Re: New and looking for info - (long)

[Guest guest]

Hi :

I am sorry to hear that you were adversely affected by

Katrina. That must not help your pain situation very

much as stress plays a great role in our health. It

must be very overwhelming with small children to care

for, and cope with what we have to on a

physical/emotional basis as well with RA and other

" invisible disabilities " . a posted a wonderful

site for Fibromyalgia, and I used it to further

educate my husband on what FM is, and just what I am

dealing with. The web page is:

http://www.hss.edu/Conditions/Fibromyalgia/Fibromyalgia-Syndrome.

I found it helpful for me as well, and identified with

a great majority of the symptoms. My husband said I

have all the symptoms there, except for drug

addiction, and I told him that I am working on that

one lol. Anyway, it did help us both.

These immune system diseases are so difficult for

people to understand, I feel, because for the most

part, we still look " normal " . Luckily, I have no

joint deformities, and on my good days you can't tell

that there is anything wrong, but on my bad days, I

can barely move, but perhaps they think it's because

I'm overweight that I am having trouble walking, etc.

We are questioned as to whether or not we are just

" lazy " or " complainers " looking for attention. It's

hard to understand our pain and disability when what

we are dealing with is under the skin so to speak, our

pain cannot be seen in any physical way, and since it

can sometimes come on literally overnight, and even

vary during the course of a day, we never know how we

are going to be feeling. Getting people to deal with

that is hard when they can't see what is causing our

pain. I can never plan ahead on anything really, and

must change plans often, and that can get frustrating

for family and friends to understand. also, with the

FM, my brain does not function as well as it used to,

fibro fog it is called, and I have difficulty

concentrating or even speaking, finding the right

words or saying the wrong ones, sometimes. My family

is used to playing fibro charades with me, and my

daughter is very adept at finishing my sentences when

I forget what I was going to say lol. A sense of

humor is important, I have found, when dealing with

all of this stuff.

My kids were 16 and 13 when I was dx at 45 six years

ago, so they were able to fend for themselves when

necessary. With such little ones, it has to be very

hard to take care of them some days, and even picking

a child up and holding it can be painful, and for the

child to understand when mommy can't do something with

them. On the other hand, I think that it has made my

kids more understanding of people in general, and they

don't question when someone gets out of their car in a

handicapped parking space without crutches, cane or

wheelchair, because they know there are times that I

need to use my placard too, and people sometimes look

at me strangely, or even openly disaproving.

Don't worry, after you get in to see a doctor, and

find the right meds/combo of meds for you, things will

get better. It won't be overnight, but it will

happen. There is even a chance that you will be able

to work again, although taking care of children is

certainly the most important work of all! In the

meantime, rest as much as you can, use rice socks or

heating pads, and take hot showers and baths. I hope

you see a doctor soon. Hang in there.

Kathe in CA

--- kt m <ktandtm@...> wrote:

> Hi Kathe,

>

> Thank you for the info. What exactly is

> fibromyalgia? I have heard the name but know

> nothing of it. What do they use to treat these

> things? I feel hopeless at the moment until I can

> get to a doc. I truely feel like I can't ever work

> or have a career. I am home with the kids now and

> can't even take care of them on some days. I have

> been eating ibuprophen to help but as little as

> possible since I am breastfeeding. Once the baby is

> a year (in Sep.) I can take whatever but until then

> I am hoping to be able to continue to breastfeed

> since we have allergies in our family. There are

> days that I feel like throwing in the towel. I just

> feel so pathetic. I am too young for this. I hope

> I can find support here because people who don't

> feel this pain have no idea what you are going

> through. I think my mother in law looks at me like

> I am crazy on some days. We are staying with them

> until the first of the year since we are in the

> process of moving. A hurricane Katrina thing. I

> think stress and having a baby has brought this on.

>

>

>

> Kathe Sabetzadeh <lv2ryd@...> wrote:

>

> Hi :

>

> Sure sounds like you have RA - yes, it can move

> around. Some days it is my hips and ankles, some

> days

> my elbows and hands, etc., and some days it is all

> joints. After about a year with RA, I told my

> doctor

> that I also was having pain in not only my joints,

> but

> also my muscles, and entire body. She told me that

> it

> would not be unusual for me to also have Fibro, but

> never dx it. When I changed doctors a few years

> later, after examination, he told me that I

> definately

> also had Fibro. So, it's not unusal to have more

> than

> one autoimmune disease, seems like when we get one,

> others also join in the party. I have RA, Fibro,

> Raynaud's, and, I suspect, Sojrens. So, let your

> doctor know about the muscle pain - could be Fibro.

>

> Kathe in CA

>

>

> -- ktandtm <ktandtm@...> wrote:

>

> > I just recently had a baby and ever since I had

> her

> > my body has been

> > hurting terribly. This is my 7th child and this

> is

> > not normal for

> > me. Some days my knees hurt so bad I can hardly

> get

> > off the couch.

> > Other days my elbows will only open to a certain

> > point. It is not

> > only in my joints though it is in my muscles as

> > well. One day my

> > hand swelled but only from my knuckles to my

> wrist.

> > The pain was

> > tremendous but my fingers were fine. Just pain in

> > my hand. The

> > weird thing is my pain seems to shift around my

> > body. They did a

> > sediment level and it was normal but my RA factor

> > was very high. I

> > haven't been able to get back to the doctor and

> > probably won't be

> > able to until sometime in Jan. People keep saying

> > maybe I have

> > Rheumetoid or Lupus. My mom has Rheumetoid but

> said

> > it is always in

> > her joints and not the muscles.

> >

> > My question is, what are the symptoms of Lupus and

> > what kind of test

> > do they do for it? I don't know anything about

> it.

> > The doc did a

> > CBC and a monocites level I think. The monocites

> > were a little high

> > but he wasn't concerned. My CBC and all that were

> > normal. Any help

> > and info would be great. Seems like I am living

> on

> > Motrin these

> > days and I just want to get to the bottom of this.

> >

> > Thanks,

> >

> >

> >

> >

> >

> >

> >

>

>

>

> Kathe in CA

>

>

>

>

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