Re: Fatigue, Refalen, and stupid docs......

October 23, 2001

- I agree with the moderator's note on that 100%. You need a new rheumy

who LISTENS to you. So what if your blood work doesn't show inflamation?? You

are in PAIN and should be able to get pain meds if you need them. If your GP

and rheumy both refuse, you could also ask for a referral to a pain management

doc.

Good luck - you sound pretty bad in your post and I hope things are looking up

for you SOON!

October 23, 2001

Hi, -

I sooo understand your frustration! I have suffered for many, many years.

I have been accused of being a drug addict, of being lazy and inventing my

pain, of having Munchaussen's Syndrome and on and on and on. All because my

blood work didn't match the expectations; all because nobody could put a

name on my condition. I have had multiple joint replacements and back

surgery to correct the severe degeneration that was happening while I waited

to find out what was wrong with me. I am on my third Rheumatologist and he

is a God send. He knows what is wrong; he knows I am in serious,

debilitating, crippling pain and he knows why and how to treat it.

Celebrex and other standard arthritis meds have the same action as a

placebo; in other words, nothing. I am now on Methotrexate, Paquenil and

Prednisone and I am finally getting some relief. I am having a little

trouble with side effects, but I must now decide if they are worth the risk.

At this point, I tend to think they are. I feel better than I have in many,

many years. No, it isn't gone, but after so many years of being afraid to

blink my eyes because of the spasm of pain it would send through me and

being told I was nuts, any amount of relief is very, very welcome.

I would try another Rheumatologist, then another, then another if that is

what it takes. There is someone out there who will listen and respond. God

bless you and good luck. And, there is someone with enough compassion to

give you some pain meds.

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October 23, 2001

Relafen is anotehr anti-inflammatory in a long list of anti-

inflammatories. The big question is what are you taking for your

stomach? Prevacid, etc...to save the throat and tummy?

I've said it before but starting Enbrel doesn't mean stopping all

other meds, especially quickly. It has taken me two years to stop my

Oxycontin and I am still taking Diclofenac twice a day plus the

Prevacid.

Upping the pred will lessen pain as well as getting a doctor to get

you some pain meds. If your Rheumy won't then talk to your primary

doc.No since in being pain. It just increases the fatigue.

PatB

> Ok, I am going on week #3 on Enbrel and so far nothing has changed

> much at all. I was able to cut down to 2.5mg of prednisone but I

am

> still in a lot of pain but I know that I need to get off of it. My

> rhuemy won't prescribe any pain meds. She told me to double my

> celebrex to 2 a day and was a bit annoyed with me when I told her

> that I couldn't because of my stomach (I have an ulcer thanks to

the

> prednisone - which my gp told me but my rhuemy argues cause she

said

> that on doses under 20mg you don't get stomach

problems.................. Anyways she said to come off

> the celebrex and try refelan (sp?). Has anyone tried this> Thanks,

>

> <<Moderator's note: : Sounds as if you need to fire your

current rhumy and find yet another one. There is absolutely no

excuse for them to not perscribe you pain meds if you're in pain. I

don't really think any blood test can accurately show how we feel

from day to day, in the end we are the best source of info on how we

feel for our docs. You're doctor is clearly not listening to you and

does not have your best interest at heart. I know sometimes it's

hard to find a doc that's a good fit, but never give up. Maybe

there's someone on this list that's somewhat close to you that can

suggest another doc? As for the fatigue, that's all part of the PA. :

( Hopefully the Enbrel will kick in soon and things will even out.

Best of luck to ya, keep venting! >>

October 23, 2001

, where do you live?? I am very lucky that my

first Rhumy is excellent. He is in Boston and I do

drive 1 hour to see him when I need to. He is also

great over the phone and sends any perscription to my

drug store over the phone.

I'm very sorry you have a bad one. If you tell us

where you live, maybe somebody knows of one in your

area.

-scott

--- lesliesa@... wrote:

> Ok, I am going on week #3 on Enbrel and so far

> nothing has changed

> much at all. I was able to cut down to 2.5mg of

> prednisone but I am

> still in a lot of pain but I know that I need to get

> off of it. My

> rhuemy won't prescribe any pain meds. She told me

> to double my

> celebrex to 2 a day and was a bit annoyed with me

> when I told her

> that I couldn't because of my stomach (I have an

> ulcer thanks to the

> prednisone - which my gp told me but my rhuemy

> argues cause she said

> that on doses under 20mg you don't get stomach

> problems). Oh of

> course I had to explain to her that I was taking

> 15mg (prednisone) a

> day for some time. Don't you just love it when one

> dr. tells you

> something and then another tries to refute it? She

> also said that

> she didn't understand why I am in so much pain

> because my bloodwork

> didn't show that much inflammation. So now I guess

> that she doesn't

> believe me. I don't know why - she is the doctor

> she should figure

> it out. Isn't that what I pay her for. Anyways she

> said to come off

> the celebrex and try refelan (sp?). Has anyone

> tried this? Right

> now I am so tired it physically hurts to keep my

> eyes open (which is

> bad because I am at work). I don't understand - I

> get 8-9 hours of

> sleep a night and still I am so tired. I hate these

> stupid doctors.

> This is the second rheumatologist I have been too

> and still no luck.

> I am just hoping that the Enbrel will hurry up and

> kick in. Sorry I

> just needed to vent.

>

> Thanks,

>

> <<Moderator's note: : Sounds as if you need

> to fire your current rhumy and find yet another one.

> There is absolutely no excuse for them to not

> perscribe you pain meds if you're in pain. I don't

> really think any blood test can accurately show how

> we feel from day to day, in the end we are the best

> source of info on how we feel for our docs. You're

> doctor is clearly not listening to you and does not

> have your best interest at heart. I know sometimes

> it's hard to find a doc that's a good fit, but never

> give up. Maybe there's someone on this list that's

> somewhat close to you that can suggest another doc?

> As for the fatigue, that's all part of the PA.

> Hopefully the Enbrel will kick in soon and things

> will even out. Best of luck to ya, keep venting!

> >>

>

__________________________________________________

October 23, 2001

Thank you for your kind words. It makes me sad that other people have to put up

with all this pain/frustration as I do, but I feel better knowing that I am not

alone.

>>> jdixon03@... 10/23/01 01:34PM >>>