Re: Joe Marshall

[Guest guest]

Joe, I know to well the pain and the unknowns that you are facing right now. I

was just diagnosed in October 2007 so it's all still new to me as well. I have

been unable to work since June of last year due to the Fibromyalgia and several

herniated disc from my neck down to my behind. I wake up with " spasms " in my

ribs during the night, have cramps in my legs as well as sweats that seem to

come out from no where. You face days of confusion, or what we call " fibro fog "

and that scares you to death. I have episodes while trying to grocery shop with

my husband where I start to sweat, get confused and become very weak. I also

have nights, like tonight, that I am unable to sleep and when I do it's not a

restfull sleep.

When I have a " flare " like I am having now, it started Saturday afternoon and

they usually last about 3 days. My Neurologist has me on Lyricia, which helps

with the " flares " and other symptoms. While this is no miracle pill it does help

control it, some.

I am 43 years old and I have 2 grown kids and a 6 month old grand daughter. My

kids know I have this illness and they know I am not going to die from it, but

they don't fully understand why I don't get out and do the things I use to do. I

use to ride horses, loved to work in the yard and just be on the go. I too was

trying to educate myself and had just finished my Associated Degree in General

Studies when I became ill and have not been able to go forward. I plan too, I

just don't have the energy to do so right now. My goal in life, which I decided

late in life, was to teach at the Junior High School level. I know I will get

there one day.

I find that on my " good days " I try to do the things I like to do and the next

couple of days I really pay for it. People with Fibromyalgia do have good days

and it seems that we try to catch up on things that we have missed.

I am fortunate to have a good support group with my family. My friends don't

understand but that really doesn't matter to me anymore. I am still the same

person I was before fibro I just take things slow and don't over do. The best

thing you can do is to educate the people around you. Go to the Fibromyalgia

website and print out any information you think would be helpful to them. Some

people never understand what we go through even with information, and that's

okay too. You know your pain, you know or will have to learn your limits. This

support group has been the best thing for me. Here you will find people that

Fibro affects differently than you. They may have other symptoms you will never

have but you educate yourself by their experiences.

I feel isolated from the World most of the time but here you are you. There are

no high expectations of anyone and we don't judge you. Questions are answered

here to the best of our ability and we certainly don't give medical advice

expect we may say you need to see a doctor. I hope you will find a good support

family here like I have.

We have also started a penpal campaign. You can do to the database to the right

of this email and click on database and add your name and address to it. This is

just getting started so it's the perfect time. I think right now we are writing

to the person above our name but feel free to write to as many as you want to or

can.

My thoughts and prayers are with you. I know this is a tough time just after

being diagnosed, but we are all here for you.

Debra B

Gladewater, Texas

Newbie, New Diagnosis and questions

Greets!

I am a 42 year old guy who started having mystery pains in the right forearm

about 4 months ago before they went everywhere about a month ago.  My

rheumatologist says that after boatloads of tests, I have fibro starting up.

I have to go through a couple more months for the insurance companies for

the official diagnosis so right now we are going with myofagial (sp?) pain

and some other non-specific thing, but I am in my first flare with a lot of

emotion, pain and confusion.

I am sure everyone here is familiar with the horror stories about being

doubled over and paralyzed in pain for 5 minutes because it feels like your

arm is splitting because a cold wind caught it in front of your children, or

waking up with you ribs and arms hurting like nuts for no reason, the first

time experiencing your body being unable to do the things you like to do

best intermittently, like play guitar because the fingers are locking and

painful or the forearm is killing, or the body strength is tapped, docs

scrambling trying to figure out how to control the pain and try to make

things somewhat " normal. "   I'm left with questions like " What is happening

to me?  What is going to happen to me?  When will this flare end?  And why

won't this pinch in my neck go away when the rest of the pain subsides

during the day?

I am trying to go through all of this pretty gracefully and with as much

hope as I can, but sometimes I get so angry about it.  I don¢t blame anyone

or anything, but the " why this have to happen " question is obviously on my

mind.  Knowing friends who have had it for a long time and are pretty

debilitated is quite scary.

I'm trying to educate myself, but right now I am just trying to hang on and

ride this thing out.  I am moving form OH to FL this year to get myself out

of the cold (the cold wrecks me), and I know I have to change my lifestyle,

but what do I do, physically and psychologically to make this easier on

myself to accept and to cope with?

Thanks for listening.  I figure this would be THE place where people would

understand, because most of my family does not, other than my sons.

Deep breath,

~Joe

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1. While it is wonderful to share our experiences with everyone on the list as

to what treatments do and don't work for us, pls always check with your dr. 

Some treatments are dangerous when given along with other meds as well as to

certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't be

afraid to ask for help.  It is the first step to trying to make that situation

better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at the

same time when it comes to flares and b/c of that potentially take something

another member says the wrong way.  And that includes the things that one member

may find funny (even if it's laughing at fibro itself) even though we who deal

with illness whether one such as fibro or multiple illnesses try to keep a sense

of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls let

us know so that we can do our best to offer our support.

Have a nice day everyone.