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Sent to us on 9/28/05
1. Age of onset of symptoms:
Diagnosed at 43 (probably had symptoms for 4-5 years before that).
2. How long have you had fibromyalgia?
A little less than 2 years.
3. Where did you grow up?
Born in Mumbai, India. Grew up in Union, NJ since age 9
4. Where do you live now? Live in South Brunswick
Township, NJ since age 27.
5. Were you exposed to pesticides?
Probably...in the yard. Have always suffered from allergies (to
dust and chemical sensitivity)
6. Do you have any personal theories about what brought
this on?
Prolonged periods of stress (with
no down time from the stress). Did the work of four people in the
telecom industry for about 3-4 years as they continued to do more
with less people. As they downsized, I was consistently being "put
down" and "accused" of not doing my job properly
(only in one particular job). Was force adjusted and on the last
day rehired by another group because of my track record and placed
in another "high stress" job - all of this combined triggered
the fibromyalgia where my muscles "locked up."
7. What were your symptoms?
I completely locked up (my muscles
and a lot of pain all over my body...I could not move or get out
of bed). I have had pain all over my body (muscular, joints, back,
neck, shoulders, hands calves, upper arms, neck, sciatica). No numbness,
occasional tingling which goes away.
8. Were you diagnosed with
something else before fibromyalgia?
No, I was not diagnosed with anything else (other than
ulcerative colitis, when I was 26 years old (before marriage) -
which I reversed/eliminated with homeopathic treatment after my
second son was born- and am on no meds for that either anymore.)
I had been complaining of fatigue for several years (after the birth
of my second son), since 1992. I was in physical therapy for "muscle
spasms" almost 5-6 times for almost 2-4 months at a time. Each
year, the pain was in a different area of the body (neck, lower
back, shoulders, etc.). This went on for about 6 years... until
I completely locked up a couple of years ago (and then it was diagnosed
- I asked to go to a rheumatologist for a second opinion and she
too ran some tests that eliminated other things and confirmed the
diagnosis). She prescribed muscle relaxants and pain killers (and
they helped while I was in the "crisis" mode of being
locked up - - but I came off the meds within two months.
9 . What supplements,
medications or alternative practices have helped?
* Meds: do not help (create more side effects)
* Alternative practices that help: Yoga, accupuncture, physical
therapy and exercise
* Supplements: Kirkland brand High Energy Vitamins, Magnesium
* Herbal Detoxification: Garden of Life Fungal Defense, Herbal Detox
teas made with Black Walnut Hull & Wormwood (use with caution
and not for more than 5 days - eliminated joint pains)
Additional Comments: Tests
for candida and other bacteria that are not normally tested for
by allopathic doctors are important to get done (the AIMS Clinic
in East Brunswick, NJ conducts such tests). Of course, these are
not usually covered by insurance (depends on the plan).
Fibromyalgia seems to have a better response when alternative (more
holistic) therapies are used and it takes time to "undo"
the damage that has accumulated. My
experience shows that by avoiding drugs, you can recover faster
(and reverse fibromyalgia. Here's what I did:
I turned to yoga (very low impact,
what seniors and bedridden people might do). With that circulation
in the muscles improves and toxicity is also expelled. I started
doing yoga everyday and my mom's friends started giving me massage
every few days to reduce the tightness all over my body...both combined
helped me to come off the medication. Yoga reduced the pain for
about 8-10 hours!. After 1 - 1 1/2 years of exercise, I started
looking at diet/nutrition/detoxification. The pain never completely
went away until I started acupuncture treatments. I am still fighting
the fatigue - but now feel confident that I will be able to find
some herbal alternatives to help that as well.
With pain often depression
accompanies it, and it is imperative to keep reading positive things
and to recognize that adding B vitamins can ease the depression
also instead of medication (taking an increased amount for some
period of time to ease the depression will not hurt anyone.). Understanding
that all this is the body's response to stress and being "objective"
so that you can get the strength to recover is important. If it
took us so long for these things to manifest in the body, why do
we shortchange the "healing power that rest" provides
to the body to allow it to recover again (of course, we need to
give the body the beneficial things it needs to recover - proper
diet, yoga/exercise, rest, vitamins/herbs that will help, etc.).
These are all "common sense" things that we have devalued.
It is my belief that a "quick fix" (drugs) are not the
answer. In our fast-paced society, we have forgotten the basics
that is the knowledge of the past (and we need to rediscover all
that again)!
Diet is very important (avoid milk, sugars and refined products). I believe the candida diet helps to give your whole immune system a break so that it can heal natrually. Detoxification with herbs is also important to get rid of the toxins that have accumulated in the body (no side effects with these). If there is depression, add B vitamins to combat it and also read positive materials and keep in the company of positive and supportive people. Remember that thoughts are temporary and can change (do not give them importance as they will change eventually!) Be strong internally....you can reverse this condition. Do not underestimate the healing power of REST. The body lets you know when you need it (just listen!) High energy vitamins and supplementation of magnesium helped me as well. Accupuncture helps to get rid of pain and restore energy flow to help it get balanced (pick someone good!) Deal with your emotions and let go of whatever you are holding on to. Be good to yourself. Forgive yourself and others around you and see the power of healing (be receptive) change your condition. I was diagnosed almost two years ago, came off all medication within two months after beginning yoga. Turning to natural alternatives has improved / practically reversed this condition. I can now think about going back to work. Find a good naturopathic doctor who has worked with fibromyalgia."
Sent to us on 10/12/05
name: Kathy
sex: Female
age at onset: 34
born: Rochester, New York USA
current city: Spokane, WA USA
how long since diagnosis: one month
pesticide exposure: N/A
prior medical history: I have PCOS, arthritis in
my lower back
theories: I was struck by lightning when I was
20 and it caused some nerve
damage, but over the years I regained my feeling. Other than that,
I do not know what has caused my condition.
what has helped: At this time, I'm just trying
Hydr. Perox and Apple Cider. I'm also going to be starting Aquatic
Therapy.
what makes condition worse: Just waking up, sitting
for long time, extended activity/walking, sitting too long
work: Executive Assistant/HR Analyst
Sent to us on 10/19/05
name: Tania
Sex: Female
born: Australia
Age at Onset: 29 years
How long since diagnosis: 8 Years
Current City: adelaide 38 years
Have you always exercised? Yes very much so. Used
to play state netball, tabletennis, basketball and gymnastics. Now
only walking and swimming. Yes, competitive exercise or harsh exercise
exacerbates symptoms rapidly.
Pesticide Exposure: no
Prior Medical History: Diagnosed with Hashimoto's
thyroidism (underactive) six months after the birth of my son. (January
97). Shortly thereafter, diagnosed with fibro.
Theories: Possibly from the birth of my son and
supposedly having a low thyroid during the course of my pregnancy;
or, they say, from a broken nose in 1983; or, possibly hereditary
(mum has slight symptoms). They think moreso from the birth of my
son and having a low thyroid and not depicting the low thyroid for
six months after having him.
What has helped: Thyroxine Sodium 250 mcgms.daily; 1/2 Cipramil
daily; 1/2 Naprosyn 750SR daily; Sandomigran 1 nightly; Capadex
occasionally; Crampeze for muscle cramps during the night.
What Makes Condition Worse: Stress, excessive exercise,
most types of weather and doing too much during the day.
Work: office work
Sent to us on 10/27/05
Name: Cassandra
Sex: Female
Age at onset: 33
Born: Sun Valley, California
Current city: Simi Valley, California 11 years
Exercise History: Very active, walking, hiking,
water sports, other sports. I am unable to exercise now except for
walking. Exercise exacerbates the pain.
How long since diagnosis: 2 years
Pesticide exposure: Raid, flea sprays etc.. Household
stuff
Prior medical history: Two herniated discs, T-7 & L-5. One ruptured
disc L-4. Syringomyellia.
Theories: No clue, my doctors say it was the back
injury but there is no substantial proof that the two are related.
Could have been high stress for a long period of time, approx. the
last 5 years. Do people have
long or short bouts with this?Sometimes I can go for 4 months and
only suffer from pain in my legs and back, then I wake up and feel
like a house is parked on my body. I hurt everywhere, constantly,
I'm totally
exhausted,numbness in arms and hands, I can't sleep etc..., it can
last for a month or so or can go on for 3-5 months.
What has helped: Nothing yet. Tried accupuncture,
physical therapies (i.e. pool etc..), massage therapy, full body
adjustments from Chiropractor, herbal supplements, pain medication
etc...
What makes condition worse: Stress, exercise.
Work: Managerial (high stress, high activity and
very long hours)
Sent to us on 10/27/05
name: Bobbie
sex: female
age at onset: In my 40's
born: Arkansas, USA
current city: Arkansas, USA 10 years- before that
16 1/2 years at previous residence
exercise+history: Haven't really been physically
active..have walked some for my health..but exercise seems to make
the muscles hurt more..sometimes I feel better, but that is rare
how long since diagnosis: almost 6 years
pesticide exposure: Not known...drank some kerosene
when I was a baby 18 months old, but could have been exposed to
weed killers, insect killers...
Prior medical history: Yes, hypertension, IBS,
GERD, heart murmer, arthritis in neck and shoulders, also, in knees,
depression, menopause,
Theories: I believe that my having pneumonia in March 2000 aggravated
some symptoms I had already had in years past. I was also under
a lot of stress during this time...so I feel that the illness combined
with stress is what really hit me with symptoms..before that, the
symptoms had been few and far between, but I can remember having
some of the isolated symptoms over a period of 10 or 15 years...my
sister was diagnosed about 30 or 35 years, with her symptoms stemming
from childhood...
What has helped: I take a lot of supplements, but
am not sure it has helped a lot..I take Tylenol PM at night to help
pain and help sleep; Calcium with Magnesium, Omega 3 Fish Oil, Green
Tea Caps, tried osteopathy, also have tried Juice Plus, physical
therapy.
What makes condition worse: stress, definitely,
and rain and humidity, cold temps
Work: Office work...in a hospital
Sent to us on 10/27/05
name: Jean
sex: female
age at onset: 27
born: Idaho Falls, Idaho USA
current city: Marysville WA USA 16 years
exercise+history: Very weight conscience--running, biking, hiking,
walking, workout machines, gym membership, etc., etc. Now have to
be very careful not to overdo it--can walk 2.5 miles but not everyday
how long since diagnosis: 8 months--been sick for 22 years
pesticide exposure: nothing out of the ordinary--normal suburban
life with yard and gard
prior medical history: Bipolar II
theories: I believe Fibro is a type of massive
system failure of the endocrine system beginning in the hypothylamus
and affecting the thyroid, pituitary and adrenals. That in turn
causes other systems to malfunction. Also seems to be a serious
problem with nutrients not being absorbed at the cellular level
in spite of normal blood tests. Currently researching how to remove
lactic acid from my system hoping it will decrease flare-ups.
Vital question missing (in the questionaire) is 'how long have you
had Fibro, and when were you diagnosed? I've had it since I was
27--22 long years--emerged slowly at first but has accelerated in
past 10 years--took 6 years to get diagnosed and even then, I asked
the Rheumotologist to evaluate me for it after putting the pieces
together myself. He sent me for a sleep study resulting in a CPAP
machine--that's the only thing the medical profession has helped
me with other than allowing me to purchase my other meds!!! Time
to figure out what I can do to help myself.
what has helped: MSM, malic acid, CoQ10, increased
salt intake--drink salt water, CPAP machine for sleep apnea, Klonopin
and Benedryl promote stage 4 sleep, working on uping intake of magnesium,
B12 among other vitamins/minerals/amino acids, etc. Also on thyroid
hormone--blood tests normal but have subclinical hypothyroidism;
Capzasin HP rub for pain along with trigger point massage done with
large handheld massager sold at large departments stores--made a
huge difference in pain--seldom have to take pain meds
what makes condition worse: stress, mentstration,
change in weather, lack of sleep, overdoing it
work: accountant
Sent to us on 10/29/05
Name: Josie
Sex: female
Age at onset: 50
Born: Ohio
Current city: NC
How long since diagnosis: 4 years
Pesticide exposure: unknown pesticide exposure
prior medicalhistory: osteoarthritis, lumbar scoliosis, carpal tunnel
syndrome.
Theories: My symptoms and diagnosis occured after
a whiplash injury.
I believe an acute, stressful injury sets off the immune system
causing an "overkill" when reacting to the release of
histamines, and platelets at the injury site. This in turn, creates
havoc in the total body system. I feel the immune system has gone
awry. Instead of repairing the tissue/injury, the immune system
has attacked it, as well as other areas of the body erroneously
recognizing these areas as foreign substances. Sort of like a short
circuit in our system. I feel a vital question would be "Did
you have any injury or trauma prior to your diagnosis of fibromyalgia?"
what has helped: Ultram, yoga, heat therapy, relaxation
therapy.
what makes condition worse: cold weather, humidity,
lack of sleep, lying in bed too long, stress.
work: RN
Sent to us on 11/5/05
name: Cindy
sex: female
born: New Albany, IN USA
current city: Clarksville, IN USA
age at onset: 44
how long since diagnosis: 3 years
pesticide exposure: Only on rare occasions when
spraying home for spiders, ants, etc.
prior medical history: Hashimoto disease, hypermobility
syndrome, general anxiety disorder, systemic lupus, acid reflux
disease
Theories: Years of chronic stress, dental hygiene
career (constant cramped working position with muscles in a constant
state of contraction), type A personality (meaning always being
on edge, trying to be perfect, anxious about almost everything)
what has helped: yoga, low impact aerobics, stretching,
massage therapy, chiropractic therapy, acid cider vinegar capsules,
baking soda water, apple cider vinegar baths, or just hot baths,
talking to people, laughing, deep breathing, meditation what makes
condition worse: stress, rain, lack of exercise and stretching,
lack of socializing, fear of never recovering, thought of never
going back to work, feeling useless
work: Dental Hygiene
(Sent
to us on 11/7/05)
name: Anglia
sex: Female
age at onset: 42
born: Foxworth, Mississippi
current city: Foxworth, Mississippi
how long since diagnosis: 6 years
theories: no
pesticide exposure: no
what makes condition worse: rain, humidity, doing
any kind of bending, sitting for more than 20 minutes
work: Nursing Aide
( Sent to us on 11/09/05)
name: Wendy Jo
Sex: Female
born: Idaho Falls
current city: shelley id usa
age at onset: 14
how long since diagnosis: 16 years
exercise history: yes. farm labor, circuit training
when I can tolerate it.
how many years in current city: 36 yrs
prior injuries: rape
pesticide exposure: nke
prior medical history: pcos, depression
Theories: Rape was the starting factor. Pattern
i see is the stress factor that is apparent on the cases i read
above.
what has helped: ambien, trazadone, t/3 for pain,
amitryptaline
what makes condition worse: menstral cycle, fluctuations
in temp, stress.
work: dental assistant
( Sent to us on 11/10/05)
sex: female
age at onset: 45
born: Big Stone Gap VA
current city: Big Stone Gap VA
how long since diagnosis: 4 years at least
pesticide exposure: None
prior medical history: High Cholesterol
what has helped: She has been taking ACV for a
few weeks now, and already has more energy and feels much better.
what makes condition worse: Stress
work: Unemployed
10/7/2005:
age at onset: aprox. 37 years old
born: Detroit, Michigan, United States
current city: Wahiawa, Hawaii, United States
how long since diagnosis: 3 years
name: Carol
pesticide exposure: limited / weed killers, grass
fertilizer, bug sprays
prior medical history: Graves' disease (hyper-thyroidism)
treated with radiation
ablation therapy
sex: Female
theories: Very stressful lst marriage which resulted
in divorce. Graves' disease. Very physical job as a sales merchadiser
for 6 months-about 1 month into the job the headaches & muscle
spasms started & haven't stopped yet and that was 7 years ago.
what has helped: Malic acid/magnesium (to soon
to be sure yet), massage therapy,
yoga
what makes condition worse: stress & physical
exertion
work: Was a sales merchandiser/ can't work now
10/9/2005:
age at onset: 35
born: San Francisco, California USA
current city: Petaluma, California USA
how long since diagnosis: 10 years
name: Darcey
pesticide exposure: Yes, many! I lived in Brentwood
CA prior to diagnosis. They spray everything.
prior medical history: No
sex: female
theories: Being physically and verbally abused
for several years just prior to developing fibromyalgia is a theory,
especially since stress worsens my symptoms dramatically.
what has helped: Staying away from refined foods.
MSG tends to aggrevate. The Bowen Technique helps immensely.
what makes condition worse: Stress mostly
work: Electronics Technician
10/15/2005:
age at onset: 26
born: Spokane, WA
current city: Olympia, WA
how long since diagnosis: 7 years
name: Tina
pesticide exposure: yes. Don't know. Know my dad
used diazanine on home grown onions.
prior medical history: Multiple food and environmental
allergies, scholiosis, sciatica, chronic yeast infections, genital
herpes
sex: female
theories: Grew up in alchoholic home and stayed
in abusive relationship for three years. Also, just stress of overly
being overly busy with high school activities and being high achiever.
In college, way too much stress of school working two jobs, being
in unhealthy relationships etc. Now happily married but noticed
symptoms big time after birth of second child.
what has helped: acupuncture during pregnancy helped
with sleep/depression, yoga helped with back pain, Paxil and Nortriptaline,
although am going off Paxil now and am using just 10mg of Nort.
for sleep. Apple cider vinegar does help temporarily for pain and
fatigue. Just started MSM and am noticing normal bowel movements
(no more constipation). Am taking Cytomel T3 and has been helping
with memory, pain and fatigue. Am going to try Armour to see if
it works any better. Also am on Nystatin for internal yeast. Also
am taking acidopholus and
magnesium citrate.
what makes condition worse: stress, lack of sleep,
work: elementary teacher
10/17/2005:
age at onset: 15
born: Macon, MO, USA
current city: St. Petersburg, FL, USA
how long since diagnosis: 3 months
name: Suzanne
pesticide exposure: maybe, I grew up on a farm
prior medical history: Depression, Anxiety, chemical
sensitivity
sex: Female
theories: i think chemicals and food additives
combined with sedative,fast paced lifestyles, and lots of stress,
perhaps cause fibromyalgia, i definitely think that our bodies aren't
strong enough to combat all of these things.
what has helped: no milk, processed foods, white
sugars, lots of exercise (the right kind) slower paced environment.
what makes condition worse: stress, rigorous physical
activity, lack of exercise
work: Engineering Technician
10/19/2005:
age at onset: 20
born: Grand Manan Island,New Brunswick,Canada
current city: Parrsboro, Nova Scotia, Canada
how long since diagnosis: just diagnosed, finally!!
name: Linda
pesticide exposure: no
prior medical history: gall bladder removed, ulcer,
high blood pressure, high colestrol
sex: Female
what has helped: extra fiber helpes regulate bowels,
rest sometimes helps pain
working through the pain keeps me moving-or I couldn't move at all.
what makes condition worse: stress, humidity,some
types of movement
work: Factory work, home care
11/3/2005:
age at onset: 53
born: Spartanburg SC USA
how long since diagnosis: 8 yrs
name: Bobby
pesticide exposure: no
prior medical history: yes Severe Depression
sex: male
theories: NO I have no energy.Dont want to do anything.
cant do anything, was very active before.
what has helped: pain medicines
what makes condition worse: walking or sitting
for over 20 MIn
work: Captain-- Prison
11/13/2005:
age at onset: 51
born: grove city. pa., usa
current city: butler,pa.,usa
how long since diagnosis: 3 months
name: janet
prior medical history: rhuemantic fever, measles,
mumps as a child. pulled muscles, cysts in my breasts, fybroid tumor
in uterus, mild diabetes, major acid indigestion. general malaise,
aching in muscles of legs, retinal bleed of right eye
sex: female
theories: stress changes in my personal life
what has helped: malic acid and magnesium magnetic
therapy, massage, small dose of lithium
what makes condition worse: stress, fatigue
work: nursing
11/14/2005:
age at onset: 31
born: Prague, OK Lincoln
current city: Dale, OK Pottowatomie
how long since diagnosis: 10 years
name: Lisa
pesticide exposure: no
prior medical history: 2 C-sections
sex: female
theories: I hate the fibrofog. I cannot lose weight.
I get very depressed. I hurt and am tired most of the time. I taught
myself in my teen years playing sports to block some pain. I have
to work...no choice, so tired or not, off to work I go. My family
life suffers, though. I can't seem to keep up with my housework,
and I crash or just get cranky when I'm home. Probably because of
the effort and energy it takes to teach primary children. It seems
everything mentioned that is bad for us to eat is what I crave.
Milk, sugar (particulary chocolate), and bread foods are all I want
to eat. Nothing else sounds even remotely good to me. I
hate taking my anti-depressants and anxiety meds. that my doctor
put me on. No one told me that it was almost impossible to get off.
Side effects are BAD! I just wish someone would take the time to
research this problem and help us. Sigh!
what has helped: yoga
what makes condition worse: stress, change of schedules,
no down time
work: teacher
11/16/2005:
age at onset: 52
born: London, UK
current city: Dorset, UK
exercise+ history: Yes, Took additional course
of exercise this year - lost a stone in weight. Did not resolve
pain, but didn't make worse and the increased energy helps me cope
how long since diagnosis: 1 year
how many years in current city: 12 years
prior injury: decorated house for 3 days
pesticide exposure: Yes PCB's sheep dip etc but
many years ago prior medical history: none, I have low cholesteral
and all blood tests are clear for diabetes, rhumatic markers etc
sex: Female
theories: Yes - Over exercise during decorating
which went on for 3 days. This co-incided with coming of HRT the
month before. I think it was a combination of hormone change and
physical body stress. Up until then I had had a perfect sleep pattern,
since I have been in too much pain to get a good nights sleep. I
am not depressed, I am otherwise in good health.There
does seem to be a pattern of trauma linked to hormonal change. This
may
explain why women are more at risk.
what has helped: have taken St Johns Wort which
did help was relieved of symptoms for a whole week. I have reduced
alcohol intake and caffine. In fact the reduction in caffine and
substituting water did co-incide with a reduction in pain.
what makes condition worse: Weather - cold and
damp, lack of sleep, winter nights
work: web developer
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