand.
I would appreciate so much if people have info on the following questions:

How much have people taken before they see "energizing" effects?

If you let one dose wear off before you take the next, does the next dose seem less effective?

Do some people just need a much higher dosage than others? Is it possible I just metabolize it so quickly I need to take more and more often?

Has anyone been on Adderall for a very long period of time, and if so, have you experienced any negative effects from it?

I'm sorry to "barge in" on your board. I thought I might find more Adderall users here than on other boards, and I so badly want this to work, so I'd just love to hear from others who use it.
I would appreciate any and all feedback. Thanks so much and best wishes to you all!!!!!!!!!!

Hmm, everyone is different is very true, especially with this drug. Have you looked at taking the XR version? For me it lasts 10 hours on one dose. I do notice I get the most done in the first few hours and then it wears off slightly later on, but it doesnt bother me, bc i am ready to take a break.

If I need a little boost, I drink some caffeine, small amounts help give it a boost..

50mg + is very high, you should be bouncing off the walls or getting anxiety, but like I said everyone is different. You may want to talk to your doc about possibly dexadrine or Adderall XR. good luck

Thank you so much for your reply!
Does anyone else have adderall experience to share or answers to my questions?

Hi, if you aren't ADD/ADHD than adderall will have a different effect on you than someone who has ADD/ADHD.
Good Luck
Johna

Johna,
Actually, Adderal and all the other drugs prescribed for ADD/ADHD act differently on different poeple -- some people are helped, some people notice little or no effect, some people have bad reactions and can't take the drugs at all. I'm sure it's the same for people who are taking Adderal for other reasons besides ADD.

desperate1,
Welcome to the ADD Board. It is interesting to read that doctors are trying Adderal for fibro/cfs -- of course not so "interesting" for you because you just want a cure! I have only a short experience with Ritalin, so cannot advise anything about Adderal. There are lots of threads about it here, which you might find helpful to read (on days when you have a little extra energy to spare). I hope that others will have more info for you.

--Rheanna

Desperate1,

First, welcome to this board! Who knows? Maybe you do have ADHD and just aren't diagnosed. (Keeps this thread relative to this board).;)

I'm sorry for all your suffering. It's interesting to me that your doc chose Adderall for you; I would think that Provigil would be a more logical choice. I wonder what his rational was.

Here is something for you to put some thought into.

It would be a good idea for you to REALLY watch your symptoms in relation to each dose of Adderall. In fact, it would probably be useful if you kept some kind of a simple log for a little while.

The reason I suggest that is this. Adderall actually peaks at about 3 hours. It's unlikely that your dose is wearing off at that time; it's more likely that what you are experiencing at 3 to 3.5 hours is actually the peak of the medication's effect. If at 3 hours you are feeling worse rather than better, it may well be that the Adderall is actually making you more tired.

I know you are convinced that you are rapidly metabolizing the Adderall and that it is wearing off at three hours. It would be useful, I think, for you to consider that it's having the opposite effect. Keeping a log would give you a better idea of what is really going on. Especially, if you are as foggy as you say you are - it may be hard for you to keep track of dosages and symptoms without one.

Put some thought into it anyway.

Good luck and God Bless!

Index,

That is one of the most insightful posts ever. Thank you. Also, I failed to pay you a well deserve compliment on graduating Magna "cuum" Laude (and teaching em how to spell). You may have "smarts" on your side but ADD can bring down geniuses. Sheer determinedness on your part no doubt was a player too.

To stay within post ...

Desparate1 do the journal thing.

I did not respond because your use of Adderall for CFS and Fibro Mialgia is well beyond by scope of experience - that is - for ADHD.

I hope the best for you.

Bob

{Sorry this is unrelated to the thread. Aww shucks, Bob, you've given me lots of compliments along the way. I'm only inattentive, I don't have the "H" so I don't really consider myself in the league with you and my eldest. But yes, sure determination had alot to do with it. Unfortunately, determination wasn't enough to carry me post-graduation: lack of self-esteem has interferred with attaining any significant career goals. That is, other than the one that I wanted most - which I got. That is, to be a mom!

How low self-esteem plays into all of this would be an interesting topic for another thread. As in, how much do we fail to achieve because of our disorder and how much is because we didn't fit in/measure up as kids.}

Desperate1, consider the notion that the Adderall makes you more tired rather than less. It does alot of people, you know: that's why it works for ADHD.

Thanks so much to all of you. I truly appreciate your insight!
Index, great, great, great advice, thank you! I would never in a million years have considered that Adderall could make me more tired, because all of my research has turned up the "be careful, it's like a prescription for speed" information. Very, very interesting to know it could be affecting me in the opposite way.
I do keep a journal, although I can barely read my own handwriting late. I went from perfect penmanship to complete chicken scratch. And I can never concentrate, so the ADD thing is not so far-fetched, though I do suspect it is more a side effect of the major fatigue. Who knows? I try not to self-diagnose. It's so easy to convince yourself you have one thing and then you can miss the signs of something else.
Anyway, thanks again. I really appreciate hearing from you all!

p.s. index, i should mention that I asked all of my many docs about provigil since I have read great things, but none of them had ever heard of it being used for ms or fibro related fatigue(?!) I have been to clinics and hosptials affiliated with Ivy League Universities and have seen very highly respected docs, and I just can't believe none of them are willing to prescribe. They all tell me they only know of using for narcolepsy.

Also, after an hour or hour and a half on adderall I get a short, not very intense lift in energy and clarity. That's why I assumed it was "peaking" early, after an hour or two, and wearing off around 3 hours. Now I wonder what the heck is going on. My doctor seems convinced that we just haven't gotten to a high enough dose yet.

Well, this is very interesting food for thought (when I can actually think.)
My gratitude to you all. :)

Desperate1, you don't even have to go to the trouble of journaling.

Make yourself some kind of chart where you enter time of dose, then maybe blocks at certain time intervals (like 1,3, 5 hours post dose). Then use arrows or something- 1 arrow up means improved, 2 really improved, 1 down slightly worse, etc. Color code your arrows - 1 color for energy, and another for mental clarity.

If what you really are seeing is a slight improvement at 1 or 2 hours post-dose, but a worsening at around 3 - 3.5 hours, I'd have to guess that the dose you are taking might be too high for you.

This is all assuming that you are taking plain Adderall and not Adderall XR - there's a big difference.

Hi Index,
Great idea with the chart and arrows. I will try that. I admit with the fatigue I am having, sometimes it seems to much to even write in a journal, even a sentence or two. Arrows are much easier.
I take regular Adderall, not XR. Saw the same slight improvement on 10 mg around 2 hours as I do with 40 mg. It's probably that Adderall is not right for me, but I just want to make sure I don't dismiss it too soon. That's why I'm all over the internet asking annoying questions of people who have taken it, LOL.
Thanks again for the great advice. I am extremely grateful that you took the time to share your insight with me.

One last thought for you. I know that Provigil is normally prescribed for narcolepsy and not what you have. It's also true, though, that Adderall isn't normally prescribed for what you have. It seems to me that your situation is closer to narcolepsy than it is to ADD. Just IMHO, of course!

PS Your questions are NOT annoying. Ask all you want. Probably won't have any answers, but we're happy to be asked anyway!

Great advice! I've been on both Adderall and Provigil and had similar questions. I created a thread in the Drug Interaction forum here. I hope I get some replies. Thanks! :angel: :wave:

Great advice! I've been on both Adderall and Provigil and had similar questions. I created a thread in the Drug Interaction forum here. I hope I get some replies. Thanks!

Great, I'll have a look at it although I might not have anything to offer! Maybe others here will.

Desperate1 I am in the same boat as you. I don't take Adderall for ADD/ADHD but for the fatigue associated with the Fibro. If you aren't on the XR form it only works for approximately 4 hours max anyway. I am also BiPolar so I have a list of cocktails that make me wonder why I take any of the drugs sometimes. However, I know I need them. My shrink, pain management, and GP doc all work together on the meds but I still don't like the interactions between some of them.

There are many good suggestions in the thread so you may want to look into them. I wouldn't just keep increasing the Adderall though only b/c the fibro has the fatigue associated with it. I use to fight taking the naps and all that b/c I felt worthless and useless however, my doctor finally told me that when you get tired, go to bed or you will pay for it later with more days in bed. I finally started listening to him b/c I found him to be correct.

Sorry for rambling but some of us fibro people get confused on the issue.

Please forgive.

Best Wishes to all!

Hi Jenn!
Thanks for the tip--the way my doctors talk you'd think it was "take this adderall and you'll be normal like you used to be again." So I suppose "some" improvement is a sliver liining then, right?
Do you mind if I ask how much adderall you take and how long you've been on it? Do you see much improvement in the fatigue? If I could just get to a point where I'm able to think straight most of the time and not weak with fatigue, I'd be pleased. Tired I can handle. Bone tired fatigue is tough to bear all day every day.
Funny, my brother has ADD and his doc has never mentioned adderall. Yet here I am being handed the stuff like it's no big deal.

EFA's , magnesium and ALA are supposed to be helpful with CFS. Maybe adding those to your regiment might help?

Yeah, I take them, although I have to say lately I've been lax. I was really good about it for two years, never skipped a day. And once I started forgetting a few times a week I did notice that they were helping when I took them every day, if only a bit. Omega 3s, I've discovered, are a HUGE necessity. They help with everything. I'm pretty sure they even cleared up my skin, lol.
Today I'm trying to space my adderall out to 4x a day instead of 3 to see what happens.

Desperate1 - The Adderall is not a magic energy pill no matter how much we wish it were. I take 20 mg 2 x per day. Somedays it works better than others but that is the fibro and you have to remember that. The max that is suggested taking in one day is 60 mg and you really shouldn't take it after 4 pm due to the fact of sleep issues.

The difference between you and I is that I get very fatigued but not sleepy and I only sleep about 2-3 hours every night if that much. Sometimes I go for up to 60 hours with no sleep. The doc has given me sleeping pills and they only work for about 2-3 hours also if that much.

Sometimes I feel like Elvis, they want to give me pills to wake up and pills to go to sleep. ;) I do like the Adderall and am happy if it only last 4 hours b/c that is 4 hours of energy I wouldn't normally have.

Hang in there and I hope this helps somewhat. Keep Posting and hopefully we both can get some help here.

Thanks to all that are posting trying to help and God Bless you all! :angel:

Rach82 Thanks for the info. I do agree with the generic versus the brand name on the Adderall. My son was diagnosed with ADD years ago and his doc would not allow a generic version so I was aware of that. I on the other hand did not think about it with me. I guess I worry about the kids more than myself. Plus, I take so many drugs, even with insurance the cost each month is way out there. With me no longer able to work, it really takes its toll.

Jennita Can you explain the EPA, Magnesium and the ALA. How much someone would take and what the EPA and ALA is? I take a multi-vitamin but any info would be helpful?

Thanks to all

I've been on Adderall for ADD for about 2 years. I took the regular for about a year and a half and switched to the XR after that. I have other issues too and take a cocktail of drugs in the morning, including 2 that make me sleepy. They are winning. I could easily take a nap anytime after the Adderall, and in fact frequently do come home on my lunch break to take a nap.
But it is working to keep my mind from wandering too much, and that's the main thing.

Alpha Lipoic Acid is an antioxidant which is also enhances energy production in the body. EFA is part of the Omega family. You can get either supplements or food sources include spinach, red meat and potatos(ALA), fish and nuts(Omegas) and peanuts are packed with magnesium.

Alpha Lipoic Acid is an antioxidant which is also enhances energy production in the body. EFA is part of the Omega family. You can get either supplements or food sources include spinach, red meat and potatos(ALA), fish and nuts(Omegas) and peanuts are packed with magnesium.
Thank you very much!

I've been on Adderall for ADD for about 2 years. I took the regular for about a year and a half and switched to the XR after that. I have other issues too and take a cocktail of drugs in the morning, including 2 that make me sleepy. They are winning. I could easily take a nap anytime after the Adderall, and in fact frequently do come home on my lunch break to take a nap.
But it is working to keep my mind from wandering too much, and that's the main thing.
I have been on it about that long also... I am on the XR form too. Do you mind me asking what other types of cocktails you are on.

I have been on it about that long also... I am on the XR form too. Do you mind me asking what other types of cocktails you are on.In the morning I take 20mg Adderall XR, 100mg Wellbutrin (works well for depression), 20mg Lexipro (depression/OCD), 0.5mg Risperdal (works well for anxiety/OCD). In the evening I take another Risperdal.
It makes me tired just thinking about it.

Even though I am "bone-tired" I felt I needed to post my unique experience with Adderall, prescribed for the same exact reasons, fatigue and brain fog. Diagnosed 15 years ago with Fibro, it overtook me 3 years ago, taking a healthy active creative person down to wishing I would just die. Never suicidal because there is always hope, but just plain miserable. I sought help from my pcp for 2 years trying every antidepressant the drug companies are pushing right now and none worked. He finally gave up on me and referred me to a psychiatrist. On my first visit I told him all I want is some energy to get me back on my feet and I will work myself back to where I want to be. He started me on Adderall regular the same as your doc. I went back for a followup and told him I might as well be eating candy. He upped me to 40 mg. a day too, and when I went to see him 15 days later I was totally amazed at what I had discovered. I had been "waiting" for all this energy to hit me so I could speed through my dirty house and finally see some results from taking a pill. It Never Happened. What did happen was a wonderful lifting of the depression, ceased the crying spells immediately and allowed my brain to say..."you've got to help yourself". I forced myself to start walking again on my treadmill and after a week you would have thought I had conquered the world. Now, with my doctor's okay, I space out the time between pills and the amount. I can't take a "holiday" as the depression comes bouncing back the next day, and if I have to live on Adderall for the rest of my life hey it's better than having no life at all. Geez I'm 56, I have to do what I have to do. I did discover that taking 20 mg. in the morning is better for me (I thought mornings were naturally my best time of the day) and then 5, 10, or 20 mg. by 2:00. This is the dose I change around. I did try provigil...I felt like a zombie stuck in mud too on that. I couldn't even lay down and rest, forget napping. My rheumy recently added Klonopin to help me sleep at night even though I told him I had been taking Xanax .5 mg. for 6years for that reason. OMG if Elvis felt like I did he is in a better place. Uppers (adderall) and downers (klonopin) only work for drug addicts or people taking it for reasons other than medical. I dropped the klonopin like a hot potatoe and 2 days later I was back to my normal self. After that experience I am satisfied with Xanax' 5 hours of sleep because when I get up in the morning it's out of my system. It's not fighting the Adderall. I have also, which no pill will do, started to accept my limitations as my new way of life and it's ok. Fibro brings on the worse kind of depression because it's not a chemical imbalance that a pill will improve, it's reality. Fibro will not leave you day or night, there is no pill that helps me with the pain and soreness and I struggle to sleep. I sure hope for the younger patients (like you) they find "something, anything"...to alleviate the fatigue first and I really think the other problems associated with fibro would improve naturally just from that. The medical field just doesn't get it because they can't prove on paper what is causing it. I had the trauma to the head theory, being involved in an accident when I was young, head cracking the windshield. Who knows? Who cares...just find us some relief. Didn't mean to go on and on, it's just my heart breaks when I read posts from young women starting on the same road that I've been down. I wish my mother were alive so I could tell her...mama you were right about experience being the best teacher. Now I tell my children that and I see that "same look" I had. Oh well. Take care and please don't hesitate to ask any questions I didn't answer in this loooong post. And please don't give up, just try to start accepting now the changes that Fibro demands (until they find a cure?), because when you add menopause on top of Fibro....you need to be ready for anything.

magnolialady - what a wonderful post. A lot of insight went into this. Before I get started let me apologize as I know I will ramble as it is rainy here and the fibro fog is on a "high alert" level along with the pain. I know you talked about menopause and what that may bring along however, I had to have a hysterectomy (sp) at the age of 29, I am now 44. I am trying so hard to understand that my old life is gone and I now have a new life. I was also diagnosed with BP 1 after being treated with depression and generalized axiety disorder for over 25 years. I also had several TIA strokes in June of 2006. So being a Personality type a and now having to change my life style totally has been hard. I work really hard with my shrink, therapist, GP and pain management doc every month. Take my mix of cocktails as prescribed but do not see alot of changes. The pain management doc even started me on TPI. I have only had those done the last three months and have not given up but do not see much relief from those. Last month he missed a trigger point, which I know is a risk we take, but boy was that horrible.

I filed for SSD but have been denied in the first two stages. So am waiting for a date for a hearing with the judge. Hopefully and I pray to God that I will be able to win at that level. I really don't know how SS can even think someone would hire me with the cocktail of meds I take. Technically, I could probably be arrested if pulled while driving on the mix I have to take during the day. I try to stay upbeat. The financial burden though really is starting to make me feel worthless and a burden to my family. I have always worked and always been very independent. My husband and I have only been married for less than 2 years and he totally refuses to let me go back to work, I feel like sometimes I should just go and do it. I know I would never last, but I feel so trapped in this house day after day even though I hurt so bad.

Sorry for the rambling and being so down. I am just having a bad couple of weeks and needed to vent.

God Bless to all who had the patience to listen :angel: