<img alt="Hc_logo" src="http://www.healthcentral.com/common/images/home/hc_logo.png" />

12/20/09 8:59pm

Eileen,

Sorry for the late reply, our computer has been having problems.

I just wanted to Thank you for responding to my question. It's good to know that joint pain is not a common side effect with Vyvanse. That was kind of the impression I was under, but I guess you never know, I could be one of the few that does, but who knows.

I have never had any problems with seizures, or really any health concerns at all, that's why this seems to be so strange to me that all symptoms started after taking Vyvanse, but like I said, not until 6 months later when the first ones started appearing.

Thank you so much for your time and concern in responding to me, good luck to you and have a happy holiday season!

Eileen Bailey, Health Guide

12/23/09 9:53am

I hope that you are feeling better. Hopefully, your doctors will be able to determine what is causing your symptoms.

Have a wonderful holiday.

Eileen

ace

12/31/09 1:32pm

vyvanse releases dopamine in your brain in clusters of waves. when a drug does that, your body's natural dopamine releasing functions are slowed. when you don't take the vyvanse, your system will need time to re-adapt to producing its own normal levels of neurotransmitters. i hope you understand what i'm saying because i'm not the best at explaining, but if you get what i'm saying then you'll have your answer. it's up to you, stay on vyvanse forever, or get off of it forever, or take it sparingly and wean off of it. good luck!

Mom of ADD

1/20/10 9:08pm

My son (12 y.o) started taking Vyvanse 20 mg and almost immediately complained of back pain. I did not connect it to the med's as he said he thought if was due to a keyboarding class he had 1st period. However, I noticed that when he took it on a Saturday because of a function he had to attend, he complained of back pain. After 3 weeks we upped the dose from 20 mg to 30 mg and the back pain became unbearable for him, plus hip, elbow and wrist pain. Took him to the doctor and the doctor does not think it is related to the medication. I was so excited about this med as all of the others caused loss of sleep and appetite and this one did not. Now I don't know what to do. I plan to keep him off for a few day and see what happens.

1/21/10 12:46am

Thanks for your reply, Your actually the first person I have come across that has ever said anything about experiencing joint pain while taking Vyvanse. I'm curious to see how your son feels after going off it again, I'm still trying to figure out what is going on with me, having none of my symptoms improved, after stoping Vyvanse again.

I am scheduled to see a Rheumatologist next week and am hoping I can get some idea from him what's going on with me, by being able to get x-ray or bone scans of my joints.

Please if you don't mind keep me updated on your son, I really hope the Vyvanse ends up working out for him and not being the cause of the joint pain. If you hear of any others experiencing the same thing would you mind letting me know?

Good luck, keep me posted.

Melissa david

1/21/10 10:43am

Hi My name is Melissa and I have been on Vynase for about 6 months now and I too am noticing the brusing and increased back and joint pain. It feels as though I have the flu with out aoo the other symptoms. I ache all over but mostly my lower back and hips. I willl be making an appointment this week with the doctor in hopes to find out what the cause is.I would love to hear how your test come out on your test.

1/21/10 2:23pm

Thanks for the reply Melissa, if you don't mind me asking when did start noticing the side-effects you were experiencing? Was it right after you stared the Vyvanse, after increasing your dose, or are you not sure?

Did you experience any joint pain, back pain or bruising before starting Vyvanse?

I had a few things go before, like a few toes being numb, feet and legs hurting a lot, and a few other things, but nothing like what I am going through now. I have no idea if I was experiencing a health problem before Vyvanse and then it has just progressed, or if the Vyvanse has been doing this to me all along? I guess that's why I'm curious to know how your health was prior to starting medication.

If you don't mind as well, please let me know how your Dr. appt goes, and if Dr. thinks Vyvanse has anything to do with your current symptoms, I will do the same.

Thanks Melissa!

Mom of ADD

1/21/10 8:01pm

My son has been off the vyvanse for 2 days now. He still complained on the 1st day, but seems to be pain free today. I plan to keep him off the med through the weekend which will be 5 days off the medication. I will put him back on it on Monday and keep my fingers crossed that the pain does not come back and can write it off to growing pains. He is growing really fast and we have had those before but not this degree. I will let you know how it goes. I will be curious to know how your doctors visits go and if any underlying problems are detected to make doctors think it is not the medication. If you don't mind I would like to hear from you when you know more.

If anyone else has experiened back pain and or joint pain I would really like to know.

1/21/10 11:06pm

Thanks for the update!

So no pain on 2nd day? Intresting.

I have an 11yr old daughter who is not taking Vyvanse or any other ADD medication, she has been complaining a lot of her legs and arms hurting as well. A year ago I would of thought twice about it, but because I'm having so many health issues now I seem to be a lot more aware of every little odd thing one of my kids complain about, it's starting to drive me nuts.

I asked my Dr. about my daughter, and he mentioned the same thing as you, most likely due to growing pains.

Concerning the Vyvanse, my Dr. did mention at the time, it could be a possibility that the medication could likely just add fuel to the fire, making joint pain, growing pains, whatever, feel worse, but said he couldn't imagine it being the underlying cause of all the problems. He said he has been writing prescriptions for ADD medication for years, has seen side-effects but nothing like what I experienced.

Anyway, let me know how the next five days go, and what happens when you put your son back on Vyvanse, I will do the same, although I may not know anything for a couple weeks by the time i get test results back from the rheumatologist.

Thanks for the update!

rttmom2

2/11/10 11:32pm

My daughter who is 12 has been on vyvanse for 2 years and she has been having severe back pain the last 3 months I ahve taken her to the doctor and she says she has never heard of that side effect but she did agree that it was definetly the muscles along the spine tightening. She gave her muscle relaxers and changed her to adderrall 10 mg 2-3 /per day but that hasnt helped.....I know it is the vyvanse because when she doesnt take it she is better she just says her baack feels sore....
i have searched the internet over and over for something to help..because she desperately needs the meds!!! Have you found anything that helps!!

Mom of ADD

2/14/10 8:48pm

I do think it had something to do with the Vyvanse. I put him back on the 20 m and he has not complained. However, he has not been back on it for a long stretch of time yet, becasue we have been out of school due to snow. I plan to keep him on the 20 dose and see what happens. He is really growing fast and it think the vyvanse is somehow intensifying the growing pains. That does not explain why an adult is having these types of pain with the meds like another correspondent on this site. I am not a doctor, and all the doctors I have talked to do not think the pain is from the medication. But this is a really new medication, so I don't thingk they know all there is to know. Giving my child speed and something that affects the nervous system gives me grate pause. However, it helps him so much and he has struggled so long it is heartbreaking. He is such a sensitive, good, bright kid and I want to help him. So hard to know what is the right thing. We have tried every medication all with side effects that we could not live with. He could not eat or sleep and was tired and depressed on all the others. This one has worked best. I was so excited and then so disappointed when he started having the back and joint pain. Good Luck!

Gina Pera

2/23/10 1:17am

One possible factor to be aware of: The Vyvanse can make the person more aware of bodily sensations that might have gone unnoticed before taking the medication.

That's a hallmark of ADHD: Not noticing internal or external phenomenon. That means that, for some people, they might not notice certain physical symptoms such as backaches, feeling of being full or hungry, etc.

The stimulant medication helps the person to be more aware of what's going on in the internal and external environment. In other words, certain aches and pains might have always been there -- just not noticed.

That's not to say that this is always the case. Of course, the medications can cause side effects, too, especially if other underlying metabolic issues are not addressed.

Gina Pera, author

Is It You, Me, or Adult A.D.D.?

http://www.ADHDRollerCoaster.org

shell

2/22/10 7:25pm

I took vyvanse in 2008 and stopped b/c of all the side effects, mostly back pain...but side effects that ppl said I wouldnt have from vyvanse... but I knew something was not right. I've started taking vyvanse again b/c I need it for work and guess what???? My back has started hurting again...ughhhhhhhhh!!! I remember in 2008 having to get flexeril and 800 Ibuprofen b/c of the back pain.

Twila Rigmaiden

9/ 8/11 12:41am

be careful just taking your child or yourself off vyvanse after taking it for a period of time i was under the impression that you kinda have to wean yourself from it. my doc just put me on it and im having side affects mostly headaches and i have to pick a day and make myself eat something cause i have no appetite whatsoever but ive never been so clearer minded in all my life i carry a small bottle of tylenol with me every where i go cause the headaches are sometimes unbearable. my girls also take vyvanse 30 mg and i dont make them take it on the weekends but that is about the limit. end of school last year i slowly started taking my daughter off of it because we had already discussed with the doctor that it wasnt for summer use but your body becomes dependant on it and if anyone is like me (lack of energy/life) without it then maybe while on it your running around like a chicken with ur head cut off using more muscles and joints then u normally would in our dead state aka no energy. my kids are forever telling me mom sit down take a break but i cant i gotta keep going ive been on it for about a week and have done more laundry and cleaning in those 5 days then i did in 6 months time frame. remember when we use muscles that arent really use to being used they can hurt like the other person said get on and stay on or get off and stay off because its not good to start and stop.. i probably didnt post this on the right post but i just grabbed one good luck and i hope things start feeling better for any of yall having problems

mkb

12/ 9/11 5:40am

I only take vyvanse when i work, & i have EXTREME back pain when i take it. my b/f also has the same complaint. its related

sawyermcb

3/ 5/12 1:40pm

*Personal opinion/experience I am not a certified medical personel*
Late reply but im willing to spread my knowledge where i see an oppertunity! From personal experience as well as that of my close buddies we all will take add medicines on occasion at night and pull all nighter playing computer games. (we all have prescriptions. for the record) Although this is not how your child should or was/is being administered his ADD medication,(i hope) a subconscious side effect of taking stimulants is sitting in the same exact position without weight shift for very long periods of time. The mind will be so hyperfocused on whatever task it is following out that you 'forget' to shift your weight around to avoid discomfort which is normally a task handled by your sub conscious mind saying to itself "this is becoming painful, i should shift weight off the pressured area". The results of this effect can causes muscle stiffness, muscle soreness, joint stiffness, joint soreness, sharp pain in joints as well as about anything else you could think might spur from pressure on specific parts of the body for potentially hours straight(try sitting in one position on a computer chair and dont move at all for an hour and youll see how it can cause issues). From my experience the discomforts and all above effects went away in a week or less but I did not ever have a situation where i would sit at a location for a long time every single day as he does so the effects and recovery time may vary. Some tips to avoid these things is to stretch every muscle group briefly every hour or so to stay liber and prevent muscles from tightening up. Make sure he has eaten and has the nutrients for his body to be at the best of its natural potential. Drink plenty of water to stay hydrated and keep muscles and joints hydrated and some how make sure there is some way to remind him to shift positions every now and again (post it note on the computer desk, bracelet with a word written on it so when he sees the word he'll remember to move, etc..). Now if for whatever reason he doesnt remember to shift positions it should not matter if he remembers to stretch out and liber up about every hour. Finally while on the stimulant medication one will zone in, to a typing task for instance, and pump out sophisticated words (meaning more letters which is in turn more key strokes) at incredibly fast speeds. The sheer increase of strenuous activity on fine movement joints such as his elbow and wrist (not neccessarily defined fine movement joints, but in the instance of computer typing their range of motion is fine and precise) can cause stress and discomfort; but as i stated above your mind under the influence of the drug wont realize the discomfort until its been an extended period of time, that is, unless you are conscious of what is happening and become aware of the sensation which is why i stress he get into the habit of running a mental check of how he is physically feeling every once in a while.

hopefully i could help in some way shape or form! Add medicine is a great drug and definitely has valid therepudic properties dont get discouraged! It took me from failing almost every single class to B's and high C's and without it i would be right where i was.

Any questions reply and ill shoot you my email -sawyer

Gina Pera

2/23/10 1:11am

Judy,

It sounds like your physicians are unfamiliar with neurobiology, neuroendocrinology,. and the possible effect that Vyvanse might be having on you.

I'm not a physician, but I've heard many (many!) stories of encounters with physicians who have difficulty assessing the "big picture" -- that is, hormones, thyroid, medication side effects, etc. It's easy to understand; this is complicated stuff!

The fact is, Vyvanse is an amphetamine-based medication. And while some people find it greatly enhances their lives, it only makes sense that a medication that can create great positive changes could create other side effects.

There are many possibilities. For example, if your physician is not addressing any co-existing "serotonin-related" issues (such as anxiety or depression), the stimulant alone could be backsuppressing serotonin; the symptoms you describe are not out of line with that phenomenon.

It could also be that your body is not getting enough (or utilizing existing) amino acids -- the precursors to neurotransmitters.

And it's also possible that some other health issue, unrelated to the Vyvanse, has cropped up.

Good luck sorting it out.

Gina Pera, author

Is It You, Me, or Adult A.D.D.?

http://www.ADHDRollerCoaster.org

Ouch

3/ 4/10 8:32pm

Hi Judy and All,

Well, I am going off of Vyvanse again after another bout of joint pain. It's been simple for me. On Vyvanse, my neck is stiff and knee is in pain. My toes have been stiff as well. Off Vyvanse, and it takes some time, I'm fine.

I'm trying to see if others have experienced this. The sad thing is, Vyvanse has been great for my brain function, but the pain is making it not worth it. Again.

I've seen folks here, on ADD Forums and on drug reporting sites that make me think we are not alone.

3/ 5/10 1:12am

Thanks everyone for replying to my question. It's good to hear other's have experienced some issues with Vyvanse as well, at this point I'm still not sure what is going on with my health, or really if Vyvanse had anything to do with it, I truly have no idea.

After going off Vyvanse again, this time for 2 months I still had no change or improvement with my health. I tried Concerta for a few weeks but found it made me very tired. At this point I feel something is not right. I had some different test done through my doctor in which a few came back showing some concerns. I will follow up with more test in the next few weeks.

I still continue to wonder if the Vyvanse could of triggered something, but who knows?

To this day I still never regret going on it. I was diagonised with ADD at 18 and so grateful to know I wasn't just dumb. After trying so many different things over the last 16 years to improve my life, and my children's, I decided to give the medication a try. After being on it for one month I couldn't believe the change I saw in myself, along with my husband, friends and family. Things finally made sense, I could not have been more pleased with the improvments and changes I saw within myself. For the first time I felt I was living life the way I always felt and knew I could. I most likely will never know if Vyvanse contributed to my health problems, but I will always be grateful for the way my eyes were opened, in not only helping me be a better mom to my kids but a better me.

Thanks again everyone for the information you have provided me with, please know it's greatly appreciated!!

Ron

9/15/11 11:53am

Well I'm no kid, I'm a 45 y.o. Male and I've been on vyvanse for 18 months. About 6 months ago I started having pain in my joints and lower back (kidney) That have slowly increased to the point where I'm absolutely miserable! Ive just completed a ton of tests with my general MD, rheumatologist, hematologist, urologist (that was fun!) endocrinologist psychologist and nephrologist! All test came back normal! However I stopped taking the vyvanse today, and although it too early to tell I do have Noticeably less joint and kidney pain! I'll see if this keeps up, but I think we may be on to something!

Ron

9/15/11 12:00pm

amanda

8/ 2/10 4:06pm

doctors don't know ****. I just started taking my vyvanse because adderall gave me horrible side effects. I have horrible back pain now, I can't take it. my doctor said it couldn't be from vyvanse but look at all these people who have back pain now.

Samantha

9/16/10 10:04am

Hi Judy,

I hope you're feeling better. I was wondering if your doctors have come up with any answers for you yet as I am having very similar problems.

Joint pain- my knees have suddenly started to hurt and my hands are so bad I can't open jars anymore. Basically my joints feel like what I imagine the joints of an 80 year old might be experiencing! (I'm 38)

Flu type symptoms every few days- run down to the point of almost lethargic with that whole body ache that usually accompanies the flu.

Mid and lower back pain/ burning- At first I was thinking we just needed a new mattress. (I was also tested for UTI's and kidney infections and was told everything was fine.)

Unexplained bruising- I often find large deep purple colored bruises on different parts of my body that I have no memory of an injury to explain them.

Until I read your post, I hadn't even considered the fact that the medication may be causing my problems. I have been on 50mg Vyvanse for about 8 months now. Please please let me know if your doctors find a solution. Thank you!

Samantha

9/25/10 1:28am

Samantha,

Hi!! Thanks for writing to me. I'm so sorry to hear you having so many problems with your health. If you don't mind me asking have you seen a Doctor, aside from being tested for UTI's & Kidney infections, in having other test run to see what might be going on?

As far as knowing for what is wrong with me, still not sure yet. I'm currently seeing a Neurologist in which I had a MRI of my brain that shows multiple scattered lesions on my brain. I also have had 3 different EEG's which all show seizure activity. Doctors really thought it was MS, but in 2/2010 I had a spinal tap done which came back clear. My leg pain (numbness, weakness, burning pain & especially right side of body) along with dizzyness, is by far the worst right now, along with many other symptoms as well. I'm seeing a Rheumatologist in 2 weeks to go through more testing again, but honestly not sure what's going on considering all blood work for things like RA, Lupus, Lyme, inflammation ect.. Always come back normal. Doctors still have not completely ruled out MS, especially with the symptoms I have as well as my age (35) But like I said because of the spinal tap being normal, they are first going to rule out possibility of the lesions being related to vascular problems before they continue moving forward with more testing for MS.

We also just found out my daughter has a auto-immune disease as well. (So sad) My grandpa as well as my aunt both have RA & my sister has a auto-immune disease that effects her Kidneys. So at this point I don't think Vyvanse had anything to do with my symptoms. Although I still wonder if stress along with the Vyvanse may have triggered something, but I certainly don't feel anymore that it's causing everything that's going on with me.

I'm sorry I wish I had more answers for you, I hope in some small way this helped in at least continuing to keep moving forward in getting to the bottom of your health issues. But just keep in mind that YOU know your body better then anyone. Continue keeping a open mind, trying everything that you know in caring for yourself & body and if none of that works, then keep moving forward with getting answers to your health, don't give up!!

I will continue to keep you posted on things I find out and please do the same for me concerning you, if that's OK?

Well, good luck Samantha....Keep in touch!

Judy

christadawn

9/24/10 8:07pm

I was estatic when i read this. i have been on the meds for six months and in teh past two months i have been to the er 9 times and have been seen by multiple specialist i am now being seen in a caner center and they have diagnosed me with an autoimmune disease and are now saying lupus. i was first taken to the er when i became covered with bruises..by the end of the day i had 29. i have sever joint and muscle pain and tightness like someone is holding my ligaments tight. i cannot open jars twist toothpaste or even light a lighter in the morning. my feet become completely numb and feel like they are falling asleep. they then swell and turn purple and blue. my doctors insist its not the medicine. i was even taken off of it for 3 weeks and nothing changed in fact i felt worse bc the medicine was the only thing that kept me moving. i want to go off of it but i cant due to my constant tiredness and symptoms. the doctors have even said it could b cancer but all my blood tests are normal. i really want answers and i cant get them anywhere. is this permanent if i go off of them? i feel so helpless and so sick. this has been a nightmare for me and i hope with enough of us having these problems some one might listen or give answers. keep in touch

9/25/10 1:57am

To the above writer,

I'm so sorry as well for all your going through..I totally know how your feeling. If you don't mind me asking di your symptoms get worse with time, or did you just wake up one day and they were all there? How did you feel when you first started Vyvanse? I know I felt wonderful. Infact it's kind of funny, prior to starting the Vyvanse I had started having really achy legs ALL the time. Somedays I could hardly walk. At the time I was training for a marathon and just blew it off to putting to many miles in one day running. With time I started cutting back on the miles (over a 2 month period) only being down to running 4 miles a day, which was nothing compared to what I was used to doing. My leg pain seriously got so bad I would just have to spend half the day sitting on the couch rubbing my legs & trying to rest them so I could walk better. I was also having internal tremors when I would sit down in my right leg. This went on for about 4 months prior to the Vyvanse. The first thing I remember thinking when going on the Vyvanse was that my legs didn't hurt anymore, all while the medicine was in me and working, I was thrilled! As soon as it wore off my legs started to hurt again, but I was so thrilled that my leg pain & tremor were gone for the most part, while being treated for my ADD with the Vyvanse, I was so pleased and happy with the direction my life was taking, I couldn't have been more thrilled. Things didn't start progressing and getting worse for quit awhile after being on the Vyvanse. And like you everytime I go off the medication (once going off it for 3 months) I felt SO much worse, I really didn't know what to think was causing my health problems, Vyvanse never even occured to me in being the problem until months later.

OK, so one more quick question...Sorry. But is there any one thing (or more then one) that has lead the doctors to believe it's Lupus?

Pleases if you can, keep me posted on what your doctors find out. Until then, best of luck to you...I hope your able to get to the bottom of this and start moving forward with working on getting better.

Take care!

Judy

christadawn

9/26/10 1:51pm

when i first started taking the medicine it was life changing. it was so remarkable and helped me so much. yet now i am so sick i have constant pain constant numbnesss and fatigue. if i stop taking it i literallly cannot get out of bed or care about anything. also drs found out my immune system now is so bad my mono that i had when i was 14 has become active again. its a mess. the only reason they say lupus is bc its an autoimmune disease which means ten million symtems none making sense and constant sickness. also in the hands and feet lupus shows raynauds syndrome which is wat happens to me but something in me just KNOWS that it is this medicine. also have them check you for artery hardening. mine have started to which is causing the circulation problems the sever pain in my legs arms and feet. i want off this medicine so bad bc i know it is going to end up being pulled off the market. i have played sports my entire life never have a ever dealt with this. it was 4 mnths after starting vyvanse i noticed my hands swelling up and numbness in my feet another month and it all became much worse. wat devastates me more is that i have to remain on this medicine that i know is destroying my body bc otherwise i cant function. im talking to a lawyer monday and an MD from two states away. im not stopping till i get answers. also the only thing that made me feel a little better is 2 natures valley herbs..chinese blood builder and amino acids...def helps. keep in touch. im christa by the way

dizzyd

10/25/10 11:40pm

I have been on vyvanse for 18 months (49yr old female). After 6 months of therapy - (which I was very pleased with)- I woke up with bi-lateral carpal tunnel. Happened suddenly... I had swelling, tingling and numbness in both hands. Symptons continued - I saw an orthopeodic and a neurologist- both said carpal tunnel. After continued symptoms including numbing feet, painful knees and back pain and I had hand surgery (one year after onset) . All symptoms have continued. Nothing has helped. I have continued taking vyvanse through everything. I Never thought vyvanse could cause any of this. I have tried everthing except getting off vyvanse. Guess I'll give it a try- hello ADD.

4/25/12 9:09am

hi!

did anyone find out if the medicine was causing their problems? I have been on Dexedrine for 2 years and have all these same problems. Terrible jjoint pain, faigue, back pain and i have gained weight! i have never weighed this much- i am wondering if the dex is causing dehydration since i drink coffee and sweat everyday. i can no longer do any weights b/c of the terrible muscle pains.

5/28/12 10:18am

I was very curious about your dose of Dexedrine....do you take spansules or immediate tabs?

When did you find the wight gain began....Dex usually kills your appetite!

I have also been on it for 2 years....was GREAT for 8 months...zero issues.

I suddenly developed Raynauds, joint pain, hair thinning....just sick....and it has continued for a year and a half.

Also had every test, specialist....Lupus? Lyme?

I was never ill, athletic....then literally one day it all changed.

Is it autoimmune.....or could 5 Doctors be wrong about a drug side effect??!!

5/28/12 1:33pm

Hi! I have both but have only used spanules. What do u take? Is yours for ADHD? I take it for idiopathic edema. Same thing with me- it worked 8 months and I lost weight, fluid retention and then all of sudden gained weight and started having terrible joints pain and really high pulse also have raynaurds I've never weighed this much before gained 20 lbs in 6 month! I work out everyday running 60 min and eat low carb or hardly eat on dex!

5/28/12 10:18pm

Thanks for responding! I have not been able to find detailed experiences as You describe for Dex. Yes- I take it for adult ADD, though It was only diagnosed 2 years ago (more of a racing mind). I am curious about your use, so not for ADD but edema? This is interesting as I would think our experiences would be Quite different (as far as how it makes us feel)...that's What they say anyway. I have tried spansules/tabs...right now I am Trying just tabs & recently went from 70 mg To just 40. I felt as though the spansules maybe Stayed in my system for too long. So do you feel that this med is the source of Your symptoms...have you ever gone off completely? Did you have Raynauds prior to, or also develop It after starting. You mention the weight gain- did you change your Dose at the time? Do you still find it kills your Appetite? I have not had weight gain , but have also had to Take Tramadol for pain in my hands, wrists etc. Sorry for all the questions....I cannot believe that so Many 'specialists' would brush off a drug reaction. However, what I have now been wondering is if It 'set off ' some sort of autoimmune train that was Just waiting to happen? I have been a fitness freak for most of my life, And now can barely do 30 minutes ! Feel free to ask any questions....it is great to Communicate with someone also having mysterious Symptoms.

5/29/12 9:38am

hi!! wow- we have a lot of the same issues with dEX!! I have such bad pain & knots in my body- bursitis and now they say could be fibromyalia. I do have autoimmune thyroid disease. i had been on thryoid meds in the past and always would have raynaurds when my thryoid is undermedicated. i went to my knew DR. that said - you dont have a thyroid problem it's idiopathic orthostatic edema and you take adderall or dex for this. Guess i need the dopamine from the meds to keep the fluid in the intravascular spaces when i am standing. i pee at night 2-5 times and this is one the sym. so i went on the adderall low dose and changed my thyroid medicine to t4 only. first 2 months lost 4 lbs felt better but knew i could lose couple more pounds so he changed it to dex and i begged him to add Cytomel (t3 med) b/c in the past i had only used t3 and had great success with it but he doesnt like to use (doesnt think people need t3 but that's a whole different story!) finally after I got the t3 then i lost 10-18 lbs. that from sept through april 2011 but after april couple lbs came back on so he upped the med again and again and again. last summer till sept. i was on 60 mg of dex spanuale throughout the day. Also, taking my thyroid meds (t3 can act like dex they are both sympathetic agents) so i was sweaty all the time, so hot, irritable and was not sleeping as much as i used to. My weight was 124 (normal weight is 120 before i went to this dr. but when the dex really worked i was done to 113). because i was scared of heartattack and all the pain that was going on in my body i started dropping the dose and doing research on the med.

i like you have always been a runner, love to exercise- weights, pilates, running, anytype of cardio. 6 mon into Dex i developed bursitis in my hips - never had this before! then my knees! and my shoulder blades are really weak- scapula muscles and have tons of knots there that cause stiff necks & constant pain.

I dropped the meds to 30 mg from 60 mb NOv 30 this past year and within 2-3 months i gained weight - now i am 133-135!!!! even doing cardio 60 mins a day and having healthy (well i dont really eat besides handful of nuts until dinner time!) never weighed this much before. depressing. every time i try to wean off this meds i feel depressed b/c it gives me energy and i think (but not totally sure b/c i have only been off 1-2 days) i will gain weight.

Ok, so i have been to a ton of DRS and i have found 2 that say the med is causing all my issues! one DR said the meds dehydrate you and it pulls the fluid out of the synovial joints and causes pain.

my other DR said early 90s people used dex for weight loss - it worked in the beg. but after they were on it for some time they had high pulse, pains, and weight gain! that the tachycardia caused their lymph system to stop working bc it couldnt keep up wiht the high pulse. so they have edema. i feel like that is what my probelm is - i have cellulite , fluid retention dimples on the front of my legs on thighs above my knees!! WTF?!?! just feel puffy bloated all over.

my dr that gives me DEX says this supposed to cure fibro pain, edema, etc. he has research articles online but i am not sure this is what i have! i think mine could be more thyroid related.

my pulse is over 100-110 when standing but only 70 when sitting. before this med i has a really low pulse- 34 while sleeping 56 standing. i know this b/c had to wear 24 hr monitor b/c of raynaurds years ago. that was all related to hypothyroid and once i started med it went away, lost couple lbs, no brain fog, more energy.

so i am wondering if dex is causing dehydration (plus i drink coffee, wine and reverse osmosis water which i just found has all the good minerals taken out) plus i work out everyday and sweat. so dehydration causing joint pain and then it causing my aldosterone to go really high b/c this is a salt/fluid retaining hormone. it's trying to keep the fluid in my body since i am dehydrated! now this is only my guess BUT i dont know what to do!

I am scared to go off the med b/c when i lowered it 3 months ago i gained 5 lbs that really wont come off. so i keep listening and hoping that this DR is right and that i need a higher dose. he wants me to try 75 mg!! i have only been up to 60 wanted to wean into that high of a dose.

thoughts??

5/29/12 10:55am

Have you ever been in contact with anyone experiencing the same symptoms?

I only ever read 'dex helped me concentrate...bla..bla'. I am starting to think that it helps anyone with a foggy brain! I have also struggled with low blood pressure

for years....the kind where anytime I stand up or croutch down then stand- everything goes black and I have to hold the wall for a second.

This idiopathic orthostatic edema....is that the same thing? I thought I was familiar with most issues- this one I'm clueless! Did your thyroid issues come after starting Dex? What were the symptoms of that? So Raynauds only when that is acting up?

I should mention that I am 39....part of this is I refuse to accept anything as an age issue......sounds like you and I are alike...I completely get the weight thing.

When you are pretty much always fit, 10 lbs feels like 50 lbs!

I tried going completely off Dex last spring/11....to see if Raynauds & pain stopped....I managed about a week. the Dr.'s made it sound like it took a couple of days to be out of your system, but I felt like I was dying....sooo tired and wanted to eat carbs/sweets. Pisses me off....does it just f*** up your system?

I also dropped weight at 75 mgs of dex...same thing, up late and running on little sleep. If I was told I have inattentive ADD, maybe the fog and distraction was just from having low blood pressure (I am seriously not and never have been an ADHD spaz or ever had anyone suggest it).....still not sure about this.

Here is the part I find interesting, if you dont have ADD and I do...then at the same dose.....would'nt you be feeling like you were on speed...high...all that stuff they say? Sounds like the side effects we had were similar.

I also had moments of worrying about a heart attack....yet by blood pressure

has been perfect, instead of low it brought it up to 120/80....then why the heart cart-wheels?

In spite of all this, like you- I am not loving the lower dose. Started to feel bloated too ( i am around the same weight). Holy shit- smooth skin started to get dimples.....I have not dealt with cellulite before!!

This must be a fluid issue as you mentioned....however sometimes not taking enough fluids causes water retention....grrrrr, what the hell?!

So back to reasons for taking it....you did find benefits? the worst side effect was.....sleep?

I cant believe you had Doctors who actually pointed to Dex's concerns....I can't get anyone to say it! In fact I think they want me on it as a benefit.

My GP put me on Wellbutrin while trying to wean my dose....it is a stimulant (ya right) so I started to wonder if it was the dimple monster.

But if you also experienced this- it is likely lowering the dose. What does this mean exactly I am not sure. Now I will try to find medical journals about this :)

Your suggestion about dehydration was also something I came across...I do find I dont drink as much (no desire?), does not explain raynauds etc.

But all this talk about it has me thinking that a significant increase in water is needed....it would be interesting to see what happens.

Do you think thyroid issues and meds are part of the weight change? Any suggestion for what may have caused this in the first place (how long ago?)

I have never heard of Dex used off label as in your case.....sorry, did you say your joint pain started when on the higher dose only.....do you have any improvement with the lower dose?

I don't.....so I am now wondering if going a bit higher is still better. Have you

tried using a combination of spansules/tabs....maybe only using tabs (no later than 5pm) would work better for you. They clear out faster & I think better for sleep.

I just cannot wrap my head around a med that has been used forever....is able to cause autoimmune symptoms....(I was even treated for Lyme in December)...and the medical community 'does not know for sure'?!

5/29/12 11:17am

Hi! Ok, on treadmill trying to type will reply more later- Look up dehydration joint pain, fluid retention Also I don't use electrolytes- do u? I drink ton of water 70- 100 ounces day pee constantly but I'm washing out my electrolytes just bought mineral trace liquid at amazon - it lowers my pulse from 107 to 88 in 5 mins (while standing)!!! No I don't think dex cause thyroid that was before dex - Dex is vasoconstrictor - google that with cellulite , fluid in thighs - blood vessels narrow so doesn't send blood tihighs so cellulite lack of oxygen Also vasoconstriction cause raynaurds!! My bp always low like 90/55-60 and super low pulse until dex Now bp same as yours like 110/80 but high pulse Yes I do feel speedy on it- actually taking adderall span this month and speedy feeling worse Dex span better not as speedy but I do feel alive and awake but sometimes irritable, stressed, sweaty, hot get your free t3 and free t4 tested see if they are top 70 Percent range I've read a ton of add related to hypothyroid also ur low bp a sign, cold hands feet brain fog What's ur pulse? Go to ADHD forum look up joint pain!

5/29/12 11:23am

Also, look up low magnesium potassium joint pain Dex pulls mag out of body cause pain I am 40 and won't take age either Never had pain ever now constant my friends don't understand and have closet full clothes don't fit Like u I get depressed , hungry when I wean off but I kinda feel like I had less Pain at 15-30 mg But dr says all pain will be gone when at correct dose Also think dex lowers tsh level so dr can't ready thyroid labs bc I look hyper but my free tlevels are lowish

5/29/12 2:55pm

Are you really hot on it?

5/29/12 11:07am

forgot to mention....I also had elevated CRP...do you remember what yours was?

Last spring an Internist decided I had Rheumatoid arthritis....perscribed Methotrexate (hard core) and Plaquenil....I knew this was not right....my brother who is an emerge Doc had me see one of his collegues (Rheumy) who said 'no'.

He suggested early autoimmune..Lupus? Take a wait and see approach....who the hell wants to wait and see?

This is why I wonder....if we both show some signs of changes with things such as

Raynauds, thyroid, joint pain.....is it just a coincidence that we are also taking Dex- and we are attributing it to be the cause.....when in fact we are showing early signs of something brewing...not to be the grim-reaper....just playing

Devils advocate......:)

5/29/12 11:09am

forgot to mention....I also had elevated CRP...do you remember what yours was?

He suggested early autoimmune..Lupus? Take a wait and see approach....who the hell wants to wait and see?

This is why I wonder....if we both show some signs of changes with things such as

Devils advocate......:)

5/29/12 11:52am

During normal movement of a joint, a minimal amount of cartilage cells are destroyed from friction, but are replaced without issue. When the body is dehydrated, cartilage loses the ability to glide smoothly and the additional friction causes an increased number of cartilage cells to be destroyed. Cartilage cells typically receive water and nutrients from the blood that flows through the end of the underlying bone. However, damage to the cartilage must rely on an increased flow of blood to the joint capsule that causes inflammation and pain. Lack of water not only increases the damage to cartilage, but prevents the healing. My crp was 5 Whats yours? Could be what u said- I think mine is under treated thyroid or thyroid resistance

5/29/12 3:05pm

Think this could be happening to me- do u eat on dex? Yes, this is definitely not surprising. Here what's probably going on. When your glucose levels are low, you become hungry. One way to increase the glucose levels is to eat food. Adderall increases your glucose levels artificially by stimulating the production of epinephrine (adrenaline) in your which then mobilizes your stored glucose. In the short term, you lose weight. Nevertheless, you have just artificially increased your glucose levels, so your body only thinks it is full. Overtime a couple of things begin to happen. 1) Your cells adapt to the effects of the stimulate, hence, your body does not mobilize as much glucose. 2) Also, your body begins to depend on the Adderall to keep the glucose levels stable. In other words, overtime when you take Adderall, your glucose levels are now what was normal a while back when you first start. Additionally, your glucose levels drop below normal when you are not taking the Adderall. Therefore, unless you continue to increase the does (which at a point becomes dangerous), you actually begin to become hungrier when it wears off then you were before you started. Another problem that does not help, is the fact that Adderall suppresses your appetite which in turn causes you not to eat. The stimulate effect itself does very little to boost your actual metabolism. In fact, when you cut back on your calories, your body has a tendency to burn off muscle. Muscle is very active tissue and the more muscle you have, the faster your metabolism, so in essence, Adderall in this way can actually slow your metabolism. Therefore, unless you are doing resistance training to offset any muscle loss due to a calorie deficit, you will find that overtime, you will need to consume less and less calories to maintain your ideal weight. In fact, over a 5-10 year period, Adderall and other amphetamines are not very effective at weight loss. This is why doctors are hesitant to use them. Also, they have a higher potential for abuse than other drugs, however, when use correctly, they can be very effective in aiding in concentration. One thing you may want to consider is trying a version of the drug that is time released like Adderall XR. While this may not solve your problems, it may help manage your problems a little easier, since a time released version gradually wears off, thus making it less likely that you will have a glucose crash after the drug wears off.