CLL (W&W) Fatigue and Adderall - CLL Support Assoc...

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CLL (W&W) Fatigue and Adderall

Hello, community. I've been on W&W for five years now. It looks like I'll be heading into treatment in August or September. Numbers are getting bad. For the past year, I've noticed a slight downward trend in my energy level and my ability to focus. I work on my own, and have to think/write frequently. It was getting untenable, with an even sharper drop in the past month. I visited my psychiatrist yesterday. He prescribed Adderall. I took my first one yesterday afternoon and broke through two conceptual barriers in a piece I've been stuck on finishing. Up early this morning, like I used to, and off to the gym. Here I am at home working again. I hope this is how I will feel after treatment and back off the Adderall. For now, it feels like a god-send. No work, no pay.

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I have terrible fatigue for a year. My doctor tried Adderall which gave me heebie jeebies and then Ritalin. The Ritalin worked pretty good for a few months but then started leaving me feeling hung over all the time. Mostly I take it now when things are terrible, a few days here and a few days there.

The one thing I DO notice is yeah, the whole focus thing really gets going...this works great when you focus on work....but be careful, you can just as easily get focused on watching reruns of Star Trek.

Scott

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So glad you said Star Trek. Not much of a Star Wars guy! ;-) You're absolutely right, though. It helps narrow focus if you have ADHD, but not so much if you don't. I hope you are managing well.

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Doing great. I probably should have followed up and let folks know the treatments got rid of the fatigue. No more Adderall!

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😁

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I can totally understand the frustrations of severe fatigue and writer’s block Circlesaba and am glad this has helped. I’d be wary of long term use of Adderall personally (I’ve been on W&W for 6 yrs this month). I hope it’s something you’ll only need to take to get you over this temporary malaise until treatment can start.

americanaddictioncenters.or...

Best wishes,

Newdawn

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Thanks, Newdawn. I was misdiagnosed with ADHD years ago and took Adderall for about three years. It did, indeed, cause me problems because I was undiagnosed bipolar. It spun me up and out. My psychiatrist is confident now that my bipolar is very successfully treated, I should be OK. Still, my hope is that after treatment, my energy and focus will return.

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I certainly hope so Circlesaba. After 6 yrs, my cup ‘no longer runneth over’. Some days I feel depleted and I absolutely know my brain power isn’t what it was (hubbie disagrees! 😄)

Newdawn

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Newdawn, I concur with your husband. You are brilliant. So don’t think you for a moment you lost any brain power. I am a cyber witness that you have not. 🙂

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Newdawn ... any other advice for fatigue besides just accept it and go with the flow?

(Besides eating healthy, mild exercise and generally healthy stuff)

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Oh how I wish I did have answers to this much asked question and quality of life issue Moxie because it’s such a vague but widespread problem and often not even adequately recognised by clinicians. Dr. Thompson on this Patient Power video describes it persuasively when he says;

‘This is a really good question. Fatigue is, by far, the most common symptom that patients with CLL have, and the reason for this is that the CLL cells themselves are producing these chemicals called cytokines, and also, they induce the immune system to produce these chemicals called cytokines that are the same chemicals that you make when you’ve got an infection, like the flu. The symptoms that you have when you have the flu, the exhaustion, the fatigue, not being able to get out of bed, this is a common complaints that patients with CLL have. This can happen even when the CLL is, what we call, early stage and doesn’t need to have specific treatment for the CLL.’

patientpower.info/video/im-...

However, he does remind us that we can’t automatically attribute everything to CLL. We get other medical maladies and fatigue can be due to other issues which need investigating. I’ve been fortunate for the first 5 yrs in not having the mind numbing fatigue many CLL’ers suffer but I’m aware now of declining vigour exacerbated by painful joints. When I nap now, it’s more of what I’ve always described as a ‘zestless zonk’ and far from waking refreshed, I can actually fall straight back to sleep. It’s a much deeper daytime sleep too. For my part, I found medically prescribed Vit D has helped and recently, I’ve had so many other pressures on me that I suspect I’ve been fuelled purely by large doses of adrenalin!

Best wishes,

Newdawn

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I feel compelled to chime back in here after being away from this thread for a while. I want to be very clear about two things: (1) I have a long-standing and mutually trusting relationship with my psychiatrist and (2) The Adderall literally *canceled out* my fatigue. I think the mention of abuse and addiction in this context isn't warranted. I, personally, think that people with CLL should consider finding psychiatrists (particularly those who also do "talk therapy") to help them through the challenges this disease can pose, challenges that might include fatigue which, though not psychiatric in nature, may, for some, be addressed by meds a psychiatrist will prescribe when the GP won't.

I have a close colleague with whom I have been working on a long-term training project. At our last gig in August, she commented on how spot-on my energy was. I told her that was good to hear because I thought the fatigue had come on me suddenly and, just as suddenly, was fixed by the Adderall. She reminded me that late last year, we were working with other groups together and I would start my mornings with a 6 to 8 shot espresso, then have more coffee in the morning and a caffeinated drink or two in the afternoon. I'm not a big caffeine consumer. She said I seemed fatigued back then and, also, a little jumpy (caffeine will do that!). By the time I was on Adderall for the fatigue, I was my old self again and not even drinking any caffeinated beverages.

Any drug can get a bad name. It's like what's happening with the opioid crisis. Many people who really need opioids for pain relief now can't get enough of what they need because of well-intentioned and not-so-well-applied efforts to address the crisis. I'm not saying Adderall is for *everyone* who has fatigue. I am saying with 100% confidence that it was the temporary relief I desperately needed. I will also say with full conviction that those of us who remain open to it might find that it can help us if we need it to. I don't think any of us are here talking about drugs for recreational use. We're looking for solutions. Adderall solved a problem. Now, the treatments are solving the root cause of the problem, so the Adderall goes into the drug disposal pile.

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It’s not until many months after treatment that you understand how really tired you were because for years you have slowly adapted to the slowing down and tiredness. The past you accepted as normal; after treatment there is a new normal. For me this meant plenty of energy and no tiredness.

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I can relate to this. I was feeling a low level fatigue for a year before I was diagnosed....then got Bell's Palsey (which led to diagnosis) and the fatigue dropped like a ton of bricks and never left. Likely without the Bell's I would have got more and more fatigue, but not all at once....It's why I really would opt for treatment now instead of waiting....if they would give it to me.

Scott

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They say you're not ready for treatment?

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No, was diagnosed April 17 (see my previous posts for full story if you wish) and aside from my WBC spiking last winter from 23K to 43K and Absolute going from 23 to 32 in one month nothing really going on except the fatigue. I have asked for treatment....but I really like my Hematologist and she is very clear....when I need it, not once second before.

Scott

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That's the best time. Not a second before. To your health, Scottxxoo.

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Newly diagnosed 2/18 but who knows how long I had it since no labs for 10 yrs. They say I am not ready for treatment either because I have multifactorial fatigue and CT negative for lymphadenopathy. I can get out of house about 2-3 hrs per day max a few times a week otherwise mostly in bed (not asleep) x 10 yrs. Take 1 afternoon nap. Work on computer, read, do crafts ... but sedentary. No depression. The getting up for 2-3 hrs over the past 2 yrs is an improvement over the prior 8 yrs.

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I am so happy to hear this and I very much look forward to kissing this Adderall script goodbye post-treatment.

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Good morning devonrr , I will feel totally wiped out but when I try to go to sleep I just lay there. I have started just this week trying to lay down for an hour about 4:00 in the afternoon to see if it improves my evening time. was diag. in June 2015. See my quack next Tuesday will see what he has to say

james

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Yes, those consultations are important to mention those lifestyle impacts.

Listen to your body and if you can rest when your body starts to ebb.

I had a habit of an hour in bed before an evening out. It worked.

Before chemo sleep was a problem. Now, I sleep well.

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I did not realize that maybe my lack of sleep was CLL related. I will be extremely tired and go to bed at 10:00 , an hour later I am awake and up. Will maybe go to the other bedroom for an hour or so . then it is to my recliner or as now on my computer. This goes on all night long every night. I have a few good hours first thing in the morning but then feel wiped out the rest of the day.

Do you think this will go away after treatment ? I hope so

james

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After treatment I sleep normally. I enjoy 7 to 8 hours with the only interruption when woken by the seagulls at dawn and they wake everyone.

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This part is strange for me. I have never been what I would call a good sleeper...took me a while to fall asleep, wake frequently, then only slept for 5 or 6 hours. Sometime last Fall I started sleeping better than I ever did...still takes a while to fall asleep...but I sleep straight through for 7 or 8 hours....I should wake up raring to go but I always wake up feeling like I haven't slept for 3 days.

Scott

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Why treatment were you on? Hope you are still doing well!

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I too have an Adderall script (for ADHD, diagnosed in my late twenties) and use them very sparingly, but they do indeed help with focus at work and, I have to admit, the occasional evening out.

I've been saying here that I don't think I'm experiencing fatigue, because it doesn't look the same as others describe, but it recently occurred to me that that may be merely a function of younger age - that just because I'm not laying down for afternoon naps doesn't mean I'm where I should be in terms of energy.

Here's hoping that we all find the energy we need!

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I'm 56. Too young to be feeling "old."

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I'm 35 and boy, do I feel you!

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God, I know...right...I went from being active 52 to feeling like I am 150. The worst part is I look fine, and aside from no energy feel fine....

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i'm 66 but not ready for the wheelchair. I like doing lawn work but now two hours max and i am wiped out

james

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I’m a newbie, on W & W since diagnosed last Fall. My energy level is way down and I have a problem focusing but, no medication yet. I wish you all the best and thanks for sharing your experience.

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My pleasure. I hope you find many things here to help you on this long journey. I personally find Adderall to be benign, side-effect-wise. Cleaner than coffee, for me.

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Dr sha

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India perspectives

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Sorry, to hear you are heading towards treatment. I can't even imagine the fatigue you must have experienced or may still experience. I was just diagnosed in March of this year and some days I feel that I can't get out of bed. I left my office position several years ago to care for grandchildren and was not able to find a job after the children got older. Fortunately, my husband's salary has kept us afloat. Now, I can't even imagine having to work with the fatigue. I do work as a freelancer for a transcription company, but the salary is very low. As a freelancer, however, I do have great flexibility. My hematologist didn't seem to think my CLL caused my all my fatigue. However, when I read the comments here, I believe he is wrong. Of course, I am probably at Stage 0 and have other health issues including Chronic Kidney Disease and diabetes. Take care and keep us updated.

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My daughter has done transcription work. I understand the salary is low. You must be good! They tend to boot people who can't keep up. I'm not 100% sure my doc would agree that my fatigue is from CLL. Then again, he said something like that to me more than a year ago when my numbers weren't such a mess. Now that treatment's around the corner, he might feel differently. I just messaged him and I go back in July, which is when I'll probably get the word that we're about to start. We have so much to deal with with this disease. Maybe even without fatigue, a script to help us stay on top of it all isn't such a bad thing.

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I am actually better at reviewing and editing. As a freelancer, I can work as little as one or two hours a day, so I don't have the pressure of a regular office. Take care.

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My general practitioner prescribed it for really bad fatigue I'd been dealing with at stage 0. I take 20 mg in the morning and 20 at noon. Now I can have full and productive days at work. My new job is less stressful now, which also helps; I had previously been in a very hostile work environment. At almost 60 getting a new job minus severe fatigue makes me feel like a have a new lease on life. It wouldn't have been possible without Adderall; Only drawback is I get overly focused on one task.

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You're very fortunate to have a GP who was open to the reality of fatigue, CLL, and the potential benefit of Adderall. It seems others on here aren't so fortunate. I couldn't work without it.

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I thought Adderall was for ADHD? Why oh why r u taking Adderral ?

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You sound very concerned about Adderall. I had been diagnosed with ADHD about fifteen years ago, and had been on Adderall for a time. It certainly did make it possible to get more done. I developed strategies to focus and came off the Adderall. Of course, my CLL doc knew about my growing fatigue. It was getting so bad, I couldn't get up off the couch. Another doc (back home) suggested it might help with fatigue. I tried it, after checking with my CLL doc to make sure it wouldn't cause any problems. Why did I keep taking it? Simple: IT WORKED! Adderall got me through about four months of extreme fatigue, and it bought me enough time to make it to the clinical trial I'm now on. Less than a month into the trial and I no longer needed it.

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