Re: Fibro pain

[Guest guest]

In my experience people just don't believe it. I've been told, " Oh,

you couldn't possibly have pain all the time. You're exaggerating. "

Growing up I was well aware that it is, in fact, possible to have

pain 'all the time' since my father had Rheumatoid Arthritis. He never

made a big deal about it and rarely complained so I knew before I ever

developed Fibro and degenerative joint disease that it was possible to

lead a productive life while having chronic pain. Even so, I'd give my

right arm for a cure.

SusieQ

>

>

> --- tlady44 wrote:

>

> > People who are not in pain do not understand do

> > they?

>

> No, they can't understand. It's not in the scope of

> their experience. > Kaylene

> Moderator

>

>

[Guest guest]

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???!!

I'm at a point where I've even stopped going to a cardiologist (I have high

blood pressure and had 3 bypasses done in 1998) which is probably really stupid,

but I've lost all faith in doctors.

Right now I'm in so much pain that I've spent most of the day on the

floor and I'm typing one handed because my upper back and neck are on fire. I've

been given absolutely nothing for pain, I take 4 tylenol at a time.

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.

I'm dreading going to work on Monday as this latest flare

started 2 weeks ago when I had to stop driving my car until my income tax refund

comes and I can get insurance again.

I feel so frustrated right now... I live in a tiny 3 room apartment with my

daughter who is 18 and 8 months pregrant and this place is an absolute mess!

I have to get it cleaned up soon because when she has the baby a nurse will be

coming by to check out eveyrthing since we get

state medicaid. I don't know how I'm going to do it and my daughter is having a

difficult pregnancy and can't help much.

I know there are doctors out there who treat FMS but the ones around

here that do don't accept Keystone Mercy. Ugh!

Most of my family just doesn't get it either.

Oh well, I just keep on going and try to do what I can.

Anne

tlady44 wrote:

I have suffered with fibro seems like my whole life but it has been

> about 15 years. I have given up on the medical people finding

> anything to help me.

[Guest guest]

Hi Anne,

I'm sorry you're having it so bad. I know how it is to be sick and go

untreated. Everybody talks about having an advocate... Maybe you'll

be blessed with one, one day.

I don't know how to encourage you, really, because sometimes I still

feel crappy and abandoned by the medicals... Keep hope. Try not to

think about what 'should' be happening too much.

When you get a second wind, change docs and try again.

Please feel better.

Uabi

Anne Suplee wrote:

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

[Guest guest]

Hello,

I do a lot of praying and crying too. They are both a release that I feel are

necessary. People in general do not understand, but this group does. Please

vent, because you are not alone. I'm sorry that you are suffering.

Caitlin

tlady44 wrote:

With this I pray a lot and cry a lot.

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

What are the most popular cars? Find out at Yahoo! Autos

[Guest guest]

Hi Uabi,

Thank you for your kind words. Some days it can feel pretty bleak and

depressing thinking about pain, doctors, etc..

I'm in the process of trying to give myself a good swift kick in the

butt and start making people pay attention. I have a granddaughter on

the way soon and with my daughter being only 18 years I'm going to have

help. Besides, I'd like to be able to enjoy doings things with my

granddaughter and helping to raise her.

I'm calling my PCP this week and going to go through the State Medicaid

handbook to find a cardiologist... and yes I'm going to ask for the

nicotine patch (besides I refuse to smoke anywhere near the baby after

she's born). I had quit for 4 years after my heart surgery but let

stress get to me and started again. And it is true that quitting the

second time is even harder!

Gentle Hugs,

Anne

uabicole wrote:

I'm sorry you're having it so bad. I know how it is to be sick and go

untreated. Everybody talks about having an advocate... Maybe you'll

be blessed with one, one day.

[Guest guest]

Hi. I am sorry you are in so much pain, Tlady. I live in Houston also.

Have you tried seeing a pain management doc?

I just started going to a new one and he seems pretty good so far and

is very understanding. If you email me, I can give you his name and

info.

cinderella6251@...

>

>

> I am in so much pain it is hard to sit, stand, walk, lay down, what

> do I do who can I see in Houston, TX > Thank you very much for

letting me vent to you guys please will

> someone answer me soon. thanks

>

[Guest guest]

--- tlady44 wrote:

> I have suffered with fibromyalgia for so long and so

> far I have had

> no good results.

Hi Tlady44

Welcome to the group. I'm one of the 5 Moderators. I

hear you loud and clear about Fibromyalgia pain. It's

-20 F here in Montana this morning. The humidity and

windchill factor makes it feel like -34 according to

the weather folks.

Staying warm and gentle exercise helps me. I use an

electric blanket year round, and swim at the local hot

springs.

We haven't been able to swim for several months

because my husband was having heart problems. The

heart problem was fixed at the VA hospital in Salt

Lake City this week, so I hope we can go back soon.

I also have nerve damage to my legs and take several

antiseizure medications, and Lortabs. That helps with

the Fibro pain too.

Many, many people in the group have spinal stenosis

problems. Go to www.spineuniverse.com and you can

learn more about it.

Once more welcome to the group.

Kaylene

Moderator

__________________________________________________

[Guest guest]

Hello Tlady! I too, am a newbie here,and to yahoo itself. I myself, have been

battleing severe arthritis of the spine, Osteoporosis(i am 52,mine spine is 75).

I was recently dx with FMS. I do know your pain! I just started Physical Therapy

for the second time. I have run the gammit of meds also.. all the way to

Morphine, Percocets, and Soma. Needless to say, they didn't work. So, my Xmas

present to me, from my Dr, was to go " cold turkey " off all the meds, and start

all over. I ended up in the hosp. for 3 days, going thru medically induced

detox. I would certainly find another dr. Possibly a neurologist. I take a med

called Lyrica.

It is stronger than Neurotin. This helps the nerves to relax and not tell my

body it hurts, I take Lodine for anti-inflammatory, and Soma for the muscle

spasms. With the Osteo being so severe, most of my discs are bulging. I have

shrunk 2 inches already. Thru PT. they found that my right leg is 1/3 inch

shorter than my left leg... caused by the muscles

constricting. If allowed to constrict any more, they will litteraly break my

hip/pelvis.

So yes, dear friend in pain, I do know what you are going thru. Check on that

neurologist. Maybe even a Reumatologist. Primary care physicians just aren't

trained for out specific needs. I am available on yahoo messenger, and I also

have msn messenger. Contact me if you need or want to vent/talk grannysue

[Guest guest]

Hi Tlady,

Well, welcome to the club, sorry you are a member. I have fibro as

well as nerve damage in my back and legs resulting for a car accident

right after a back surgery, I am have now had 6. yikes.

I dont have a clue who to refer you to in your area, but it sounds

like a pain management doc would be an asset to your medical team. I

make no bones about changing docs if I am not being treated like a

human being with real problems. They work for ME. Outting the right

team together can be difficult, but boy when you get it assembled,

life can really change.

As for the fibro, I am having EXCELLENT results with a treatment

called a myers cocktail. It not drugs, its mega doses of vitamins that

us fibro folks dont process well. Gosh, I am less achey, have more

energy and my pain meds load is WAY down. Do some searching on the web

to learn more and perhaps find someone in your area.

Hang in there hon, you are not alone, and its kinda tough to offend us

by being forthright and honest. Remember just because someone may have

more pain than you, still doesnt make yours any less real to you. It

limits us all, and we all have to try to lead the best life we can

along side the pain.

Tlady wrote:

> I have suffered with fibromyalgia for so long and so far I have had

> no good results. I live in Texas and If I tell you Dr's in Texas

> need to get better bedside manners. They make you feel as if you are

> wasting their time and the only thing you want is the pain to go

> away.

[Guest guest]

>> I hear you loud and clear about Fibromyalgia pain. It's

> -20 F here in Montana this morning. The humidity and

> windchill factor makes it feel like -34 according to

> the weather folks. <<

We're supposed to get this weather tomorrow, this morning it was about -5 F

over here.

>> Staying warm and gentle exercise helps me. I use an

> electric blanket year round, and swim at the local hot

> springs. <<

How often do you usually go to the hot springs, Kaylene? Do you swim in the

cooler pool, too, or do you stay in the warmer ones? We've been going once a

week and while I enjoy swimming, Mark usually stays in the hot pools. I'm

trying to encourage him to swim a few laps as well, but he says the big pool

is too cold for him (about 60 F).

>> We haven't been able to swim for several months

> because my husband was having heart problems. The

> heart problem was fixed at the VA hospital in Salt

> Lake City this week, so I hope we can go back soon. <<

I'm glad your husband had his heart problem fixed and you can go back to the

hot springs.

Marita in Montana

[Guest guest]

Hi ,

I didn't know you were doing the Myers thing.

That's really cool, because the results you

described are the some of the same results I

got from the Usana vitamins I take.

Can you tell me more (on or off list) about

how Fibro folks don't process certain vitamins

well???

Thanks most sincerely,

Uabi

wrote:

> As for the fibro, I am having EXCELLENT results with

> a treatment called a myers cocktail.

[Guest guest]

75?!? 60!?! I won't even stick my big toe in if it's less than 85.

With Arthritis and Fibro anything less than that and I would freeze

solid. I won't even get in my Jacuzzi if it's less than 95. I'm

totally spoiled. ;-)

SusieQ

> The cooler pool where I go is never cooler than 75

he says the big poolis too cold for him (about 60 F).

>