Re: Anne

[Guest guest]

Oh Gosh, you said it.... my hair so is thin!! It falls out in the handfuls

everytime I wash it. Seroiusly, I cannot brush my hair wet, because it just

makes it come out with the lightest touch. I feel like Iam on Chemo. I just wish

it would effect my hair on the my legs! LOL. I think its all falling off my

head, and falling downwards! LOL. Anyway..... thats the truth though.

Thanks for the more info Anne! Hey, can I ask.... How old are you about? lol.

How long have you had Fibro? I am sure you told me your story, I am just very

forgetful.... Sorry.

Love you Anne!

--

****************************************

Blessings from ~a

Proud Mommy ~ to ~

Nickolas 10 (2/4/98)

Brenden 8 (1/12/00)

http://www.simpliessential.com

****************************************

--------- Heres my story

> >

> >

> >

> > I was finally diagnosed with fibro over 2 years ago. I have severe

> > fatigue most of the time and when I dont I think " wow, how could I

> > have felt that bad just yesterday? " This would also include the

> > fibrofog. My therapist doesnt seem to understand that when I am so

> > tired, I cant figure out the littlist things to do. He said write a

> > list. Its not that easy. I feel like some thing is clouding my

> > thought to not allow me to do these easy tasks. I feel so cold all

> > the time. The all over pain is so bad I can only describe it as metal

> > pipe cleaners cleaning my bones. Or sometimes feeling like there is

> > broken glass on me and if I am touched it kills. I used to work 2

> > waitress jobs and take care of nephew and the house and still have

> > enough energy to go out. Now I have 3 wonderful kids and a nice

> > husband. Whats worse. My husband sees me as depressed. He says I

> > would stay in bed all day if I could. And that I have always been

> > like this. He so doesnt get it. He also says I can lose weight if I

> > try. That one is funny because I have done 800 cal diets with diet

> > pills and all the shakes and bars and nothing. just wasted time and

> > money. One of my first symptoms besides the fatigue was the weight

> > gain. I gained 20lbs in 2 weeks and I was dieting and working out.

> > but I was so tired after working out I would crash. I have also drove

> > 50 miles a fibroandfatigue center for over a year. I spent alot of

> > money because insurance doesnt cover it. Whats going on with me. It

> > has to be something much worse than they are saying. I dont want to

> > be on pain pills or antidepressants. I cant gain anymore weight or my

> > husband will leave. I cannot lose the weight I had initially gained.

> > I have tried weightwatchers. atkins. lemonade fast. cant do

> > jennycraig. too much soy in products. I found out I had a sensitivity

> > to soy. so now what? My husband wants to leave because im too fat for

> > him. because I am useless and lazy. I can barely get by with enough

> > energy to take and pick up my kids from school and shout homework

> > time. i can barely clean up during the day on bad days much less lift

> > my arms from pain.. good days alot gets done. I dont like to go

> > places. I feel forced because I dont want my kids to suffer. I really

> > dont like to drive. I sometimes hear myself snoring while I am

> > driving. that cant be good. Sleep dr called it a hyper state of

> > sleep. but its a doze. good thing I snore or i wouldnt be able to

> > wake myself up. I feel like my life as I knew it has ended. I can

> > understand why people with fibro get depressed. i recognize it.

> > Nobody understands. Nobody wants to hear whining. nobody cares. We

> > should just get through it. Push yourself my husband says. Well I

> > cant. I get alot of advise. vitamins, foods to eat and stay away from

> > but I havent found any thing that really has worked for me. I was

> > treated for candida and did the candida diet. and I was treated for

> > my Hypothyroid. t3t4 and hormones. what else is left. I cannot afford

> > the 2month stay in lake tahoe for the Whitcomb protocal so I will

> > never find out if it will work for $10000.00 no guarentee. just

> > another cure. I just want this nightmare to end. I wanted things to

> > be much different at this age. I am only 37. I have alot to do. alot

> > to show my kids. I want to be me again. Is it possible they are

> > still missing something. can I get an mri to find out my real problem

> > a pill that doesnt make me gain more weight. or sleep more. My friend

> > came to visit from utah a few weeks ago and I couldnt see her I was

> > so tired and wiped out. I think I made her feel bad but she has fibro

> > and should understand. She is doing much better now she said. I have

> > called her chiropractor.

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi a and Anne. I am very interested in how to get my hair to grow again.

It's so thin now.. Falls out all the time. I hate having to go out as I feel

like a balding woman and you can see big patches of my scalp.. so embarrassing.

I've tried a few treatments that promised to restore it like a special series of

Kerosene of all things.. Didn't work. A shampoo also that doesn't help. I have

two wigs but they look so much like wigs I have never worn them out. I'd curl

up and die but don't really want to 'go' yet.

If you do know an easy treatment to restore hair.. please let me know. I went

through all my emails but can't find that one.

Thanks So much,

Oh Gosh, you said it.... my hair so is thin!! It falls out in the handfuls

everytime I wash it. Seroiusly, I cannot brush my hair wet, because it just

makes it come out with the lightest touch. I feel like Iam on Chemo. I just wish

it would effect my hair on the my legs! LOL. I think its all falling off my

head, and falling downwards! LOL. Anyway..... thats the truth though.

Thanks for the more info Anne! Hey, can I ask.... How old are you about? lol.

How long have you had Fibro? I am sure you told me your story, I am just very

forgetful.... Sorry.

Love you Anne!

[Guest guest]

Hello . Falling hair could mean thyroid. has yours been checked. I read

many books that say when women get started on treatment, the hair grows back.

Ask your dr. assuming you have one. Also, Mane and Tail with a horse on the

front, can make your hair grow faster. has something to do with the minerals of

horse hair. Just a few Ideas. If not Ive always thought some hats are nice

Good luck.

Jules

Re: Anne

Hi a and Anne. I am very interested in how to get my hair to grow again.

It's so thin now.. Falls out all the time. I hate having to go out as I feel

like a balding woman and you can see big patches of my scalp.. so embarrassing.

I've tried a few treatments that promised to restore it like a special series of

Kerosene of all things.. Didn't work. A shampoo also that doesn't help. I have

two wigs but they look so much like wigs I have never worn them out. I'd curl up

and die but don't really want to 'go' yet.

If you do know an easy treatment to restore hair.. please let me know. I went

through all my emails but can't find that one.

Thanks So much,

Oh Gosh, you said it.... my hair so is thin!! It falls out in the handfuls

everytime I wash it. Seroiusly, I cannot brush my hair wet, because it just

makes it come out with the lightest touch. I feel like Iam on Chemo. I just wish

it would effect my hair on the my legs! LOL. I think its all falling off my

head, and falling downwards! LOL. Anyway..... thats the truth though.

Thanks for the more info Anne! Hey, can I ask.... How old are you about? lol.

How long have you had Fibro? I am sure you told me your story, I am just very

forgetful... . Sorry.

Love you Anne!

[Guest guest]

Turned 55 in November.

April, 2000 was hit with full-blown Extremely Severe FMS after taking Celebrex

for only 4 days.

Was prescribed by a Physiatrist (motion) doc to go to physical therapy. Just had

a stiff back. No pain.

It ruined me. 6 months through 3 specialists and tons of tests. No answers.

I still have Fibro just as bad as then, just don't have to experience the

symptoms as long as I stay on

treatment. The world says it can't be done, but we've been doing it for over 7

years. I'm in a kayak and

canoe club that has over 600 members; an impossible thought for me those 6

months in 2000 when we

were packing my arms in ice from the pain of FMS and unable to find any answers.

My story is long and weird, but it had to have all happened for us to figure out

this mess when it happened.

Hubby says it's been like living in a made-for-tv-movie and having to do all our

own stunts.

www.FibroFix.com/Testimony.html is about the change in my faith a year and half

later, but it's also a good

overview of what happened from early on. May help you understand why we do this

for free, at our own expense,

and have from Day One.

I came to FMS the Viral route, primarily. Asian Flu in high school, mono my

freshman year of college, then again,

then Epstein Barr, in hospital with mono (?) and flu in 1978, then Chronic

Fatigue. Brain damage from simple knee

surgery after I sold my bicycle shop to return to college. Blood clots to both

lungs caused double pneumonia, with

anoxia - not enough O2 to my brain. Twenty days, then hubby dumped those docs

and called his Internal Med doc

who saved my life.

Years and years of catching bronchitis every winter. Catching every cold and flu

that came by.

We didn't know that what I had back then was EP and CF until after the FMS. I

also have the Serotonin Cluster of

Symptoms; it came with the FMS. Depression, anxiety / panic, obsessive /

compulsive, and procrastination. Many

Fibros have that, some don't.

Some of these terms originated on our site, so you won't hear them other places

unless someone is quoting it. Will

be a long time before they are common place, as hard as it is to get the word

out now. But 7 years ago we were

fighting just as hard to tell people what all the symptoms of FMS are. They

threw rocks at us then for that. But now

most people can get a diagnosis without it taking 10 years and a lot of

inconclusive tests.

Well, I'm working on the packaging for a marketing project (a trademarked

T-shirt for students and alums of a local university)

at home tonight, so need to get back to it. My cell phone is always on and I

am glad to dial from this end so you don't get charged,

for anyone who needs or wants that. I answer all email and calls individually

and personally.

Thanks for being open to the truth. This board is a welcome island of sanity

and open minds in a sea of deliberate misinformation,

personal character attacks, and commercial greed about our illness.

We are blessed with incredible friends in our real world, and it's a blessing to

meet new friends on line.

In HIS grip,

Anne Hillebrand

" Until they all get help, we go broke, or we drop dead trying. " W.D.H.

www.FibroFix.com

Heres my story

> >

> >

> >

> > I was finally diagnosed with fibro over 2 years ago. I have severe

> > fatigue most of the time and when I dont I think " wow, how could I

> > have felt that bad just yesterday? " This would also include the

> > fibrofog. My therapist doesnt seem to understand that when I am so

> > tired, I cant figure out the littlist things to do. He said write a

> > list. Its not that easy. I feel like some thing is clouding my

> > thought to not allow me to do these easy tasks. I feel so cold all

> > the time. The all over pain is so bad I can only describe it as metal

> > pipe cleaners cleaning my bones. Or sometimes feeling like there is

> > broken glass on me and if I am touched it kills. I used to work 2

> > waitress jobs and take care of nephew and the house and still have

> > enough energy to go out. Now I have 3 wonderful kids and a nice

> > husband. Whats worse. My husband sees me as depressed. He says I

> > would stay in bed all day if I could. And that I have always been

> > like this. He so doesnt get it. He also says I can lose weight if I

> > try. That one is funny because I have done 800 cal diets with diet

> > pills and all the shakes and bars and nothing. just wasted time and

> > money. One of my first symptoms besides the fatigue was the weight

> > gain. I gained 20lbs in 2 weeks and I was dieting and working out.

> > but I was so tired after working out I would crash. I have also drove

> > 50 miles a fibroandfatigue center for over a year. I spent alot of

> > money because insurance doesnt cover it. Whats going on with me. It

> > has to be something much worse than they are saying. I dont want to

> > be on pain pills or antidepressants. I cant gain anymore weight or my

> > husband will leave. I cannot lose the weight I had initially gained.

> > I have tried weightwatchers. atkins. lemonade fast. cant do

> > jennycraig. too much soy in products. I found out I had a sensitivity

> > to soy. so now what? My husband wants to leave because im too fat for

> > him. because I am useless and lazy. I can barely get by with enough

> > energy to take and pick up my kids from school and shout homework

> > time. i can barely clean up during the day on bad days much less lift

> > my arms from pain.. good days alot gets done. I dont like to go

> > places. I feel forced because I dont want my kids to suffer. I really

> > dont like to drive. I sometimes hear myself snoring while I am

> > driving. that cant be good. Sleep dr called it a hyper state of

> > sleep. but its a doze. good thing I snore or i wouldnt be able to

> > wake myself up. I feel like my life as I knew it has ended. I can

> > understand why people with fibro get depressed. i recognize it.

> > Nobody understands. Nobody wants to hear whining. nobody cares. We

> > should just get through it. Push yourself my husband says. Well I

> > cant. I get alot of advise. vitamins, foods to eat and stay away from

> > but I havent found any thing that really has worked for me. I was

> > treated for candida and did the candida diet. and I was treated for

> > my Hypothyroid. t3t4 and hormones. what else is left. I cannot afford

> > the 2month stay in lake tahoe for the Whitcomb protocal so I will

> > never find out if it will work for $10000.00 no guarentee. just

> > another cure. I just want this nightmare to end. I wanted things to

> > be much different at this age. I am only 37. I have alot to do. alot

> > to show my kids. I want to be me again. Is it possible they are

> > still missing something. can I get an mri to find out my real problem

> > a pill that doesnt make me gain more weight. or sleep more. My friend

> > came to visit from utah a few weeks ago and I couldnt see her I was

> > so tired and wiped out. I think I made her feel bad but she has fibro

> > and should understand. She is doing much better now she said. I have

> > called her chiropractor.

> >

> >

> >

> >

> >

> >

[Guest guest]

Not a separate thing. When all is working, it starts to grow

immediately. Just starved.

Annie

Re: Anne

Hi a and Anne. I am very interested in how to get my hair to grow again.

It's so thin now.. Falls out all the time. I hate having to go out as I feel

like a balding woman and you can see big patches of my scalp.. so embarrassing.

I've tried a few treatments that promised to restore it like a special series of

Kerosene of all things.. Didn't work. A shampoo also that doesn't help. I have

two wigs but they look so much like wigs I have never worn them out. I'd curl up

and die but don't really want to 'go' yet.

If you do know an easy treatment to restore hair.. please let me know. I went

through all my emails but can't find that one.

Thanks So much,

Oh Gosh, you said it.... my hair so is thin!! It falls out in the handfuls

everytime I wash it. Seroiusly, I cannot brush my hair wet, because it just

makes it come out with the lightest touch. I feel like Iam on Chemo. I just wish

it would effect my hair on the my legs! LOL. I think its all falling off my

head, and falling downwards! LOL. Anyway..... thats the truth though.

Thanks for the more info Anne! Hey, can I ask.... How old are you about? lol.

How long have you had Fibro? I am sure you told me your story, I am just very

forgetful.... Sorry.

Love you Anne!

[Guest guest]

I'll share with you how long etc I've had FMS Anne. I was 25 (64 now) when

after coming back from a trip to Fiji (maybe I caught something there I often

thought.) Within two weeks of being back home I was so tired I didn't want to

get out of bed. My late husband used to make me drive the two children to

school and back every day and that was a 12 mile trip so 48 miles per day for

that. I could hardly cope with just that. Then I found I was sleeping the

rest of the day on the couch. I also had IBS and didn't know why. It has

gotten worse over the years. I do remember having an awful bout of it that

lasted for about three months but couldn't get to a doctor as we had no car and

the surgery was a mile or two away in the town we were living in at the time.

We had no phone either and my husband walked to work which was just over the way

from our house. I felt so weak after that. Couldn't do much at all and fatigued

all the time. A few years later in another town a local Dr diagnosed me with

" Spastic colon " which I later was told is the old fashioned term for irritable

bowel. Some years later with this all still going on I noticed aches and pains

when I did too much using my muscles. This just got worse and worse over the

years till I had to start taking painkillers. At the moment I'm on Oxycontin

10mgs a day, Codeine Forte, about 4-6 capsules a day and sometimes tramadol too.

I also take a blood pressure tablet Verapamil. depends how I am feeling. I am

not depressed really and have faith and peace in the Lord helping me. I pray a

lot for others and I think that helps me take the focus off my own problems. I

did go to a physiotherapist in the next town here and she was very good as she

knew all about the 'tender points'. I am going to see if I can get another

appointment to see her. It doesn't cost as much if I go through a local Dr with

a letter of recommendation. Massage really helps I've found. I used to be able

to do a bit myself but can't any longer unless it's fairly localised.. Like I

can't reach my back now as I'm so stiff.

I also have developed tendonitis in the palms of my hands in the last 12 months.

Never had that before and it's made my life difficult to do some tasks with my

hands like chopping vegetables. Very painful. My local Dr (a lovely Asian lady)

does acupuncture on me and that does help after at least three treatments, I

noticed there was much less pain in the tendons and also muscular. I have read

all about Lyrica that others on this group have posted. It sounds very

promising. Apart from the hair problem I am able to cope because my son helps

me a lot. He does most of the heavy work and I just do the cooking and laundry.

He also drives me wherever I have to go as my car doesn't have power steering

and is hard for me now to use. I want to get another car really. Anyway I'm 64

now and need to try and get over this and have a bit of a life back. I will

make a new appointment and see if I can get some Lyrica. I might have to say

that someone recommended it to me as the Drs here don't like being told what to

prescribe. I won't accept anything else. Is it ok to still take the codeine

while I'm taking Lyrica? I don't want to just drop that because when I get

diarrhea I take it to stop the 'trots' with the IBS.

I can't remember what else I was going to ask you. I have read through your

wonderful website a couple of years back and will go through it again.

Thanks heaps to everyone on here. Thank You Anne!!

[Guest guest]

If you want to phone, I'll give you the quick version and ask you

a couple of questions that will make it even easier.

Fortunately, all the symptoms are from the same cause and we

can relieve it.

Annie

Re: Anne

I'll share with you how long etc I've had FMS Anne. I was 25 (64 now) when

after coming back from a trip to Fiji (maybe I caught something there I often

thought.) Within two weeks of being back home I was so tired I didn't want to

get out of bed. My late husband used to make me drive the two children to school

and back every day and that was a 12 mile trip so 48 miles per day for that. I

could hardly cope with just that. Then I found I was sleeping the rest of the

day on the couch. I also had IBS and didn't know why. It has gotten worse over

the years. I do remember having an awful bout of it that lasted for about three

months but couldn't get to a doctor as we had no car and the surgery was a mile

or two away in the town we were living in at the time. We had no phone either

and my husband walked to work which was just over the way from our house. I felt

so weak after that. Couldn't do much at all and fatigued all the time. A few

years later in another town a local Dr diagnosed me with " Spastic colon " which I

later was told is the old fashioned term for irritable bowel. Some years later

with this all still going on I noticed aches and pains when I did too much using

my muscles. This just got worse and worse over the years till I had to start

taking painkillers. At the moment I'm on Oxycontin 10mgs a day, Codeine Forte,

about 4-6 capsules a day and sometimes tramadol too. I also take a blood

pressure tablet Verapamil. depends how I am feeling. I am not depressed really

and have faith and peace in the Lord helping me. I pray a lot for others and I

think that helps me take the focus off my own problems. I did go to a

physiotherapist in the next town here and she was very good as she knew all

about the 'tender points'. I am going to see if I can get another appointment to

see her. It doesn't cost as much if I go through a local Dr with a letter of

recommendation. Massage really helps I've found. I used to be able to do a bit

myself but can't any longer unless it's fairly localised.. Like I can't reach my

back now as I'm so stiff.

I also have developed tendonitis in the palms of my hands in the last 12

months. Never had that before and it's made my life difficult to do some tasks

with my hands like chopping vegetables. Very painful. My local Dr (a lovely

Asian lady) does acupuncture on me and that does help after at least three

treatments, I noticed there was much less pain in the tendons and also muscular.

I have read all about Lyrica that others on this group have posted. It sounds

very promising. Apart from the hair problem I am able to cope because my son

helps me a lot. He does most of the heavy work and I just do the cooking and

laundry. He also drives me wherever I have to go as my car doesn't have power

steering and is hard for me now to use. I want to get another car really. Anyway

I'm 64 now and need to try and get over this and have a bit of a life back. I

will make a new appointment and see if I can get some Lyrica. I might have to

say that someone recommended it to me as the Drs here don't like being told what

to prescribe. I won't accept anything else. Is it ok to still take the codeine

while I'm taking Lyrica? I don't want to just drop that because when I get

diarrhea I take it to stop the 'trots' with the IBS.

I can't remember what else I was going to ask you. I have read through your

wonderful website a couple of years back and will go through it again.

Thanks heaps to everyone on here. Thank You Anne!!

[Guest guest]

Thanks Annie I will phone you but I'm in Australia. That's no problem I just

need to know your area code etc. I can ask our phone company anyway how to do

that and also what time (your time) to call and I can look that up on the world

clock on this computer. Ok It's now 3.40am here and I'm off to bed while I have

the ability to sleep. Very hot weather here for the past 4 weeks.

Thanks Heaps for all your help everyone in this group. Sounds like you all

have a path to follow and find the best way for yourselves. I like that.

If you want to phone, I'll give you the quick version and ask you

a couple of questions that will make it even easier.

Fortunately, all the symptoms are from the same cause and we

can relieve it.

Annie

[Guest guest]

Better just email if you are in AU. (smile)

Annie

Re: Anne

Thanks Annie I will phone you but I'm in Australia. That's no problem I just

need to know your area code etc. I can ask our phone company anyway how to do

that and also what time (your time) to call and I can look that up on the world

clock on this computer. Ok It's now 3.40am here and I'm off to bed while I have

the ability to sleep. Very hot weather here for the past 4 weeks.

Thanks Heaps for all your help everyone in this group. Sounds like you all

have a path to follow and find the best way for yourselves. I like that.

If you want to phone, I'll give you the quick version and ask you

a couple of questions that will make it even easier.

Fortunately, all the symptoms are from the same cause and we

can relieve it.

Annie