Re:/symptoms? diagnosis fibro -- fatigue connection?

[Guest guest]

The Fatigued to Fantastic book is really pretty good. A lot of what it

had to say was " hey! thats me! " . I havn't read the Pain free 1-2-3,

but I have gone to see Dr. T. My experiance with him was so-so but

most of the blah parts were because me and my father were some of his

last patients. He's one of the head researchers for the Fibro and

Fatigue Centers now. FFC mostly follows the protocol outlined in the

Fatigued to Fantastic book, and probably the pain free 123 book too.

Amos

>

> Barb,

>

> Many people who have fibro also have CFS. The book, " From Fatigued

to Fantastic " concentrates more on the CFS although the treatment plan

is similiar for both FMS and CFS. The author, Dr. Teitelbaum, wrote

another book, " Pain Free 1-2-3 " that focuses more on FMS and chronic

pain. I recommend both books since CFS and FMS are closely related.

Hope this helps.....

>

> ~Jill

>

>

[Guest guest]

Amos,

When was it that you saw Dr. T? How long did you see him? Did you go on and

follow his protocol? If so, how much did it help? I've been going to the Fibro

& Fatigue Center for 4 months. I am so desperate to get well and have spent

thousands there (that I don't have). I HAVE to go back to work and I'm totally

disabled, so this was my last shot. I'm really disappointed in my results. The

only thing that I think could be effecting my recovery is I just had breast

implants removed which has caused many women to get fibro. So, maybe the toxins

and mold that has been found on implants after removing them is causing me to be

sicker. I did ask to go on Provigil and I have to say I've had amazing results

with it!!!! My fatigue is as bad as my horrible pain. I'm amazed at how much I

can do on Provigil and it also helps me push thru my pain a little more. Maybe

some of you haven't heard of it. You should definitely ask your Dr. if you can

try it! I had never heard of it until I heard a little thing on the news that

Brittney Spears was taking it and it helped people stay wake, so I googled it.

Besides my pain meds, it's worked the best for me. Lyrica, Cymbalta, muscle

relaxants, etc don't do anything for me..............

Jill

[Guest guest]

Its been about two years since I started to see Dr. T, it was hard to

get a hold of him after about six months because he moved from

polis to Hawaii and commuted between the two for several months.

One thing that was good about his office was that you had one person

assigned to you, to answer questions, explain treatment/pill protocol,

and e-mail questions too. My father and myself first visit we had a

nurse who did all that, but now that person seems to spend most of her

time training other nurses at other centers. I've been on his protocol

and the Centers for about 2 years now, maybe a little longer. Right

now I'm doing pretty good I work with my fatehr on the family farm.

Before your jaw drops in ammazment and pictures of me wrestling cows

to the ground, and driving large majestic green equipment around, let

me explain what I/We do. We have an entertainment farm, we grow pick

your own strawberries and have a harvest fest with a corn maze, a

pumpkin patch, large play area, petting zoo, pig racing, school tours,

the whole shooting match. I've only started working more then part

time since January. I'm basicly the office manager, I answer phones,

e-mail, am in charge of HR stuff, desk jockey stuff. I do train the

racing pigs in the fall, and show them as well, but nothing that

requires heavy lifting.

Heavy metals and probably organophosphates (farm type chemicals)

are probably whats causing my ickyness. I didn't really see much

results until I took a three month chelation pill. i was much improved

at the end of the three months. I haven't seen Dr. Steve at FFC Philly

in maybe 6 months and me and dad are supposed to set an appointment

for this spring some time, after strawberry season in May. I've had

samples of provogil but my insurance won't cover the prescription

unless we did a really expensive sleep study. I was very careful with

my samples, and hoarded them for special events until I ran out. I've

tried midodrine but 5mcg is just too much. I do ok with half a 5mcg

pill but the dang things don't break in half. You end up with half a

pill and some dust. What pain pillz do you find are effective? Take

anything for sleep? We really should do some polls to see what people

are taking, it could useful and at the least very interesting. So for

as how much the FFC/Dr.T protocol has helped, I'd say I was at a 7-8

on fatigue, and a 7 on pain before I started (scale of 1-10) and

sleeping 12 hours of worthless sleep a night. Now I'm a 3-4 on

fatigue, 3 on pain, and as for sleep, it depends on when I get to bed.

The more sleep I get before 12 the better. go to sleep at 9 wake up at

6 and feel refreshed. Go to sleep at 12 wake up a 11:30 feel not so

good. i still have bad days but for the most part its pretty good.

Hope that answers your questions and I haven't bored anyone to tears.

Farmer Amos

Director of Fun