Fibromyalgia Questionnaire & Results
Latest Update: 11/19/2009
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29 QUESTIONNAIRE COMPLETED DATA FORMS FOR December 2008
12/31/2008
First Name: Renate
Age: 56
Male or Female: Female
City: Parrish
State/Province: FL
Country: USA
How long have you lived there: 11 years
Where were you born: Germany
Is this the first time you have taken our questionnaire: yes
If not, why are you returning: first time running into a "questionnaire"
Are you still working: no
What is Your Line of Work: Licensed Life & Health Insurance professional
How has Fibro affected your ability to work: yes
How has Fibro affected your life: poor sleep, difficult working, living or doing any activity at all
What were your first symptoms: Low back pain, leg pain. Then, pain in the back of my head, neck, shoulders and down one arm. Severe headaches.
Your age at onset of symptoms: 27
How fast was your rate of decline: very very fast
What are your current symptoms: same as above with the addition now of knees and shoulders
Number of years since you developed symptoms of fibromyalgia: 29
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: not sure
Describe the extent of your brain fog: not able to function at work. forgetful, not able to keep track of conversations. Would forget a conversation in 1 minute.
Estimate number of doctors you have seen for Fibro related symptoms: 30
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: they seem to only work within their specialty and that is a problem.
What remedies or medications have you tried: alternative therapies, PT - hands on PT, cranial sacral, MET, accunpture, massage.
What makes you feel better: water theraphy - can't find a class that works for me at the moment. Many pools are outside - too cold for me
What makes you feel worse: certain movements like opening a door or refrig with one hand rather than two. Also, going up or down a step that is higher than 5 1/2 inches.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: not sure if this is fibro, but it fits - many car accidents etc. however, believe muscle imbalances play a role
Are we missing any important questions: no. thank you.
12/30/2008
First Name: jo
Age: 43
Male or Female: female
City: Sittingbourne
State/Province: kent
Country: kent
How long have you lived there: 23
Where were you born: kent
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: office manager
How has Fibro affected your ability to work: take more time off and get very tired and tension levels get very high
How has Fibro affected your life: sleep more take more rest
What were your first symptoms: headaches, joint pain, getting stressed not sleeping properly
Your age at onset of symptoms: 39
How fast was your rate of decline: not sure when it started
What are your current symptoms: tiredness, stress impacts, joint aches
Number of years since you developed symptoms of fibromyalgia: 1
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: i lose words that i want to use, i forget stuff that i would usually remember
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: one collectively but the consultants individually
Describe your experience with doctors: not connecting the dots
What remedies or medications have you tried: lemon balm, massage, physiotherpy
What makes you feel better: rest, staying calm
What makes you feel worse: workload increases, carrying symptoms all the time
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments:
Your theories or comments: Ido believe that there is an emotional element to this condition. I can feel the immediate impact of stress on my demeanour
Are we missing any important questions: what medication have you been prescribed
12/29/2008
First Name: louise
Age: 29
Male or Female: female
City: wigan
State/Province: lancashire
Country: england
How long have you lived there: 29yrs
Where were you born: billinge,wigan
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: (yes) currently on sick (SSP)
What is Your Line of Work: representative for a well known chocolate manafactuer
How has Fibro affected your ability to work: driving ability has suffered, keep having time off for long periods of sickness,inhability to make snap decisions, some difficulty in communication,etc
How has Fibro affected your life: cnat do things i used to ,things became harder to do ,cant hug my children/husband the same,lack of libido,mobility became more difficult ,depression,mood swings,and lots more
What were your first symptoms: tiredness,pains everywhere head to toe, no energy,sleep disturbance
Your age at onset of symptoms: 24
How fast was your rate of decline: very quickly about 3 months
What are your current symptoms: pain head to toe (BURNING SHOOTING STABBING)aching ,stiffness,restless leg ,face pain ,itchyness ,fibro fog ,sensitive to light sound touch ,sleep disturbances etc
Number of years since you developed symptoms of fibromyalgia: nearly 5 yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: nearly 5
Describe the extent of your brain fog: difficulty concentrating ,driving,memory loss ,ensitivity to light, touch ,sound ,taste ,inhability to make snap desisions
Estimate number of doctors you have seen for Fibro related symptoms: 4 yr 6 mth
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: poor
What remedies or medications have you tried: co/codamol 30/500 and lower strengths ..amitriptyline 10,20,30,40mg..dicloflex ,codine,ibuphren
What makes you feel better: not a lot
What makes you feel worse: a lot of different things .work,home life ,depression,stress,excercise,cleaning ,doing to much on a daily basis etc
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: not enough study in the uk ..not enough info for GPs in uk
Are we missing any important questions: no
12/28/2008
First Name: cindy
Age: 31
Male or Female: female
City: savannah
State/Province: ga
Country: usa
How long have you lived there: all of my life
Where were you born: sc
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: teacher
How has Fibro affected your ability to work: When I wake in the am, I feel unrested and that feeling continues throughout the day. I cannot write on my chalkboard because the muscles in my arms get so tired. I constantly lose words when I am talking and my students are left to fill in the blanks. It's literally like a guessing game at times. I often feel very volatile and am easily upset by small things at home and work.
How has Fibro affected your life: I am so tired and in so much pain by 4:00 every day that I am unable to do everyday chores at home. If I cook dinner, I'm too tired to clean up. My eight year old daughter has to take on the responsibility of bathing her 2 year old sister every night because it is too painful.
What were your first symptoms: neck pain for months following an auto accident with a hand injury. Following that was pain in my elbow and loss of range of motion with no apparent cause or diagnosis
Your age at onset of symptoms: 29
How fast was your rate of decline: It seems to vary. I have only been diagnosed for about 7 months but I do feel that I am half the person I was two years ago
What are your current symptoms: muscle fatigue, headaches, sleepiness, rls, tmj, resistance to meds, ibs, joint pain, irritability, brain fog, depression, insomnia, hot flashes
Number of years since you developed symptoms of fibromyalgia: 1 1/2
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: I constantly lose my words when talking, I cannot remember simple things like when I last washed my hair or where I put my keys. I will go into a room and walk around for a while then go sit back down and finally remember why I got up in the first place. I have trouble retaining things when I read, also, I recently took up crocheting but I crochet the same round of a hat over and over
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: I feel that the doctors don't believe me when I tell them what's going on. they treat me like It's my fault and that if I would just get up and exercise and lose some weight I would be all better. They don't realize that it isn't a choice for me to overcome being tired and just go to the gym. It is physically impossible
What remedies or medications have you tried: lyrica, most pain killers, provigil, pretty much everything that has been approved for fibro and now adapex and cymbalta, which isn't working
What makes you feel better: sleeping
What makes you feel worse: working
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I am sick and tired of being sick and tired. I am also wondering why we don't see any celebrities with fibro trying to help find a cure
Are we missing any important questions:
12/28/2008
First Name: Shelley
Age: 43
Male or Female: Female
City: Hays
State/Province: Kansas
Country: USA
How long have you lived there: 14 years
Where were you born: Nebraska
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Personal Counselor at a University
How has Fibro affected your ability to work: I have quit several jobs due to my symptoms. I love my job that I have now and receive great personal satisfaction from it. So I am trying to hang on to this job! However, I have to be sure I only work the hours required. I try not to work over-time and get too tired, otherwise my symptoms worsen. I often have to use the weekends to rest and recover in order to go back to work the following week. There is discussion right now about going to ten month contracts due to state budget cuts. For me that would be great to have a couple of months off in the summer to rejuvenate! I also have an understanding supportive boss which is helpful!
How has Fibro affected your life: I was diagnosed with fibromyalgia 10 years ago. Since then I have gained nearly 80 pounds. I am sick often, traveling is difficult because I almost always have a flare up of symptoms so I do not travel much anymore, I rarely go out in the evening or on weekends. What little energy I have left I save for my husband and two girls. My husband is wonderfully supportive and helpful with housework, etc. which helps a great deal!
What were your first symptoms: Extreme fatigue, low grade fever, muscle aches and pain. Sleep problems, brain fog, and headaches
Your age at onset of symptoms: 32
How fast was your rate of decline: Pretty fast. Within a year it significantly impacted my life.
What are your current symptoms: Same as above, plus skin break-outs, chemical sensitivity, food sensitivities and allergies, memory problems, muscle weakness. And now I have low body temperature and low blood pressure instead of the chronic low grade fevers.
Number of years since you developed symptoms of fibromyalgia: almost 11.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 11
Describe the extent of your brain fog: Forgetful, can't think of names or words. Sometimes I can't even say a coherent sentence. Cannot concentrate or focus. Poor memory.
Estimate number of doctors you have seen for Fibro related symptoms: 8-10
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Depends on the doctor. Some have ignored them completely. Some doctors treat individual symptoms and some doctors have tried to treat my symptoms collectively.
Describe your experience with doctors: Conventional medical doctors wanted to treat me with antidepressants and/or pain killers. One conventional doctor just said I need to exercise and get some sleep. I have had the most luck with a rheumatologist and a doctor who specializes in integrative medicine.
What remedies or medications have you tried: I have tried so many things I can't remember them all. Some that I can remember include Celebrex, Ultram, low-dose antidepressants, Ibuprofen, various supplements (Co-Q10, 5- HTP, MSM, glucosamine, magnesium, to name a few), diet, exercise, meditation to reduce stress, yoga (before I got heavier). Juicing, fasting, hydrogen peroxide treatments, armour thyroid, bio-identical hormones (Progesterone, estrogen, DHEA and testosterone).
What makes you feel better: Again, I have tried so many things simultaneously sometimes it is hard to tell what is actually helping and what isn't. However, I feel that a healthy diet is very important. I feel much worse when I eat alot of sugar,white flour products and processed foods. I try and stick to organic, unprocessed foods as much as possible. Reducing stress, getting 9-10 hours sleep a night and resting as much as possible. I think MSM and glucosamine help along with Fish Oil. Magnesium, calcium and B-12 shots have been helpful. The hydrogen peroxide treatments I received through an IV with added minerals and vitamins also helped. However, I felt worse doing these treatments before I felt better.(I think my body was detoxing). Switching to a non-flouride toothpaste and eliminating aspartame helped. The armour thryoid and bio-identical hormones have been an enormous help! Before I started the hormones I could not work. I have been taking these hormones about 2 years now and have seen a major difference (although I still have a ways to go). Thinking positive and choosing to be happy! :)
What makes you feel worse: Poor diet, poor attitude, lack of sleep, traveling, stress.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water and toothpaste
Have you made dietary changes to avoid any other neutrotoxins: Yes. I try and avoid aspartame and MSG as much as possible.
Have you tried any thyroid specific treatments: Armour Thyroid, 1 g a day.
Your theories or comments: I also have an identical twin sister with fibromyalgia and we were diagnosed at the same age of 32. My older sister also has fibromyalgia. I am curious about genetic links. I also think my mother suffered from FMS but was never officially diagnosed.
Are we missing any important questions:
12/26/2008
First Name: Deanna
Age: 30
Male or Female: Female
City: Cass Lake
State/Province: MN
Country: US
How long have you lived there: 30 years
Where were you born: Minnesota
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: administrative / office
How has Fibro affected your ability to work: concentration, get stiff when working, pain is consistant
How has Fibro affected your life: major changes as it has progressed, no longer do the things i used to with the kids in my famiy and now my own child. am exhausted from work and unable to keep up with the day to day stuff. constant stress from childs medical and inadequate sleep.
What were your first symptoms: jaw (TMJ) and shaulder pain and stiffness
Your age at onset of symptoms: 15
How fast was your rate of decline: has declined quicker after birth of my daughter 9 years ago, have had major flare since then and strength has changes alot.
What are your current symptoms: pain in all 18 points, whole body is in pain everyday all day, unable to find comfortable seating or laying positions, sleep only 4-6 hours a night waking ever 1-1.5 hours, headaches and blurry vision, stiffness sets in after only being still for a few minutes,
Number of years since you developed symptoms of fibromyalgia: 15
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 9
Describe the extent of your brain fog: unable to concentrate, sometimes dont hear someone at all, or have to have them repeat, extremely forgetful
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no-
Do your doctors treat your symptoms individually or collectively: individually, am trying to find someone to look at everything, havent found one here yet.
Describe your experience with doctors: out of all the doctors and walk-in dr, only had good experience with one,was very helpful.
What remedies or medications have you tried: alph-stim, OT, PT, Pool Therapy, flexoral, tramadol, tordal, motrine, tylenol, other pain meds (allergic to many) fish oils and supplements, hot tub,cymbalta, ROM, walking, stretching.
What makes you feel better: alphastim, ROM, some walking and stretching keeps me a lil functional physically, hot tub helps when accessable for a little better sleep, otherwise, nothing really. have not had anything help with the concentration.
What makes you feel worse: medications make the brain fog worse and i have a loopy/hangover affect with the smallest doses. pool, ot, pt put me unfuntional physically for days, continued treatment only worsened the effects,
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no- no kowledge of this
Have you tried any thyroid specific treatments: no-dr have not rec yet, thyroid tests are fine.
Your theories or comments: none yet, just hoping to find resources and help.
Are we missing any important questions: no
12/26/2008
First Name: Kate
Age: 57
Male or Female: f
City: Wichita Falls
State/Province: TX
Country: usa
How long have you lived there: 32 yrs
Where were you born: Minneapolis, MN
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: WHAT WAS: Martial Arts instructor-Tai Chi Chuan Yang style
How has Fibro affected your ability to work: Can't teach any more, it is even hard for me to do the short section form myself and to do Qi Gong.
How has Fibro affected your life: Literly pulled the plug on everything in my life. I am in pain 24-7. I am in a constant flare with mega flares.
What were your first symptoms: I woke up from the overectomy and KNEW they had beaten the hell out of me during surg. Kept in pain in all pressure points for three months. went to a arthritis spec. three drs. confirmed fibro dx.
Your age at onset of symptoms: 47 yrs
How fast was your rate of decline: Fast. I had been a bouncer at a huge bar, pain took me out. Health aide for one yr. Pain stopped that. Was a secretary for church, stress and pain stopped that. I am now a couch potato.
What are your current symptoms: Pain in all pressure points. Neck and shoulder pain with terrible muscle spasms and lumps with major swelling in area. Leg pains, throbbing, stinging pains. wrist pain.Pain like wasp stings hither and yon. Feels like my body is in one giant indian burn. fibro fog. Hard time typing, which had been a mastered skill. Brain can't keep on task to read a book. Used to read 7 or more books a week. Now, hard to get through a thin newspaper, takes all day to read. Take a bath, yeah right, must take full load of pain meds to do so.
Number of years since you developed symptoms of fibromyalgia: 10 yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10 years
Describe the extent of your brain fog: Can't think straight, can't read for any length of time. Hard time with words sometimes.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: Unfortunatly. they blame everything on the fact I have fibromyalgia.
Do your doctors treat your symptoms individually or collectively: colectively. All roads lead to rome, all my roads (pain, etc) lead to fibromyalgia, oy vey!
Describe your experience with doctors: Good for the most part. Internist is through the military base, never know if my dr will be deployed or just missing in action. Pain Dr is okay, dismisses many of my aches, pains, etc.
What remedies or medications have you tried: Massage, physical therepy, swimming, pain meds.
What makes you feel better: peace and quiet, little to no stress. naps, quiet rooms, low light and NO weather highs and lows. Mybe I should find a glass house....hmmmmm
What makes you feel worse: Loud noises, lots of people, walking to much, wild weather changes both highs and lows. Stress, stress, stress. Rolling over in bed........
Have you tried avoiding fluoride in your diet: Yes
If so, which sources of fluoride: tap water. At 17 I was way over exposed to DDT. My dad painted my entire bedroom with DDT to get rid of the cricket problem. I wonder if all that exposer didn't add to or do all this pain. I am always looking for something that caused the fibro... maybe, lyme disease.
Have you made dietary changes to avoid any other neutrotoxins: yes. have made most of our food for years. even before problem with fibro started.
Have you tried any thyroid specific treatments: yes, they said border line, but didn't say which was. maybe need a recheck
Your theories or comments: I think the first attack happened in 1994, six years before all hell broke loose with the fibro. My dad used me as his stress control, ie: numerous bad beatings for me. In a high stress marriage for 23 yrs. Also, as listed above over exposure to DDT. Once out of the high stress marriage, and remarried to the man of my dreams, no stress, great life... wham. Life isn't always fair, now is it? At least its not cancer or or or...
Are we missing any important questions: Naw. pretty close to the hip. The sore one. Just need some answers about the DDT, fluride. Please ignore my horrid spelling, wanna talk about fog? he he
12/23/2008
First Name: Angela
Age: 25
Male or Female: female
City: Bath
State/Province: PA
Country: USA
How long have you lived there: 25 years
Where were you born: Bethlehem
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: na
How has Fibro affected your ability to work: i am unable to work becuase of fibromyalgia
How has Fibro affected your life: it has hindered my relationships with people, my social life, my ability to carry simple household chores, I am hardly able to care for myself let alone care for my 2 year old son.
What were your first symptoms: pain and numbness in wrists, fingers and neck, moodiness
Your age at onset of symptoms: 24
How fast was your rate of decline: my symptoms affected my ability to care for myself and work within 6 months
What are your current symptoms: pain in neck, shoulders, hands, hip and back, frequent tension headaches (at least 3 days a week), difficulty remembering things or carrying out simple instructions, tiredness & fatigue, weakness in legs in the morning and evenings, tingling and numbness it arms, back and legs, anxiety attacks, depression, sudden mood changes, lack of concentration
Number of years since you developed symptoms of fibromyalgia: 1 year
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6 months
Describe the extent of your brain fog: unable to make decisions, unable to remember what I was doing when I get sidetracked from a task.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: only 2 doctors have recognized and acknowledged all of my symptoms
Do your doctors treat your symptoms individually or collectively: 2 doctors treat my symptoms collectively
Describe your experience with doctors: the neurologist thought I was crazy and that my symptoms were completely due to my need of pyschological help. Orthapedist was a waste of time and made no attempt to diagnose or treat my symptoms. Family dr just gave me refferals to other doctors. Pyschologist and reumatologist have worked together to treat all of my symptoms and continue to give me their support in my fight for SSD.
What remedies or medications have you tried: Flexeril, Cymbalta, Vicodin, Neumbumtone, zoloft, darvacet, lunesta, ambien cr
What makes you feel better: swimming, massage, yoga, sufficient rest, good quality sleep, meditation, faith in God
What makes you feel worse: too much physical activity, stress, anxiety, sitting, standing or walking for more than 15 minutes at a time
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes, i avoid alcohol
Have you tried any thyroid specific treatments: no
Your theories or comments: my condition is genetic, my sister and our cousin have also been diagnosed with fibromyalgia, I feel that our government does not yet recognize the severity of FMS and is therefore reluctatnt to approve FMS patients disability even though they really are unable to work.
Are we missing any important questions:
12/22/2008
First Name: Linda
Age: 47
Male or Female: Female
City: Tucson
State/Province: Az
Country: United States of America
How long have you lived there: 40 years
Where were you born: SAn Luis Obispo, California
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: teacher
How has Fibro affected your ability to work: yes
How has Fibro affected your life: there are days I can't get up from bed. Pain medication doesn't work. I am tired all the time. I am no longer as active with family and friends.
What were your first symptoms: pain in chest, left arm, and back
Your age at onset of symptoms: 41
How fast was your rate of decline: at first I was rapidly declining. then it seems to have subsided a bit. Now it is back with a vengence. I have been in bed for three days.
What are your current symptoms: extreme pain. nausea
Number of years since you developed symptoms of fibromyalgia: 6 years.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4 yeas
Describe the extent of your brain fog: I can't recall things that I was thinking about a few seconds ago.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no, I have to ask for pain medication.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: not too knowledgable
What remedies or medications have you tried: lyrica, naproxen
What makes you feel better: applying heat and lying down or sleeping if I can.
What makes you feel worse: change of weather, or stress
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: toothpaste
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:
12/22/2008
First Name: Christine
Age: 53
Male or Female: Female
City: Fairview
State/Province: Alberta
Country: Canada
How long have you lived there: 8 years
Where were you born: Fairview, AB
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: I am on disability but i do bookeeping as much as I can from home
How has Fibro affected your ability to work: Totally impaired it. I used to work 60 - 70 hours a week plus take care of my children. Now i am lucky if i can push myself to do 3 or 4 hours of work a day.
How has Fibro affected your life: It has basically ruined it from what it was. I has made me totally uncertain of the quality of my future. I do not want my future to be like this for another 30 - 40 years. I do not know that i could tolerate it
What were your first symptoms: Always tired; always in pain and when i excercised the pain got worse; could not go into a deep sleep; i would forget basic words such as 'table' 'counter' etc
Your age at onset of symptoms: about 37
How fast was your rate of decline: very fast. Within five years i could no longer handle work hours and had to quit
What are your current symptoms: Extreme debilitating exhaustion; full body pain 24/7; shortness of breath; body stiffness; loss of hair; terrible short term memory loss and, this past year- horrible cognitive functions to the point i cannot solve problems relating to entering data in my bookkeeping
Number of years since you developed symptoms of fibromyalgia: 17 plus
Do your symptoms include brain fog: Yes - major
Number of years since you developed the brain fog: the memory loss was from near the first but the brain fog was severe only about 1 1/2 or two years ago.
Describe the extent of your brain fog: as i said above, i cannot easily work out simple solutions when doing my bookkeeping. I have a hard time making a decision about what to make for supper or what is needed for groceries. Simple every day things has, this past year, become very hard to do.
Estimate number of doctors you have seen for Fibro related symptoms: about 10
Do your doctors tend to focus on all your Fibro symptoms: not sure how to answer this. Early on they suspected Fibrositus - the original name - and said there was no cure. The Rhumatologist got me into Physio and do do a sleep study; She diagnosed me with Fibromyalgia and wanted me on anti-depressants as there was no cure. Since then doctors just basically do a blood test when i have some complaint to see what it is
Do your doctors treat your symptoms individually or collectively: collectively I guess it would be. When i have a complaint they just chalk it up to another 'strange' Fibromyalgia sympton
Describe your experience with doctors: All - other than the Rhumatologist and early Physiotherapist, consider it all in a persons head.
What remedies or medications have you tried: Physiotherapy; Calcium and Magnesium; Tylenol; stronger pain killers but i do not tolerate them well; have recently taken Gabapentin to help me sleep; am taking Natural Cellular Defense to take the toxins out of my body; am taking Vit B12 drops; Arobic Oxygen; Melatonin and just two days ago started D-Ribose.
What makes you feel better: the Oxygen, the magnesium - Peter Gillham's Calm;D-Ribose; Melatonin;
What makes you feel worse: cold weather, stress; exercise (more than just a little walking or stretching); being too active ...
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: Don't think so - don't know what foods give me neurotoxins but am taking NCD to get rid of toxins in my body
Have you tried any thyroid specific treatments: yes i take a Thyroid supplement - tried Synthroid for a few years and it did not make me more energetic. Am trying natural Thyroid now. Dont know that it is helping either
Your theories or comments: i think there is a LOT of misdiagnosing going on with people being diagnosed just because they are tired and have some pain. It makes a mockery out of the actual medical condition and belittles those of us who actually suffer
Are we missing any important questions: What are some other symptoms associated with Fibromyalgia? I could give you some such as blurry vision; post nasal drip; tactile weirdness - ie - feeling glasses resting on the nose even when they are not now there or finger pressure on your arm after the fingers are lifted
12/21/2008
First Name: Tammy
Age: 42
Male or Female: female
City: dolgeville
State/Province: New York
Country: USA
How long have you lived there: 1 yr 3 mo.
Where were you born: Gloversville, NY
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: I was an account manager, for a base of 2800 accounts in sales.
How has Fibro affected your ability to work: I am not able to work, I have hard enough time keeping my home clean and trying to cook and do laundry.
How has Fibro affected your life: I am not able to do the things that I used to. Weather changes also make me hurt, and seems my immune system is off too as I get sick alot.
What were your first symptoms: I hurt all over and exhuastion
Your age at onset of symptoms: 38
How fast was your rate of decline: seemed to develope more over the past 2 years.
What are your current symptoms: I hurt all over and still find that I am getting more pressure pionts and exhausted so much of the time. I either sleep alot or not at all.
Number of years since you developed symptoms of fibromyalgia: 4
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: short term memory stinks, I can go to do something and may forget what it was before I do it.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: My GP was the one who diagnosed me, but a rheumatologist said it was all in my head.
What remedies or medications have you tried: Try to keep active, walk almost every day, I did try to take Lyrica, but gained 12 lbs. in a month, I already am over weight.
What makes you feel better: walking really does help, but it seems that I am sick on and off alot so I am not always able to.
What makes you feel worse: Sitting around feeling sorry for myself, and if i do any kind of new activities. like say ride on a 4 wheeler makes me hurt terrible, doing anykind of yard work, or just about anything even having sex makes me hurt bad the next day even.
Have you tried avoiding fluoride in your diet: havent had any in over a yr I have well water
If so, which sources of fluoride: nothing except for a special toothpaste that my dentist perscribed because I have so much acid. My teeth are deteriorating.
Have you made dietary changes to avoid any other neutrotoxins: I am lactose intolerant so no dairy for me either, If I do eat any I suffer in more than 1 way
Have you tried any thyroid specific treatments: No, although I have had my thyroid checked by a blood test and was told all was fine
Your theories or comments: i just don't know where to turn, some of my family and friends think I am a hypocondriac
Are we missing any important questions: Is there help for me? I really feel like I have lost control. Not much enjoyment from being sick and hurting always.
12/19/2008
First Name: janis
Age: 55
Male or Female: female
City: ayr
State/Province: scotland
Country: GB
How long have you lived there: 4 years
Where were you born: ayr
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: therapist
How has Fibro affected your ability to work: impossible to work physically
How has Fibro affected your life: totally
What were your first symptoms: cramp and falling
Your age at onset of symptoms: 27
How fast was your rate of decline: fast
What are your current symptoms: everything ibs bad back pain ,protrusion in back and neck, cramps , insomnia,pins and needles in extremeties, you name it
Number of years since you developed symptoms of fibromyalgia: diagnosed in 2001-2
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: sad i try to hide it.sometimes i can,t remember what i read or what i.m saying. can,t read fast enough subtitles on tely
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: no . now i,ve found dr. gilhooly in glasgow
Do your doctors treat your symptoms individually or collectively: nhs.. don,t treat only suggest anti depressants . dr. gilhooly will treat me for fibromyalgia
Describe your experience with doctors: disgusting attitude. was discharged from reumatologist clinic cause i don,t take their medicine.
What remedies or medications have you tried: chemical none
What makes you feel better: supplements, detox, hydrocolon therapy,
What makes you feel worse: stress walkin g housework cannot do it
Have you tried avoiding fluoride in your diet:
If so, which sources of fluoride: never thought of it until now although i don,t drink tap water
Have you made dietary changes to avoid any other neutrotoxins: ye s i lunch with nutritional supplement + ribose eat rye bread spelt pasta
Have you tried any thyroid specific treatments: no
Your theories or comments: i am disgusted with the national health.they discharged me from their clinic, my dentist does not want to know of fibromyalgia or natural supp or homeopathic med. i am alone in this story. was refused any form of invalidity and most of all a parking permit. i think you have to go to these meeting without any pride and if your walking on pain use a stick or someones arm. but don,t try to keep dignity by trying to appear as upright as poss and walk on your pain.and dont let a doctor know that you know anything. and most of all don,t suggest.otherwise your probably 'off your head'
Are we missing any important questions: yes. 'do you receive any form of assistance
12/19/2008
First Name: nicole
Age: 39
Male or Female: female
City: davenport
State/Province: ia
Country: usa
How long have you lived there: two years
Where were you born: ia
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: server
How has Fibro affected your ability to work: in winter it's worse..sometimes can barely walk..pain everywhere.
How has Fibro affected your life: makes everyday tasks seem daunting.
What were your first symptoms: muscle tension, achy, swollen
Your age at onset of symptoms: 29
How fast was your rate of decline: five years later, affected me significantly..daily moving north made it worse
What are your current symptoms: severe leg pain, muscle spasms, tension, allover aches, lack of sleep, numbness and tingling
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: moderate
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: 1st, no 2nd, yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: first kinda gave up on me, it seemed second is very receptive and helpful
What remedies or medications have you tried: amitriptyline, muscle relaxer,lyrica and cymbalta..just started that
What makes you feel better: sunshine
What makes you feel worse: cold
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: winter makes it unbearable the older i get, the more compounded my symptoms seem..wish i would've gotten help sooner
Are we missing any important questions: no
12/14/2008
First Name: Darlene
Age: 48
Male or Female: Female
City: La Palma
State/Province: CA
Country: united states of america
How long have you lived there: 2 years
Where were you born: Bakersfield, CA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: none
How has Fibro affected your ability to work: N/A
How has Fibro affected your life: No longer able to backpack, no longer find joy in sewing, singing, painting, etc. My speech is often confused. I carefully watch my activities so I don't overdo. I've gained weight, now have diabetes.
What were your first symptoms: severe fatigue, pain especially in shoulder. Flu like symptoms. General feeling on unwellness. depression brain fog
Your age at onset of symptoms: 35
How fast was your rate of decline: gradual at first, then very quickly
What are your current symptoms: pain, fatigue, restless leg syndrome, headaches, achiness occasional brain fog
Number of years since you developed symptoms of fibromyalgia: 13
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 13
Describe the extent of your brain fog: comes and goes- sometimes none, sometimes can't remember things (like my own name) reverse words in a sentence, unable to make decisions,
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: No, they ignore them
Do your doctors treat your symptoms individually or collectively: Indiviually if at all
Describe your experience with doctors: First doctor said it was all in my head. Then she said that although xrays showed no evidence that I had osteoarthritis at age 35. Next doctor drugged me on Elavil and relafen. Big mistake. After that I almost never discuss fms with my doctor. If I do, I tell them what I think will help (i.e. soma for body wide muscle spasms) and figure out on my own what supplements, food, and vitamins could help me.
What remedies or medications have you tried: Relafen, soma, ibuprofen, tramadol, elavil
What makes you feel better: Soma (if needed), tramadol
What makes you feel worse: Elavil
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: all sources, toothpaste, vitamins, water
Have you made dietary changes to avoid any other neutrotoxins: no splenda or nutrasweet
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:
12/14/2008
First Name: mary
Age: 56
Male or Female: female
City: o
State/Province: florida
Country: usa
How long have you lived there: 56
Where were you born: usa
Is this the first time you have taken our questionnaire:
If not, why are you returning:
Are you still working: no
What is Your Line of Work: n/a
How has Fibro affected your ability to work: yes
How has Fibro affected your life: very debilataing
What were your first symptoms: chills, fever,shakes,stiff neck, extreme fatique
Your age at onset of symptoms: 27
How fast was your rate of decline: immediatelt
What are your current symptoms: extreme fatique and pain generalized body aches and tenderness
Number of years since you developed symptoms of fibromyalgia: about 29 or 30
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: about 25
Describe the extent of your brain fog: unable to expree thoughts at times unable to recall familiar places or evente temporaily own age at times or own phone number
Estimate number of doctors you have seen for Fibro related symptoms: 20 +
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: + and -
What remedies or medications have you tried: you name them ,no doubt I HAVE TRIED THEM FROM COVENTIONAL TO HOLISTIC
What makes you feel better: nO ONE REGIME, SOMETIMES REST,HEAT ESPECIALLY WARM TO HOT SHOWERS,BATHS SPAS, MASSAGES , SOFT MUSICBIO FREEEZE, IBPOPPHEN SOMETIMES NOTHING
What makes you feel worse: COLD, SUDDEN DROP IN TEMPERTURES, STRESS, OVER EXERTION, LOUD NOISE, LACK OF SLEEP PRODUCTS CONTAINING RED DYE AND MSG, TOMATO SAUCE SOME FOODS CALAMARI
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: YES
Have you tried any thyroid specific treatments: YES
Your theories or comments: I BELIVE I HAVE HAD FIBRO SINCE i WAS BORN I HAD UNEXPLAINED PAIN AS A TODDLER SINCE MY MEMORY, I HAD SPINAL MENNINGITS AGE 2, DOUBLE PNEUMONIA AGE 3 AND VARIOUS AILMENTS THROUGHOUT CHILD HOOD, PLUSE MANY INJURIES AS WELL AS SUFFERED MANY ABUSES OF WHICH I HAVE NEVER REALLY ADRESSEDOR RAIRLY ACKNOWLEDGED,i HAVE INTERVIEWED MANY, MANY OTHERS WITH SIMILIAR HX OVER25- 30 YEARS
Are we missing any important questions: BRIEF SUMMARIES OF BACK GROUND tHERE IS SOO MUCH I HAVE LEARNED ABOUT THIS MYSTERIOUS ILLNESS I COULD START MY OWN WEB SITE
12/14/2008
First Name: n goldman
Age: 40
Male or Female: F
City: Belleview
State/Province: FL
Country: USA
How long have you lived there: 22 years
Where were you born: norfolk virginia
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: yes -- on disability
How has Fibro affected your life: in every way-- feel like I live on eggshells as not to affect it
What were your first symptoms: achy all over like the flu especially in shoulders and neck
Your age at onset of symptoms: 23
How fast was your rate of decline: about a year
What are your current symptoms: same but pain seems to move and have anxiety disorder now too
Number of years since you developed symptoms of fibromyalgia: 17
Do your symptoms include brain fog: sometimes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: not too bad-- really is more annoying than intruding
Estimate number of doctors you have seen for Fibro related symptoms: 13+
Do your doctors tend to focus on all your Fibro symptoms: never
Do your doctors treat your symptoms individually or collectively: they dont really treat at all
Describe your experience with doctors: I had one who really understood but she moved out of state. others dont do anything
What remedies or medications have you tried: muscle relaxants, anti depressants, beta blockers
What makes you feel better: I dont take anything now except beta blocker for heart skipping
What makes you feel worse: sitting with nothing on my back-- rigorous exercise--sitting too long, standing too long
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes-- filtered water, organic produce and meat
Have you tried any thyroid specific treatments: have hashimoto's but drs will not treat until it lands one way or another
Your theories or comments: I believe it is environmental. something we are exposed to. I try to keep my chin up but sometimes....
Are we missing any important questions: was there a trautmatic event or illness that preceded the fibro--you will be surprised at the answer. It is almost always yes
12/12/2008
First Name: phil
Age: 48
Male or Female: m
City: cape town
State/Province: cape
Country: South africa
How long have you lived there: 45 yrs
Where were you born: Kenya
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: y
What is Your Line of Work: business owner: manufacture aircraft and timber products
How has Fibro affected your ability to work: YES
How has Fibro affected your life: do not have the engery or brain power to be effective in the workplace
What were your first symptoms: alergies to painkillers and anti inflametories, IBS, Sinus conjestion then cron fatique (in that order)
Your age at onset of symptoms: 37
How fast was your rate of decline:
What are your current symptoms:
Number of years since you developed symptoms of fibromyalgia:
Do your symptoms include brain fog:
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms:
Do your doctors tend to focus on all your Fibro symptoms:
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors:
What remedies or medications have you tried:
What makes you feel better:
What makes you feel worse:
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: I am not sure I have FM but have been diagnosd this by imunologist. the symtoms seem to fit but there is not a huge amount of reference to alergies and or sinus and lung function problems. (which I have)
Are we missing any important questions: What drugs have you been on? No drugs but every other type of vitamin or natural product. Currently on trapaline. I am tired of this.
12/12/2008
First Name: Leanne
Age: 54
Male or Female: Female
City: Sedona
State/Province: AZ
Country: USA
How long have you lived there: 6 months
Where were you born: Iowa City, IA
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: An intuitive counselor
How has Fibro affected your ability to work: Almost, but not quite
How has Fibro affected your life: Can barely walk, have gained massive amounts of weight I can't seem to lose, dry eyes, muscular pain, arthritis in knees and shoulders, pain severe at at times.
What were your first symptoms: My knees, severely arthritic, especially the left knee.
Your age at onset of symptoms: 51
How fast was your rate of decline: Very quickly in the last couple of years.
What are your current symptoms: Dry Eyes, extreme stiffness in the morning and sometimes lasting all day, but it's variable.%uFFFD Somedays, I am less stiff than others. Pain in my shoulders, arms as well.
Number of years since you developed symptoms of fibromyalgia: Three
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: Somedays, I feel as if I can't quite pull it all together mentally. I feel very "slow" in my reactions to things.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: No, I have yet to find a doctor who believes what I am saying
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: I have almost given up on doctors. I had one particularly grueling experience with an orthopedic surgeon who was brutal and judgemental. From that day forward I was resolved that I would be very very selective about where I went and who would see me.
What remedies or medications have you tried: Diclonefec for the arthritis. It helps a little.
What makes you feel better: It helps to keep my diet as alkaline as possible. No sugar as well.
What makes you feel worse: Sugar, certain foods seem inflammatory.
Have you tried avoiding fluoride in your diet: Working on it.
If so, which sources of fluoride: Tap Water, pools where I used to swim, pesticides, and medications.
Have you made dietary changes to avoid any other neutrotoxins: Not sure
Have you tried any thyroid specific treatments: No, because my thyroid tests come back "normal"
Your theories or comments: I have been much encouraged by this site/ I feel flouride poisoning is where it is at for me. My temperature is so low- I have all the symptoms of a thyroid problem along with the muscular skeletal problems and I am horrified by the numbers of doctors who think this is in my "head."
Are we missing any important questions: No, and my sincere thanks for asking.
12/09/2008
First Name: Eileen
Age: 49
Male or Female: f
City: Cave Creek
State/Province: AZ
Country: USA
How long have you lived there: 30 years
Where were you born: Evanston, IL
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: optician
How has Fibro affected your ability to work: YES. I can't work more than 10 hours per week. My husband & I own our own business and I work usually 2 days aweek for 4-5 hours. If I worked for someone, i would of been fired years ago.
How has Fibro affected your life: I do about 2/3 less than I use to do. If i want to out out in the eveing, I have to rest all day so I'll "last" till 10 or 11pm. My daily routine is the first couple of hours I'm sore & slow. I'm good for 5-6 hours and than I'm down for a couple of hours and then I cook dinner, watch TV or read. I used to never watch TV, read or take naps.
What were your first symptoms: I don't know when my injury from the car accident ended and fybro started.
Your age at onset of symptoms: 38
How fast was your rate of decline: very
What are your current symptoms: pain, fatgue, (right now I'm the best I've ever been)
Number of years since you developed symptoms of fibromyalgia: 11 years 5 mo
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 11.5 ?
Describe the extent of your brain fog: it was the worst when I was on codoine. I would say something and couldn't remember what I just said. Now I only have brain fog when I push myself and my pain level becomes too high or when I'm getting or having a migraine.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: now yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: most doctors don't want to take the time to find out how they can help you because they don't have a clue on what to do. Others critcize or else are down right cruel to you to what? make you go away? to show you they are superior to you? to cover up their ignorance??? I had a doctor who really did listen and tried to help but she didn't beleive in fibromyagia,
What remedies or medications have you tried: tramadol,skelaxin,doxepin HCL,Imtrex, T4/T3 Thyroid, Progesterone,Estriol, Cortisol Natural SR, Melatonin, 5HTP, Tryptophan, Magnesium citra-mate & citrate, B Complex, Probiotics, zinc, Iron Citrate. Valcyte, Valtrex, Ketoconazone, Temazepam, Celebrex, Bupropion, Neuronton, Lyrcia, Amatriptoline, IBU, Hydrocodione, Oxycodoine. My lastest thing I am trying is avoid food allergies. I was tested about 3 weeks ago and should be feeling better soon (so I've been told! I'm hoping this will peel back another layer of this disease)
What makes you feel better: tramadol, skelaxin, magnesium citramate, melatonin, 5HTP, tryptopan, neuromusclar messages, IV therapies, stretch classes
What makes you feel worse: working, up for more than 4-6 hours at a time, standing for more than 20 min. I also tried Radio Frequency on my right SI joint and neck. The pain from the procedure lasted 6-8 weeks and by the time that healed, the orginal pain was back.I also had trigger point injections that only lasted 1-2 days. It didn't make it worse but it wasn't worth it either.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes (See comment about in what remedies have you tried)
Have you tried any thyroid specific treatments: yes, it made a HUGE difference. My thryoid tests were in the normal range but the T3 weren't getting into the cells and there's no test to confirm that so I am so grateful my doctor decieded to try T4/T3. My muscle pain dropped in half.
Your theories or comments: I think fybro is complicated by all the chemicals in our food and the fact that the soil is so depleted from minerals & nutrition. I believe whether it is trama, extreme phyisical or emothional stress or a viral attack, our bodies do not have the arsenal it needs to with stand these forces. Also, get all these chemical & MGS out of our food!
Are we missing any important questions: ALmost all the drugs I tried made things better for a short while but the side effect were too much for me. Minimal medicine, supplements,IV therpies, nutition and the impotance of stretching and message can never be over stated.
12/08/2008
First Name: Darlene
Age: 43
Male or Female: Female
City: Johnson City
State/Province: TN
Country: US
How long have you lived there: 43 years
Where were you born: Johnson City, TN
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: Had to go on disability last year.
How has Fibro affected your life: It has stolen my life. I'm no longer able to work. Due to the constant pain and fatigue, I rarely leave my home.
What were your first symptoms: Pain and weakness in my arms.
Your age at onset of symptoms: 35
How fast was your rate of decline: I went from being an active person to barely being able to get out of bed in just over a 5 year period.
What are your current symptoms: Constant widespread pain, chronic fatigue, IBS, migraine headaches
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: I was once very sharp mentally. Now I have periods of memory loss and confusion.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: I am yet to find a doctor that truly understands Fibro and CFS. I have a hard time communicating with doctors. It's hard for me to explain how much pain and discomfort I am actually dealing with on a day to day basis.
What remedies or medications have you tried: Tramadol, Hydrocodone, Oxycodone, magnesium, multi-vitamins, amitriptylin, cymbalta, celexa
What makes you feel better: Pain meds, heat, vitamins
What makes you feel worse: Cold weather, rain/snow, irregular sleep, over doing it (ie. housework)
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: I've been tested repeatedly, but test results did not indicate thyroid dysfunction.
Your theories or comments: I have no idea what caused my FMS. I can't pin point a specific injury or event; however, I have always had extreme allergies and was very prone to infections. I often think our environment is affecting people who may be more sensitive.
Are we missing any important questions:
12/08/2008
First Name: Kimberly
Age: 47
Male or Female: Female
City: Mineral
State/Province: VA
Country: USA
How long have you lived there: 2 yrs
Where were you born: Washington DC
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: retired
How has Fibro affected your ability to work: I have not allowed the fibro to stop me. I find by not moving, it makes the fibro worse, so I keep moving. Moving keeps the pain from getting to bad!!
How has Fibro affected your life: Fibro has changed the way I look at and do every thing in my life. From the way I arange things in my closet, to the clothes I wear to the way I order my Kitchen, when I do laundry and how I care for my horses and even how I drive my car. Every area of my life have been impacted by Fibro.
What were your first symptoms: I would have to say my first symptoms would be extreme fatigue, joint & muscle pain above and beyond what I was experiencing with my scoliosis, hands and feet. I felt like I had hit a brick wall!!
Your age at onset of symptoms: 35
How fast was your rate of decline: gradual
What are your current symptoms: Now that I've cleaned up my diet (eliminated ALL of my food allergies, no artificial sweeteners, no extra/additional sugar(s) and no caffeine my symptoms have improved. My hands, wrist, elbows and feet bother me at times with the fibro. With the scoliosis, its the constant pain of the back and hips that I deal with.
Number of years since you developed symptoms of fibromyalgia: 12
Do your symptoms include brain fog: Used to/not anymore
Number of years since you developed the brain fog: 12
Describe the extent of your brain fog: My brain fog was extreme. I would have a conversation with a family member befor going to bed and have no memory of the conversation the next morning. I couldn't read a book because I couldn't remember what I had read. I hated watching a movie because I couldn't remember it several hours later! I feel the brain fog was the direct result of my drinking and consuming products containing aspartame and other artificial sweeteners . Once I quite using these products my brain fog lifted. It took about three months for the fog to totally clear, but I am back to my old self as far as I am concerned. Those who have Fibro and are consuming aspartame or other artificial sweeteners should give strong consideration to eliminating these products from their diet.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: for the most part they want to help, but they just don't really know what to do with what they are hearing.
What remedies or medications have you tried: Plaquenil 2x per day for the Fibro pain Morphine 2x per day for the Scoliosis pain
What makes you feel better: Taking my medication as perscribed and keeping my diet clean and lots of HOT baths!
What makes you feel worse: SUGAR in my diet! Makes me feel sluggish.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: Water, drugs, pesticides. I avoid fluoride as much as I can.
Have you made dietary changes to avoid any other neutrotoxins: I try to avoid heavy metals as I am aluminum toxic and I am working on detoxing from that at this moment.
Have you tried any thyroid specific treatments: I am allergic to soy and do not eat soy anymore. I take supplements to support the thyroid, but I haven't done anything YET to address my sluggish thyroid. I am trying to see if my improved diet and supplements that I am taking will help my thyroid first. If not, then that will be one of the next things on my list of things I want to address.
Your theories or comments: I believe Fibro is more than just a pain issue. I believe diet, toxins, and ones emotional well being that ALL play a part in this condition. The more I research this condition, the more I realize it's all of these things intertwined. This is what makes it a challenge to deal with sometimes! Fibro doesn't have just one simple answer, it has a number of avenues that I think the medical community will find needs to be addressed before people are adequately diagnosed and treated properly. IMO
Are we missing any important questions:
12/08/2008
First Name: Bridget
Age: 42
Male or Female: female
City: Duncanville
State/Province: TX
Country: USA
How long have you lived there: 6 months
Where were you born: Califorina
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: There is days that I can do anything and then days I'm in bed all day.
How has Fibro affected your life: I'm not able to do the things I use to do. Very limited.
What were your first symptoms: Right after my son was born. A emergentcy c section
Your age at onset of symptoms: 33
How fast was your rate of decline:
What are your current symptoms: pain through out my body tender spots on my body, tired, can't remember things, Feet hurt, can't sleep and headache.
Number of years since you developed symptoms of fibromyalgia: 9yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: don't remember
Describe the extent of your brain fog: I can't remembersome of the past and some future things I need to do or have done.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no, just that I have it.
Do your doctors treat your symptoms individually or collectively: nothing they can do
Describe your experience with doctors:
What remedies or medications have you tried: some thing that causes me to feel drug up so I stop taking med
What makes you feel better:
What makes you feel worse:
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:
12/07/2008
First Name: Rebecca
Age: 55
Male or Female: female
City: Greenville
State/Province: sc
Country: usa
How long have you lived there: 18 yrs
Where were you born: ohio
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: admin assit, desk job
How has Fibro affected your ability to work: tire easily, if I work physically there is severe muscle pain later,
How has Fibro affected your life: Little to no sleep unless I take sleep aids, chronic, excessive pain, activities like hiking less likely,
What were your first symptoms: overall pain that didn't go away with rest, Dr. thought at first I had lupus
Your age at onset of symptoms: 40-42
How fast was your rate of decline: 2 years
What are your current symptoms: chronic pain, sleeplessness,
Number of years since you developed symptoms of fibromyalgia: 15
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: can't remember office procedures, names, conversations
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: want to treat with drugs only but not finding cause until I went to nutritionist who has helped a great deal, but the pain is still too much
What remedies or medications have you tried: Prozac, Cymbalta, Ibuprofen, Tylenol or Advil PM, Ambien,
What makes you feel better: Selenium, St. John's Wart, rest, raw veggies, salads, water
What makes you feel worse: Sodas, sugar, heavy foods
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: Brita filter water, natural toothpaste w/ no fluoride, no fluoride treatments at dentist
Have you made dietary changes to avoid any other neutrotoxins: like what?
Have you tried any thyroid specific treatments: yes, but I'm on 200mg of Levoxyl and my thyroid goes berserk when I try to lessen or stop taking meds
Your theories or comments: I know there is a way to beat this illness but I think I would need to stop my 'everyday' life and go to a clinic and focus totally on it to conquer it.
Are we missing any important questions: Perhaps in addressing the physical impact and emotional impact. It affects not only me but my family as well. Especially my husband, who is very fit and healthy. It drove us apart for a long time, until he became ill and almost died. It's only been the last few years that fibro has been officially recognized as something beyond 'it's all in your head' type of illness. I still get the response of putting me on an anti-depressant so I can deal with my pain. I don't want to cover up the pain, I want to get rid of it. I want to be healthy again. Happy, free, alive.
12/05/2008
First Name: Alice
Age: 37
Male or Female: female
City: Overland Park
State/Province: Kansas
Country: United States
How long have you lived there: 3 years
Where were you born: Washington, DC
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Environmental Specialist
How has Fibro affected your ability to work: Cannot Concentrate, Cannot function
How has Fibro affected your life: yes
What were your first symptoms: Pain in body after accident that would not go away
Your age at onset of symptoms: 31
How fast was your rate of decline: rapid
What are your current symptoms: Pain, migraines, short term memory loss, swelling of feet and hands
Number of years since you developed symptoms of fibromyalgia: 6
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: forgetting, losing train of thought, cannot concentrate
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: they all want to just treat what they specialize in, primary, muscle, nuerology, etc.
What remedies or medications have you tried: amitryptiline, topomax, paxil, ambien, restoril, lyrica, fioricet, lortab, reglan, nexium, donnatal, ibuprophen
What makes you feel better: rest and no stress
What makes you feel worse: stress, not enough rest, too much activity
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:
12/05/2008
First Name: Louis
Age: 67
Male or Female: male
City: palm beach gardens
State/Province: FL
Country: USA
How long have you lived there: 6 years
Where were you born: NJ
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: chiropractor/college professor
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: muscle pain/joint pain
Your age at onset of symptoms: only 3 months ago
How fast was your rate of decline: ?
What are your current symptoms: muscle/joint pain primarily poor sleep fatigue
Number of years since you developed symptoms of fibromyalgia: 3 months
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: no treatment
Describe your experience with doctors: they have no idea what to do
What remedies or medications have you tried: pain relievers only - some sleep aids
What makes you feel better: movement
What makes you feel worse: lying down- sleep
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: dental treatments, toothpaste
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: not certain I even have fibromyalgia, all tests are negative so that is all that is left.
Are we missing any important questions: Yes. I believed my muscle pains were a side effect of Lipitor, I stopped but the symptoms have not abated. I believe prescription drug side effects may be an important factor.
12/04/2008
First Name: margaret
Age: 51
Male or Female: female
City: indianapolis
State/Province: indiana
Country: marion
How long have you lived there: 51
Where were you born: indianapolis
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: was a cna
How has Fibro affected your ability to work: the pain affect every part of my body .hand and feet
How has Fibro affected your life: i am very depress cant go on outing with family. will have to end everything and go home.
What were your first symptoms: about a week later i could not move my lower extremes,the next day start having real bad pain in my arms and legs
Your age at onset of symptoms: 39
How fast was your rate of decline: very fast every day start having new pain in back thigh.
What are your current symptoms: back is inflame hurt when people touch me
Number of years since you developed symptoms of fibromyalgia: 11 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2006
Describe the extent of your brain fog: when i was working i was driving to work felt like my brain drain out of my head {ask my self where i was going} right before i got to work got my memories back, had to pull over and start to crying
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: they think that i am making it up expectually when i start to get new symptom
What remedies or medications have you tried: start out on vioxx help a lot then they took me off of it lyria cymbal kept having withdrawal from them antidepressant prazone.
What makes you feel better: nothing
What makes you feel worse: lots of noise cold air
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: n/a
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I wish these doctor stop acting like we are crazy.and help us to get are life back.[we did not ask for this.]it;s bad enough that we have to deal with.[i want my life back so i can get a job
Are we missing any important questions: no
12/02/2008
First Name: Mona
Age: 48
Male or Female: female
City: Dushore
State/Province: PA
Country: Sullivan
How long have you lived there: 27yrs.
Where were you born: Sayre
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work:
How has Fibro affected your ability to work: most the time, no
How has Fibro affected your life: yes
What were your first symptoms: after I was diagnosed with thyroid problems, the soreness and pain did not go away.
Your age at onset of symptoms: 46
How fast was your rate of decline: fast enough
What are your current symptoms: still some pain in my arms and back
Number of years since you developed symptoms of fibromyalgia: 7
Do your symptoms include brain fog: sometimes yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: sometimes I can't think clearly and forget what I was doing
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: Fibro and thyroid
Do your doctors treat your symptoms individually or collectively: collectively, many of my symptoms have improved with the thyroid treatment
Describe your experience with doctors: Fairly good, they do except and try to treat fibro.
What remedies or medications have you tried: No medications, some vitamins and Corvalen D-Ribose, and thyroid meds.
What makes you feel better: Staying warm and well rested.
What makes you feel worse: Low pressure systems, over doing to much strenuous work.
Have you tried avoiding fluoride in your diet: no, but I do use special toothpaste
If so, which sources of fluoride: No fluoride in our water
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: Yes, Meds
Your theories or comments: Many of my symptoms improved when my thyroid level began to return below 3, but still have times when the fibro kicks in.
Are we missing any important questions: No
12/01/2008
First Name: Pamela
Age: 50
Male or Female: Female
City: Buena Vista
State/Province: CO
Country: USA
How long have you lived there: 10 years
Where were you born: Canon City, CO USA
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: NO
What is Your Line of Work: Loan Officer
How has Fibro affected your ability to work: Had to quit my job in 2002 and received SSDI in 2004
How has Fibro affected your life: All areas of my life have been affected!!!!!!
What were your first symptoms: Bladder infections
Your age at onset of symptoms: 13
How fast was your rate of decline: 38 I was told it was only my harmones and I was in perimenipause.
What are your current symptoms: Pretty much my medical history.
Number of years since you developed symptoms of fibromyalgia: 6 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: The main reason I had to quit my job, not sure if it is because I am on so many narcotics because of pain, or because I am on 13 medications, I have a high IQ, and am frustrated daily, can not remember daily tasks, can not remember how to spell, need help with my bills, it is terrible
Estimate number of doctors you have seen for Fibro related symptoms: 16
Do your doctors tend to focus on all your Fibro symptoms: Somewhat, some on my heart, some on my neurogy, urology, I was recently hospitalized because my mental state was fuzzy, dont remember having a spinal tap
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I think I have found a doctor now that understands me
What remedies or medications have you tried: I don't remember all of them, currently I take Topamax, a seizure drug that works for pain
What makes you feel better: Lyrica works for pain, but has side affects such as weight gain and water gain
What makes you feel worse: The antidepressents are the worst.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: Toothpaste, water
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments: only drugs
Your theories or comments: I am willing to try a natural approach, trouble is getting off the drugs
Are we missing any important questions:
12/01/2008
First Name: Rick
Age: 54
Male or Female: Male
City: Newport News
State/Province: VA
Country: USA
How long have you lived there: 20 years
Where were you born: western New York state
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: I WAS a physicist/engineer
How has Fibro affected your ability to work: I can no longer work
How has Fibro affected your life: It has limited my useful, functional time to 2-4 hours per day.
What were your first symptoms: joint swelling/rash/rheumatoid arthritis with negative rheumatoid factor (but positive anti-ccp)
Your age at onset of symptoms: 49 when it turned REALLY bad
How fast was your rate of decline: rapid
What are your current symptoms: ALL the common fibromyalgia symptoms; fatigue, brain fog, IBS, memory loss, ALL of the tender points, joint/muscle pain, etc..
Number of years since you developed symptoms of fibromyalgia: In retrospect, 15-20 or more.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: On a scale of 1 to 10 with 10 being the worst. In the mornings, 3, by bed time, 9.
Estimate number of doctors you have seen for Fibro related symptoms: 15
Do your doctors tend to focus on all your Fibro symptoms: No. They seem to be stuck on just one or two EXCEPT for one doctor who has been truly helpful (but unfortunately is no longer practicing BECAUSE of the very qualities which made him useful.
Do your doctors treat your symptoms individually or collectively: MOSTLY individually
Describe your experience with doctors: I don't want to use that kind of language here.
What remedies or medications have you tried: a variety of antidepressants, antipsychotics, antianxiety meds, thyroid meds, painkillers
What makes you feel better: nortriptylene (Pamelor), methadone, suboxone, hydrocodone, alcohol, exercise
What makes you feel worse: eating, sitting in one place or position too long
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: armour thyroid
Your theories or comments: There is a genetic component to fibromyalgia, which is also related to alcoholism. Fibromyalgia is also, at least in part, a malfunction of the thalmus; POSSIBLY due to trauma.
Are we missing any important questions: Many.
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