Re: Sorry I need to vent-I am hurting

[Guest guest]

-Hi Pat,

It can be so frustating to change rheums. the first rheum puts you

on meds that help control swelling and the second rheum looks at you,

doesn't see swelling, and attributes pain to fibro rather than pa.

The pain in neck (besides the doc...ew sorry) and lower spine can be

pa and as your first rheum said...the fibro is secondery....keep

fighting to have the pa treated!! Or at least looked at for possible

pa.

I am concerned about you trying to lift the students as well...I

don't know if you can come up with another option.

take Care,

Marti

-- In , " pfried520 "

<Pfried520@a...> wrote:

>

>

> Hi Everyone,

>

> I was diagnosed with Ps last year and secondary Fibro and Myofacial

> Pain syndrome three months ago. I have had psoriasis for 30

years.My

> orginal rhuemy I liked and he had me on Enbrel and MTX 8 Pills a

week

> and celebrex, folic acid. Then my insurance changed and so did my

> Rhuemy.

>

> In July when I went to see the new one, I had no psorisis at all

and

> was feeling pretty good except for my hands. My thumb on both hands

> are very painful. I was supposed to get a cortisone shot but this

> rhumey wanted to wait 3 more months. He added the Fibro to my

> diagnosis. I have bad pain and stiffness in my lower back.

>

> Last weekend, I could hardly move my neck. By Monday, knowing it

is

> hard to reach this rhumy, I went to the er. They gave me Flexeril

and

> said goodbye. I called the Rhumy when I got home 9am. You have to

> leave a message. At 5pm she called me back and took the info to

relay

> to the doctor. She said she would call me back. I called again on

> Tues when I didn't hear from her and left another message.

>

> By Wednesday, I still didn't hear anything so I went to my GP and

she

> gave me Pain meds and said stop taking Flexeril becuase it doesn't

> help.

>

> Wednesday the nurse finally called back, and said the doctor wants

to

> know if you still take the soma at night. I said yes. In July, he

> took me off the MTX. He put me on Soma and Ambien at night to

sleep,

> put me on 1200mgs of Daypro during the day. I am still on Enbrel.I

> guess he figured that if I didn't have psoriasis anymore that he

> could take me off the MTX.

>

> Anyway, on wed the nurse calls to ask me about the soma and says Dr

> wants to know if you ever took pain meds. I said my Gp just gave me

> Vicodin1-2 tablets every four hours. I said I am not taking that

> much because it is too strong. The Gp put me out of work until

monday.

>

> The Rhuemy nurse said I let him know about the vicodin and call you

> back. Well now it is Thurs. She calls me and says Dr says to take a

> vicodin at bedtime also.

>

> I really can't funtion on all this pain meds. The psoriasis is

coming

> back on my legs arms, and feet. I feel pain in my lower spine and

> neck, although I can now move my neck which I couldn't before

because

> the pain was so bad. My skin is looking bad again and all they can

do

> is give me more Pain meds?

>

> In addition, my husband doesn't believe any of it and thinks I am

> crazy. I don't get alot of redness or swelling and I think that

makes

> it hard for people to know how much pain you are in. I feel like I

> am alone with my pain. My kids (12 and 14) were mad becuase i

> couldn't drive this week, and they had to help a bit. I go back to

> work Tuesday in a developemental classroom. I am an aide and love

my

> job but I don't know if I can lift these kids and bend and get up

and

> down from the floor with them.

>

> I would love to change jobs because the people at work are covering

> for me. They try to do the heavy stuff. This is not fair to them.

> They are wonderful people and very caring,but my husband would have

a

> fit if I mentioned leaving. We don't make much money and we can

> barely make it week to week. I am not sure of what to do.

>

> Thanks for letting me vent about my new Rhuemy and my pain.

>

> You are a wonderful group of people.

>

> Pat

[Guest guest]

Hi Pat,

Just a note to say I am so sorry things are so tough right now! Know that we

all are thinking of you and very much understand where you are at...

It just seems crazy that some doctors are the way they are, but it seems they

are a reflection of the population as a whole and it is a very mixed bag! Some

people as well as some doctors are very caring, compassionate and good at what

they do ~ while others are not, is just a fact, albeit a sad one.

To that end, I think you have to find a doctor you trust ~ and one that can help

you. Was there a reason you had to leave the first one? Did the insurance

company force this issue? Regardless of the answer, my suggestion is to fight

for what you know and need. If you're stuck with the current doctor, push for

what you know works. Find out why this guy in white won't give it to you ~

perhaps there is a valid reason, but perhaps not. In the meantime, work to find

a new doctor, a better one. Fight the insurance company if need be... It's so

much work and energy and it just somehow seems that it's already hard enough to

deal with this disease why does this have to be added on, but it seems in many

cases it is part of our struggle.

Perhaps showing your husband some of the posts ~ where people talk about the

impact and pain of this disease would help him begin to understand? Might not

help, but perhaps it would a tiny bit.

Best of luck to you as you find your path through this...

pfried520 <Pfried520@...> wrote:

Hi Everyone,

I was diagnosed with Ps last year and secondary Fibro and Myofacial

Pain syndrome three months ago. I have had psoriasis for 30 years.My

orginal rhuemy I liked and he had me on Enbrel and MTX 8 Pills a week

and celebrex, folic acid. Then my insurance changed and so did my

Rhuemy.

In July when I went to see the new one, I had no psorisis at all and

was feeling pretty good except for my hands. My thumb on both hands

are very painful. I was supposed to get a cortisone shot but this

rhumey wanted to wait 3 more months. He added the Fibro to my

diagnosis. I have bad pain and stiffness in my lower back.

Last weekend, I could hardly move my neck. By Monday, knowing it is

hard to reach this rhumy, I went to the er. They gave me Flexeril and

said goodbye. I called the Rhumy when I got home 9am. You have to

leave a message. At 5pm she called me back and took the info to relay

to the doctor. She said she would call me back. I called again on

Tues when I didn't hear from her and left another message.

By Wednesday, I still didn't hear anything so I went to my GP and she

gave me Pain meds and said stop taking Flexeril becuase it doesn't

help.

Wednesday the nurse finally called back, and said the doctor wants to

know if you still take the soma at night. I said yes. In July, he

took me off the MTX. He put me on Soma and Ambien at night to sleep,

put me on 1200mgs of Daypro during the day. I am still on Enbrel.I

guess he figured that if I didn't have psoriasis anymore that he

could take me off the MTX.

Anyway, on wed the nurse calls to ask me about the soma and says Dr

wants to know if you ever took pain meds. I said my Gp just gave me

Vicodin1-2 tablets every four hours. I said I am not taking that

much because it is too strong. The Gp put me out of work until monday.

The Rhuemy nurse said I let him know about the vicodin and call you

back. Well now it is Thurs. She calls me and says Dr says to take a

vicodin at bedtime also.

I really can't funtion on all this pain meds. The psoriasis is coming

back on my legs arms, and feet. I feel pain in my lower spine and

neck, although I can now move my neck which I couldn't before because

the pain was so bad. My skin is looking bad again and all they can do

is give me more Pain meds?

In addition, my husband doesn't believe any of it and thinks I am

crazy. I don't get alot of redness or swelling and I think that makes

it hard for people to know how much pain you are in. I feel like I

am alone with my pain. My kids (12 and 14) were mad becuase i

couldn't drive this week, and they had to help a bit. I go back to

work Tuesday in a developemental classroom. I am an aide and love my

job but I don't know if I can lift these kids and bend and get up and

down from the floor with them.

I would love to change jobs because the people at work are covering

for me. They try to do the heavy stuff. This is not fair to them.

They are wonderful people and very caring,but my husband would have a

fit if I mentioned leaving. We don't make much money and we can

barely make it week to week. I am not sure of what to do.

Thanks for letting me vent about my new Rhuemy and my pain.

You are a wonderful group of people.

Pat

[Guest guest]

---

Hi Pat,

I feel for you!! I know what you mean about work, and needing the

money and job and the kids, etc. I " lost " my job back in 1999 due to

my health-my kids were about the same age as yours are now. I feel

so bad that I missed out with everything with this awful disease. I

did find out something with my Rheumy though-if I go to my appt. and

say everything is okay just because I am having a good day that day-

the next day the bottom might fall out and I might have an

awful " flare-up " so don't just speak about how you feel at the

moment. I even write down sometimes things I have experience during

the month. My last visit as I was walking out of the exam room I

said that I look like an 80 old lady with the walker and the way I

was walking slumped over and feeling awful and my Rheum said that

maybe next year I will feel my age finally -43!! I pray that I will!!

I will pray for you. What I do is take one day at a time; that is

all you can do. Take Care and write often. God Bless, Sue.

In , " pfried520 " <Pfried520@a...>

wrote:

>

>

> Hi Everyone,

>

> I was diagnosed with Ps last year and secondary Fibro and Myofacial

> Pain syndrome three months ago. I have had psoriasis for 30

years.My

> orginal rhuemy I liked and he had me on Enbrel and MTX 8 Pills a

week

> and celebrex, folic acid. Then my insurance changed and so did my

> Rhuemy.

>

> In July when I went to see the new one, I had no psorisis at all

and

> was feeling pretty good except for my hands. My thumb on both hands

> are very painful. I was supposed to get a cortisone shot but this

> rhumey wanted to wait 3 more months. He added the Fibro to my

> diagnosis. I have bad pain and stiffness in my lower back.

>

> Last weekend, I could hardly move my neck. By Monday, knowing it

is

> hard to reach this rhumy, I went to the er. They gave me Flexeril

and

> said goodbye. I called the Rhumy when I got home 9am. You have to

> leave a message. At 5pm she called me back and took the info to

relay

> to the doctor. She said she would call me back. I called again on

> Tues when I didn't hear from her and left another message.

>

> By Wednesday, I still didn't hear anything so I went to my GP and

she

> gave me Pain meds and said stop taking Flexeril becuase it doesn't

> help.

>

> Wednesday the nurse finally called back, and said the doctor wants

to

> know if you still take the soma at night. I said yes. In July, he

> took me off the MTX. He put me on Soma and Ambien at night to

sleep,

> put me on 1200mgs of Daypro during the day. I am still on Enbrel.I

> guess he figured that if I didn't have psoriasis anymore that he

> could take me off the MTX.

>

> Anyway, on wed the nurse calls to ask me about the soma and says Dr

> wants to know if you ever took pain meds. I said my Gp just gave me

> Vicodin1-2 tablets every four hours. I said I am not taking that

> much because it is too strong. The Gp put me out of work until

monday.

>

> The Rhuemy nurse said I let him know about the vicodin and call you

> back. Well now it is Thurs. She calls me and says Dr says to take a

> vicodin at bedtime also.

>

> I really can't funtion on all this pain meds. The psoriasis is

coming

> back on my legs arms, and feet. I feel pain in my lower spine and

> neck, although I can now move my neck which I couldn't before

because

> the pain was so bad. My skin is looking bad again and all they can

do

> is give me more Pain meds?

>

> In addition, my husband doesn't believe any of it and thinks I am

> crazy. I don't get alot of redness or swelling and I think that

makes

> it hard for people to know how much pain you are in. I feel like I

> am alone with my pain. My kids (12 and 14) were mad becuase i

> couldn't drive this week, and they had to help a bit. I go back to

> work Tuesday in a developemental classroom. I am an aide and love

my

> job but I don't know if I can lift these kids and bend and get up

and

> down from the floor with them.

>

> I would love to change jobs because the people at work are covering

> for me. They try to do the heavy stuff. This is not fair to them.

> They are wonderful people and very caring,but my husband would have

a

> fit if I mentioned leaving. We don't make much money and we can

> barely make it week to week. I am not sure of what to do.

>

> Thanks for letting me vent about my new Rhuemy and my pain.

>

> You are a wonderful group of people.

>

> Pat

[Guest guest]

Hi Marti,

Thanks for your kind words of understanding. I have an appointment at

the end of the month and the nurse said that dr won't change appts

unless he feels it is absolutely necessary. So I will wait a few more

weeks. I really think going off the MTX was a mistake. I think that

was keeping the psoriasis at bay, without it, it is returning. I will

definitely talk to him about it when I finally get to see him.

Also, I get very confused on what is fibro pain and what is PA. All I

know is pain is pain and you can only take so much before you ask for

help. We are not complainers and whiners. It is only when the pain

and stiffness reaches a very high point do we ussually say something.

Thanks

Pat

>

>

> -Hi Pat,

>

> It can be so frustating to change rheums. the first rheum puts you

> on meds that help control swelling and the second rheum looks at

you,

> doesn't see swelling, and attributes pain to fibro rather than pa.

> The pain in neck (besides the doc...ew sorry) and lower spine can

be

> pa and as your first rheum said...the fibro is secondery....keep

> fighting to have the pa treated!! Or at least looked at for

possible

> pa.

>

> I am concerned about you trying to lift the students as well...I

> don't know if you can come up with another option.

>

> take Care,

>

> Marti

[Guest guest]

Hi ,

Thanks so much for listening. I had to switch my medical dr and

rhuemy because they didn't accept me new insurance, which started in

July. It was pretty scary since I knew my GP a long time and she knew

me very well. The first Rhuemy was good but the office staff and his

nurse were fantastic. The new Rhuemy is good but the this waithing

two days for returned calls is not good. I will talk to Rhuemy at the

end of the month when I see him.

As far as my husband goes he has been to this site. When I first got

diagnosed he was very supportive. Things have changed. I guess I am

going to take one day at a time and see what happens.

Pat

>

> Hi Pat,

>

> Just a note to say I am so sorry things are so tough right now!

Know that we all are thinking of you and very much understand where

you are at...

>

> It just seems crazy that some doctors are the way they are, but it

seems they are a reflection of the population as a whole and it is a

very mixed bag! Some people as well as some doctors are very

caring, compassionate and good at what they do ~ while others are

not, is just a fact, albeit a sad one.

>

> To that end, I think you have to find a doctor you trust ~ and one

that can help you. Was there a reason you had to leave the first

one? Did the insurance company force this issue? Regardless of the

answer, my suggestion is to fight for what you know and need. If

you're stuck with the current doctor, push for what you know works.

Find out why this guy in white won't give it to you ~ perhaps there

is a valid reason, but perhaps not. In the meantime, work to find a

new doctor, a better one. Fight the insurance company if need be...

It's so much work and energy and it just somehow seems that it's

already hard enough to deal with this disease why does this have to

be added on, but it seems in many cases it is part of our struggle.

>

> Perhaps showing your husband some of the posts ~ where people talk

about the impact and pain of this disease would help him begin to

understand? Might not help, but perhaps it would a tiny bit.

>

> Best of luck to you as you find your path through this...

>

>

[Guest guest]

Hi Sue,

All of you have been so kind as to let me vent and responding so

kindly. I have been doing this job in the same classroom for the past

five years and it is very difficult to think about giving it up. I am

a year away from finally getting my college degree. i am 45. I had to

take a leave this semester because work and school full time was too

much right now. I know I will finish school but I am getting a psych

degree and a teachers certification. I don't know what the future

holds becuase I felt my job in the district was going to help for a

job in teaching. I don't know if I can be an aide for another month

never my another year. I love the kids I work with. They give you

strenght and their hugs give you courage to go on even on a bad day.

I love seeing them learn. There disabilities are moderate to severe,

but they smile and go on. The problem is that the ladies I work with

are wonderful but have taken on alot of my duties because I cannot

physically do them all. Simple things like buttoning the kids pants

when they use the restroom, picking them off the floor, even holding

a pencil hand in hand is sometimes impossible becuase I am so stiff

and sore. I guess I have to look hard at my alternatives, and see

what I can do.

Thanks again for your kind words

pat

>

>

> ---

> Hi Pat,

>

> I feel for you!! I know what you mean about work, and needing the

> money and job and the kids, etc. I " lost " my job back in 1999 due

to

> my health-my kids were about the same age as yours are now. I feel

> so bad that I missed out with everything with this awful disease.

I

> did find out something with my Rheumy though-if I go to my appt.

and

> say everything is okay just because I am having a good day that day-

> the next day the bottom might fall out and I might have an

> awful " flare-up " so don't just speak about how you feel at the

> moment. I even write down sometimes things I have experience

during

> the month. My last visit as I was walking out of the exam room I

> said that I look like an 80 old lady with the walker and the way I

> was walking slumped over and feeling awful and my Rheum said that

> maybe next year I will feel my age finally -43!! I pray that I

will!!

>

> I will pray for you. What I do is take one day at a time; that is

> all you can do. Take Care and write often. God Bless, Sue.

[Guest guest]

Hi Pat and welcome,

Sounds like you are being messed about a bit. Its a pity that you had to

stop seeing a Rheumy you were happy with.

I hope your new Rheumy can turn things around for you again sooner rather

than later.

It is hard enough trying to deal with this every day without feeling as if

those closest to you don't believe you. I don't have that problem but I feel

for you when you say that you feel as if you are on your own. It would be a

good thing if he were to look at some of the stuff posted here again. If you

look back in the recent archives you should be able to find a list of guidelines

for people with chronic pain or I should say for there families. Fran posts

this every so often for people with this kind of problem really. It serves

to remind our families of what we (and they) are dealing with. Fran might even

just post it again.

Good luck,