Fibromyalgia and Adderral

• By dizzybee
• Posted October 18, 2008 at 11:47 pm
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I do take adderall 3x daily (15mg). I have dysautonomia, which is sorta like fibro on steroids :)

I don't know if it really helps or not, b/c I'm afraid to stop and sleep for a few years.....

You have to find a dr. willing to rx it. And they can only give you a script once a month, b/c we are over 18 so we can't have it (kind of strange huh, giving a kid amphetamines is ok)

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• By blessed375
• Posted October 19, 2008 at 12:46 pm
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It's intersting that you say dysautomia. I wonder b/c I have FMF I have read dysautomia is often related to it.

I have frequent bouts of shortness of breath and heart palpitations and low body temp. How did you obtain your dx of dysautomia and who prescribes your adderral?

Do you have any unusual side effects from it?

Thank you

Jen

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• By Kathie1
• Posted October 19, 2008 at 1:20 pm
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My son has POTS, a type of dysautonomia. He is on year 3 now. HIs biggest problem now is the faitgue. His Dr. and nurse practiotioner have put him on adderal to counteract the fatigue which has been debilitating as of late (sleeps 20 + hours in a day) Dr. Grubb is his specialist. If you go to dynakids.org or Dysautonomia Information network (DINET.org) you can find a listing of POTS symtoms. Hope this helps. Kathie

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• By blessed375
• Posted October 19, 2008 at 1:53 pm
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Thank you Kathie -

It is ironic you say this.....I saw a cardiologist last month b/c I blacked out in Walmart. I had to wear a 30 day halter monitor and my heartrate would be 75 or so sitting and jump 40 bpm just from standing.....Every single time. When I mentioned POTS she said POTS is the same thing as Orthostatic Hypotension. I am convinced the Heart rate thing, Fibro symptoms Low temps etc are all connected. How was your son able to get on Adderall since the federal govt. mandates a diagnosis of ADD for its use? I guess those of us who are so fatigued and sleep all day would fit into the ADD catagory.

Interesting info.
Thank you
Jen

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• By Kathie1
• Posted October 19, 2008 at 3:22 pm
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It sure sounds to me that you have POTS. There are so many resources that are available to get the information. You will find plenty of correlation between POTS, CFS and fibromyalgia. Based on what you just described it sounds pretty likey to me that you could have POTS. You may want to try to get into see Dr. Grubb and/or his nurse practitioner, Beverly Karabin. You can also email me at Kschwarz@woh.rr.com. As far as the script, I do not think that the only reason adderall is ordered is for ADHD. Adam takes it to counteract the severe fatigue. Does that help you in any way? Hang in there girl! Kathie

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• By blessed375
• Posted October 19, 2008 at 7:36 pm
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Thank you much!! I will keep you posted as to what I figure out this week.

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• By dizzybee
• Posted October 20, 2008 at 11:14 am
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POTS and Ortho Hypo are different. POTS is Postural Orthostatic TACHYCARDIA Syndrome. When you stand your bp drops and your heart rate goes fast. Mine is stand up, fall down, bp drops and so does hr.

Dr. Grubb and Vanderbilt and the preminent researchers in dysautonomia. You can check www.dinet.org and www.nord.org both have lists of doctors in your area that treat dysautonomia. The usual gold standard test is a Tilt Table Test (Study) this is done by a cardiologist. It is painless, they hook you to EKG and strap you to a table and sit it up at an angle and monitor your hr and bp this way they can tell exactly which dysautonomia that you have (there are several diff. types). But I urge you to see a specialist to treat it. Most doctors have a. Never heard of it/your're making it up, or b. will prescribe the wrong meds that will do you more harm than good.

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• By dizzybee
• Posted October 21, 2008 at 12:11 pm
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you don't need to have ADD to get adderall. You need a good doc who is willing to say that it is medically necessary. Most ins. will cover it (I have BC/BS), but they will send you a letter saying that they will only let you have it for a year. My dysautonomia doc. first rx'd for me, but he is in Pensacola (6 hrs away) and now my primary care does it, so that the pharmacies don't think I'm dr. shopping or selling it. It's good to keep all your eggs in one basket when it comes to meds.

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