My Story


Living without pain gives life a whole new perspective.  It is my prayer that my story will help you get out of pain as well.

First of all, let me assure you that I was diagnosed correctly with fibromyalgia.  I was diagnosed locally and went to Mayo Clinic for further evaluation.  They put me through extensive testing; and as usual, nothing showed up.  Rheumatology at Mayo confirmed the FMS diagnosis.

As I began to study FMS, I found a couple of researchers in Birmingham, Alabama who were doing SPECT scans on the blood flow to the brain in FMS patients.  I had the scan, and a lack of blood flowing into the frontal lobes was documented.  The discouraging thing was, everywhere I went;  there were no new ideas for my treatment. 

My miracle began the day I was filling in for a friend making calls to the FMS support group members. As I went down the calling list, I asked each one how they were doing.  You can imagine the kind of answers I was getting.  On my last call, when I asked Mary how she was doing, she said "FINE!"  I asked, "What have you done, and where have you been?!"  Her answer was to change my life.

She told me she went to a doctor in a small town in Georgia (USA) who specializes in Attention Deficit Disorder.  That was a new twist to this already complicated scenario! Nevertheless, she had my attention.  The doctor spent an hour with her initially, asking her questions about her from childhood on. Much to her amazement, she fit the diagnosis criteria for ADD.  As she was describing the ADD criteria to me, I could see myself so clearly in my childhood as well.  She told me she was put on Ritalin (5 mg. per dose three times per day), and for four days felt no different.  Since she had no improvement, she was told to go up to 10 mg. 3 times a day.  She said every pain in her body went away!  Something told me to believe her, hoping that this would send a rainbow of light into my own life. 

After seeing so many doctors at major hospital clinics in the Southeast, I wondered what this doctor could know that they did not.  As she carefully asked me questions in order to discern if I met diagnostic criteria for ADD, it became apparent to both of us that this diagnosis fit me as smoothly as the fibromyalgia one did.  I was soon to learn, that, unlike Mary,  I would have a difficult time finding the right "recipe" of medications.


I found out early on that there is an interaction between stimulants  (Ritalin, Dexedrine, Cylert, Adderall...) and hormones.  After having a complete hysterectomy, I was given hormone pellets to compensate for natures provision.  I had been given too high of a dose, because doctors thought that more hormones  might help some of my symptoms.  The stimulants did not work well with that much estrogen in my body. 

My doctor, who is a female with Attention Deficit Disorder, told me she had seen this many times.  During a woman's monthly cycle, in days just prior to menstruation, many of her patients have to decrease or increase the amount of stimulant taken to get the right benefit with no side effects.  She has also noticed from her practice that at times of hormonal fluctuation--puberty, pregnancy, childbirth, menopause and times of major stress; the symptoms of ADD often change, for better of worse.  Although these symptoms  have always been there to some extent since childhood, they may not become a problem until someone goes through a time of hormonal changes.

I tried Ritalin and found that a low dose made my pain worse, but my doctor suggested increasing my dose.  (Increase it?! It seemed like that would make the pain worse.) I tried it, and the pain went away! But for me there were too many  "peaks and valleys" with Ritalin, so I moved on to Dexedrine, with basically the same response.  Cylert also gave mixed reviews.  However, because these medicines changed every symptom, making it better or worse; I felt something was here.  Because my thinking processes were so bad that I could not read and comprehend anything easily, I had to keep trying.  I had been a teacher for 22 years and could no longer focus.  Since I fit the ADD criteria so well, and this might be my last hope, I could leave no stone unturned.

At this point my psychiatrist, who also treats ADD, gave me some suggestions that were ultimately responsible for the turn around in my life.  He put me on  Wellbutrin (bupropion), which is an antidepressant that affects mainly dopamine instead of serotonin and is used also to treat Attention Deficit Disorder.  This was perhaps my last best shot at a medication that would give me the highest quality of life.  I wanted to cry when I was told that it might take up to four to six weeks to work.  I needed a miracle and I needed it now!  At first the medicine made me very anxious, so I thought I could not take it.  My doctor combined a small amount of anti-anxiety medication with it, which was enough to calm the storm.

I have since learned that many adults with ADD have to combine a stimulant with an anti-anxiety or antidepressant medication for optimal effect.  (I had tried the selective serotonin reuptake inhibitors -- such as Zoloft, Paxil, Prozac-- earlier with no noticeable benefit.  I later found out that I could benefit dramatically with Ritalin. I could not tolerate it alone, but when mixed with a low-dose antidepressant, it worked well. (See our Information Sheet for more details.)  

Acording to Dr. Edward Hallowell, co-author of Driven to Distraction, the right combination of dopamine, norepinephrine, and serotonin (the chemicals affected by stimulants and antidepressants) will have the most telling effect on the symptomology of ADD. (1) (Most of those I know with FMS, who have responded positively to the ADD meds, combine a stimulant with a small amount of antidepressant or anti-anxiety medication.  Buspar is a good anti-anxiety medication (addresses serotonin) and it seems to mix well with Ritalin (which addresses dopamine and norepinephrine).  There are endless possibilities when combining medications. 

To cross-reference that, FMS researchers have uncovered evidence that suggests an alteration in metabolism of various neurotransmitters such as serotonin, norepinephrine and possibly dopamine, in fibromyalgia patients.(2) (It is my understanding that you have to be diagnosed with ADD in order for doctors to prescribe stimulants.  Because of alleged abuse in the nineteen seventies, these drugs are controlled substances.)  For those who need them for normal functioning, these drugs are not habit-forming. (You can walk away from them, if you choose, unlike many of the drugs prescribed for FMS.)  But because of media campaigns launched against the use of stimulants, and because they are controlled substances (which have to be tightly managed), many of your doctors will raise an eyebrow if you tell them you want to try a stimulant.  If you see yourself in the ADD diagnostic criteria, see someone who diagnoses and treats ADD in adults.  Learn about the medications so you can make intelligent suggestions in a very kind,  non-threatening way.  No one is more interested in your case than you are.

When I was able to find the right "recipe" of medications, I noticed major changes in my body.  The headaches went away, irritable bowel syndrome vanished, urinary frequency was gone, muscle pain vanished, energy returned, cognitive function improved, sleep was better, along with a host of other changes (too many to list).

Driven to Distraction, by Dr. Edward Hallowell and Dr. John Ratey (ISBN 0-684-80128-0), includes a good chapter on medications.  Also, your drug store probably has information on each medicine.

Very few doctors who treat ADD know of a connection with FMS, so be careful so that you do not scare them off. Many patients with ADD have no pain, or pain that has been connected to fibromyalgia. (The doctor who specializes in ADD also has ADD.  She has classical FMS symptoms if she does not take her Ritalin.)  If you see yourself in the enclosed ADD criteria, approach your condition from an ADD standpoint. 

NEW MEDICAL DOCUMENTATION

There is some recent research done by Dr. Andrew Holman, Myers, and Dr. Patrick Wood linking low dopamine levels in fibromyalgia patients. The medication Pramipexole enhances dopamine as do stimulant medications.

In the double-blind led by Holman and Myers, placebo-controlled trial of Pramipexole, a dopamine agonist, a subset of patients with fibromyalgia~50% of who required narcotic analgesia (pain medications) and/or were disabled, treatment with pramipexole (affects dopamine) improved scores on assessments of pain, fatigue, function, and global status. It was safe and well-tolerated. 

In Dr. Wood's research on dopaminergic mechanisms, he says, “In summary, these results Indicate mesolimbic dopamine neurons contributes to suppression of tonic pain, presumably via activation of postsynaptic D2 receptors in the nucleus accumbens.”

In short, what I believe they are saying is, dopamine can suppress pain, or
turn it off. To me, this is not just controlling a symptom, but reversing the faulty chemistry that inspires it.

The first medical documentation that I found regarding this connection was done by a group of German physicians. They found that many cases of fibromyalgia respond well to a treatment of stimulants and other medications used to threat AD/HD. This study was done by Krause, Krause, Magyarosy, Ernst, and Pongratz.



One note of caution, if you do fit the ADD criteria, there is one big question that is not easily answered.  If you do not hit the right "recipe" on the first try, as I did,  it is hard to know if what you are taking has not had time to stabilize in your body or it is the wrong "recipe".  If you really believe you have ADD, do not give up.  Do not let the uncertainty keep you for going for a life, even if you have to wait awhile in between tries.  Learning the meds will come in handy here.


If you are troubled with allergies, as I am, I have found that allergy shots and antihistamines seem to work well in conjunction with all of this. (Histamines are neurotransmitters in the brain!)  Sometimes juggling this can be sticky, but what else have we got?  Do not look at the big picture, it is too big.  Just claim today and chart your progress.  Pray for God's guidance as you proceed. 

Document daily the changes so you will know what is going on.  PASS ON what you learn to someone else.  If you find benefit, be somebody else's "cheerleader".  Educate your doctors even though they give you the "nut case" look.  (My former doctors can look at me and see major changes that lend credence to my story.) 

Please remember that ADD is often a disorder of the gifted.  You may be highly educated. This seems to be a stumbling block for so many intelligent adults.  They see it as a disorder for underachievers when often it is in reverse.  Remember there is no "cookie-cutter" look that is prevalent in so many other disorders.  No two are exactly alike. 

I shared this story with my FMS support group and asked them if they could see themselves in the ADD criteria.  There were heads nodding all over the room.  It is interesting that so many of our children have ADD.  Several of them have been diagnosed as a result of this and are doing so much better in school.

Those of us who have benefited from the ADD medications have received a range of help from it.  Most of us say that we have a life for the first time in many years.  Not all are one hundred percent improved, but all that I know have more energy, and for the most part are out of pain.  (I am able to enjoy a three-mile vigorous walk each day.)  Even though my cognitive skills are much improved, there are still "glitches". I choose to focus on what I have instead of what is missing and, in turn, have found great peace about it.

If large numbers of us respond with this kind of bodily changes, the medical community will have to acknowledge it and ask why.  Maybe specialists would put their heads together.  It is long over due.  It seems to me that this could pave the way  to find the biological "glitch" that causes all of this.  Finally, the world, especially our families, will know that we are not given to weakness; but have developed inner strength, courage, and determination beyond their wildest imaginations.

I investigated how to send this story down through the normal medical research channels. I was told it would take 5 to 10 years to reach you if accepted.  If something of benefit is here, I could not wait that long to share it.  Also, any disorder that crosses several medical specialties probably would get filed under "miscellaneous".

I would like you to e-mail me, if you find benefit.  After this article, I have added a survey following the use of ADD medications. Please fill it out, using specific terms.

May God bless each of you and crown your efforts with success. Do not expect it to be easy. Do not quit trying if you see yourself in the ADD criteria. Cheer each other on and embrace the victory. Smile, there is hope !