Pain

June 10, 2008

Elly Feel better !!!!!! Love Sharon and xxxooo

> Thanks Melt, actually I did call my docs answering service, and they

> said nicely,we only contact the doc if it's an emergency and I said

> well I am in extreme pain (yelling involentarily when I move a certain

> way)and thought he would call in a muscle relaxer for me.She said oh

> we

> don't do prescriptions by phone any more either! What? This is a

> rheumatologist,what would be considered an emergency?Ok a high fever,a

> rash a flare?My problem is after today I have to wait until Friday to

> get a prescription when Bill comes back up!With luck a neighbor will

> be

> around and I will be able to get in a car.Right now I can't get from a

> sitting position or into one without bad spasms,sowish me luck.

> love Elly

>

August 27, 2008

You do not have to be in Pain, to have Mental problems as you said

Anxiety - Panic attack's or Depression. But living with Chronic Pain as

I do I have all those isues, but I had those Mental Problems before my

Chronic Pain, it just seams like they are worse now.

>

> Pain can have affects longterm. I noticed even after pain got under

> control it still caused Anxiety related issuess depression issuess

> etc. so you go from taking pain meds to taking anti anxeity meds to

> deppression medications. which I am not saying anything wrong with. I

> do myself. I wonder though If Doctors would treated the pain from the

> beginging would we then have to go to the alternative routie to get

> anti depressents etc.. I have a pain Doctor and a psycyrist spelling

> wrong. mike group owner

>

October 8, 2008

I do have some numbness and pain in my hands occasionally. It usually happens when I am very tired or have been doing something repeatedly for a while. I suffer from peripheral neuropathy and the feeling is almost the same. I have often wondered how you can be numb and hurt so bad at the same time. Darlene From: Brecker <davidbrecker@...>Subject: PAINdominie , Fibromyalgia-Crochet Date: Wednesday, October 8, 2008, 11:46 AM

Hi just writing to see if anyone suffers with the hands arms and legs going numb but yet in a lot of pain i hurt so much right now with my hands being numb and hurting

shelly

October 9, 2008

Hi! Yes,I sure do! Most of the time it happens when I'm doing something repetitive. Like typing on the computer lol! But it will also happen at random times as well.

Darlene,I LOVE your little witch graphic! Very cute! Everyone take care! Pam.S

http://www.zazzle.com/pammys*

For MANY Fibromyalgia Awareness items

Thanks! Pam

PAINdominie@groups .com, Fibromyalgia- Crochet@gro ups.comDate: Wednesday, October 8, 2008, 11:46 AM

Hi just writing to see if anyone suffers with the hands arms and legs going numb but yet in a lot of pain i hurt so much right now with my hands being numb and hurting

shelly

October 26, 2008

>

Sounds like a very very severe fibromyalgia flare. I take a warm bath

with some epsom salts. Then look at what you can still do that day no

matter how small that is.

Dominie has it on her main page www-fms.help.com A letter to normals

and also her fibromyalgia story too. but for now concerate on what

you can do and get up take a warm bath with epson salts then get up

fix a cup of warm tea too. If you have to take some magnesium with

malic acid too that is a OTC vitamin that helps some people with

fibro too.

heidi

> Has anyone experienced this or is this unusual. For the past 8

days

> now, I've been bedridden with such severe pain that it just hurts

> unbelievably everywhere. It hurts to straighten my arms, it hurts

to

> bend my arms, as far as my elbows and then the inner portion, the

same

> goes for my legs where it hurts if I straighten then if I bend,

where

> my knees hurt and then the backside of my knees. My shoulders as

well.

> My fingers, wrists, back, neck, buttocks, etc. Along with this I

have

> major tingling mainly in my legs, but also in my fingers.

>

> The more severe pain is usually in the a.m. but it doesn't seem to

go

> away but eventually by the evening I'm well enough to go to the

living

> room for a couple of hrs, but still the pain is severe.

>

> It seems that the longer I have FMS the worse it's getting. Is

this

> normal? I've only been diagnosed with this within the past year

but

> believe that I've had this since the 80's, and I'm still trying the

> find the " right " doctor to treat me so I'm not on the proper meds

for

> sure. Since I'm in bed all day my family just doesn't understand

and

> I'm getting, " you're still in bed " ? kinda thing, which hurts, but

> there's nothing I can do.

>

> Thanks everyone for your help and input!

>

October 26, 2008

Heidi,

Sounds like you are having a really bad flare. Rest is the best thing for you. But do get out of bed to just sit in a chair, so someone can change your bed, help you with a shower, rub some oil or lotion on you. Comb you hair for you. Get some books on tape. listen to music, I like to listen to 60's music when its a bad day. And a really bad flare gets Celtic and bagpipes. I had a bad flare that lasted 3 months and had to go to several doctors before I found my Rheumatologist. She took 4 months before she came up with a diagnosis. She listens, she never thinks I am nuts ( many did)

While riding in a car is hard, a trip to get out of the house just for 20 minutes often makes a difference.

All in all, it will pass, be patient, give yourself the time to heal.

Remember: A little consideration, a little thought for others, makes all the difference --Eeyore from "Winnie-The-Pooh."

From: dominie [mailto:dominie ] On Behalf Of heidiSent: Sunday, October 26, 2008 10:32 AMdominie Subject: Re: PAIN

>Sounds like a very very severe fibromyalgia flare. I take a warm bath with some epsom salts. Then look at what you can still do that day no matter how small that is.Dominie has it on her main page www-fms.help.com A letter to normals and also her fibromyalgia story too. but for now concerate on what you can do and get up take a warm bath with epson salts then get up fix a cup of warm tea too. If you have to take some magnesium with malic acid too that is a OTC vitamin that helps some people with fibro too.heidi> Has anyone experienced this or is this unusual. For the past 8 days > now, I've been bedridden with such severe pain that it just hurts > unbelievably everywhere. It hurts to straighten my arms, it hurts to > bend my arms, as far as my elbows and then the inner portion, the same > goes for my legs where it hurts if I straighten then if I bend, where > my knees hurt and then the backside of my knees. My shoulders as well. > My fingers, wrists, back, neck, buttocks, etc. Along with this I have > major tingling mainly in my legs, but also in my fingers. > > The more severe pain is usually in the a.m. but it doesn't seem to go > away but eventually by the evening I'm well enough to go to the living > room for a couple of hrs, but still the pain is severe.> > It seems that the longer I have FMS the worse it's getting. Is this > normal? I've only been diagnosed with this within the past year but > believe that I've had this since the 80's, and I'm still trying the > find the "right" doctor to treat me so I'm not on the proper meds for > sure. Since I'm in bed all day my family just doesn't understand and > I'm getting, "you're still in bed"? kinda thing, which hurts, but > there's nothing I can do.> > Thanks everyone for your help and input!>

October 26, 2008

It could be a fibro flare, but there are also other conditions that can do this. I have 2 of them, one is Myofascial Pain Syndrome, the best treatment is to find a message therapist to help release it, they can then show you how to do some of the release on home. That is how I manage mine. The other condition is Polymyalgia Rhuematica, which causes pain in the shoulders and pelvic area, which can affect the legs and arms. I went through pain like this and my doctors at that time just kept telling me it was the fibro. I finally decided to go to a rhuematologist and he did testing and then diagnosed me with it. Treatment for this consist of steroids, or mexthotrexate or a combination of both. The Dr and I chose the steroid route, as I have worked with patients on methotrexate, and you have to have frequent blood test as it can lower your white count and can cause other problems, it started as a cancer drug and has been approved for other uses. YOu can google it if you like. But don't automatically assume that it is a fibro flare. Too many fibromites do this and then cause more problems as they wait so long before consulting the physician. Sandie > Has anyone experienced this or is this unusual. For the past 8 days > now, I've been bedridden with such severe pain that it just hurts > unbelievably everywhere. It hurts to straighten my arms, it hurts to > bend my arms, as far as my elbows and then the inner portion, the same > goes for my legs where it hurts if I straighten then if I bend, where > my knees hurt and then the backside of my knees. My shoulders as well. > My fingers, wrists, back, neck, buttocks, etc. Along with this I have > major tingling mainly in my legs, but also in my fingers. > > The more severe pain is usually in the a.m. but it doesn't seem to go > away but eventually by the evening I'm well enough to go to the living > room for a couple of hrs, but still the pain is severe. > > It seems that the longer I have FMS the worse it's getting. Is this > normal? I've only been diagnosed with this within the past year but > believe that I've had this since the 80's, and I'm still trying the > find the "right" doctor to treat me so I'm not on the proper meds for > sure. Since I'm in bed all day my family just doesn't understand and > I'm getting, "you're still in bed"? kinda thing, which hurts, but > there's nothing I can do. > > Thanks everyone for your help and input! > ------------------------------------

October 26, 2008

Hiedi and all,It is a relief to hear you talk of a flare like this. I have been battling my Fibro alone for so long that I really have no barometor for what is part of my illness and what is me being a baby. I am in a terrible flare. I cannot climb the stairs without feeling like I am going to faint. I showered and it felt like I was never going to finish. Then I stood in the middle of my bedroom, towel around me and wondered how I was ever going to get dressed. I have been sleeping for most of the weekend. a drugged sleep that feels as if I am slipping into nothingness. I am always scared when I am in a flare like this. I imagine that this is what the beginning of dying must feel like. Then inside my head I begin to think of all the things I want to be doing. My designs,my horses,a movie with the family,cooking dinner....and "I say I have to be able to do those things. I cannot be like this. I must not be a strong enough person." I am embarassed in front of my family. It is a relief to read I am not alone. I don't often write on here but I read. I don't feel so alone. I live in a world that does not understand {except my wonderful husband} but I can feel for a moment when I read that I am not on an island.> >> > Sounds like a very very severe fibromyalgia flare. I take a warm bath > with some epsom salts. Then look at what you can still do that day no > matter how small that is.> Dominie has it on her main page www-fms.help.com A letter to normals > and also her fibromyalgia story too. but for now concerate on what > you can do and get up take a warm bath with epson salts then get up > fix a cup of warm tea too. If you have to take some magnesium with > malic acid too that is a OTC vitamin that helps some people with > fibro too.> heidi> > Has anyone experienced this or is this unusual. For the past 8 > days > > now, I've been bedridden with such severe pain that it just hurts > > unbelievably everywhere. It hurts to straighten my arms, it hurts > to > > bend my arms, as far as my elbows and then the inner portion, the > same > > goes for my legs where it hurts if I straighten then if I bend, > where > > my knees hurt and then the backside of my knees. My shoulders as > well. > > My fingers, wrists, back, neck, buttocks, etc. Along with this I > have > > major tingling mainly in my legs, but also in my fingers. > > > > The more severe pain is usually in the a.m. but it doesn't seem to > go > > away but eventually by the evening I'm well enough to go to the > living > > room for a couple of hrs, but still the pain is severe.> > > > It seems that the longer I have FMS the worse it's getting. Is > this > > normal? I've only been diagnosed with this within the past year > but > > believe that I've had this since the 80's, and I'm still trying the > > find the "right" doctor to treat me so I'm not on the proper meds > for > > sure. Since I'm in bed all day my family just doesn't understand > and > > I'm getting, "you're still in bed"? kinda thing, which hurts, but > > there's nothing I can do.> > > > Thanks everyone for your help and input!> >>

October 26, 2008

Thank you for caring enough to respond with your ideas. I do force myself to get up later in the early evening and do go downstairs and sit on the couch. Although I dread the stairs I manage to get down them. My boyfriend has offered to carry me down the stairs, but between getting nervous about him dropping me or just the pain of him holding me, I manage it myself, painful as it is. You say rest is the best thing, but how must rest to too much rest? Again I thank you.

From: Christie <eeyore46@...>Subject: RE: Re: PAINdominie Date: Sunday, October 26, 2008, 10:45 AM

Heidi,

Sounds like you are having a really bad flare. Rest is the best thing for you. But do get out of bed to just sit in a chair, so someone can change your bed, help you with a shower, rub some oil or lotion on you. Comb you hair for you. Get some books on tape. listen to music, I like to listen to 60's music when its a bad day. And a really bad flare gets Celtic and bagpipes. I had a bad flare that lasted 3 months and had to go to several doctors before I found my Rheumatologist. She took 4 months before she came up with a diagnosis. She listens, she never thinks I am nuts ( many did)

While riding in a car is hard, a trip to get out of the house just for 20 minutes often makes a difference.

All in all, it will pass, be patient, give yourself the time to heal.

Remember: A little consideration, a little thought for others, makes all the difference --Eeyore from "Winnie-The- Pooh."

From: dominie@groups .com [mailto:dominie] On Behalf Of heidiSent: Sunday, October 26, 2008 10:32 AMdominie@groups .comSubject: Re: PAIN

>Sounds like a very very severe fibromyalgia flare. I take a warm bath with some epsom salts. Then look at what you can still do that day no matter how small that is.Dominie has it on her main page www-fms.help. com A letter to normals and also her fibromyalgia story too. but for now concerate on what you can do and get up take a warm bath with epson salts then get up fix a cup of warm tea too. If you have to take some magnesium with malic acid too that is a OTC vitamin that helps some people with fibro too.heidi> Has anyone experienced this or is this unusual. For the past 8 days > now, I've been bedridden with such severe pain that it just hurts > unbelievably everywhere. It hurts to straighten my arms, it hurts to

> bend my arms, as far as my elbows and then the inner portion, the same > goes for my legs where it hurts if I straighten then if I bend, where > my knees hurt and then the backside of my knees. My shoulders as well. > My fingers, wrists, back, neck, buttocks, etc. Along with this I have > major tingling mainly in my legs, but also in my fingers. > > The more severe pain is usually in the a.m. but it doesn't seem to go > away but eventually by the evening I'm well enough to go to the living > room for a couple of hrs, but still the pain is severe.> > It seems that the longer I have FMS the worse it's getting. Is this > normal? I've only been diagnosed with this within the past year but > believe that I've had this since the 80's, and I'm still trying the > find the "right" doctor to treat me so I'm not on the proper meds

for > sure. Since I'm in bed all day my family just doesn't understand and > I'm getting, "you're still in bed"? kinda thing, which hurts, but > there's nothing I can do.> > Thanks everyone for your help and input!>

October 26, 2008

Thank you for enlightening me about these two other possible conditions...it came at a perfect time as I go to my Rheumo tomorrow. This will only be the 2nd time I'm seeing him and so far not impressed, but I'll definitely talk to him about these two possibilities. I'm curious as to what type of testing they can do to determine whether you have this or not? I thought I've had all the testing there is to have done but maybe not. Thanks so much for caring enough to respond.

From: memommy1947 <MEMOMMY1947@...>Subject: Re: Re: PAINdominie Date: Sunday, October 26, 2008, 1:04 PM

It could be a fibro flare, but there are also other conditions that can do this. I have 2 of them, one is Myofascial Pain Syndrome, the best treatment is to find a message therapist to help release it, they can then show you how to do some of the release on home. That is how I manage mine.

The other condition is Polymyalgia Rhuematica, which causes pain in the shoulders and pelvic area, which can affect the legs and arms. I went through pain like this and my doctors at that time just kept telling me it was the fibro. I finally decided to go to a rhuematologist and he did testing and then diagnosed me with it. Treatment for this consist of steroids, or mexthotrexate or a combination of both. The Dr and I chose the steroid route, as I have worked with patients on methotrexate, and you have to have frequent blood test as it can lower your white count and can cause other problems, it started as a cancer drug and has been approved for other uses.

YOu can google it if you like.

But don't automatically assume that it is a fibro flare.

Too many fibromites do this and then cause more problems as they wait so long before consulting the physician.

Sandie

> Has anyone experienced this or is this unusual. For the past 8

days

> now, I've been bedridden with such severe pain that it just hurts

> unbelievably everywhere. It hurts to straighten my arms, it hurts

to

> bend my arms, as far as my elbows and then the inner portion, the

same

> goes for my legs where it hurts if I straighten then if I bend,

where

> my knees hurt and then the backside of my knees. My shoulders as

well.

> My fingers, wrists, back, neck, buttocks, etc. Along with this I

have

> major tingling mainly in my legs, but also in my fingers.

>

> The more severe pain is usually in the a.m. but it doesn't seem to

go

> away but eventually by the evening I'm well enough to go to the

living

> room for a couple of hrs, but still the pain is severe.

>

> It seems that the longer I have FMS the worse it's getting. Is

this

> normal? I've only been diagnosed with this within the past year

but

> believe that I've had this since the 80's, and I'm still trying the

> find the "right" doctor to treat me so I'm not on the proper meds

for

> sure. Since I'm in bed all day my family just doesn't understand

and

> I'm getting, "you're still in bed"? kinda thing, which hurts, but

> there's nothing I can do.

>

> Thanks everyone for your help and input!

>

------------ --------- --------- ------

October 26, 2008

Chad

I am like you in that they only lowered it and never took it away. over time my

ability to deal with pain has gone up but when it breaks threw it is

unbelievable and like you I feel they think the same thing I am just looking to

get drugs and there is noting wrong . I have felt that way because all the test

they run end up showing nothing . it is so fun to have stills . well that's

about all I can add I know now help but wanted you to know that yes your not

alone . o ya I also am not on any of the drugs you are now days all mine are

very old school and cheap LOL

my best

the rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

Stills ; An illness I know to well!

To learn about Stills http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

In the old days a man who saved money was a miser; nowadays he's a wonder.

~Author Unknown

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

October 26, 2008

Chad

I am like you in that they only lowered it and never took it away. over time my

ability to deal with pain has gone up but when it breaks threw it is

unbelievable and like you I feel they think the same thing I am just looking to

get drugs and there is noting wrong . I have felt that way because all the test

they run end up showing nothing . it is so fun to have stills . well that's

about all I can add I know now help but wanted you to know that yes your not

alone . o ya I also am not on any of the drugs you are now days all mine are

very old school and cheap LOL

my best

the rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

Stills ; An illness I know to well!

To learn about Stills http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

In the old days a man who saved money was a miser; nowadays he's a wonder.

~Author Unknown

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

October 26, 2008

Chad

I am like you in that they only lowered it and never took it away. over time my

ability to deal with pain has gone up but when it breaks threw it is

unbelievable and like you I feel they think the same thing I am just looking to

get drugs and there is noting wrong . I have felt that way because all the test

they run end up showing nothing . it is so fun to have stills . well that's

about all I can add I know now help but wanted you to know that yes your not

alone . o ya I also am not on any of the drugs you are now days all mine are

very old school and cheap LOL

my best

the rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

Stills ; An illness I know to well!

To learn about Stills http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

In the old days a man who saved money was a miser; nowadays he's a wonder.

~Author Unknown

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)

October 26, 2008

My first visit with Rhuemy, he examined me and told me that I definitely had FMS, but something else was going on. He ordered Sed Rates, C reactive protein, Nerve conduction test of my arms, thyroid, and a special protein test to rule multiple myeloma, since my Dad his grandma both died from it. All test were negative except the sed rate and c reactive protein were extremely high,these are test to check for inflammation, and he kept questioning me on my stiffness in the am and how long it lasted. Mine mostly lasted 3-4 hours, plus often I would fall back in the bed while attempting to get up, sometimes it took 2 or 3 attempts to get up on my feet. C reactive Protein is also used on cardiac patients when MI is suspected. Sandie -- Re: Re: PAINdominie Date: Sunday, October 26, 2008, 1:04 PM It could be a fibro flare, but there are also other conditions that can do this. I have 2 of them, one is Myofascial Pain Syndrome, the best treatment is to find a message therapist to help release it, they can then show you how to do some of the release on home. That is how I manage mine. The other condition is Polymyalgia Rhuematica, which causes pain in the shoulders and pelvic area, which can affect the legs and arms. I went through pain like this and my doctors at that time just kept telling me it was the fibro. I finally decided to go to a rhuematologist and he did testing and then diagnosed me with it. Treatment for this consist of steroids, or mexthotrexate or a combination of both. The Dr and I chose the steroid route, as I have worked with patients on methotrexate, and you have to have frequent blood test as it can lower your white count and can cause other problems, it started as a cancer drug and has been approved for other uses. YOu can google it if you like. But don't automatically assume that it is a fibro flare. Too many fibromites do this and then cause more problems as they wait so long before consulting the physician. Sandie > Has anyone experienced this or is this unusual. For the past 8 days > now, I've been bedridden with such severe pain that it just hurts > unbelievably everywhere. It hurts to straighten my arms, it hurts to > bend my arms, as far as my elbows and then the inner portion, the same > goes for my legs where it hurts if I straighten then if I bend, where > my knees hurt and then the backside of my knees. My shoulders as well. > My fingers, wrists, back, neck, buttocks, etc. Along with this I have > major tingling mainly in my legs, but also in my fingers. > > The more severe pain is usually in the a.m. but it doesn't seem to go > away but eventually by the evening I'm well enough to go to the living > room for a couple of hrs, but still the pain is severe. > > It seems that the longer I have FMS the worse it's getting. Is this > normal? I've only been diagnosed with this within the past year but > believe that I've had this since the 80's, and I'm still trying the > find the "right" doctor to treat me so I'm not on the proper meds for > sure. Since I'm in bed all day my family just doesn't understand and > I'm getting, "you're still in bed"? kinda thing, which hurts, but > there's nothing I can do. > > Thanks everyone for your help and input! > ------------ --------- --------- ------

October 26, 2008

Thank you, I'm seeing my Rheumo in the a.m. to go over the blood tests that he ordered. This is only my second time seeing this Rheumo so hopefully will have more answers tomorrow. Thanks again for the information.

From: memommy1947 <MEMOMMY1947@ aol.com>Subject: Re: Re: PAINdominie@groups .comDate: Sunday, October 26, 2008, 1:04 PM

It could be a fibro flare, but there are also other conditions that can do this. I have 2 of them, one is Myofascial Pain Syndrome, the best treatment is to find a message therapist to help release it, they can then show you how to do some of the release on home. That is how I manage mine.

The other condition is Polymyalgia Rhuematica, which causes pain in the shoulders and pelvic area, which can affect the legs and arms. I went through pain like this and my doctors at that time just kept telling me it was the fibro. I finally decided to go to a rhuematologist and he did testing and then diagnosed me with it. Treatment for this consist of steroids, or mexthotrexate or a combination of both. The Dr and I chose the steroid route, as I have worked with patients on methotrexate, and you have to have frequent blood test as it can lower your white count and can cause other problems, it started as a cancer drug and has been approved for other uses.

YOu can google it if you like.

But don't automatically assume that it is a fibro flare.

Too many fibromites do this and then cause more problems as they wait so long before consulting the physician.

Sandie

> Has anyone experienced this or is this unusual. For the past 8

days

> now, I've been bedridden with such severe pain that it just hurts

> unbelievably everywhere. It hurts to straighten my arms, it hurts

to

> bend my arms, as far as my elbows and then the inner portion, the

same

> goes for my legs where it hurts if I straighten then if I bend,

where

> my knees hurt and then the backside of my knees. My shoulders as

well.

> My fingers, wrists, back, neck, buttocks, etc. Along with this I

have

> major tingling mainly in my legs, but also in my fingers.

>

> The more severe pain is usually in the a.m. but it doesn't seem to

go

> away but eventually by the evening I'm well enough to go to the

living

> room for a couple of hrs, but still the pain is severe.

>

> It seems that the longer I have FMS the worse it's getting. Is

this

> normal? I've only been diagnosed with this within the past year

but

> believe that I've had this since the 80's, and I'm still trying the

> find the "right" doctor to treat me so I'm not on the proper meds

for

> sure. Since I'm in bed all day my family just doesn't understand

and

> I'm getting, "you're still in bed"? kinda thing, which hurts, but

> there's nothing I can do.

>

> Thanks everyone for your help and input!

>

------------ --------- --------- ------

October 26, 2008

Chad, you are far from the first in this situation and far from the last,

but you have asked an outstanding question as it has affected almost each &

everyone of us on many, many occasions.

First off, be totally honest with yourself or nothing will ever work.

Once you establish this with yourself you can begin your " personal assault "

on our " world class " (tongue in cheek) healthcare system.

The first and most important thing you need to do is to start a daily

journal. I started mine after my 2nd hospitalization in 2 weeks as the

symptoms were beyond devastating and the Dr's had no simple answer. What the

journal should include is a day by day analysis of 1) how you are feeling,

note any specific pains, swelling, temperature (check every 4 hours). 2)

anything new, such as a sore throat, different swollen or painful joint,

headaches, etc... 3) this is an area that really requires total honesty on

your part, pain levels and pain management......note your pain level (use

the 1<>10 scale) prior to taking anything, after 30 minutes to an hour of

taking a pain med write your pain level down again, and try to give an

honest evaluation of how well along with how long the pain relief lasts. DO

NOT TAKE any pain meds unless you have pain, as you can unknowingly become

addicted to it which opens a can of worms you want to avoid at all costs. 4)

Write a short & general evaluation of how your day went. This can include

feeling horrible, feeling well, in the middle...etc....BUT I also would add

things that I did or couldn't do and make note of any questions you may have

as you will almost always forget to ask them 3 weeks later when you actually

see your Dr.

I still have a copy of my journal, which contains almost 900 entries on

a disc. My PCP, RD and Pain Management Dr. also have complete printed out

copies of this. I didn't stop writing it until I was finally diagnosed with

New Daily Persistent Headache (Headaches have been the ugliest part of my

Stills, although they are closely followed by a decent number of other

medical conditions) as I felt no need to keep adding to it as I have been

everywhere and no one has a solution for me and I'm quite sure I'm destined

to suffer...so I try to enjoy the things that I can still enjoy as often as

possible, even on those days when I feel like crawling in a hole and dying.

Each of my Dr's was quite impressed with the journal/diary. One thing it

accomplished at the " Local Resort " (hospital) was rid me of the Dr's that

treat you like a drug seeker as my PCP assured them I am not, nor have I

ever been. Unfortunately, you may still encounter this type of treatment

regardless of how you handle yourself as a decent amount of Dr's are

convinced that anyone who " asks " for pain relief is a drug seeker. Few

things in the world piss me off more than this, especially when one

considers that anyone can go down to any bad part of town and buy ANYTHING

UNDER THE SUN on the street which means that somewhere there are Dr's that

are handing these types of meds out like candy. I have had one Dr by the

throat (would have nailed him also if the janitor didn't grab my arm before

I could) as I have never in my life tried to get a medication to use for

" fun " . Add to this that the only thing that ever seemed to make me feel what

I would " term " " high " is Dilaudid through an I.V......and that only happened

the first few times I had it. Now when I do get it (It's amazingly been

over a year as after 31 " resort vacations " that averaged 7-9 days per

" vacation " I am so sick of them that I absolutely REFUSE to go unless I have

no other choice. The bad part is that I'm very close to that stage and have

been for the past 6 weeks but have 2 more weeks until the team I'm a coach

on can win the Super-Bowl. I've been coaching the majority of these kids

since they were 5 for the past 5 years and I want them to win the big game

probably as bad if not worse than they do. On a side note, we finished the

regular season today, finally defeating the only team we've never beaten in

the previous 5 years (knocked them out of the playoffs too!) and finished

the season in 1st place with a 9-1 record. We play the 4th seed next week

and should we win will play the Super-Bowl the following week. Sorry for

straying off topic.

I also highly recommend forcing your Dr's to work together as a team of

sorts. I don't mean literally making them get together and work on your case

like it sounds, but what I've been doing since I became sick is everytime I

go for any blood work or ANY medical testing I have each of their fax #'s in

my wallet and have a copy sent to each. This has many advantages, the best

is the possibility of one Dr. recognizing something another may miss even

though that may not be the reason you see that particular Dr. I've had that

occur only once, but it was a definite plus!

To give you some insight as to the degree of pain I've encountered I have

a Morphine pump implant (the type I have zero control over) that goes into

the base of my spine. Prior to that I could not stand...let alone walk. The

added bonus to it being in the spine is that the morphine doesn't make it

into the bloodstream, so I am able to function normally even though I will

be on Morphine for life. When my headaches become unbearable the only thing

that truly works is 4mg of Dilaudid every 3 hours through an IV. My

understanding is the normal dosage of that is 1 mg/4 hours. For some reason

Morphine will not touch my headaches, and what really screws me up (in my

own mind) is that if given enough Morphine through an IV I become incredibly

violent and out of control....which I recall absolutely none of, but it has

occurred 4 or 5 times to me (once from a headache and the rest from

surgeries). I do have on hand Oxycontin 40mg (I was originally prescribed

(after a year and change of pure HELL) 160 mg Oxycontin pills...which they

quit making at about the same time. I was then on Oxy 80 mg, and now my pain

Dr. is more comfortable prescribing the 40 mg with the knowledge that I will

bump up as high as 120mg if I truly feel I have to. Being that they will not

reduce my headaches anywhere near as well as Dilaudid I have only taken that

dosage 1 time, and that was when I was camping in New York on Lake Ontario,

and we were 60 miles from shore. I also have (and use most often) Roxicodone

15mg. Roxicodone is the same as Oxy EXCEPT that it is INSTANT RELEASE. One

thing I certainly learned a long time ago about dealing with and attempting

to control pain is to jump on it before it gets too bad, which had I known

probably would have 3-5 fewer resort stays. I do have Fentynal Patches (75

mg) but have not used them in at least a year as they turn me into a zombie,

and I am uncomfortable like that...especially as they don't seem to relieve

the headaches that accompany any serious body pains I may have. I also have

Valium 10mg and do use those in conjunction with either the Oxy or Roxi in

an attempt to keep myself calm and give myself the ability to lay down with

a gigantic 5 lb block of ICE covering my face. Aside from that I'm on 14 or

15 different scripts, can't get off of Prednisone & have Osteoporosis after

3.5 years (I've " officially " had Stills since Jan of '04). I'm also on

Kineret & Forteo (inject ables).

I know this may be a bit hard to follow, but I'm really feeling rotten. I

hope I was able to convey my thoughts well enough for you to get a handle

about what I'm trying to put across. If you have any questions what so ever,

feel free to email me on list, or if you prefer off-list at

kbonanny@...

Please keep in mind that depending on how I'm doing I may at times go

days without checking my email...buy you can rest assured that I will try to

answer any questions or help you in anyway possible when I do get to your

message.

I really hope this helps as I can't possibly explain how beneficial that

journal was to myself & my Dr's. It is also a permanent part of my medical

records with at least 4 different Dr's at 4 different institutions.

Hope everything works out for the better for you, Kirk.

PS....Some Dr's up front will tell you that they will not issue pain meds,

but if they are a Dr. that can help you (such as my RD who I wouldn't trade

in for the world) stay with them. Most Dr's (after a while at least) are

going to prefer that you have a pain management Dr anyway. The most

important thing you can do on the front of selecting Dr's is research, and

lots of it! I especially recommend that with pain Dr's, as if you get one

that won't listen and switch pain Dr's frequently you definitely will e

looked at as a seeker, no matter how wrong it is....that's the way they play

" the game " .

Adios, Kirk.

>

> I have a question and I think that it has been discussed on this board.

> I was diagnosed with

> Still's in Jan 08. My joints don't really get inflamed much at all,

> sometimes they get warm and

> I still get some rashes. But my pain has never really gone away. Mostly in

> my knees and

> ankles. I am going to a pain clinic and they started me on Percocet

> 7.5/500... One 3 times a

> day, but that does do much at all, to be honest I have to take 2 of them at

> once to get any

> relief. I go back near the end of November for a revaluation, I'm hoping

> they put me on

> something longer lasting. I also take Enbrel, I haven't seen to much

> improvement with that its

> been about 4 months. I take the injection once a week 50mg. Prednisone is

> 25mg per day.

> Sometimes the pain get so bad that I have to go into the ER. I feel

> sometimes going in there

> that they look at you like your a addict.. But they have never said

> anything. Does anyone else

> have these same similar pains?

>

--

Everything in life sucks except things that should!

October 26, 2008