Reversing Chronic Disease
Reversing Chronic Disease
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Testimonials for ADD/ADHD-Fibromyalgia Connection

I am a psychiatrist who directs an outpatient clinic in ….

Five years ago I did not know that ADD exists in adults, nor did I know anything about FMS. Discovering the widespread incidence of ADD in adults led me to hear more and more about Fibromyalgia and Chronic Fatigue Syndrome (called by various names).

I have seen many cases where the medications given for ADD reversed the pain in Fibromyalgia patients as you describe on your Web Pages. I have also seen reversal or vast improvement in the symptoms of Irritable Bowel Syndrome (IBS), Esophogeal Reflux, Migraine Headaches and other medical disorders. The connection is very clear to me and my patients.

I believe you are "right on" with the information and encourage and support you and all who read and benefit from what you are writing here. Many physicians could learn from what you are saying. If they do, they can begin to help many who they are treating only symptomatically. They can help to restore HOPE as you are doing.

Blessings on your work.

I searched this out a few years ago but no-one had come up with this link. I am a family practitioner on.......... and found out I had adult ADHD just before my 40th birthday because my clinic was under construction and chaotic. I am the calmest one in the room in an emergency. I had so many somatic symptoms before my diagnosis that I was sure I had fibromyalgia, yet when I understood the reason for the fatigue and brain fog and sense of not being understood, it dawned on me that those patients I were treating also had it. I have screened every patient I have that carries a diagnosis of fibromyalgia or chronic fatigue syndrome and 99% of the time, they are testing strongly positive. I would love to collaborate with you to prove this. My partner asked me if I thought this was a cofounding factor in fibromyalgia...I actually believe it is the etiology.
..............., M.D.


Dear Patsy -- it has now been five months since I last corresponded with you. It took a little while to balance my medication. I wanted to let you know that I have been pain free for that entire time and have only experienced a few (2 or 3) bouts of exhaustion which did not last through an entire day into another and were in no way as severe as I had before. I finally did get my medications balanced -- I added the Prozac back and adjusted my Adderall downward. I take between 20 and 40 mgs of Adderall a day -- usually 20, sometimes 30, and very rarely 40, when I know I must perform on the job for 12 hours or longer or have other responsibilities that I need to attend to that will not allow me to keep my regular schedule of sleeping. With 40 mgs. I do suffer some side effects, but not severe (difficulty sleeping, minor irritability). I have a wonderful psychiatrist who has worked very closely with me.

I cannot tell you what your responding to my e-mails last summer meant to me. Near that same time, before I started on the Adderall, I can remember going in an empty office in the evening while I was waiting on my husband to pick me up after a meeting he had, and just laying there and crying. I was so tired, and just so sick. I suffered terribly from malaise. After lunch at work I could hardly clear my head and put my thoughts together to function. I NEVER committed to any activity after work or on the weekends. The only way I could continue to work was to utilize every moment away from work to rest. In fact, my husband had retired early to take care of all our affairs as I was not able to do anything other than barely work through each week. No one knew that I would go into an office several times during the day and lay on the floor -- stretching my legs against the wall. The firmness of the floor and stretching seemed to give me the tiniest bit of relief for that moment.

Today I am very active. I feel like I have been given an entirely new life. I know I take a lot of medication and sometimes worry that in itself may cause me health problems or shorten my life -- but I will not regret the course I have taken, because I live and participate in each and every day of my life now and that is worth any price.

I have not shared this information with my internist because I never went to him for my FMS nor told him about it for fear of being labeled a hypochondriac or being judged for having a "psychiatric" disorder. I'm sure you know that type of discrimination exists. All of my medication is managed by my psychiatrist. I hope to share this information with my internist eventually.

Thank you for the work you are doing. My hope is that each and every person who suffers with the phantom FMS will find relief somehow, some way, and be given back their life as I have been. I am looking for ways to share this information as you have encouraged me to do. You are welcome to share anything but my e-mail address that I have sent you with anyone you think it will help.


Dear Ms. Stephens,

      I am a 27 year old doctor just finishing my training. I have been suffering with fibromyalgia for 8 years, and my husband was recently diagnosed with ADD. My mother in law has fibromyalgia, and I believe one of her other sons also had ADD. I know that I have fibromyalgia, but I am also pretty sure I have ADD (since I read the criteria that my husband had in Hallowell’s book). I believe that stimulants would help me. My Psychiatrist does not want to treat me with stimulants because she does not think they are indicated. This she just told me today, and I was feeling so depressed and misunderstood until I came home and saw your web site. Perhaps this will give me ammunition, and I am considering changing doctors unless she is willing to be a little open minded about this. I am wondering if this could be a continuous spectrum or family of illnesses. It is probably the lack of overlap between research in psych and medicine that has hindered the discovery of this. Also it seems that women with ADD are often misdiagnosed maybe because they have less hyperactivity. I also heard that ADD people are often attracted to one another. I imagine our children will have it too at least we will know how to help them!!


     I enjoyed your web pages. I am a rheumatologist. I see a great deal of fibromyalgia. I have found some interesting associations. There seems to be a great deal of Sjogren's Syndrome in patients with FMS. If you look at series of FMS patients that have been published, there is a large number of sicca symptoms--dry mouth and dry eyes. We stumbled on this by accident. We sent one of the patients with FMS for a lip biopsy and it came back grade 3 Sjogren's! We started to see a pattern--FMS, MVP, Sjogren's Syndrome, cognitive problems (like ADD-never thought of it as ADD--cognitive problems assoc. with Sjogren's have been reported), chronic fatigue, Hashimoto's thyroiditis, premature hearing loss, chronic interstitial cystitis, neuropathy, interstitial lung disease. Of course, not every patient gets every problem. Not every patient with FMS has Sjogren's. We recently have started using Zanaflex, a alpha-2 sympathetic agonist which is similar to the BP medication Clonidine. This has helped with the FMS. It is approved for muscle spasticity. We have also used Florinef for some of the patients with severe fatique. Of course, we used antidepressants, muscle relaxers, NSAID's, etc.


I've enjoyed your information regarding fibromyalgia, and your efforts to help others with fibromyalgia. I found your web page through Addvance, then recently read your comments on the ADD board of WebMD. I'm Dr. ........

I've seen children and adults with ADD for the past 16 years, and once or twice a year see someone who also has fibromyalgia. Retrospectively, I do think there has been a moderate amount of pain relief with the addition of a stimulant. Stimulants have been used to augment pain medications--the combination of caffeine with aspirin for example. I've developed an extremely painful neuropathy myself, and am currently on Neurontin for that, which is somewhat helpful. I recently took my kids to Disneyland, didn't take my stimulant for ADD as it wasn't needed, and had a dramatic increase in pain. I didn't pick up on a possible correlation until I returned and restarted my stimulant, with an immediate reduction in pain. You've increased my interest in finding the right combination of medications, which I've always done for ADD, but now also for the fibromyalgia component.

I wish you the best in your efforts.


I suffered with fibromyalgia for years and have been in "remission" for approximately two years. In looking up information for a friend on the subject---I think she has it---I couldn't believe what I saw on the choices for the subject. Fibromyalgia and A.D.D.? I thought I was the only one that had discovered this! During the time I was suffering so, my doctor told me he thought I had A.D.D.---both of my boys have A.D.D. Through a veil of tears, I told him yes as I had realized that I had A.D.D. years ago and was afraid my doctor would think I was a nut if I told him this. After taking my FIRST Ritalin, I got immediate relief. So much so that I told a fellow sufferer, also a nurse, about it and she laughed at me. I am going to phone her right now and prove to her that I wasn't crazy after all. I no longer take Ritalin---am trying to manage the A.D.D. on my own with less sugar/caffeine---but will begin stimulant treatment if my fibromyalgia returns.

THANK YOU for sharing this with the hurting, tired, and bewildered masses of fibromyalgia sufferers!


Dear Patricia,
I enjoyed reading your webpage on fibromyalgia and ADD. I am a psychoeducational consultant on ADHD and I have fibromyalgia. I have been on stimulant medication for close to 15 years now, and am very familiar with psychotrophic drugs. While you're theory is the first one I have even heard or read about, I, too, have always believed that there is a connection between ADHD - predominantly inattentive type (ADD), and fibromyalgia, for three reasons. First, as an ADD adult I can't ever remember not having the brain fog or fatigue that is typically attributed to fibromyalgia, and second, most of the women I know with ADD who are past the age of 45 complain of fibromyalgia like symptoms.


(This is from a psychiatrist.)

     I appreciate the story you have shared and the positive experience with psychostimulants.
     In my experience, Chronic Fatique Syndrome and Fibromyalgia have a major depression underlying the disorder. With the exception of some trycyclics for Fibromyalgia, antidepressants are not particularly effective. However, the psychostimulants can offer relief for treatment resistant depression.
     I have yet to see anyone encounter a problem of dependency on these drugs. Because of the nature of my practice, I used this class of medication a great deal.


(Her first letter)

DEAR PATRICIA,
      I THINK YOU MAY BE ANSWER TO MY CHRONIC PAIN. YOUR ARTICLES REALLY HIT HOME. I AM A 47 YEAR OLD WOMEN THAT HAS ADD AND A DIAGNOSES OF FIBROMYALGIA. i LIVE IN ATLANTA SO WHEN YOU MENTIONED ABOUT THE DOCTOR IN USA AND THE SPECIALIST AT EMORY I GOT REAL HOPEFUL. I CALLED EMORY MENTAL HEALTH THE ONLY PERSON THAT THEY REFERRED ME TO WAS An AUTISM SPECIALIST BY THE NAME OF JOHN GRIFFITH. I AM A MEMBER OF KAISER HMO SO I WENT AHEAD AND MADE AN AT WITH MENTAL HEALTH, BUT I FEEL LIKE I AM ON SHAKY GROUND IF I GO IN THERE TALKING ABOUT WANTING A STIMULANT TO ADDRESS MY CHRONIC PAIN. PLEASE SEND ME THE NAMES OF DOCTORS THAT WONT THINK IM SOME CRAZY MIDDLE AGED WOMEN LOOKING FOR SOME SPEED. ALSO WANTED TO SHARE WITH YOU THAT IM STUDYING TO GET MY, BS, HOLISTIC NUTRITION FROM CLAYTON COLLEGE IN BIRMINGHAM, ALA. IM ALSO A SCHOOL NURSE WHO HAS WORKED WITH AA/HD KIDS FOR THE LAST 6 YEARS. I ALSO HAVE MY OWN THREE KIDS THAT HAVE DIFFERENT SEVERITY OF ADD, HD. MY YOUNGEST ONE, A BOY IN PARTICULAR REALLY STRUGGLES WITH IT. HE IS CURRENTLY TAKING CONCERTA 18.5 ONE TIME A DAY. I WANT TO START STRARETTA BUT KAISER DOESN'T COVER IT YET. IT WOULD COST APPROX. 90 PER MONTH FOR HIM TO TAKE.
DEAR WOMAN PLEASE RESPOND TO MY PLEA.


Dear Patsy,

      I don't no where to start, so if I ramble please bear with. As I told you last week, my son takes Concerta 18 mg one time a day. Recalling in the past when I had taken psuedofed I always felt so focused and on task ,always joked and said it was the perfect drug for my ADD. IN reality my ADHD had always been a part of me. It spelled a disastrous child hood filled with failure and reducible. As an adult it seems as though I had come to terms with it. I had always been hyper so the need to run at full speed just seems to come in handy when I produced three ADHD kids myself. My impulsive behaviors continued when child like blurting out grew into being an outspoken adult. I would like to think my learning style has adapted to my disorder. I tell people I am a visual learner, I think it helps me retain what I, m learning.
     Over the last several years the hyper vigilant life style has taken its toll on my energy it was replaced with fatigue, muscle pain, and chronic stiffness, I told my self I had rheumatism even though a couple of doctors tried to tell me I had fibromyalgia, I didn't want that label because to me that meant I was a narcotic person that was a head case. I went to several doctors in an attempt to find out what was really wrong with me. I have spent hundreds of dollars on supplements and chiropractors trying to fix myself.
     That pretty much brings me to the present. Several weeks ago I found myself coming to the resolution that I would probably spend the rest of my life on Celebrax and because of that choice my life could possibly be shortened. You see I only have one kidney and anti inflamatories are metabolized by the kidney thus putting it at risk for a multitude of problems. I felt as though I was ready to take it verses sitting on the sofa with a heating pad on me. That's when I thought I would get on the net and take another look around as a last ditch effort before my final resignation to anti inflammatorys. I really cant tell you how I even came across your site. I can tell you every thing you said just clicked,
     I started taking my sons Concerta the next day. I knew it wouldn't hurt me because of my previous experience with psuedofed. It literally worked like magic. With in 24 hours my pain had diminished greatly and my stiffness is literally gone. After three days of success I felt I should move rather quickly to obtain my own RX of the drug because being a LPN I didn't want to be put in any compromising situation. I decided to make an appointment with my mental health PROVIDER TO APPROACH IT FROM THE ADD ANGLE. I WAS SURE THEY WOULD LABEL ME NUTTY IF I TOLD THEM I WANTED IT FOR PAIN RESOLUTION. I found myself getting really anxious on how I was going to justify wanting stimulate medication. Isn't that kind of funny, an ADD trying to sell themselves as an ADD
     For the last couple of years I have been seeing an allopathic doctor ,that dabbles in natural medicine if the individual patient so desires. He has been a true friend and has given me every referral, medication, and therapy that the HMO has allowed. I truly believed he might listen to your articles and he might just be open enough to get it. Well, I saw him yesterday and he did get it, He wrote me a RX for Concerta and gave me his full support on this avenue
     I just got back from a three mile walk and I feel great. I feel like I’m coming out of a long dark tunnel. I find myself holding back, because I am afraid I, m going to wake up in pain one of the morning and the viscous cycle will start again
      There are no words that can express my deep gratitude. I will carry your message and hopefully be able to help someone someday like you have helped me. Your work is truly a mission.
Thank you

(NOTE FROM PATRICIA: In no way do I endorse taking any one else’s prescription medications.)


My name is ……, I am contacting you about your article on ADD. I am about to cry, I see myself in the ADD diagnosis. I have been diagnosed with Fibromyalgia since 1995.
     I guess I do not have to tell you the hell I have been living. I am a RN x 20 years I worked in all areas of nursing but my real love is the ER. All that is past, I am now 53 and I feel like one hundred years old. I am not working and getting ready to apply for SSD. You know the rest of the story. I went to a new rheumatolgist two days ago, he took x-rays and is doing a bunch of blood work. He was not willing to say that I definitely have Fibro. He said something about ADDH, of course I thought he was crazy. I started searching the net, …Yesterday I found your articles, I was amazed, I am not sure if I have ADD, I am going to get the book you recommend. I have promised God that if I can recover and reclaim my life, I will do everything in my power to help others claim theirs.
Any suggestions or information would be greatly appreciated.
Thank You


Hi My name is .......... and I have had a similar experience. As a teen and in my 20s I had "Depression or Manic-Depression" When my moods got more under control I had "Fibromyalgia". Finally after having two children with ADD from two different husbands I was asked to try the treatment for this...(It was an) Instant cure for my depression, anxiety, mood swings and Fibromyalgia!
I am a nurse and have been for over 20 years. I knew what ADD was and had researched Fibromyalgia. Prior to treatment working was difficult and exhausting for me. Now I have started my own business and love my work. Not to mention doubling my income and feeling much better all of the time. God Bless You for sharing what you have learned with others. I just sent the URL for your site to a sister with problems.


Ran across your page in the middle of the night...of course. Have had FM for years, starting with dysmenorrhea from hell as a kid and then on to the full blown syndrome in my 40's. I do not have ADD. Teach psychiatric nursing in a college of nursing and have no concentration problems. My adopted son has ADD and I know how has suffered.

However, I took phen/fen for a year before the heart stuff cropped up. What I noticed was that after about 2-3 months, most of my pain, stiffness and fatigue just disappeared. Still have some of the other syndrome symptoms but hardly noticed them. Felt really well. This lasted for about 9 months after I discontinued P/F. Then the symptoms came back very quickly.

It was clear to me that the dopamine stimulation of the phentermine had made the difference. The serotonin that I was already taking for low level depression in St. John's wart was great for that but didn't touch those other symptoms. So, I began looking for dopamine enhancing drugs that were non-scheduled. I ran across NADH which is a a natural enzyme that works on dopamine. It's been working just fine, most pain, fatigue and stiffness significantly better although not gone. I am considering going on to Wellbutrin, since I know I need dopamine and it is prescription and paid by my insurance. I LOVED smoking...now I know that it was the dopamine stimulation of nicotine that appealed to me. To complete the circle, when I had awful periods in nursing school in the late 50's, the treatment of choice and given by the school infirmary were prescription amphetamines. Nothing worked better than they did but I hated the speedy feeling so when the pill came out, I went there.

I'm sleepy so this note is disjointed but you probably get my drift. I think FM is strongly connected with neurohormone dysreggulation


I recently began to take Adderall after having relapsed into a terrible state that left me feeling fairly non-functional. Anyway, I receive enormous benefit from this. I've never thought of myself as having ADD but the diagnostic category certainly fits me as well in many ways. Chalk it all up to dopamine deficiency probably. Adderall and some cytomel (a thyroid drug) in combination have made all the difference for me. I don't think I'd have a clear thought right now -- or the energy to get up off the couch -- if it were not for these drugs. It's really quite amazing, and such a simple solution! I am 47 and believe that part of the problem I've developed recently has to do with declining estrogen levels (perimenopause) which has somehow exacerbated many of my preexisting conditions. This is only a theory, but I do believe there is some connection in there. I hope you have success with your survey. If I can give you more specific information, let me know.

Best Wishes,


A lot has come together for me since reading your site two days ago. I am a 32 year old woman who was diagnosed with fibromyalgia six years ago. As a teacher I sometimes read about ADD and am struck by how it describes me as a kid. However, I had no idea how thoroughly it described me then -- and now -- until I read the inattention criteria and checked out some other ADD sites (not all the hyperactivity and impulsivity criteria characterize me, but the inattention does verbatim). Every thing you say rings true to me. Now I must face the medical community and get my ADD diagnoses.
I would like to be kept informed of the progress of your research and I will fill out your survey after I get a diagnoses.
Also my husband and I want to have a child. Do you know anything about how pregnancy might interact with fibromyalgia, ADD and the meds? I currently take 150mg of Elavil. Obviously, we will consult doctors, but as you know it is hard to find doctors who see the big picture of all of this.
I hope your work gets to the medical community and brings the specialists to the table.


I am home from work today in so much pain. Your site has given me true hope for the first time in ten years. I'm 31 and am a registered dietitian and am home from work today with incapacitating pain. Your web site has given me the first hope I had in years. My 23 year old brother and five cousins that I know of have been diagnosed w/ ADHD. There's definitely family history for me and I answered 10 of your questionnaire items positively. I live in …. Mississippi and would love to know of physicians in this area who are using the treatment methods you described. I'm willing to travel to a knowledgeable, sympathetic provider. My most urgent request though, is just to hear from you. To say I'm encouraged and grateful is an understatement.


Ms. Stephens,

     My name is …., I am 20 years old and was diagnosed (with FMS) at the age of 14, my best friend was diagnosed earlier this year. I have just visited your web site and wish to thank you so much. As I read the ADD questions I found that they described both me and my best friend to a scary point. We both have been trying new meds in all combinations,to no avail.
     The rheaumatologist we have been using doesn't seem to be up to date on the new treatments. We were hoping that you might know of a good M.D. ……area.
     We are also interested in the SPECT scan you were talking about. We are on the verge of giving up on having any kind of normal life at this point because our M.D. just kinda blows us off and doesn't take us to seriously. Any help or advise would be greatly appreciated. Thank you again for everything!

THANK YOU,


Dear Ms. Stephens,

     I’m Dr. …….., a rheumatologist treating fibromyalgia in the … area. one of my patients gave me a copy of your letter, Fibromyalgia: A New Perspective and I was interested in your response to stimulants in the treatment of possible coexistent ADD and Fibromyalgia (FMS). Do you know other patients who have received pain relief from ADD medications? Do other patients that you have received information from require Wellbutrin and stimulant medications? Are you taking concurrent pain medications on a regular basis? Did you have myofascial pain (tight soft tissue know of bands) as part of your FMS? Have you had a repeat Spect scan on medication to objectively document your improvement? I am interested in your description of your improvement. You can contact me at … MY RESPONSE: In summary, there are at least 35 of us who have FMS diagnoses who have responded similarly. These are women who also meet ADD criteria and are taking stimulant medication. I don't know anyone who is still taking pain medication. Almost none of us take anything for sleep. Stimulants help us to sleep. I have not had a repeated Spect scan because of a high cost factor. My insurance will not pay for it to document my changes.


(The following two letters are from the same woman.)

     Your article is FANTASTIC! I'd been trying to find a doctor who would look at me seriously and try to figure out my symptoms and see if I had CFS or FMS. I was pretty sure I had CFS but with FMS as one of the symptoms.
     When I finally got in to see the psychiatrist (my first visit with one) she didn't want to hear what I thought, so she made her own diagnosis -- -- of ADD.
     I have been researching so much about CFS and FMS on the Internet (I'm a computer system administrator and work a lot on the Internet at work and at home) so I thought I'd learn about ADD, too. Even though I was pretty sure she was wrong. I mean, everything I read about Adult ADD applied to my husband about ten times more than it applied to me.
     At any rate, I'm trying her "trial" of Ritalin to see what dose will be best for me. and, in the process of my Internet searches, I stumbled across your article on FMS.
     It REALLY tied things together for me. I'll see what this doc wants to do about restructuring my meds. I've been on Prozac for 6+ years, Buspar for 6+ months, and now Ritalin. When we get it set and in the process of adjusting the meds, I'll be taking notes of my "complaints" (AKA symptoms) partly to see if she's wrong about her diagnosis of ADD, and especially to give you some input about what I'm convinced would be diagnosed as FMS.

Thanks again for the great article.

(Second letter)

     This is wonderful! I already feel like I have my life back. I'm taking 20 mg. of Ritalin every 4 hours (6 am, 10 am, & 2 PM) and I feel like I can tackle the world again! I feel like I can work with my boss and determine what is most important to them (i.e., let them set the priority) and then get the project done! This is really neat, and it's the first time I've felt this good in 11/2 to 2 years!
     (Some of us need 5 mg. Ritalin and others need more. This lady has not had to go up on her Ritalin nor have I had to increase my dose of Ritalin. I don’t know of anyone else who has had to increase their dose.)


Dear Patricia,

     I was diagnosed with FMS in 1986 by my Family Practitioner. It was very new to him but he said I had enough symptoms to be diagnosed w/FMS. At that time these were my symptoms: severe pain (mostly nocturnal) in the center of my left buttock; headaches; anxiousness; tingling in my right arm, hand, leg and foot; some numbness occurring for only a few seconds down the right side and my fingers on the right hand were always colder than my left to my touch as well as others' touch. The first symptom I had was the tingling and numbness in my right arm and hand which started in 1974.

(This is from a long letter describing her case. I am using just two excerpts.)

     We have much to be thankful for and I am, but when the real monster hit me in March of 1996 - fibromyalgia at its ugliest - I have to tell myself over and over that I can live with this because I have too much that is good and right and wonderful in my life. But no matter how strong and independent you have always been and how busy you've always been and how many activities you are involved in and how organized you have always been and no matter how strong a Christian you've been - fibromyalgia can get you!! It can pull you down to the depths of depression where you want to stay at home, see no one, do nothing and just wallow in your pain and suffering.
     One thing I forgot to mention (how could I forget it - because I can't remember much lately) is the brain fog and not being able to organize anything - my thought - a project - my day - nothing! I'm working part-time at an attorney's office and I'm having a time. After reading the article on ADD, I really would like to talk with someone who could let me know if this is a problem for me. I took your survey and I had 15 of those symptoms!! (ADD criteria)


     Last week was a bad week. I was just plain 'ole down in the dumps. Nothing seemed right - when in reality - nothing was really wrong; I should have been happy but I was sad. My mind was continually racing. I would be driving to work and I would be on one thought and the next thing I knew I was on something totally unassociated with the previous thought! I know this would sound crazy to someone other than one who has been there. It would still be racing when I went to bed, but I would pray myself to sleep praying for everything I could think of until I just fell asleep. So, I know I'm not where I want to be because all this really frightens me. I can hardly spell anymore and I've always been an excellent speller. It's not just once or twice a day that I get hung up on spelling, it's continual. Working at the law firm I have to type almost the whole time I'm there. I go through spell check and I just can't believe how many SIMPLE words I've misspelled. I make so many careless mistakes and this just really bothers me because I've always prided myself on turning in good work (in fact, perfect work would express it better). So, I say all that to say again that I'm so grateful for your web page, all the research you've done and continue to do, and most especially your willingness to share this knowledge with others through many channels of communication including a personal telephone call.

(THIS DISCRIBES THE MIND-FOG I USED TO HAVE. THE ADD MEDICATIONS AND HORMONES HAVE CLEARED MOST OF THIS. So many of her comments and comments from other letters sound like the symptoms of ADD.)

(This is the same woman, and she has found great benefit with Adderall, an ADD medication. )

Just wanted you to know that I'm doing great. I FORGOT that Dr....... has to mail in the prescription, therefore, I gave out of medication last Wednesday. By Thursday, I was feeling pretty lousy with FMS, so I drove to............. to get the prescription instead of by mail on Friday. After one dose I was just fine!! I'm now at 20 mgs. Adderall twice a day. My esophageal problem is the only thing that's bothering me. It seems to have gotten a little worse since I dropped back on the dosage of Propulsid and completely off Prilosec. If this is no better by my visit on Feb. 2, I'll probably have to go back on Prilosec. I may even call her for a prescription before then.

(Her esophageal problem has not responded, but the other FMS symptoms have. She found benefit the first day! Most of us have not found the right medications that quickly. I do know five other women who got great relief the first week they were taking the ADD medications. Many of us have gotten better as we have added hormones or antidepressants to the stimulant.)


Dear Ms. Stephens,

     I have not been diagnosed with fibromyalgia. I am a single mom and have no insurance and I can't afford it. You might ask - how can you not afford it? I do the best I can, which often times isn't very well, and what's worse is that I can't get other people to understand. I have a friend who has FM and before she told me of the symptoms, I had already mentioned several trigger points on my body. She thinks I have it also. I am 31 years old and I definitely fit all the criteria for the Inattentive ADD as well as some of the others.

Thank you for your time and concern!
Blessings,


These are some questions I addressed to a doctor who has helped a lot of us with FMS get better.


Those who you have tried to treat with FMS [fibromyalgia] and ADD [attention deficit disorder], the ones who did not respond to medications, what is your opinion about what happens? From my little "window" it seems like a lot of them quit early.

Of those who have stayed with me for at least three office visits, 17 out of 20 have gotten at least pretty good results, with most of them being very pleased. There are still those 3 out of 20 who don't seem to do well despite my best efforts. But that goes along with a study I read on pain medications done in a trial -- they had the exact same percentage of non-responders as I. That would indicate to me that perhaps their pain mechanism is different.

They can't seem to connect the fact that the ADD and FMS are part of the same entity. When they get punched around with the wrong "recipe", they just can't seem to keep going. Some of them have financial problems, others have no cheerleader, etc.. Any thoughts on this from your perspective?

Right again, as far as I can see. I think probably the discouragement factor is even more disabling than the financial factor, although I'm sure that is a big one for many. These people are so used to not getting results that they don't "hang in there" long enough to give the medication a fair trial. So a cheerleader might prove VERY valuable!!


Another question

     I talked to ….. today. This is the older sister that has FMS. Her youngest sister also has FMS and has responded very well on Ritalin. (Their mother is classic ADHD.) I am trying to work with the oldest sister in order to help her. She is taking 10 mg. Ritalin bid. She is mixing it with Pamelor 50 mg. at bedtime. She has been taking it about two weeks. There is no positive benefit other than some improved sleep. However, there is no adverse side effect. My advise to her was to ask Dr. if she could go up.


RESPONSE

Yes, definitely!!! Some people don't begin to see relief until they hit somewhere near the correct dose. As long as there are no side effects, press on with doctor's permission.


ANOTHER ANSWER TO A QUESTION ABOUT DOSING

If you find a dose of Ritalin that agrees with you, take it regularly for a while. As you get used to it, you may have to periodically increase the dose, UNTIL you reach the RIGHT dose. Then, you should stabilize on the right dose. You will not have to keep increasing it. (No addiction potential have I seen in the hundreds I have taking it, even in those who are addiction-prone.)

The SSRI's (group of antidepressants, including Paxil, Zoloft, Prozac, etc.) may also have to be adjusted based on response. Don't get discouraged; just be persistent in looking for the right combination.

Remember, you will have good days and bad days anyway, so don't judge your reaction on a single day. Look for a pattern of response. Your good days should become overwhelmingly more frequent than your bad days on the right dose, and your bad days will be much less intense.


Patricia,

I wrote you a while back, and wasn't for sure of fibromyalgia, but I went to the rhumatologist wed. and did find out I do have it. I am on Ritalin and Effexor, they haven't gave me anything for better rest at nite yet. If it wasn’t for the Ritalin, i don't think i could make it alot of morns. I have two kids under 3, so I have to get going.

What kind of meds are good and usually recommended for the better sleep?

MY RESPONSE: Ask your doctor if he/she would try you on Remeron instead of the Effexor. In low does, it often makes you sleepy at bedtime and improves sleep for many. If you are too sleepy, you elevate the dose. Going UP relieves the drowsy effect, if you are too drowsy. Entry level dose is 15 mg. at bedtime. It mixes well with stimulants.


Dear person with FMS,

I found this very intresting. I am gonna be 21 and I was diagnossed with FMS at 15. I had a diagnosses at age 4 of ADHD never was on any medication. I used a natural diet, that work great. I just thought I would EMail you and say. Good job.


My visit to Dr….went fine. My dosage is now regulated and truly the result is a miracle!

(This is from a 72- year- old woman who has had FMS for over 30 years. She fit the ADD criteria to a tee and is now doing well on Ritalin and 5 mg. Paxil at bedtime. This sounds like "pie in the sky", but it is the truth.)


I have had FM since 1985 although undiagnosed until 1997.
I found your research fascinating because I have often questioned what the similarities of other sufferers were. I believe there must be a common link to every person with FM.
I think you have hit on something with the ADD and thankfully you were awake enough to find all of this. I have suffered with undiagnosed ADD all of my life and the first 20 years I did not have pain. It was only after the birth of my first child that I began having chronic pain. I want to thank you for the information at your site and will let you know how it goes (by way of your questionnaire) how I am faring once I find a doctor who treats adult ADD.
Thank you for the motivation to continue my search for wellness, for I had almost given up.


I CANNOT TELL YOU HOW MUCH YOUR INFORMATION ON THE INTERNET HELPED ME. IT WAS VERY INFORMATIVE.

I READ SOME BOOKS & PAMPHLETS ON FMS, BUT IT DID NOT SAY ANYTHING ABOUT ADD, OR HEART PALPITATIONS, OR ANXIETY, OR PANIC ATTACKS, FEELING HOT, NOT BEING ABLE TO CONCENTRATE, AND I HAVE ALL OF THAT.

MY HUSBAND WILL NEVER BELIEVE IT !!!!!!!! : HE THINKS I PUT ON ALL MY SYMPTONS. I CERTAINLY WOULD BE CRAZY TO DO THAT. MY LIFE HAS STOPPED FOR THE LAST 2 YEARS WHILE I WORKED AT ……

I LOVED MY JOB (COMPUTER WORK & ANSWERING PHONES ALL DAY). IT WAS VERY INTERESTING. BUT WHEN I GOT HOME FROM WORK, I HAD TO LAY DOWN FOR THE REST OF THE EVENING. I WAS EXHAUSTED. WHO WOULD PRETEND TO HAVE ALL THESE SYMPTONS ? MY SOCIAL LIFE IS DOWN TO ZERO. AND I WAS A PERSON WHO LIKES TO GO A LOT.

I JUST FEEL BETTER NOW KNOWING THAT ALL OF MY SYMPTONS ARE RELATED TO FIBROMYALGIA. (EVEN THO HE WON'T BELIEVE IT).

I WANT TO GO TO A SUPPORT GROUP AT OUR HOSPITAL. I HAVEN'T GONE YET BECAUSE I WAS TOO TIRED & EXHAUSTED. BUT WHEN I DO, I WILL TAKE THEM A COPY OF YOUR INFORMATION IF IT IS OKAY.

THANK YOU AGAIN.

(We want life, but many of our loved ones, who we need to be our cheerleaders, have given us up to weakness. If they only knew.)


My name is ……, I am a 41 year old construction foremen. I was diagnosed with ADD about age 35. I first heard of it from a TV program. I had been treated for some time for depression with limited results. I did have to diagnose my self first then went to a specialist. I am the classic inattentive type. With the school records to support the diagnosis.. I spent a lot of time on research. I have a sister also diagnosed with ADD as well as Fibromyalgia.

She has tried many antidepressints with mixed results. While I am having great success on Ritalin and Paxil she finds she can not take Ritalin or other stimulants. She is on a antidepressant. The stimulints she complains, give her problems. She says they cause her a painful burning feeling around her neck and shoulders. She as went through menopause. I thought you may of heard of a similar case. By the way I want to tell you how great and informative your web page is. I’m sure it helping many people You have definitely hit the nail on the head.

Thank you


MY RESPONSE: What dose of stimulant did your sister take? The wrong dose or the wrong stimulant will not work. The right medication in the right amount will work a miracle. So many bail out early. You start low and work up. Most do not get better until they are NEAR therapeutic levels. If one med doesn’t work, try another. Dosing those of us with FMS is just like dosing anyone with ADD. Our problem is our bodies are very sensitive and these meds can toss us around. I also asked her what kind of hormones she was taking. Hormones can make a world of difference.


I was very excited to find your web site because I too have ADD, FMS, and MVP (mitral valve prolapse syndrome). I have a few others as well: rheumatoid arthritis, acoustic neuroma, and very low blood pressure. Until I read your story, the only two that I thought could be related were the RA and FMS. Recently I have been having a difficult time (lots of stress), and so I've been constantly flaring for almost a month. It never occurred to me to UP my dose of Ritalin. (Right now I just take 5 mg. in the morning to help me concentrate.) Let me know what you think and do you have a physician that agrees with you? Thanks for your web page.


I also have ADD and fibro.....I didn't realize there was a connection. You've given me hope. Any articles you have that I could take to my doctor would be wonderful.

MY RESPONSE: I have just found the first written documentation that connects these disorders. It is "Fibromyalgia Syndrome and Attention Deficit Disorder: Is There a Comorbidity and Are There Consequences for the Therapy of Fibromyalgia Syndrome?" by K. Krause, J. Krause, I. Magyarosy, E. Ernst, D. Pongratz. Journal of Musculoskeletal Pain, Vol. 6(4) 1998, p. 111-116. The article starts out by saying, "In our clinical experience with adult patients with attention deficit/hyperactivity disorder (ADHD) some patients experienced relief of concomitant fibromyalgic complaints by medication used for therapy of ADHD like methylphenidate (Ritalin), Pemoline (Cylert), and ......


I am a male, lawyer, 53. For about the last 5-6 years I have suffered with fibromyalgia like symptoms. Been treated for fibromyalgia. I have had fair relief taking ultram, anti-depressants for sleep, magnesium. I have a child on Adderall. Have tried the Adderall. Complete pain relief, full restoration to energy levels on a very small dosage. Believe it would be almost impossible to find a doctor who would prescribe me Adderall. I do not look or sound like I feel.

If you have knowledge of such a doctor in Oklahoma or southern Kansas, I would be ever so grateful. Thanks.

(We do not advocate taking anyone else’s medications.)

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