Re: No sleep again for me..../Mayo Chronic Pain Clinic

[Guest guest]

Hi Anita,

I have been reading your blogs for the past few days! I can totally

relate and I feel for you too!

I have had fibromyalgia for 20 years. In addition the wonderful

Interstitial Cystis, IBS, erythromyalgia, sever migraine headaches,

degenerative disc disease, blepahritis, plantar fascitiis, chronic

fatiuge, chronic sore throat, burning mouth syndrome and just in

pain all the time!

Before, you go to the pain clinic at the Mayo, please talk to me! I

went for the 4 week program which was a waste of $30,000, and the

time and stress it caused me and my family more than I could bear!

Now, that being - it was MY experience. However, I have kept in

contact via e-mail with quite a few of my friends from that time

there and NONE of them are any better - most are worse and most

still on heavy narcotics. One, thing the pain clinic will do is

MAKE you get off all heavy pain medications, they don't believe in

injections, epidurals, or any implants. They only deal with giving

you antidepressants and helping you " deal " with what you have by

sitting and I mean sitting in a chair for 8 hours a day watching

films and listening to lectures about things you already know from

being in chronic pain for so long. Again, I would rather have you

send me money and I would make a copy of the large 3 ring binder of

al the things discussed before you go running down there. I don't

know where you live - but a plane ride, the stay in a costly and i

mean costly hotel room will leave you bankrupt. And, certainly if

you don't have insurance - this would be a nightmare.

Now, someone out there reading this blog may have gone to the

fibromyalgia clinic at the mayo (another 3 day joke!) or the Mayo

Chronic Pain facility and had good results. They will NOT put you

out of your Pain! And, if the placebo effect works for you, you

will be dancing around in 3 days as one lady was when she came in a

wheelchair with her head buried in her hands. For some, just the

thought of going to the pain clinic cures them.

But, for you and I who are intelligent Type A personalities - the

placebo effect does not work. We KNOW if a medicine is doing it's

job or not.

Find a new pain specialist or doctor who will give you those meds.

My general practicitoner will give me just about anything I ask for.

Although not much works and i " m allergic to most everything as you

are.

All I can say is that by calming yourself down - which I've finally

learned to do helps tremendously. Listen to your heart, pray, and

hope that the day will come when we will be in a place without pain.

When my fibro first started I had severe migrianes for 2 years and

was bedridden and in the dark! I had several neck surgeries, and

could barely hold my head up by 2000! Physical therapy of YEARS

still has me fatigued to hold my head up for about 2 hours at a

time. And, the rest of the ailments that came along are no picnic.

I'm so sorry! I DO FEEL your PAIN! I do understand! I wish for no

one on this earth to feel the way you or I do. IT is not fair.

I did have a couple radiofrequency denervations in my neck by a Pain

Doctor and those did help some. You may want to check into that for

your back.

I'm not offering good advice here - but please get with me before

you head to the Pain Clinic at the Mayo. There are good doctors

everywhere - and the Mayo does NOT have the absolute best. I live

in Minnesota and most of the doctors have all gone to the same

medical schools. It is just that the Mayo sees more of the weird

strange illnesses that come because of their reputation. That is

why they are able to diagnosis some things so quickly. Fibromyalgia

is not one of them.

Take care! Anita... I'll pray for you today. I have been homebound

since 2001 and am lonely too! This group is new to me! Blogging is

new to me and computer usage as well. So, let me know how I " m doing.

Thanks!

mncjl

[Guest guest]

Dear mncjl - I think you did a very good job sharing your info. with Anita.

Welcome to the group.

Jeanne in WI

I'm not offering good advice here - but please get with me before you head to

the Pain Clinic at the Mayo. There are good doctors everywhere - and the Mayo

does NOT have the absolute best. I live in Minnesota and most of the doctors

have all gone to the same

medical schools. It is just that the Mayo sees more of the weird strange

illnesses that come because of their reputation. That is why they are able to

diagnosis some things so quickly. Fibromyalgia is not one of them.

Take care! Anita... I'll pray for you today. I have been homebound since 2001

and am lonely too! This group is new to me! Blogging is new to me and computer

usage as well. So, let me know how I " m doing.

Thanks!

mncjl

[Guest guest]

Hi mncjl, just welcoming you, as I am only here 2 weeks but already seems

like alot longer! I am sorry to hear you have been homebound so long, I myself

have been really homebound since Nov.. and am going nuts, that is what got me

seeking out a support group, why I had never thought of it online before, part

of my fibro space out, discourgement from not working in almost a year and

whatever else. But have been busy with this site everyday now so stay with us

and hope you find help, conversation and whatever else you may need to help you

through being home for so long. Sharon

Jeanne and Dave wrote: Dear mncjl - I

think you did a very good job sharing your info. with Anita. Welcome to the

group.

Jeanne in WI

I'm not offering good advice here - but please get with me before you head to

the Pain Clinic at the Mayo. There are good doctors everywhere - and the Mayo

does NOT have the absolute best. I live in Minnesota and most of the doctors

have all gone to the same

medical schools. It is just that the Mayo sees more of the weird strange

illnesses that come because of their reputation. That is why they are able to

diagnosis some things so quickly. Fibromyalgia is not one of them.

Take care! Anita... I'll pray for you today. I have been homebound since 2001

and am lonely too! This group is new to me! Blogging is new to me and computer

usage as well. So, let me know how I " m doing.

Thanks!

mncjl