The CFIDS/ADD Conundrum

[Tallulah]

I would be very interested in knowing how many people here have ME/CFIDS as the connection grows more tantalizing every day.

If you think you may have undiagnosed ME/CFIDS the link below provides a sound and comprehensive definition of just what consitutes the illness known as ME/CFIDS, please see: http://www.cfids-cab.org/MESA/framework.html

Unfortunatley, it is often misunderstood as simply a fatiguing illness which could not be further from the truth. “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.”* Laura Hillenbrand, Bestselling author of Seabiscuit

I found my way here via the CFIDS/ME (Myalgic Encephalomyelitis) community and our search for effective treatment. While we have found little/nothing to address the immune disfunction, the cardiac issues, the hideous malaise, the many neurological symptoms, the profound muscle weakness, etc., many take ADD med.s for the cognitive issues with good outcome. When I began researching these med.s and ADD I was astonished, and more than a little surprised, at what I discovered. I am classic ADD and always have been.

Remarkably, in one of my early careers, I was a Child Care Worker and worked with many kids with ADHD. I knew that I understood them better than most who worked with them, that I had real empathy and that I could help them develop strategies outside the box that helped them cope but as my behaviour had not been blatently hyperactive as a child (anxious, ridiculously underachieving and hyperchatty, yes), the penny never dropped. In light of my recent epiphany, I find this stunning. However, it was the 1970s and kids were not diagnosed with attention deficit if they were not also hyperactive in the extreme.

I was flattened by a viral illness in my 20s, 25 years ago, which became relapsing and remitting over the years. By the time I first fell ill, I had decided that I just wasn't very bright, I was a major procrastinator... and, I had developed coping strategies for dealing with the ADD that were working for me -- mostly having my then husband (a wonderful and accomodating man) do everything that overwhelmed me like put my clothes away (!) and balance my cheque book... as I said, he's a really great guy.

The illness messed with my cognition in a big way but getting a diagnosis for the physical symptoms became the sole focus of my attention as it waxed and waned over the years. As it became a more frankly neurological illness (I was misdiagnosed with MS as they are very similar and present with similar MRI findings) it was easy to forget that many of the cognitive issues predated the onset of the horror that is ME/CFIDS and that they might not have been the result of a flawed character and stupidity.

I have also noticed that the people I know with ADD (I have always had an affinity for us even before I copped to my own condition) have a number of immune mediated conditions/signs - type 2 diabetes, RNA positive...

The site, mentioned in another thread, http://nids.net/ , the Neuro Immune Dysfunction Syndromes Medical Advisory Board and Reasearch Institute (whew!) makes for some very good reading!

So, did being ADD predispose me to CFIDS? What cofactors do they share? Is ADD in children an expression of the same pathology existant in CFIDS? The chicken/egg conundrum remains. All I can say with any certainty is that the only medications that the CFIDS community has found to be consistently helpful with the cognitive issues are the ADD med.s. To me that is very, very interesting.

Sites of interest
http://www.anapsid.org/cnd/coping/school2.html
http://www.cfids.org/archives/2000rr...-article01.asp

Looking forward to exploring this further.
t

[dormammau2008]

there must be a link then with me an add adhd ....then if the medsss work on both the why is the impornted thing dorm

[Tallulah]

I agree! The "why" is the important thing.
Best to you,
h

[dormammau2008]

j hi tall you have cfs an add..........and if you would you care say somethings you have expaiced? dorm thanks as well

[surjerico]

Tallulah, I just briefly read your posting and wanted to communicate back. I'm sorry you have these confounding conditions, but I'm so relieved to see someone else with the same kind of "stuff" as me!! I have chronic fatigue syndrome and adhd without hyperactivity (along with depression and anxiety), and believe there is a connection between these. Because I am at my witts end, I've made an appointment for next week at Dr. Amen's clinic in Reston, Virginia for a brain scan. The scan is suppose to accurately diagnose the problem areas, so that we can find and start the best treatment options. My how those words roll so easily from the keyboard! If only it were that simple to find solutions.

[dormammau2008]

hello surjeroc nice to meet you i have alot same things not cfs but alot the others fit me i hope the trip to dr amens clinic has gone well iam allways happy to chat dorm>> good luck

[TwistedTerri]

Hey, Tallulah! So you were wrongly diagnosed with MS at one point? Just curious about that because they recently changed my diagnosis to MS and I have an appt with a neuro. next month to schedule a spinal tap to make sure. My sis has MS and takes provigil for alertness/attention/etc. I take adderall and it helps a lot. I was not diagnosed with the ADHD until recently and I'm almost 40! I did well in school but not college, although I didn't do awful there. I think that's why I went undiagnosed for so long. The connection is SO intriguing. The connection between fibro and ADHD, chronic fatigue syndrome and ADHD and MS and ADHD...all of it is just a trip. Do you have anymore comments on your MS diagnosis that you would be willing to share?

[happyaddgirl]

Very interesting thread, though I have not read through all of the posts. I have not be given a dx of CF, but I know this is what happened to me. I would get better, then down again. Exercise totally takes me out. After the birth of my son I went way downhill and gained some stabilization when he turned 3. It was really difficult during that time. Thankfully some supplements I take really help with this.

While in this fatigue, I wondered if it was simply the fatigue causing the unbearable and terrifying memory and attention issues. Now looking back I see I've had ADD for a very long time, since elementary school. I wish this had been noticed and helped sooner.

I'm just really curious about the connection.....