Re: Welcome Tim

[Guest guest]

Hi Tim,

Welcome to the group. This is a wonderful group of people who truly care

about each other. We are all in this together and share freely what helps us

and everything else that goes into dealing with chronic pain.

You didn't say what type of pain your dealing with. It's hard for our

spouses to see us in pain. And just like us they'd like it to go away. Boy,

would that be nice. In my opinion, chronic pain needs to be discussed and

often

because it's always changing. You can't pretend it's not there. Your wife

may feel inadequate because she doesn't understand it. An open dialogue is

always best.

We are here to support you.

Kathleen in NC

[Guest guest]

Hi Kathleen and thank you for the welcome. I have Rieters Syndrom

which is a arthritic like, but affects the conective tissue which

attaches muscle to the bone. It comes in different degrees. Some

people may get it and it go away. Some get it and it comes and goes.

It is kind of rare, and I am even more rare in that I have it at a

chronic level. It also falls into the 'auto-immune disorder' catogory

so that I have inflammation in my back (which is the worst) arms,

legs, feet and hips, now with this disorder- my immune system is

steadly attacking me.

Thats the overview. The pain never goes away but it hits at

different levels everyday. I am effected by weather. Low pressure

systems hurt the worst, but I can have just as bad a day when its

nice outside. Its just garanteed on a rainy day.

One of the biggest problems I have is,,This disorder comes mostly

to men 20-40 years old. Im 38, 6'3' 230lb. I look like im in good

shape. Always been very musculer. So everyone (wife included) sees a

guy that should be able to handle anything, No job too big, and all

that. For the last couple of years I have been able to hide my pain,

but starting this year it has worn me down and I cant hide it at all.

I have to tell people " I can't do that " and that is hard to do when

at the moment I can, but I know that later in the day or certainly

the next morning, I will hurt very bad and it will last for days.

I dont guess my condition is well known. It set on me years ago and

grew at slow steady pace. I moved to Texas almost 3 years ago and

found a GREAT doctor who has helped me and understood my problems. He

is the first one. There is no cure. There is only pain control, but

soon I will try Remicade which hopefully will back the inflammation

down.

Lastly and most importantly... I dont know if you read my response

to Becky in 'Chronic pain and dating, but in that response I pointed

out communicative problems with my wife. I need to say that I just

joined this group that day,,two days ago I think? maybe 3. I told her

I had joined this support group and she was very suprised. Over lunch

we discussed my condition, and I found out she had NO IDEA how bad I

was. I could not believe it. I thought she knew. She asked me to try

to tell her how it is. Not easy, I dont like to say how I 'feel'

outloud, but because of this group (inadvertantly maybe) I opened the

door to my wifes understanding!! She has always been wonderful, so I

am not suprised to find it has been me not saying anything that has

been the problem. I thought she had a good idea from the dr. visits

and medication. Now I see how she could not really know unless I told

her how I really feel. I love her very much and now we have this

straigtened out before the Christmas with her family!.

I got to say that I have just joined this group, but man, what a

help it has been already. Hope I did not give a lot more info than

what you where asking for, but it sure feels good to get it off my

chest. Thank you.

I'll be in touch, Tim

Kathleen in NC wrote:

> Hi Tim,

> Welcome to the group. This is a wonderful group of people who

truly care about each other.

[Guest guest]

Hi Tim,

I know this wasn't directed to me, but, I haven't officially welcomed

you...So, Welcome to the group, so glad you found us! :-)

I am VERY happy to hear that you have been able to talk to your wife!!

I so understand about 'looking " fine, but being far from it. I am so lucky

to have the wonderful man that I do. He is not normal...LOL...I tell him

so, and it is why I love him so much. For a man he is very vocal about

expressing his feelings, and talking with me about mine. If I weren't able

to discuss my health issues with him, well, I suppose we wouldn't have made

it this far.

I know how hard it is to talk about your pain and limitations, especially

when you have been so strong and independent in the past. Sometimes its

hard enough just to admit this to yourself, let alone, put it into words to

tell someone!

Reiters Synd. kinda sounds similar to Fibro...no fun Hope you get the

support you need here, for me this site has been wonderful! Welcome to our

little family!

Blessed Be, Lori in California

[Guest guest]

Hi Lori and thank you for your welcoming. This is a short one, I

just wanted to say 'yes this is like fibro' but it is much more

severe. It is also closly related to Rhumitiod arthritis and is

treated much the same. My sister has fibro and Rhumitiod and I also

have two aunts with Lupus. These are all in the same family (no pun

intended). Fibro attacks mainly women,,Rieters mostly men. and your

right, its " no fun " .

Thanks,,,talk to you all soon, Tim

Lori <lorilokks@e...> wrote:

>

> Hi Tim,

> I know this wasn't directed to me, but, I haven't officially

welcomed

> you...So, Welcome to the group, so glad you found us! :-)

>

> I am VERY happy to hear that you have been able to talk to your

wife!!