|
| |
 |
Letters |
|
|
| |
Letters
From Some of the Respondents
I have included just a
sampling of the responses that I have received.
Please notice that I have protected everyone’s identity in
order to protect their trust in me. Many doctors have
written and have taught me things that I have been able to
use to help others.
If you have comments, I am interested. My goal is to
help others reclaim their lives. Even patients who see
themselves in these letters can do NOTHING without a
doctor with an open mind who will listen to us with new
ears.
God has given me my life back, and this is the only
thing I can think of to do that will spread my story.
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.)
After watching a lot of people work with these meds, and
watching a lot of people bail out after trying the first med
if it didn't work for them; I can't help but wonder if the
authors had the opportunity to try more than one stimulant
for the ones that didn't respond, or combined an
antidepressant,, hormones, etc. with it. A lot of us with
FMS get cold feet if we go in and the first med doesn't
work. A lot of us find that all stimulants don't work as
effectively for us. It is a trial and error process, but the
win is worth every day of uncertainty.
|
|
|
 |
|
 |
|
