CHRONIC UNDIAGNOSED ILLNESS - QUITTING ADDERALL, BEGINNING WEANING PROCESS UNDER CLOSE OBSERVATION OF MD

[Perfectionist]

Hello, I am a 25 year old mother of one. I work as a retail manager in a demanding and high paced setting. I have in the last year become very sick. I have developed a wide range of body aches and pains, headaches, weight loss, digestive problems, weakness, extreme lightheadedness and fatigue. Also, off and on low grade fever and chills/sweating. The headaches, body aches and extreme pain/tenderness in various parts of my abdomen, chest and back have made keeping up at work nearly impossible in recent months. I have seen multiple specialists and am currently working with a GI specialist on some of these issues but have addressed quitting Adderall with my MD to hopefully slow some of this unexplained weight loss (am currently underweight and losing an average of two pounds a week) and help narrow it out as a possible cause for my progressing undiagnosed illness. I am desperate for a solution to this problem as in recent weeks I have been so ill that I am considering having to leave my job. I feel so sick that I spend the majority of my free time glued to the couch moaning in pain. Other days the pain is tolerable but only if I remain relatively inactive. I am scared I will not be able to keep it together at work during this weaning process but am hopeful to maybe be one step closer to diagnosing the cause of my debilitating mystery illness. Some of the clinical manifestations include unintentional weight loss, gross hematuria (blood in the urine), bilirubin in the urine, hot/red/swollen knees (off & on), facial flushing, frequent internal infections (have been hospitalized for a kidney, uterine and intestinal infection on three separate occasions in the past few years) and upper lobe renal cyst. The pain is getting unbearable and I feel like quitting adderall can only help the situation. I take 75mg total daily and have been on Adderall for 6-7 years for adhd. I used to be on 60mg/day but have been noticing problems with concentration since the start of this unexplained illness, so my Dr upped my doasage a few months ago.

HAS ANYONE SUFFERED FROM A SIMILAR UNDIAGNOSED ILLNESS WHILE ON ADDERALL?

CAN ANYONE TELL ME WHAT TO EXPECT DURING THIS WEANING PROCESS? ..will I be able to work or should I brace myself for a few weeks of physical torture?

I am choosing to quit because I know my body is not doing well for whatever reason and I have a one and a half year old baby girl to make sure I stick around as long as possible for.

[JustinW]

Wow, what a situation you are in; you and your family will definitely be in my prayers.  I did not experience an undiagnosed illness but I would say that a lot of us here did inherit some sort of digestive damage / distress due to using adderall.  I quit cold turkey on my first go around and then I used the weaning method my second time.  The difference between the two is that you spread the crash out over a month or two, but it is still unpleasant.  I don't think that there is any difference in the journey once you are completely off the medication but YMMV.

 

Start keeping a journal so you can read it for encouragement on the rough days.  Best of luck with your Dr.'s and I hope they can find some answers for you.

[Jon]

P,

 

Welcome. I am so sorry to learn of all the woes that have beset you. I agree with 1Bad completely in the previous post. I have some very uncomfortable tummy issues; very tender to touch, even when wearing loose sweat pants. Many of the symptoms you describe initially in your post could be related to Adderall and in my experience I have had body aches and pains, headaches, weight loss, digestive problems, weakness, extreme lightheadedness and extreme fatigue while on Adderall and while coming off Adderall.

 

I hate the idea that you have to do battle with Adderall cessation while working to solve seemingly unrelated problems like hematuria and mysterious infections. I'm not a doctor but, my guess is that they are unrelated.

 

I think it would be helpful to take Adderall out of your medical picture to help solve what could be the underlying issues. There are terrible costs of Adderall withdrawal and they are all paid at the end of your use, unlike other drugs, where you can pay as you go.

 

At this point in your life, I think your adhd is a lower rung on the ladder of the health issues you are struggling with. Ideally, a therapist who deals with addiction could advise you on how to approach your quit. Weaning will be difficult, but will allow you to get your day started for a few hours, then you will start to feel terrible for the remainder of the day. I weaned down from 60-70mgs a day to 10-15mgs a day over the course of a few years and it was very unpleasant. I quit cold turkey shortly after finding this website. It has been extremely difficult but I wish I had quit cold turkey earlier because weaning is torture and it kept me in a losing game for at least 3 extra years. Timing a cold turkey quit is crucial to success.

 

I hope I have helped you a little. I will keep you in my prayers too.

[Greg]

I just want to chime and say that I have had some of the mysterious infections from adderall..And also similar to the ones you described - hot/red/swollen knees (off & on). I also got swollen itchy feet.

 

I was binging at the time which i think was causing me to be super sped up and overanxious and this was giving me this subsequent stressed out bodily reaction because the doctors i went to see had no idea what was causing it.  If you read the potential side effects that come with the prescription. There is a laundry list of negative side effects and i pretty much got all of them too.

 

But i have never those adderall induced issues (like high blood pressure) since i stopped.  The bottom line being - when you cut out the adderall, a lot of these things go away.

[zhenka11230]

Welcome to the realization that long term amphetamine use isn't as safe as they claim it to be.

 

There will come happy days.

[lunax]

Hi P,

There was a point when I was taking adderall that I was constantly sick. I think people around me started to believe that I was making things up because it was constantly one thing after the other.

I suffered from such extreme pain in my joints that I thought I would end up in a wheel chair. The pain was mostly in my knees, wrist, lower back, and jaw. I was also hospitalized for kidney stones and kidney infections several times during the years that I was on it. I KNOW FOR A FACT that all of this was due to adderall! Every time I've stopped taking it my body has felt completely different within just a few weeks.

Please consider getting off of the meds for good before you cause any permanent damage to your body. You owe it to yourself and your daughter to be healthy and well. Wishing you all the best.

[lunax]

Oh and I also had a lot of digestive issues on adderall. One being this idiopathic cough which occurred right after I ate. Although i still have a mild version of it now, when I abused adderall it was so much worse to the point where it was embarrassing to eat around others. I saw a doctor who thought it could be acid reflux but I think a lot of it was due to the fact that I was so fatigued that I was literally gasping for air while I ate. The stomach pain was an entirely different monster but if I recall correctly it was worse during the first few years that I was on adderall.

[kramermjo]

Perfectionist,

Although  my health problem(s) are not as serious as yours and are not undiagnosed,  I wanted to let you know there is someone alse out there dealing with treating illness while also dealing with adderalll.  In my case I have been diagnosed with extremely low testosterone levels, which has as some symptoms very low energy and little muscle strength/development.  For obvious reasons this is a disastrous combination.  I will soon be getting testosterone supplementation but of course how well can I tell if it's working if withdrawl is in the way.  I also hate the very real possibility that I may have developed a habit of abuse because i was unknowingly self medicating for low t. 

By the way, I am surprised you're MD is working with you on cutting down.  I have head any hint of abuse and they just plain stop prescribing it.  I would like to wean off but am afraid to talk to my psychiatrist about it for this reason.

As far as weaning off, I've tried it myself and it is much less debilitating than just stopping. The problem is you have to be very strict about steadily reducing the dose.  In my experience even a day or two of reupping the dose puts me right back at the same level of dependency. 

Quitting cold turkey frankly sucks but could be easier in it's own way, kind of like ripping the band aid right off.  The big thing is you will have days or more likely weeks to a month where you'll be hardly able to stand up if your like me.  If you can stick through that some of your own natural energy starts to return.  I just did this and after two weeks can get up and do miinimal activity.  Personally though I'm hoping it doesn't stay so low for the months it will take for testosterone to work and prating testosterone does work.

I am also interested to see you take it for add.  the standard drill from the medical profession is that people with add don't abuse stimulants.  That may be how it's supposed to work but I had a 3 hr neuropsych workup diagnosing me with add and when i started taking adderall it changed my life - finally stopped my brain from buzzing.  After a year or so I discovered taking a little more gave me energy.  now when i talk to anyone about quitting they can't seem to buy that it affects my attention but still can be an upper. thus when i talk about how horrible it is to go off it and have my head racing while my body feels like lead people act like i'm talking another language, including other abusers. i'd be interested to hear you're experience.

Two more things:  There is a website smartrecovery.org that I use for alcoholism but it's also for drugs.  They have all kinds of help and I think you'd really benefit from taking a look.

Finally, I can't afford this now myself but it is a little known fact that acupuncture is exceptionally effective for drug withdrawl and for overall health for that matter. most people think it's for pain conditions but if you go for a month or so you'll be amazed at how much chanes physically and emotionally.  Eric Clapton said acupuncture is the only way he could kick heroin.  Let me know please if you try it.  Years ago I had chronic fatigue syndrome and the doctor said there was no treatment. Three months of acupuncture and I was back to normal.

Actually, after reading all the other posts let me chime in and say joint pain as been a problem for me and I think it's the adderall.  Anyway I am very glad you are at least under medical care. Good luck.

Mike

[quit-once]

Quitting cold turkey frankly sucks but could be easier in it's own way, kind of like ripping the band aid right off.  The big thing is you will have days or more likely weeks to a month where you'll be hardly able to stand up if your like me.  If you can stick through that some of your own natural energy starts to return.  I just did this and after two weeks can get up and do miinimal activity.  Personally though I'm hoping it doesn't stay so low for the months it will take for testosterone to work and prating testosterone does work.

Mike

Do you have a plan to quit for the long term?  What if the T treatment does not work?

I too suffered with muscle and joint pain while using Adderall.  I took about a year after quitting to quit feeling "old", although I felt measurable improvement after just a few weeks.  Regular  yoga practice really helps.  Energy levels and motivation were the last things to return for me.

The long term impacts of  testosterone therapy are relatively unknown.  Long term quitting Adderall , I believe, is a better solution to chronic undiagnosed illnesses and conditions.

[kramermjo]

quit-once,

i'm very glad you asked if i have a long term plan for quitting.  The answer is both yes and no.  i know that withdrawl is by definition time limited, but i keep slipping into the catastrophic mindset after a few weeks off that i'll feel this bad forever.  Then I go back.  I would like to try weaning off again more slowly this time. I did that once awhile ago and when i got to 0 it wasn't actually such a big deal.  I ended up starting up again for the dumbass reason that I wanted to get more done.  This time around I am looking for a job and if i don't settle down with this stuff it's inevitable when i get a job i'll end up loosing it if i run out. so now my number one motivator to taper off for good is to be employable. let's hope it works.  in the long run i think any long term desire to restart can be handled by acupuncture. i have decided it's worth the money. plus it increases energy anyway.  i also am working hard at teaching myself i'm not owed pillls to enhance my performance.  by the way i stopped for two weeks and took add yes and today. tommorow i'm going to see if i can build up some will power and go without.