Re: New Here

August 25, 2004

Hi ,

Welcome to our support group. I'm so sorry you're going through such a

rough time. Fibro is such a horrid disease and so difficult to deal

with, not to mention how differently it hits each of us. Have you made

another appointment with your Rheumy? If not, do so right away. Let

him/her know that the bextra is no longer working and you need something

for this pain that obviously has got you down and out. Most of us have

other health issues tacked on to the Fibro, so we understand what you

are going through.

What I use for this disease: I take amitriptyline at bedtime to help

with the pain and depression that goes along with Fibro. Many here take

Oxycontin for pain, I use Tylenol #3 with limited success, but it's all

I can take because of kidney issues. Some of us also take Flexoril to

help with the muscle spasms. Relaxation exercises also help me along

with deep breathing and soaking in a hot bathtub with Epsom salts.

Many, myself included, are using massage therapy and/or acupuncture for

pain management. I'm feeling some success with this. I hope you get

all the information you need. Have you looked at various websites for

more information. Please check out the web pages in our links section

for some very helpful places to check out.

I'm sure many here will be able to give you more information as well and

what they currently do/use to help them. Again, welcome to our group.

healing hugs,

Norah

Norah Bleazard - Burlington, Ontario Canada

www.bleazard.net ~ www.janorlites.com

E-MAIL=

norah.fibroyahoo@...

CHAT=

MSN = black_dak_98@...

Yahoo = drazaelbn

AIM = black98dak

ICQ = 105346330

Fibromites_Fighting_Weight:

http://groups.yahoo.com/group/Fibromites_Fighting_Weight

http://fibromites.ath.cx

tanya2727 wrote:

>Hi,

>

>My name is and I was DX with fibro last month. I have been

>ill with other things and I was just going to ignore the fibro , but

>after being in alot of pain for 3 weeks, I started having really bad

>whole body pain.

>

>Tha rhumatologist put me on bextra which helped at first when the

>pain was mild, but now my body is in full pain mode and laughting at

>the bextra.

>

>I feel myself sinking lower. I already have enough troubles with my

>other heath issues and this is dragging me down. I suffer as I

>guess you all do from very chronic fatigue, and muscle weakness,

>but the body pain that is constant is hitting me hard.

>

>what do I do now? I now know I've had this before over and over

>again and I always get through it, but the pain and weakness is a

>little worse this time.

>

>I feel I need to talk with others who have this because I know what

>I have now but I though there is no treatment so what's the use, but

>it's got to be something to help this pain.

>

>H_E_L_P_!!!

>

October 18, 2004

Deborah R.

You have come to the right place. We are very

supportive of each other and great listeners. Anytime

you want to rant or scream or cry or vent, feel free

to.

I am sorry that your children are pulling away from

you. I wish there was something I could say or do to

make it better, but unfortuntely I can't.

I can say that I am glad you found us and I hope you

stick around. You are now part of our family and we

welcome you with open arms!

Site-Mod

--- deb rongholt wrote:

> Hi my name is Deborah and I could use some help and

> a friend. I have Fibro, disk disease, degenative

> arthritis, nueropathy, hardening of the arteries,

> heart disease, emphysema, kidney disease, two mini

> strokes and am also diabetic. Iam 52 now and have

> had alot of these problems since my late twenties.

> I have two daughters and five grandchildren I love

> very much. The problem is I have no support and no

> one to talk too. When I became too ill to work any

> longer my children wanted me to move closer to them.

> So I left my friends and boyfriend behind and moved

> to WI. The more ill I get the futhure away my

> children pull from me. Right now I hardly get to

> see my older daughter and her kids, as for my

> younger child she sees me about twice a month. I try

> to tell them how much I miss them and how lonely Iam

> to have someone to talk to ,but they just tell me,

> kids don't see there parents that much anymore/ They

> are age 34 and 36 so its not like there in there

> teens and don't have time for

> parents. I have been on my own for the last 23

> years and now I have been on my own, without anyone

> to talk to, for 13 years, except doctors. If anyone

> can help me I would be most grateful. God Bless

> Deborah

>

> ---------------------------------

> Do you Yahoo!?

> vote.yahoo.com - Register online to vote today!

=====

Site-Mod: Fibromyalgia_Support_Group

http://health.groups.yahoo.com/group/Fibromyalgia_Support_Group/

If I can't serve as a good example, then I guess I'll just have to serve as a

horrible warning.

__________________________________________________

October 24, 2006

hi , from texas here 54 and had the seeds implanted 8/25/06. It was an easy procedure for me. It does hurt your butt for about 2 days then the dicomfort goes away. I went back to work after 4 days, and had no problems, I do blue collar type work and it wasnt a problem at all, to lift or stretch. It does hurt to pee the first month , but the Dr. warned me about that . I take flo max to help that . I had my first CT scan and everything looks good so far . This was a good decision for me , Iwas very nervous and scared before I had it done. I have no leakage or bladder problems. this part im not sure how to say but if you or he want to know the sex part is back to normal , just an old married couple and i worried about that part , if you guys have questions let me know . The doctors dont really prepare you for that, but sex is not a good idea for the first 3 weeks . LOL Trust me on that one. . No technical advice here ,just happy

with my results so far . Good Luck to you both . froggerjen_2000 wrote: Hi there,I'm looking forward to getting to know each of you on this board. Right now my husband and I are weighing our options. We live in a small town in Northern Minnesota. There's a urologist here who basically laid out the options for him, with surgery being the only "right" way to go, in his opinion. We are looking for other opinions, and so I guess he has to ask the urologist to

be referred to a radiology oncologist? Dana(husband) really thinks surgery should be a last option, so I'm glad he's open to looking into alternatives. I have a question about Brachytherapy. When they insert the radioactive seeds, are they put in through the penis or other end? Can I say that on this board? Thanks for any support and responses.Also, anyone else from Minnesota or nearby?Jen

October 24, 2006

Hi Jen,

I'm from your neck of the woods. I grew up in Bemidji, and now live

in St. Cloud.

Regardless, though, you've come to the right place. There's a

tremendous amount of support -- and an equal amount of expertise and

experience -- available here. Please keep us posted on your husband's

progress. Should you have questions, feel free to ask. There's always

someone who's willing to provide support or expertise.

Mike/Minnesota

>

> Hi there,

>

> I'm looking forward to getting to know each of you on this board.

> Right now my husband and I are weighing our options. We live in a

> small town in Northern Minnesota.

> Also, anyone else from Minnesota or nearby?

> Jen

>

October 24, 2006

Hi Jen,

Sorry to hear of Dana’s diagnosis. Would

you care to share with us the basic numbers – PSA series that led to the

diagnosis, Gleason Score, and Staging? Those all help to focus on your options.

As ypou start the process of looking for other opinions, you might like to

print off the list of questions that should be answered before you make a final

decision which you can find here: http://www.yananow.net/questions.htm

You can post any question you like to this

List and please remember there are no dumb questions – all of us on this List

started with zero knowledge and we only learned what we have from asking

questions.

All the best,

Terry

Herbert in Melbourne, Australia

Diagnosed ‘96: Age

54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. August '06 PSA 27.4

My site is at www.yananow.net

As a

physician, I am painfully aware that most of the decisions we make with regard

to prostate cancer are made with inadequate data: Dr

“Snuffy” Myers.

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ]

On Behalf Of froggerjen_2000

Sent: 25 October 2006 04:35 AM

To: ProstateCancerSupport

Subject: New here

Hi there,

I'm looking forward to getting to know each of you on this board.

Right now my husband and I are weighing our options. We live in a

small town in Northern Minnesota. There's a

urologist here who

basically laid out the options for him, with surgery being the

only " right " way to go, in his opinion. We are looking for other

opinions, and so I guess he has to ask the urologist to be referred to

a radiology oncologist? Dana(husband) really thinks surgery should be

a last option, so I'm glad he's open to looking into alternatives.

I have a question about Brachytherapy. When they insert the

radioactive seeds, are they put in through the penis or other end? Can

I say that on this board? Thanks for any support and responses.

Also, anyone else from Minnesota

or nearby?

Jen

October 24, 2006

Hi Jen,

Well, from what you say, it seems that

Dana has an early stage tumour. Do any of the reports give an estimated size of

the gland? I ask because there is a condition known as BPH (Benign Prostate

Hypertrophy) which many men suffer from, especially once they get into their

50s which is, as the name says, benign and which can cause urinary problems as

well as an elevated PSA.

Can I suggest you move forward at a steady

pace in gathering information, but do not rush into a decision as it is

unlikely that a delay of some weeks or months will make any substantial

difference to the outcome of whatever path you and Dana choose. I have

set out some suggested actions on my website that I believe will increase your

chances of a good outcome at http://www.yananow.net/survivpc.htm#topofpage

One of the items is that you should get copies of all reports (you are legally entitled

to them although you may be charged a nominal fee for the cost of copying) and

ensure that you get copies of all future reports. That way you can get to

understand what is being suggested and why. There is a link on the page I have

referred you to which contains a list of questions that you should ask the

medical people so that you gain a better understanding – that’s on http://www.yananow.net/questions.htm

if you missed the Link.

It’s difficult for me to say what

Dana needs from you right now because every man is different, but as long as

you are there to support him and to give him some hope of a good future, with

you in it, I guess it will help him along the line. From the time I have spent

on the Web and in support groups, I can tell you the most normal reaction of

men is initially that they are going to die in a short time – well, that

can be knocked on the head in most cases where the diagnosis is like Dana’s.

The second is to try and guess what the best thing is to do – and you’re

helping him sort out his options. The third is – what are the side

effects.

Now as far as that is concerned, all that

can be truthfully said is that there are always side effects associated with conventional

treatment and the most scary for men is the prospect of erectile dysfunction or

impotence, not only because of their own concerns about the loss of this, but

also because they feel that their partner will leave them. Many men have told

me that they have got some comfort from reading the stories that other men have

told about their treatment and the outcome – there are over 200 on my

website at http://www.yananow.net/Experiences.html

covering all treatment options. You will see that some stories tell of positive

results, others are less so, but what comes through loud and clear is that there

is life after a PCa diagnosis – and I should know as I’m ten years

plus from mine.

All the best,

Terry

Herbert in Melbourne, Australia

Diagnosed ‘96: Age

54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. August '06 PSA 27.4

My site is at www.yananow.net

As a

physician, I am painfully aware that most of the decisions we make with regard

to prostate cancer are made with inadequate data: Dr

“Snuffy” Myers.

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ]

On Behalf Of froggerjen_2000

Sent: 25 October 2006 11:25 AM

To: ProstateCancerSupport

Subject: Re: New here

Dana's numbers:

His gleason is 3+3, and they classified it as T2a. He had 2 psa

tests and I can't remember the exact numbers on those, but they were

around 6 or 7. He basically thought he had a problem because he had

trouble urinated. Never had blood in urine or stool. It took a long

time to get a diagnosis, because he's native american and before we

were married he didn't have insurance so he was going to the Indian

clinic on his reservation(where he doesn't reside). Once they did

the initial psa test and original exam, they had to refer him to

Fargo. Then

they decided they weren't going to cover the expenses.

So he had to wait until we got married(we moved up the wedding)and

then he could be on my insurance and go through the whole testing

process again! Frustrating! But at least now we know, and can deal

with it even though it's not the outcome we hoped for. I just hope I

can be here for him in the way he needs me to. I am being as

supportive,patient,and understanding as possible right now and I

think that's what he needs. If any of you men who have been through

this have some insight as to how I can help Dana emotionally I would

love the feedback.

Thanks again

Jen

October 25, 2006

Jen

The great thing about the British National Health service is that all residents are equal - unless you can pay to have a private room at a private hospital. Though with a major condition I'd rather be in the NHS! I am amazed at the lack of facilities for the people who have lived in the States longest.

The good thing is that I was diagnosed 10 years ago with similar stats - in fact slightly worse. I know many men who are still around 15 (that nearly came out as 125) plus years after diagnosis.

There is mouch to look forward to

Keep the happiness going!

Re: New here

Dana's numbers: His gleason is 3+3, and they classified it as T2a. He had 2 psa tests and I can't remember the exact numbers on those, but they were around 6 or 7. He basically thought he had a problem because he had trouble urinated. Never had blood in urine or stool. It took a long time to get a diagnosis, because he's native american and before we were married he didn't have insurance so he was going to the Indian clinic on his reservation(where he doesn't reside). Once they did the initial psa test and original exam, they had to refer him to Fargo. Then they decided they weren't going to cover the expenses. So he had to wait until we got married(we moved up the wedding)and then he could be on my insurance and go through the whole testing process again! Frustrating! But at least now we know, and can deal with it even though it's not the outcome we hoped for. I just hope I can be here for him in the way he needs me to. I am being as supportive,patient,and understanding as possible right now and I think that's what he needs. If any of you men who have been through this have some insight as to how I can help Dana emotionally I would love the feedback.Thanks againJen

November 10, 2006

All, Please remove my name form this mailing list. Thanks for all your help and information. Thank Youphico40 wrote: My dad has similar cases. He was diagnosed back in sept 06 with a psa of 450, he is a T4 with bone mestases all over even in his skull. They told him the only treatment is the hormone injections. He was told radiation is not an option for him. He does have alot of back pain and is taking pain

killers. I know since he started this hormone even though is has only been a couple months he has put on around 20 pounds so he says and that he is feeling good. Now whether this is the case or not this is what he tells us. He is 70 years old. They told him chemo would not really help out. So this is the only option they say. I dont know what his gleason is but I do know they took 13 biopsies and 3 came back positive with a scale of 7-7-8 out of 10. I do not know the prognosis for him or if this just buying him time. He does not go back until december for another test to see how things are going. We can only pray that this will help him.> >> > Jen> > > > The great thing about the

British National Health service is that > all residents are equal - unless you can pay to have a private room > at a private hospital. Though with a major condition I'd rather be > in the NHS! I am amazed at the lack of facilities for the people who > have lived in the States longest. > > > > The good thing is that I was diagnosed 10 years ago with similar > stats - in fact slightly worse. I know many men who are still around > 15 (that nearly came out as 125) plus years after diagnosis. > > > > There is mouch to look forward to > > > > Keep the happiness going!> > > > > > > > > > Re: New here> > > > > > Dana's numbers: > > > > His gleason is 3+3, and they classified it as T2a. He had 2 psa > > tests and I can't remember the exact numbers on those, but they > were > > around 6 or 7. He basically thought he had a problem because he > had > > trouble urinated. Never had blood in urine or stool. It took a > long > > time to get a diagnosis, because he's native american and before > we > > were married he didn't have insurance so he was going to the > Indian > > clinic on his reservation(where he doesn't reside). Once they did > > the initial psa test and original exam, they had to refer him to > > Fargo. Then they decided they weren't going to cover the > expenses. > > So he had to wait until

we got married(we moved up the wedding)> and > > then he could be on my insurance and go through the whole testing > > process again! Frustrating! But at least now we know, and can > deal > > with it even though it's not the outcome we hoped for. I just > hope I > > can be here for him in the way he needs me to. I am being as > > supportive,patient,and understanding as possible right now and I > > think that's what he needs. If any of you men who have been > through > > this have some insight as to how I can help Dana emotionally I > would > > love the feedback.> > > > Thanks again> > Jen> >>

June 23, 2009

Arlene,

Welcome! Sorry I'm a little slow in writing. I had one of my blinding

headaches yesterday. I'm 52 years old and have FM/CFS, DDD in my neck and lower

back and nerve pain in my feet. I used to work as a pharmacist, so if you have

med questions, I'm your gal.

This is a really nice group. You can talk @ anything here.

Take care and feel better.

Alanna

Sent from my Verizon Wireless BlackBerry

New Here

HI all, just wanted to post a little about myself....pain is kicking butt right

now but did want to post. I am 42 in 1998 I had a run in with an 18 wheeler

while riding my bike home from the park. Guess who won? I suffered only leg

damage as for my right leg was hanging off an the docs. reattached it, the left

foot was made from a muscle removed from my back have had over 25 surgeries. I

have very bad nerve damage to both leg/foot. I could make a darn good weather

person! I have been on meds for years. which is really hard for me as for I am

not one to really want to take any pill. this is short but I hope you would

understand for I need to lay down now because the pain is getting worse. Thanks

for allowing me a chance to be in your group an look forward to getting to know

you all an help in supporting the group.

HUGS Arlene

June 23, 2009

:Hi Alanna,

I had my DR appointment he has me on 100 mg of morphine, is that a real high

dose? He said - could stop breathing and I wouldn't know it.

Is this true?

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