The ADD Diagnosis

In order to be treated with ADD medications, you must meet ADD criteria. ADD medications cannot legally be used to treat fibromyalgia, because currently they are only indicated for ADD or narcolepsy ("sleep attacks"). My suggestion is to do your homework and see if you meet the criteria for ADD. If you are not sure, get a good book on ADD, such as Driven to Distraction by Dr. Edward Hallowell and Dr. John Ratey. It describes some of the finer points of the disorder in a way that will help you to get a more accurate picture of ADD. There is also a good set of criteria at www.amenclinic.com. Go in under "test." Dr. Amen has a book entitled Healing ADD, which mentions that ADD and fibromyalgia are often companion disorders.

If you fit the ADD criteria, find a doctor who treats adults with ADD. Take with you one or two sets of criteria already filled out. Mention ADD within the first few minutes, before your doctor puts you into another preconceived slot. (I am told this can happen very early in the appointment.)
 

The ADD Medications

The medications for ADD-stimulants--are not habit-forming for those who have ADD. Many children take them throughout the school year, and then leave them off in the summers, without withdrawal symptoms. Ritalin and Dexedrine have been around for fifty years and have a safe track record in treating ADD. The newer medications (Adderall, Concerta, Metadate) are reformulations of the older ones. Some FMS/ADD patients who have improved with stimulants have been using them 6 years+. After reaching our maintenance dose, we do not have to increase the dose to gain the same benefit, and taking too much causes side effects; so there is no addiction for those who need stimulants therapeutically.

Many doctors are unwilling to prescribe stimulants, partly because they risk being audited if they prescribe them liberally, and.possibly due to their misuse as recreational drugs in the 1970's. The stimulants are schedule II medications, which means they are "controlled"--cannot be refilled or prescribed over the phone. You must have a hand-written prescription each time. (It can be mailed to you between visits.)

Once diagnosed with ADD, there is much to learn. There is no "recipe" that work for everyone, but stimulants are the mainstay of treatment for most. The dose is highly individualized, and one medication may work better than another for you. Many do well with the first stimulant prescribed, but not always. Remember: The RIGHT DOSE of the RIGHT MEDICATION at the RIGHT TIMES should give you GOOD RESULTS with NO SIDE EFFECTS.
 

The ADD Journey (finding the therapeutic window)

Improper dosing is the most common mistake made in treating ADD. There is a small therapeutic window where stimulants work best. With too little, the results will be less satisfactory. With too much, you will have side effects-anxiety, poor sleep, poor concentration, headaches, worsening of pain, etc. But at the proper dose, "all the lights can come on in a very dark room". This is a journey. It can be very easy, or very frustrating. It took me six months, but most find the optimal dose within a few weeks. Many improve the first day. My advice is to expect some problems and be prepared for a few "bumps," but persist, to get the best results.

I had a "fibro flare" several times during those first few months, but nothing else promised to give me quality of life if the stimulants didn't work. Fibro flares are to be expected from time to time. If it got too hard, I would back off and hit it again as I gained my strength.

If you are a woman, you will find there is a direct interaction between your hormones and stimulants. The doctor who has worked with many of us says you may need to increase or decrease your dose just before your menstrual cycle. I have found that to be true, even if you are post-menopausal. Hormones can work "hand in glove" with the stimulants. When my hormones get too low, the stimulants don't work as efficiently.

The oral hormone pills did not work well for me. For some of us, according to an endocrinologist, the hormones taken orally get "lost" in the liver. What works best for me is a hormone shot, because my body absorbs it more efficiently. If you need to take hormone replacement therapy, find out what works best for you. (If you are not sure if your hormones are low, see your gynecologist and ask to have your hormones checked.)

Many of us with FMS have been told that serotonin is the "silver bullet ". I have watched my own body completely ignore the benefit of serotonin when taken alone, and respond miraculously to the chemical dopamine. Stimulants affect dopamine and norepinephrine receptors. Many chemicals affect the production of other chemicals. (Serotonin affects dopamine and vice-versa.)

The serotonin medications, which did nothing for me initially, responded very well when added to the stimulant Two years ago, I was unable to take Ritalin alone. Recently, I tried it again, and I can now take Ritalin. When I added a low-dose antidepressant, Ritalin worked like a new medication. I take Ritalin 10mg three times a day with Pamelor 20 mg at bedtime. (Right after my hormone shot, I back down to Ritalin 7.5 mg for a few days, to get a smoother response. Some women have to go up slightly. ) Another woman is taking Paxil 5mg with Ritalin. Others are taking BuSpar or Zoloft or Wellbutrin with the stimulant. Some have great benefit from the stimulant alone. All the SSRI (selective serotonin reuptake inhibitors) and the tricyclic antidepressants seem to work well with the stimulants. BuSpar, a non-sedating, non-addictive, anti-anxiety medication that affects serotonin levels, also works well with them.

One lady recently tried Ritalin, and it gave her "peaks and valleys" (inconsistent benefit). I suggested she ask her doctor about adding BuSpar. She is now completely out of pain with this combination. Some find success by taking beta-blockers with stimulants (especially those with rapid heart rate or palpitations without the stimulant).

Ask your doctor for a little room to raise or lower the stimulant. You might find, as I did, that moving it very slightly makes a world of difference. For me, too much Ritalin makes me feel very anxious; not enough can have the same effect. When I began Ritalin recently, I started at 10mg. It removed the muscular pain, but it was not real smooth and I felt anxious. I dropped it to 7.5mg, and it was as if the "turbulent seas" calmed. (I had recently had my hormone shot.) There is a very small therapeutic window for most of us.

Again, improper dosing of the medication is the most common mistake made in treating ADD. Be patient. Some of the stimulants stay in the body only 4 hours. That can vary greatly from person to person. If you begin a little too high or low, you can back down or go up a bit. But try to stay at the same dose for a few days, if you can find a place that is reasonably comfortable, so you can see a pattern of response to that dose.

Keep good records as you raise or lower the dose. (Do this only as your doctor prescribes or allows you to.) Record your response daily so you will know what is going on. Set out all medications for one day, or put them in a pill container. Remembering to take the meds is a challenge for most of us, but it can be easy if you find your system and stick to it.

Remember to change only one medication at a time. Give your stimulant a few days to stabilize. Stimulants work much more quickly than the antidepressants. My advice would be to try them, and if you can't get to a comfortable place, back off. Get an antidepressant "on board" and try again. Or if you are currently taking an antidepressant, don't change the amount at first. Just add a stimulant. Most of us find we can back down our dose of antidepressant to a small dose. All of this is trial and error. (I know so many who have won their lives back by being persistent.)

ADD can be made worse by stress, so try to eliminate as much stress as you can in your life. ADD can also be affected by the hormonal times of your life, such as puberty, childbirth, stress, menopause, etc. It is not always the same every day, just as FMS changes from day to day. It is an inherited condition.

Some of us are taking only stimulants and some only stimulant + antidepressant. Stimulants combine well with most other medications, and you can often wean slowly off other medications, as your doctor allows. Blood pressure, sleep disturbances, pain, cognitive problems, urinary frequency, IBS, headaches, etc., usually improve or normalize.

Most of us who respond to the stimulants have great improvement in our sleep, even though insomnia is one of the possible side effects. Some of us take them at bedtime to help us sleep, and others cannot sleep if they take a dose after 4-6 p.m. Stimulants are used to treat narcolepsy ("sleep attacks"), for those who cannot stay awake during the daytime, but often improve nighttime sleep for those with insomnia. They have the potential to balance sleep.

Some of the stimulants are: methylphenidate (Ritalin, Concerta, and Metadate), dextroamphetamine (Dexedrine, Dextrostat), and Adderall (a combination of four amphetamine salts). Adderall comes in seven different strengths-5-, 7.5-, 10-, 12.5-, 15-, 20-, and 30-mg tablets--each double-scored, for the best dosing flexibility of any of the stimulants (as of now); but it is usually taken 2-4 times a day, depending on your metabolism. Metadate is an 8-hour preparation, and Concerta is supposed to last about 12 hours, but they only come in multiples of 10 (Metadate 10- or 20-mg tablets) or 18 (Concerta 18-, 36-, and 54-mg tablets), respectively, and cannot be broken or chewed, because of the timed-release mechanism. Since the therapeutic window is sometimes very narrow, it may lie somewhere between available doses. Ritalin comes in 5-, 10-, and 20-mg tablets, and the SR 20-mg (sustained-release) tablet. (Many are disappointed with the Ritalin SR product.) Dexedrine comes as a 5-mg tablet and 5-, 10-, and 15-mg Spansules (long-acting). Dextrostat comes in a 5- and a 10-mg tablet.

Other news medications are available such as new non-stimulant medication such as atomoxetine, Focalin and Focalin XR, modafinil, and well as many other medications.

Wellbutrin is an antidepressant that affects dopamine receptors. It is also one of the medications used in the treatment of ADD. It worked well for me when I mixed Ativan (a sedative) with it. After two years it wasn't working as efficiently, so I changed to Adderall. It worked, but not as effectively as Ritalin for me. Others prefer Adderall. These are some examples of what you might try. (If your doctor is tries you on Ritalin, request the brand name. The generic is not as effective for some who have tried it.)

If you need more information on the medications, a book with a good chapter is Driven To Distraction by Dr. Edward Hallowell and Dr. John Ratey. Learn the medications so you can carefully suggest, or intelligently discuss, your next option. Most doctors are impressed if you have done your homework. Be careful to not overpower or threaten the authority of your doctor. This will be new to most of them. How you approach them can determine whether they work with you on this. If they see a major transformation with you on the stimulant, they will most likely believe you!

Pray that God will help you find your "recipe," and educate everyone who might benefit. If you win, you win BIG. If you see yourself in the criteria, don't stop until you reclaim your life. Let me know how you come out. Find someone who will cheer you on. Find or create a support system where you can account to others who have FMS and also meet ADD criteria. If you find your life again, don't take your miracle and go home! Be a part of helping the rest by telling your success story.

IN SUMMARY

1. Study ADD. Print out criteria. Read. Ask a loved one to check you against the criteria. Often we don't see them in ourselves.
2. If you fit the criteria, find a doctor who works with ADD in adults. Mention ADD early in your appointment.
3. Be prepared to work with the medications. You may not feel better until you are near your maintenance dose.
4. If you are post-menopausal, make sure your hormone levels are assessed. Many of us don't need added hormones, but many of us don't benefit from stimulants without them. 5. Keep telling yourself there is a way to get well.
6. Seek God's guidance as you move forward. Prayer turned the tide for me.

You can contact Patricia at addfibro@yahoo.com

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