Re: Fibro pain-Anne

[Guest guest]

Anne,

I have been in a flair for almost a month and my PCP just gave me the name of

a new Rheumy. Like you, I have little faith that Dr's will help me and so I'm

afriad of even trying to go see this person. I don't know if I can take another

" I don't know what I can do for you " from a Dr.

Is there something that State Medicaid WILL pay for? Do they have a list of

meds that you and your Dr. can look at to decide what might help? I have a hard

time getting any meds too but started taking Lyrica and it seems to be helping

some.

Anyway, just wanted to tell you that I can relate and I feel your frustration.

I hope that you find some relief soon.

Take care,

Caitlin

Anne Suplee wrote:

Hi,

I also suffer with fibro and have since the early 1980's. Like you I have given

up on any hope of ever getting any help from doctors. I just recently had a

terrible experience with a rheumatologist who sat there and told that while he

believed conditions such as fibromyalgia and CFS exist he did not believe in

treating them... HUH???!!

Even when my primary physician tried to prescribe Ultram and Neurontin my health

insurance wouldn't pay for it (I have state medicaid) on the grounds that those

prescriptions weren't indicated for Fibromylagia.

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[Guest guest]

Hi Caitlin,

It makes dealing with FMS a little easier when there's someone who

understands what it's like.

I'm considering changing PCP's because of the fact that she can never

recommend anyone. I've asked for recommendations for a new

cardiologist (I fired the last one he had the bedside manner of a bed

bug), rheumatologist, etc... and she never has any suggestions. The

only suggestion for a rheumatologist was a doctor I had seen and in

the beginning liked (I've seen a few articles and interviews done by

him but I won't mention any names).

He kept insisting I take Klonopin which I did try not once but twice.

I still think the first time I tried is what helped send me over the

edge a few years ago and I ended up spending a week in Bryn Mawr

Hospital's psychiatric ward. The second time I tried the Klonopin it

not helping at all with sleep (I was still waking up every few hours)

and it made me so groggy during the day I actually fell asleep behind

the wheel of my car while driving on I-95!! To this day I don't know

how I managed to put my flashers on and pull over to the shoulder.

State Medicaid sent letters both times they turned down payment for

Ultram and Neurontin, the only medications for pain for FMS they will

pay for are NSAID's (which of course don't help at all) or narcotic

pain relievers. I have been avoiding asking for narcotic pain

relievers for several reasons; I know the side effects, trouble with

withdrawal, risk of dependency, etc. and also I really don't want to

ask a doctor for them.

My PCP does not like prescribing them for chronic pain and then

there's the whole stigma that goes along with them. I'm afraid doctors

will think I'm just looking to get them to abuse them and I've heard

so many times over the years that my pain is all in my head... you

know what it's like.

I'm not sure about Lyrica and the doctors I have been seeing don't

want (or don't care) to learn anything about FMS. ACK it's so

frustrating but with a granddaughter on the way I have to kick myself

in the butt and do something (especially the heart disease) so I can

enjoy her!

Wishing you pain free days,

Anne

Caitlin Kennedy wrote:

I have been in a flair for almost a month and my PCP just gave me

the name of a new Rheumy. Like you, I have little faith that Dr's

will help me and so I'm afraid of even trying to go see this person.

[Guest guest]

Hello Anne,

Yes, I know how frustrating it is. I have gotten all that same feedback from

Docs (which means they gave me NOTHING!). I've tried Klonapin and I was the same

way. Made me too sleepy to think straight.

Its funny you say your Dr. doesn't recommend anyone. Thats all my PCP does, I

feel like he just shoves me off to this specialist and that one and won't

personally address any of my concerns. I know this is for the best but gets

expensive.

I really think you should reconsider taking pain meds. I have been on and off

them for years, never had any trouble getting off of them when I wanted to and

never took more amounts than what I needed. Some people have more addictive

personalities though. Anyway, you could always try them (I wouldn't recommend

Darvocet though, from what you've told me it will only make you groggy and

stomach hurt) on a very low dosage and see if they help. I firmly believe that

they are one of the ONLY things that keeps me functioning when I am in a flair

or have severe back pain.

I know what you mean about not wanting to ask the Dr. for narcotics though. I

am much the same way, but came to the point where I would loose my job, health

insurance, everything if I kept missing work. So I put my pride aside and asked

for something to help make it through the really bad days. I don't think I get

an adequate amount but anything is better than nothing when I'm hurting badly.

Its not your fault thats the only thing Medicaid will pay for, so you could

bring that up to the Dr. You need to function and live your life. You are not an

addict that is going to abuse or flake out on them. You just want to see if they

are going to help you sleep and function, take care of your family, etc. Yes,

there can be nasty side effects but its like that with all meds until you can

find one you tolerate.

Anyway, this is all just my humble opinion. Sorry if I am rambling. Going on

little sleep and am in fibro fog mode. You are right, you really should take

something for your heart. You would/could miss so much if you aren't around for

your precious grandchild.

Take care,

Caitlin

Anne Suplee < wrote:

I'm considering changing PCP's because of the fact that she can neverState

Medicaid sent letters both times they turned down NSAID's (which of course

don't help at all) or narcotic

pain relievers.

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[Guest guest]

Anne,

It's odd that your PCP won't refer you to any specialists. That's kind

of the main reason you have a PCP. You definately need to see a doctor

that is familiar with Fibro and has experience treating people with it.

As for Medicaid turning down coverage for Ultram, are they nuts?

Ultram is considered one of the best drugs for treating fibro. You can

probably appeal that decision but, it would help to have a

knowledgeable doctor in your corner. If you can't get them to

reconsider on the Ultram, a doctor can supply you with samples.

A few years ago when celebrex first came out my PCP really went to bat

for me with the insurance company but, they still wouldn't cover it.

So, he brought me a whole bag full of samples to try. Unfortunately, I

wasn't able to continue taking it because it upset my stomach but, he

was willing to keep giving me samples indefinately if it had worked for

me and I was able to tolerate it.

That's the kind of doctor you need. That's the kind of doctor we all

need. Unfortunately, they are too few in number.

SusieQ

Anne wrote:

I'm considering changing PCP's because of the fact that she can never

recommend anyone. I've asked for recommendations for a new

cardiologist and she never has any suggestions.

[Guest guest]

Hi ,

Sorry for the delay in replying, I have been without the use of my car since

the end of January (waiting for my refund check to come next week). I'm

exhausted because I have to take 3 buses to get to work everyday, it's

really been doing me in.

I've already decided I'm going to change PCP's. When I first starting going

to her she was great but lately it seems like she just doesn't want to be

bothered and I'm sick and tired of being pushed to the side. These last 3

weeks have been murder and I'm in so much pain that if I thought standing on

my head and spitting nickels would stop the pain, I'd do it! I tried Vioxx

a few years ago and it made me incredibly sick to my stomach. A friend of

mine had a bottle of Neurontin that didn't work for her so she gave it to

me. I knew I would have no problems with it because I did take the first

half bottle that Keystone permitted until they made their decision.

Unfortunately it doesn't help at all.

I have been trying for years to find a doctor who is familiar with FMS and

now that I have to use State Medicaid for health insurance it's worse. The

State's Medicaid, Keystone Mercy, even turned down paying for a prescription

for Norvasc! My cardiologist had me on a low dose to help prevent another

heart attack and to stop the occassional chest pains I get. I get them

because one of the veins used for my bypass surgery came from my arm, seems

the vein thinks it's still in my arm and contracts once in a while. Some

suit behind a desk at Keystone also decided to change my Synthroid to a

generic without even consulting my doctor. Now of course I have to go for

more blood work to make sure the generic is doing its job.

My PCP used to give me samples of my blood pressure meds and when I told her

that I found out if I ordered Ultram online from CVS that it was cheap

enough for me to pay for, she decided all of a sudden that even taking

Ultram wasn't good! It's just time to find someone else and hopefully

closer to home. My PCP is in South Philly where I used to live and although

I'm only about 20-25 minutes away it's a pain getting there and then finding

a parking spot only to feel like she doesn't even care. One of my friends,

, recommend a doctor that she sees and I'm going to give him a try. He

won't prescribe narcotics (but hopefully at least Ultram) but I'm not

worried about that, perhaps he'll be able to refer me to someone for the

FMS.

I've been very depressed the last month or so but since my daughter has

started having false labor pains and I realize my granddaughter will be here

soon well I decided to give myself a good swift kick in the butt and start

yelling loud enough for these idiot doctors to hear me!

Wishing you pain free days,

Anne

wrote:

It's odd that your PCP won't refer you to any specialists. That's kind

of the main reason you have a PCP.