Re: Need Fibro Help ASAP!

[Guest guest]

Hi Debra and Welcome,

I've been thinking about your question and trying to come up with something

helpful. I'm sure others will, but I will give it a try.

I would ask your doctor about pain meds if the pain is bad. I find that

taking my hydrocodone when in pain helps me be able to think better and even

lifts the fog a little. I think when I'm in terrible pain my mind becomes

consumed with it and adds to my not being able to focus or do anything

productive. If I can lessen that one component, I find I can focus on things

that absolutely need to be done, even if I still can't do the other stuff.

I was lucky that my oldest kids were 17 and my youngest 14 when my first

symptoms started. I was 40 or 41 when dx. They were old enough to understand

that I had contracted an illness that was causing me great pain and was limiting

my ability to do the things I had always done. They were able to see the

difference in me when they came home from school. Instead of busily getting

things done and being my somewhat over organized self, I was on the couch

exhausted and in pain. The symptoms came on gradually for me over years, so at

first it wasn't as bad as it is now and I could still at least do the things I

did before; they just wore me out completely and I had to rest a lot.

Since your children are younger, it's probably harder for them to understand

why it is harder for you to push on to do what you need to do. I am sorry this

hit you at such a young age, as it has lots of people in this group - a lot even

younger. I hate the fact that it is stealing people's youth. I feel like I got

a full 40 years of being relatively normal and you didn't. (I don't know what

normal is but I wasn't in constant pain or exhausted by very little or living in

the confusion of fibro fog.)

I know this isn't very helpful as to what to talk to your doctor about. I

just wanted to say that maybe if you explain to him/her that you need to be able

to keep going and the pain is in the way of that, he will prescribe something to

help you out.

I also take the psych meds, but get them from my psychiatrist. He and several

of my doctors don't really believe in fibromyalgia. Well he does, but he still

thinks some of the fog and some of the pain are from my PTSD. Who knows.

If you have trouble sleeping I would ask your doctor about that. It would be

good if you could have an actual conversation about what is going on in your

life. I would take a list of things that you want to cover and make sure you

cover each one. They may be all related to Fibro. There are a lot of other

illnesses that we fibromites have.

I don't know if any of this helps. I will be praying that your visit is

productive and that you feel better.

Marti

Debra #402430 tlcsassyscrapper@...> wrote:

Ok, well I have been part of this group for several months. I lurk

most of the time and will try to do better at posting.

I have a Dr appt tomorrow. I am not real good at keeping up with my

health and being a mom and wife (those of you know what I mean) I put

everyone else before me.

Well my Internist will no longer refill my depression meds without

seeing me, which I understand. I haven't seen him in about a year

and a half. I was diagnosed with Fibro about 5 years ago or so and

I'm almost 40.

I've been struggling with depression, anxiety and the fact that I

pretty much feel like crap most of the time. I'm resigned to the

fact that it is my Fibro and that is what my life is. I'm just tired

of not having energy, the pain, etc.

I push myself to stay active. If I had my way, I would stay at home

most of the time and not do much. Having 4 children, I also realize

that that isn't an option.

So what I'm asking is what should I talk to the Dr about? Any of you

have any suggestions as to what is working for you? I'm at a loss

and am hoping that he will have some answers for me. I really like

this Dr and he is very understanding.

I feel like I'm at a point where I wish I could just go on

disability. Due to the fact that I just never know when I'm going to

have a bad couple of days and need to just sit because of the pain.

Trying to keep a job at this point is very difficult.

Any insight that those of you that are more experienced at this,

please post or email me.

Blessings,

Deb in MN

between 0000-00-00 and 9999-99-99

[Guest guest]

Deb,

I missed this when it first came out. Like you, I am one of those who

puts her kids, even her dogs and cat, ahead of her when it comes to

medical attention, even for the obligatory annual.

From a pro in the Fibro pain department, these are the things you

should tell your doctor (No, it's not me, she's my best friend and

brought me to this group):

1. Keep a journal as to how much pain you suffer over seven days.

When it happens. Where it's located. What scale it fits 10 being just

kill me now and 1 being negligible. During the week prior to your

appointment document all the things your body screams, whimpers or

whatever about, location, etc. and whether or not what you do for it

works or not.

2. Write it down. I helped my friend write down her medications

because she had to change doctors and states.

3. Write down all your other doctors names and the reasons you see

them (if you have others).

4. Write down your allergies, and known or documented medical

conditions, no matter how silly they might sound, you'd be amazed at

how doctors respond when you're prepared. (For instance, I'm allergic

to milk, but not the lactose intolerance, and I'm allergic to sulfa,

the ingredient in eggs that is used in medicine, so no flu shots for

this little girl)

5. Get written testimony from colleagues if you work, as to what you

go through, and if you don't work, get testimony from your family

members, if they are understanding. You'd be amazed what the power of

observation from an outside source can afford a doctor or anyone else

in the realm of pertinent knowledge.

Ladies and gentlemen of the group, please let her know if I missed

anything. I repeat, I'm not an expert. I'm not a doctor. I'm a simple

homemaker, wife, mother,poet, minister, writer, who has only

officially been diagnosed with Chronic Fatigue Syndrome in the past

eleven years. I'd personally rather not go see a doctor until I'm

beyond frustration. I'm getting close to that point, because nothing

seems to keep the pain at bay. I take no prescriptions. I drink no

alcohol. I don't smoke, anything. I am seriously addicted to

caffeine - the soda pop style - unless it's cocoa, and then just try

to keep me from it. We won't get into the penchant for chocolate.

A. Neff

>

> Ok, well I have been part of this group for several months. I lurk

> most of the time and will try to do better at posting.

>

> I have a Dr appt tomorrow. I am not real good at keeping up with

my

> health and being a mom and wife (those of you know what I mean) I

put

> everyone else before me.

>

> Well my Internist will no longer refill my depression meds without

> seeing me, which I understand. I haven't seen him in about a year

> and a half. I was diagnosed with Fibro about 5 years ago or so and

> I'm almost 40.

>

> I've been struggling with depression, anxiety and the fact that I

> pretty much feel like crap most of the time. I'm resigned to the

> fact that it is my Fibro and that is what my life is. I'm just

tired

> of not having energy, the pain, etc.

>

> I push myself to stay active. If I had my way, I would stay at

home

> most of the time and not do much. Having 4 children, I also

realize

> that that isn't an option.

>

> So what I'm asking is what should I talk to the Dr about? Any of

you

> have any suggestions as to what is working for you? I'm at a loss

> and am hoping that he will have some answers for me. I really like

> this Dr and he is very understanding.

>

> I feel like I'm at a point where I wish I could just go on

> disability. Due to the fact that I just never know when I'm going

to

> have a bad couple of days and need to just sit because of the

pain.

> Trying to keep a job at this point is very difficult.

>

> Any insight that those of you that are more experienced at this,

> please post or email me.

>

> Blessings,

> Deb in MN

>

[Guest guest]

Thanks so much for the replies. I know that I'm not alone here.

About 80% of the time or so, people wouldn't even know that I was in

pain. I try not to complain about things and make the best of the

situation I've been given.

There is so much that I need to work on, it's just so difficult to

figure out where to start. Insomnia is a huge issue. I NEED and

enjoy my alone time at night. So I generally don't get to bed until

2 am. I get up around 9 am most days. I know this isn't enough

sleep, it's so hard to break the cycle.

The fibro fog is a huge issue also. I've been thinking that I might

also have ADD, but have never been diagnosed.

There are many times that I get to the grocery store only to be

barely making it to the cashier and then to the car. I've called my

hubby a couple of times to come rescue me, because I was in so much

pain and exhausted. It's like I just need to sit and can't continue.

I am about 80 lbs over weight and know that I need to lose that, but

the pain, depression, lack of sleep, etc and it all becomes too much.

I am going to try very hard to work on journaling. I know that it

will help to pinpoint when I'm having a flare up and areas that I

need help or to work on.

I am looking forward to getting to know more of you here.

Blessings,

Deb in MN

[Guest guest]

Deb,

Welcome! What I have been doing for ALL my doctors is writing down

questions I want/need answered (this worked very well in the

hospital!). I will ask my DH if there's something he's concerned

about or wants to know as well, as he doesn't go with me.

I am also becoming " more involved " in my health care. That may not

make sense to some, but I live in this skin and because of my horrid

swelling (no one can truly visualize it, I'm sure), I now have

stretch marks where none used to exist. That's not to say I'm thin at

all, I have metabolic syndrome and Type 2 diabetes (although my A1C #

is good!).

Know what you may be allergic to. If you are prescribed something,

ask if it is in the " family " of meds you are allergic to; the

difference between life and death! Because there are so many meds

out, they often don't know. If I have had an allergic reaction to a

1st or 2nd generation drug, I won't let them give me that class of

med at all. I don't care how they have tweaked it!

I bought a small spiral notebook. I have on one page all my

allergies. The next page has all my meds, the dr who prescribed it

and the dosage/# of times a day. On another page, I list all my

hospitalizations (which, until this year, hadn't been since 1987!)

and all my surgeries, most current back. I also have all my

providers' names and tele #s in my address book and cell phone. These

are all items you will need to fill out the paperwork so you might as

well have them close at hand, right? It also helps with the blasted

memory/fog....

The notebook is updated any time I get new meds, etc. and I put the

date on it as well. I also have, since the allergies are so

significant, a red medi-alert that I typed up that is pretty

prominant in my wallet and I have one of those bracelets that you can

get at walmart (I couldn't afford the expensive one).

I was having such a hard time walking that I now have a handicap

placard ( " Rock Star parking " ). If you feel that this is causing you

issues with work, get HR involved for FMLA protection.

Just some suggestions.....my brain is actually awake this morning!

Darlene

-- In Fibromyalgia_Support_Group , Marti Boguski

wrote:

>

> Hi Debra and Welcome,

>

> I've been thinking about your question and trying to come up with

something helpful. I'm sure others will, but I will give it a try.

>

> I would ask your doctor about pain meds if the pain is bad. I

find that taking my hydrocodone when in pain helps me be able to

think better and even lifts the fog a little. I think when I'm in

terrible pain my mind becomes consumed with it and adds to my not

being able to focus or do anything productive. If I can lessen that

one component, I find I can focus on things that absolutely need to

be done, even if I still can't do the other stuff.

>

> I was lucky that my oldest kids were 17 and my youngest 14 when

my first symptoms started. I was 40 or 41 when dx. They were old

enough to understand that I had contracted an illness that was

causing me great pain and was limiting my ability to do the things I

had always done. They were able to see the difference in me when

they came home from school. Instead of busily getting things done

and being my somewhat over organized self, I was on the couch

exhausted and in pain. The symptoms came on gradually for me over

years, so at first it wasn't as bad as it is now and I could still at

least do the things I did before; they just wore me out completely

and I had to rest a lot.

>

> Since your children are younger, it's probably harder for them to

understand why it is harder for you to push on to do what you need to

do. I am sorry this hit you at such a young age, as it has lots of

people in this group - a lot even younger. I hate the fact that it

is stealing people's youth. I feel like I got a full 40 years of

being relatively normal and you didn't. (I don't know what normal is

but I wasn't in constant pain or exhausted by very little or living

in the confusion of fibro fog.)

>

> I know this isn't very helpful as to what to talk to your doctor

about. I just wanted to say that maybe if you explain to him/her

that you need to be able to keep going and the pain is in the way of

that, he will prescribe something to help you out.

>

> I also take the psych meds, but get them from my psychiatrist.

He and several of my doctors don't really believe in fibromyalgia.

Well he does, but he still thinks some of the fog and some of the

pain are from my PTSD. Who knows.

>

> If you have trouble sleeping I would ask your doctor about that.

It would be good if you could have an actual conversation about what

is going on in your life. I would take a list of things that you

want to cover and make sure you cover each one. They may be all

related to Fibro. There are a lot of other illnesses that we

fibromites have.

>

> I don't know if any of this helps. I will be praying that your

visit is productive and that you feel better.

>

> Marti

>

> Debra #402430 wrote:

> Ok, well I have been part of this group for several

months. I lurk

> most of the time and will try to do better at posting.

>

> I have a Dr appt tomorrow. I am not real good at keeping up with my

> health and being a mom and wife (those of you know what I mean) I

put

> everyone else before me.

>

> Well my Internist will no longer refill my depression meds without

> seeing me, which I understand. I haven't seen him in about a year

> and a half. I was diagnosed with Fibro about 5 years ago or so and

> I'm almost 40.

>

> I've been struggling with depression, anxiety and the fact that I

> pretty much feel like crap most of the time. I'm resigned to the

> fact that it is my Fibro and that is what my life is. I'm just

tired

> of not having energy, the pain, etc.

>

> I push myself to stay active. If I had my way, I would stay at home

> most of the time and not do much. Having 4 children, I also realize

> that that isn't an option.

>

> So what I'm asking is what should I talk to the Dr about? Any of

you

> have any suggestions as to what is working for you? I'm at a loss

> and am hoping that he will have some answers for me. I really like

> this Dr and he is very understanding.

>

> I feel like I'm at a point where I wish I could just go on

> disability. Due to the fact that I just never know when I'm going

to

> have a bad couple of days and need to just sit because of the pain.

> Trying to keep a job at this point is very difficult.

>

> Any insight that those of you that are more experienced at this,

> please post or email me.

>

> Blessings,

> Deb in MN

>

>

>

>

>

> between 0000-00-00 and 9999-99-99

>

>