How many have AD/HD and FMS or CFIDS?

Discussion in 'Fibromyalgia Main Forum' started by lovereading, Aug 15, 2003.

  1. lovereading

    lovereading New Member

    I have long believed that there is a connection between AD/HD (I have ADD) and FMS, and wonder (A) how many others there are of us, and (B) why doctors haven't researched this more?!?

    Finally I did read a book recently by AD/HD expert Dr. Kathleen Nadeau, wherein one of the chapters is ALL about the connection between ADD and FMS! Amazing. I just wonder why no other professionals haven't jumped on this; I would think it's a major clue. ADD used to be called "minimal brain dysfunction" up until the 1980s, and researchers now DO say that FMS is caused by some kind of brain dysfunction. DUH! Let's hope they figure this out SOON....
  2. Shirl

    Shirl New Member

    Hi welcome to the board. I have FM for over 20 years, but do not have AD/HD or ADD, I do not have CFS either.

    In my opinion, there are not too many medical professionals that actually believe that we are even sick, so the research is limited to say the least.

    Personally I do not think its something to do with the brain, but could be what we came into contact with.

    I was a perfectly healthy person, not even colds, flu's or anything else. But I got pneumonia and after that is when the FM started, back then it was called Fibrositis, then they found out we did not have inflammation in the muscles, so they changed the name to Fibromyalgia.

    If you would like to read another good book on FM, try one of Devin Starlanyl's books, she has about four of them out now.

    Again, welcome to the board, and hope we hear from you often.

    Shalom, Shirl

  3. sumbuni

    sumbuni New Member

    When you read up on ADD or AD/HD it seems that there are alot of symptoms in common. The only thing is, these DDs have alot in common with alot of other things, too. I have a friend who has AIDS who has alot of the same symptoms that I do...I have cfs and possible fms. Thought it all started a long time ago, I have also had EBV...a virus...which seems to have really laid me low and brought on more symptoms...possibly the beginning of cfs...So as I say...there are many things that have the same symptoms and complaints. That's why we are tested for so many things before we are diagnosed with THESE DDs.

    Love,
    Sumbuni
  4. JHG

    JHG New Member

    I am a clinical social worker and have diagnosed and treated many children and adults with ADD. Since I was dx with fibro, I have begun to see more and more the similarities between "fibro fog" and ADD. I also saw a psychiatrist who rxed addaral for me. That didn't help but I still feel there is a lot of similarity. I also have a lot of trouble remembering a particular word or sommeone's name. I do think the more you learn about ADD, the more it can help you.
    JHG
  5. lovereading

    lovereading New Member

    I should have given more details about myself so that some of you wouldn't have felt the need to respond...Sorry!
    Here's the rundown on why I asked my original question: I know I have ADD (it's not just "fibrofog") because I was tested for it after I had my son tested for it. Both of us have it, my brother has it, and my mom probably has it, too. It's not something that started later in life for me -- I recognized that I'd had it since I was a child but never knew what was "wrong" with me. I actually have read practically everthing there is written on AD/HD since receiving the diagnosis in 1995. I think the reason there's not a lot written about it is because most research on AD/HD was done on boys until recently. Dr. Nadaeau and Dr. Patricia Quinn in the DC area are changing that!

    I was diagnosed with FMS in 1987 after I was pregnant with my son. I've read several places that huge hormone changes can trigger FMS, as can stress, and as it happened in my case, I had both (HUGE stress and became pregnant) at the same time.

    I subscribed to the Fibromyalgia Newsletter back in the 1990s and I remember reading an article about research being done by Dr. Jay Goldsten in Orange, CA on brain scans of girls with FMS or CFIDS, and his remark about how they also had AD/HD. That's what got me wondering about the connection.

    Then over hte years I have met at least 10 women who have both FMS and AD/HD (or CFIDS and AD/HD). I think the odds are pretty amazing!

    Basically Dr. Nadeau's book with the chapter on FMS says that women with AD/HD are even more sensitive to stress than women without it, and that because we have the normal monthly hormonal stress, we really need to watch the stress by learning relaxation techniques, etc. to avoid getting FMS.

    But this does not mean, of course, that every woman with FMS or CFIDS also has AD/HD -- there may well be a subset who get it for whatever reason. But I think there definitely must be some kind of "faulty wiring" or dysfunction in the brain that controls the ANS; there have been SO many articles about that by doctors in FMS and CFIDS journals in the past few years.
  6. jadibeler

    jadibeler New Member

    but for many years I've suspected that my lifelong "mental problems" have been ADD. I was never hyperactive (just the opposite, in fact - too tired to be hyperactive!) but as far back as I can remember I've had trouble paying attention, retaining information, and - worst of all - zapping out into daydreams as if someone else were throwing a switch or playing with my remote! This made school a nightmare and working was not much better. I finally talked to a woman with adult ADD about 10 years ago and she was describing me to a "T". In more recent years, I've become more handicapped in the mental area, but it's not the same as the ADD symptoms.

    My mother had FM but definately not ADD. She had a mind like a steel trap, even with the FM, until Alzheimer's took it. My daughter, on the other hand, also with FM, could have it but her brother definately did and does.

    I have to respectfully disagree with Mikie regarding the root cause of FM being something in the enviornment that we come in contact with. There are too many of us like me, who have it running in their families (mother to daughter to grand-daughter) and who have suffered from it as far back in childhood as they can remember. For those who aren't born with it, it seems to be illness or trauma which triggers it but I firmly believe that trigger is buried in the brain of "predisposed" people, lying there in wait for the switch to be thrown.

    JoAnn
  7. lucky

    lucky New Member

    I am almost certain that since I am doing so well on Ritalin, I have AD/HD because it certainly does not only help with the brain fog but other minimal brain dysfunctions as well. I have CFS and FMS.
    Sincerely, Lucky
  8. barbaradh

    barbaradh New Member

    I've suspected most of my life that there was something wrong with me (always had problems with concentration and comprehension), and it was really noticeable when it came to reading). It wasn't a major problem though (I could read - it just took me much longer than the average person, because I had to keep rereading paragraphs that I hadn't comprehended once I got to the end of them). I didn't hear about ADD until I was in adulthood, but I seemed to be able to get by okay, so I just never brought it up to any doctors. When my fibro got bad back in 2000, that's when I REALLY started having problems. Like, for instance, I can't read books anymore. I was put on Adderall, and that worked great, but it took away my appetite and I started losing weight (I'm already underweight). Then I tried Strattera. It didn't work as well as Adderall, but did help, except it increased my heart rate (resting pulse of 110-130). So, finally I was put on Ritalin about two weeks ago. Didn't do ANYTHING for the ADD, but it sure did turn me into a bitch (pardon my french). Everything made me angry, I was extremely frustrated by minor things, and I was just nasty. So, I'm not sure what the doc will try next. Anyone who says there's no connection between FMS/CFS and ADD/ADHD is nuts. And I've talked to a number of people that never had any ADD/ADHD until the got FMS and/or CFS.

    Barbara
  9. isee

    isee New Member

    I've had ADD-type symptoms since I was about 9 yrs. old. I never was dx with it. However, I can almost pinpoint the moment it happened: I suddenly had reading, comprehension, and memorization problems, whereas before, I had few.

    My comprehension slowed down, and my abstract reasoning ability declined, especially in math.

    A pediatrician, Dr. Feingold, worked with kids who had ADD/ADHD. And autistic kids,as well. He found that certain food intolerances(rather than allergies), induced ADHD symptoms, and some symptoms of autism. The main culprit for many ADHD kids was salicylates, an organic compound that exists, to some extent,in all plants. However, some vegetables and fruits, have more than others. Anyhow, because these kids had an intolerance, i.e. they could eat or absorb a certain amount - over time - before they reacted, Feingold found that if he put them on a low-salicylate diet, their symptoms abated.

    He set up a foundation, the Feingold foundation, that has also researched the effects of food additives(red and yellow coloring,in particular),as well as preservatives, on these categories of children.

    He's dead, but his foundation still exists. If anyone's interested, you can just type in his name. Also, others have gone further with his research on salicylates; foods that contain amines(certain proteins); and other organic compounds that cause immune and neurological reactions.

    I'm currently experimenting with a low-salicylate diet, to see if it alleviates my CFS symptoms. I'm doing the same with amines, which are found in fermented foods like cheese and browned proteins.

    Thanks for the topic. The more I read about CFS, the more I believe that it is a gradual illness, one that often occurs early, and which is probably rooted in the sensitivities we develop to a denatured, altered food supply, but is hidden by a tolerance that breaks down slowly,and subtly over a long period of time. It manifests itself in learning problems or mood disorders or allergies, or whatever, until our bodies' collapse into full-blown illnesses like CFIDS or FMS. I think it strikes those of us who may have a vulnerability along the hypothalamus/pituatary/adrenal axis.

    Anna
  10. lucky

    lucky New Member

    It is interesting to read how some of us believe that with CFS/FMS we also have AD/HD, and when I compare notes I have excactly the same problems like you and others have.
    As mentioned, I have been on Ritalin for 1 1/2 yrs. now which is making a big difference with my symptoms and my quality of life. But, to get the right dose, it also requires some experimenting I found out.
    If you have the symptoms you describe of 'overreacting' may be your dose is too high. I had the same problem some time ago and when I reduced my dose it stopped.
    I take 20mg of SR20 (time release Ritalin) and 5mg normal Ritalin in the morning and when needed another 5 mg in the afternoon and I am doing well on it.
    Hope you are also finding the right dose in the future. Lucky

    [This Message was Edited on 08/21/2003]
  11. sb439

    sb439 New Member

    I've got CFIDS and AD/HD symptoms. When you look at brainwaves, the two seem related. With CFIDS (after 7 years or so, usually), you have significant general daytime delta intrusion in your brain (where there should be beta), and also significant reduction of beta waves in your frontal lobes (up to virtually none ...). With AD/HD you have the same picture, but less severe, and instead of delta intrusion, only gamma intrusion.
    Since I've been taking Strattera, my AD/HD symptoms have improved.
    Susanne
  12. wle

    wle New Member

    .....receptionist at a Mental Health Clinic severaly years ago. The Psychiatrist and I became very good friends. She told me that she suspected that I was an AD/HD child. I have never been tested for it though. WLE
  13. Rea

    Rea New Member

    I have FMS and CFIDS. My ADD was diagnosed when I was an adult by a psychiatrist. The diagnosis sure did explain alot of my behavior as a child. I was a good student and then a bad student. Frustrated the heck out of my parents and teachers because they all said I was bright but didn't apply myself. Over the years I did teach myself how to focus but it was always work! I take Ritalin for the ADD and it definately has helped the CFS. The connection is really is interesting. But I still don't understand how I went from being a stock broker to a disabled person in such a short time. Theres times now when I have trouble keeping up our check book and paying the bills on time. I have trouble remembering the productive person I was.
  14. isee

    isee New Member

    lovereading,

    Just wanted to thank you for this thread - it's been good for me to revisit the connection between my CFS and ADD. I'm
    starting a growth hormone product tonight. And, I'm eager to see if it has any effect on my cognitive problems. I believe we can improved significantly, with the right combination of supplements,vitamins, diet, etc. I believe it's just a matter of persevering, and trying new things.

    I love what Albert Einstein said about the universe. He said, "The most incomprehensible thing about the universe is that it is so comprehensible."

    I continue to believe that about our illnesses.

    Anna

  15. pixipip

    pixipip New Member

    I've been finding connections/overlaps with cfs,fms,ad/hd and mild autistic spectum disorders, of course I suppose some people could have a combination of these but it does make me wonder!

    Love & Light,
    Jacqui.
  16. idiotsinc

    idiotsinc New Member

    I was diagnosed with ADD non-attentive type. Seems to be common in FMS. My shrink thinks fibro is a smptom of a neurological problem like anxiety or ADD. There is even a website that talks about it. Problem is that most doctors only know about the hyperactive type. Ritalin and buspar has done wonders for me. Going to add Zoloft starting this weekend to see if it helps with the quality of my sleep.

    Bob
  17. lovereading

    lovereading New Member

    I should also have mentioned that I, too, have ADD, not ADHD (no hyperactivity). The reason so many women never knew they had ADD is due to the very reason you cite -- that girls tend to be more daydreamy than boisterous/hyperactive, which means their teachers probably didn't get the clue that something was wrong. Plus, all the research until the 1990s was done only on boys -- NONE on girls. Now there is, however.

    You mention that your dr. thought there was a connection with the nervous system and anxiety, etc. Yes, all research says that people with AD/HD (that means ADD and/or ADHD) do tend to have "comorbid" (that means "along with") diagnoses of anxiety and/or depression. It usually is genetic -- so you don't need to feel bad or defective (as I did) because you sometimes have occasional anxiety attacks out of the blue. (FYI: you may NOT have these, either! It's just something that a lot of ADD'ers have.)

    Re: FMS and the nervous system, there is a lot of research (more and more) agreeing that the ANS (autonomic Nervous system) is the root problem with FMS. Any dysfunction in that triggers a cascade of ill effects. I would suggest subscribing to any of the newsletters published on FMS; I only know of 2 -- the Fibromyalgia Newsletter (from Arizona) and Fibromyalgia Frontiers (from Virginia). I know the former has a website; not sure about the latter. If any of you know of other journals besides these for FMS, please let me know! (There is also the CFIDS Journal)

    Re: sleep, I take Trazadone because my neurologist who is a sleep specialist said Traz. helps with the deep sleep (Delta?). I also take Neurontin, which helps with sleep and pain (and hotflashes!). I also take an SSRI (Celexa) and Strattera for ADD. I used to take Ritalin but after so many years it lost its effectiveness. Strattera really messed up my sleep, however, which is why I added the Neurontin initially.

    Thanks,
    Mary
  18. lovereading

    lovereading New Member

    I agree, it is VERY interesting and I wonder if/when researchers will figure out what causes autism. My brother who also has ADD (as I do) has a daughter who is autistic. His wife has a brother with schizophrenia, too, so who knows if that influenced their daughter's autism.

    Anyway, I read about the no-gluten/no-casein (dairy) diet for autism, and my brother said it really helps his daughter. I know I have a food sensitivity to dairy and wheat -- makes my allergies worse. (Not a HUGE problem, but noticeable.)

    I disagree with Dr. Feingold's theory, however, that one can completely eliminate AD/HD with diet. The doctors I interviewed for my son (with ADD) said one is born with ADD; brain scans (PET and SPECT scans) show a physical difference in the brain -- so there's no way diet can change that. On the other hand, I don't want to say "don't try it" because I think there is some truth in that it may lower the level of outbursts in hyperactive kids. I have a friend who swears that her son is so much calmer when he doesn't eat junk food with chemicals (chips, sodas, etc.).
  19. lovereading

    lovereading New Member

    Anna,
    I'm glad that you found my thread helpful. I didn't know what kind of reaction I'd get, but I knew I HAD to ask because it was bothering me for so long!

    Yes, persevering is indeed the key. But I can empathize with those who sometimes feel depressed (like me) because not much has changed in the 17 years that I've had it! So I add a request to all of you out there: please contact your congresspeople to fund research on FMS -- because millions are affected by it and CFIDS. Thanks!

    I really liked your Einstein quote!

    Mary (huntms1@netscape.net)
  20. lovereading

    lovereading New Member

    Anna,
    I'm glad that you found my thread helpful. I didn't know what kind of reaction I'd get, but I knew I HAD to ask because it was bothering me for so long!

    Yes, persevering is indeed the key. But I can empathize with those who sometimes feel depressed (like me) because not much has changed in the 17 years that I've had it! So I add a request to all of you out there: please contact your congresspeople to fund research on FMS -- because millions are affected by it and CFIDS. Thanks!

    I really liked your Einstein quote!

    Mary (huntms1@netscape.net)

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