Re: Introduction/Darlyene

[Guest guest]

Darlyene,

Your story brought back the feelings I had trying to get help with my back

pain. It took years and I had the same issue with referral necessary but my

doctor's staff wrote it for me. I finally have some relief but as time goes on

my back is wearing down more. I'll soon be 56 and I don't look forward to the

coming years. Hope only that a better way to treat pain comes along.

Good to meet you here,

Jennette

>Darlyene wrote:

>Thank you for accepting me into the group. I am not new to pain since I have

had Fibromyalgia since before it had a name but it is really getting old to have

pain on top of pain. I am 62, an RN for 33 years that still works on the floor 3

- 12 hour shifts a week, because I enjoy patient care.

[Guest guest]

>

> I found out many years ago that nothing helps the Fibro

> pain, so I don't take anything for it but I needed something

> done for this. I have to work. My husband is on Social

> Security and I have to have insurance because I also have

> diabetes and high blood pressure. So no matter what, I have

> to drag myself in to work. I am looking forward to

> retirement but won't be able to until I can get Medicare.

Hi Darlyene

Welcome to the group. I am so sorry you continue to suffer all these

years.

Is it possible for you to work shorter shifts? Perhaps one where you are up and

down instead of on your feet. Twelve hours on your feet as a long, long time. I

worked 20+ years as a nurse so I hear you.

You mentioned that nothing helps fibromyalgia pain, but have you had

a sleep study done? Poor sleep, as you no doubt know, can increase

or even cause fibromyagla pain.

I hope you find information and fellowship here.

Kaylene

one of the moderators

[Guest guest]

You mentioned that nothing helps fibromyalgia pain, but have you had

a sleep study done? Poor sleep, as you no doubt know, can increase

or even cause fibromyagla pain.

I hope you find information and fellowship here.

Kaylene

one of the moderators

Thank you for the welcome. I have had a sleep study and I do need a cpap but

unless they come out with a mask that just hovers over my face I don't think I

can tolerate it. I do have sleep problems. I also have had a Nap Study that

shows I could probably sleep 22 out of every 24 hours, my estimate. I have been

prescribed Provigil but my insurance won't cover it and WalMart's price is

$2000.00/90 day supply. Then my Pulmonary doctor ordered Nuvigil. They paid for

it 2 months and refused it. $2OO.00 per month. He is calling me to come in for

an appointment so I may just have to see what he has to offer. I don't have any

pulmonary diseases like COPD or Emphysemia, I just have a terrible time getting

into REM sleep and staying there. Wears me out.

I can't work any shorter shifts, they just aren't available. The hospital system

I work for is opening a new hospital 30 minutes closer to me July next year and

I am hoping I will be able to get into something different then. That will be

one year closer to retirement.

I think someone very very smart needs to invent a machine that shows pain and

the severity of it so it can be physically seen by doctors. That way it would be

like an xray showing a broken bone. Something that can been seen and not subject

to others objectivity. I do not like the Pain Number system used by hospitals

now either. You can't expect someone to truly believe that someone with a pain

scale of 10 is able to talk and laugh on the phone. It makes someone who is

really in severe pain less believable. It is just a bad system. We need

something to SHOW pain, otherwise it is like the Atom and doesn't exist if you

can't see it.

Everyday someone with chronic pain is stereotyped unfairly and refused the care

that is necessary to just get through the day because they aren't believed. It

changes your whole persona and turns you into someone that you don't even

recognize. It weakens your emotional wellbeing and makes you vulnerable.

I will get off of my soapbox now but these are just some of the things that I

have gone through. Until someone, somewhere invents that magic machine we will

have to help one another get through the tough days, weeks and months by

supplying a shoulder and the knowledge needed to get the help that we all need

and as humans, deserve. Bless you all.

Darlyene