Welcome !

[Guest guest]

I'm Rhonda, 50, live in Toledo, Ohio and have Cfs/Fibro. I'm glad you have

become a member!

gentle hugs,

Rhonda

[Guest guest]

Hi Rhonda,

I am new here too although I have posted a couple of times, I

primarily read when my eyes allow me too. I have had my eye exams by

the best and have been informed there isn't much to report outside

of normal changes in RX. Funny that my vision gets so bad at times I

cannot even watch tv much less read. I attribute this to my

condition.

My name is and I am 48 and live in Archbold, Ohio. (halfway

between Toledo and Indiana/north of defiance) I am wondering if you

have been successful in finding Doctors or a Doctor informed enough

on this condition to be able to help you. Have you by chance found

any groups supporting those with this disease?

After being hit with this quite literally overnight for two years. I

was diagnosed by a indocrinologist who after informing me sent me

back to my primary doctor. I am virtually going without any

treatment presently. I had asked ME/CFIDS of America to make sure my

Primary Doctor recieve all the information and update relative to

this condition (they wrote me to tell me my doctor had been

recieving the information and when I inquired of my doctor as to

what if anything he has learned that might help in treating me..he

replied that he had not read anything and that with all the group

recieves in magazines and information from various groups he rarely

if ever got them from his staff! I just broke down crying at that

point feeling lost as to where to turn. He is sending me to a

psychiatric doctor for evaluation. I have been told by the group I

am being referred to that they understand and are educated as best

as is available to this condition and have other patients that have

it also so I'm hopeful.

As I mentioned before, I feel like I wear my heart on my sleeves

most of the time and have never before been the type of person that

is easily brought to tears unless the one time when I was

hospitalised and ran very high temperatures in my 8th month of

pregnancy. I have not heard anyone else mention this " emotional

aspect " of this condition. It might be helpful if anyone would

respond to that question. So much has changed in my life quite

literally over night. I am in bed most of the time. I mixed spices

and other ingredients with ground chuck to make a meatloaf and when

I was done, It exhausted me to the extent that I was literally slept

for 6 hours!

Previously to all this hitting me, I had been suffering for many

years with degenerative bone disease and waiting for changes to get

to a point where Doctors could actually do anything. I was rear

ended at access of 55mph that forced me into shoulder surgery and

then within a few months I had caged fusion of lumbar disc that blew

out and my right hip down to foot was numb.

I have lived with alot in my life and have always been able to make

the best of it. I was still able to walk my doggie, enjoy some

limited gardening and pretty much functioned as a normal person. I

can not make any plans even a day ahead as I know anything can

happen and I quite literally do not know if I can follow through on

anything until I am faced with it and try. (then 9 times out of 10,

I've over done it)

I'm sorry for writing a novel here but wanted to give you some basic

information in support for asking if you have been able to find

anyone knowlegable enough to treat you. What type of Doctor do you

find most helpful in treating you?

God Bless,

/Dutchie

> I'm Rhonda, 50, live in Toledo, Ohio and have Cfs/Fibro. I'm glad

you have

> become a member!

>

> gentle hugs,

>

> Rhonda

>

[Guest guest]

,

I completely relate to the emotional roller coaster ride this disease brings

on. I have always been an optimistic, high energy, organized, active person

until CFIDS stopped me in my tracks. I feel like I walked into a brick wall. My

entire life and lifestyle have changed. I've always been a planner, family

gatherings, camping, party with friends.That has all changed -drastically and

quite honestly - I miss it Terribly ! I miss my kids events at school, church

organizations I've been involved with for years, parties, concerts I've already

paid for, vacations, now my job, you name it. I'm sure you have a similar

list..........Why wouldn't we be emotional? We have the right - look at what

we're dealing with: Not only the disease itself and all the complications that

come with it, but we are dealing with the ignorance of both doctors and the

average Joe, who either a) thinks we're full of it or can't do a thing to

help us.

Although I've never been a big crier myself, like you said, I have my days

where I just break down, even at the most inopportune moments, when I THINK I

have it all together.... It is too much to bear. Thank God I am optimistic or I

don't think I could get thru most days.

I wish I had great words of wisdom for you, but sometimes it helps knowing

someone is in the same boat.

Hang in there!

wrote:

Hi Rhonda,

I am new here too although I have posted a couple of times, I

primarily read when my eyes allow me too. I have had my eye exams by

the best and have been informed there isn't much to report outside

of normal changes in RX. Funny that my vision gets so bad at times I

cannot even watch tv much less read. I attribute this to my

condition.