new member

Report post · October 27, 2003

In a message dated 10/21/03 1:56:15 PM Eastern Standard Time,

ruffinochianti@... writes:

> I look forward to learning a lot form one another!

>

> Jan

>

Hi Jan! I've been offline a week, my daughter had surgery recently and we

are just now getting on our feet. Welcome to the group. I've had fibro for

about 23 years and am in severe pain all the time. I wish I could tell you what

helps! I haven't figured it out yet! Take good care of yourself, eat the

right diet for you, reduce stress in your life, exercise and listen to everyone

and be careful! There are tons of people out there wanting to make a buck off

of you. I spent a decade doing everything medical science could offer and a

decade doing everything alternative/spiritual medicine could offer, and all

that ever happened was I was out a lot of money with both of them. No one knows

what this disease is yet, but lots of folks have figured out ways to live with

it, just like any other chronic problem. I'm currently just on pain killers;

otherwise I can't move enough to maintain life, lol. I was on oxycontin, but

chose to go off of it and haven't decided yet what to use next; right now I

have a fentenyl patch, I think that's how to spell it! Hope to see you around.

It's hard to find supportive people for fibro; we all look so healthy!

Joyce

Report post · December 21, 2004

Hello Noni, welcome to the group.

You have really come to the right group, all with bronch or caring for

someone who does have it.

It doesn,t always hit oldies, most I know including our family mid to late

40,s.

But like everything we are all different, all different allergies, all

different other aggrevates etc.

You will learn a lot from this group, much more than any book or doctor,

especially ways of coping and changes in lifestyle and food etc.

Must go welcome, would be interested in where you live, country etc.

I,m in Queensland, Australia, I,m 59 mother of 4 and nanna to 12 and 3/4. I

was born in Australia, my family were from ,

London, Manchester and Cornwall.

Bye again Sandy

>

>Reply-To: bronchiectasis

>To: " BronchiectasisYahoogroups (DOT) Com " <bronchiectasis >

>Subject: New Member

>Date: Tue, 21 Dec 2004 08:38:02 -0600

>

>I am a new member of this group. I was diagnosed with bronchiectasis

>one year ago, but suffered the symptoms for about one year before that.

>At first I thought my coughing was due to an allergy, but an allergist

>ruled that out and sent me to a pulmonary specialist.

>

>Every day I have at least 4, sometimes 6, coughing spells lasting about

>30 minutes, and I have to expel lots of phlegm and mucus. I have tried

>just about every inhalator and steroid treatment there is but nothing

>helps. I now use a flutter valve to help loosen the phlegm and make it

>a little easier to cough it up. Fortunately, this occurs mostly during

>the day and rarely do I have any episodes at night. But my social life

>has become almost non-existent because of this condition.

>

>I would like to hear from others who have this condition and learn how

>they cope with it. I have never met anyone personally who suffers from

>this. I am 71 and understand it usually happens to older people.

>

>Looking forward to chatting with this group.

>

>Nonie

>

Report post · May 19, 2005

Hi Lorrie,

Wow, you've really been through a lot. I've only had fms for a year and a

half, and I've wondered how people deal with this for years and years. I

have tried so many remedies (acupuncture, homeopathy, hypnosis, herbs,

supplements.....etc.), but nothing provided total relief. I would still go

through the good days/bad days. I'm now using glyconutrients by Mannatech (I

don't want to sound like a sales pitch for their products) for 3 months, and

most of my symptoms have disappeared. The lingering symptom I have is neck

pain/stiffness and an achy back. But, at least it's bearable and I hope and

pray the results will be lasting and I'll continue to improve. You never

realize how wonderful it is to have a regular life until you get something

like this. This week I've been able to paint lawn furniture and cut the

grass. There was a big debate on another list about the glyconutrients, some

total skeptics and some total believers. I went to a seminar presented by

Dr. Reg Mc and afterwards talked to a woman who used to have fms. She

said it took about 6 months for her symptoms to go away. That helped me to

decide to stick with it and I'm glad I did. Anyway, it's something you may

want to check into. If you're like most of us, you've tried it all and spent

lots of money in the process. I've always believed that our bodies are

miraculous and have the ability to heal if given the right materials. I am

careful with my diet of mostly raw foods, vegetable/green juice, no sugar,

limit or no wheat, same for dairy. I hope you find something that works for

you, but don't give up hope!

new member

> Hi everyone, I am Lorrie,

>

> I'm glad to see a group so dedicated to healing.I am sufferer

> also,since I was about 15years old I noticed things going wrong.

> Irritable bowl, ulcerative colitis, pnemonia, vertigo. Altho

> premature,I was unaware of may have had something to do with

> this.Anyway It started real bad after a near fatal car accident,

> where I was DOA at the trauma unit. Severlly crushed. I am very

> strong and was up and out in 8 days after acoma and recunstructive

> surgeries on my feet,now with sever pain.The pain was so severe,I was

> on pain meds constantly, now Im not. I try taking my live a few times

> hate to even wake up. But I kept going, 4years ago I was DOA of

> respatory failier, with lung surgery.I was told I had 2 years, that

> was 4 years ago. Along with the fibro,I did'nt think I could live.

> But I'm here. I have tried many types of relief, some have worked for

> awhile. But now I guess I tired of the fight. So I do take pain meds.

> But when Im out oh how I suffer. So this will be nice to hear of some

> other remedies, I still have'nt given up but Im soooo tired all the

> time,I have been dealing with this for almost 25 years, before there

> was ever a name for fibro, just tons of symptoms. So Im glad to be

> here, to let it go per say.

>

> Thanks Lorrie

>

Report post · May 23, 2005

I get the skin lesions, too. The md said skin problems aren't normally a

part of fms, but I've had it from the start. Mine are also mainly on my

bottom and tops of thighs. They swell and hurt, then after the swelling is

gone they itch like crazy. The interesting thing was that I did a juice diet

for a month and they cleared up. As soon as I went back to regular food,

they were back again. I've noticed if I eat lots of fresh veggies and stay

off dairy and grains, they lesions start disappearing. My problem is I have

a such a hard time not eating certain things, especially if we're out

someplace (you know how restaurants bring out hot bread or chips and

dip).....I'm weak!

Take care,

Re: new member

> hi linda,

> thank you for the info on the glyconutrients. sour dough bread is the only

bread that dose'nt have gluten, I really like it. you can make your own too.

Yes, I miss my grandmother, all my grandparents are gone now, i miss them

all. I find that when I have FM flare ups, i get a fever, and my skin hurts,

oversensative to the touch. I also get skin leisions, the drs. can't figure

them out,but they hurt real bad and get infected, it almost acts like a

staff infection. but only on my face and rearend. wierd huh. well have a

good nite. I ve been up late for about a week now, wake up early with hips

aching, I can't sleep on my back or stomach, so I have to get up and move

around a little, then go back to bed for abvout an hour. DDo you have any of

these. Drives me crazy too.

>

> god bless and talk soon\

>

> Lorrie

Report post · June 3, 2005

Hi ,

I live in Waukesha, Wisconsin—just west of Milwaukee. I also use Advair and

Singulair and feel that both have helped some. My lungs worsened quite a bit during the

first four years after I was diagnosed.

I finally wound up have lung surgery. That was three years ago and although I

still get infections (I’m fighting one right now), I’m certainly

doing better than I was before the surgery. My pulmonologist feels that there’s

less chance of building up resistance by rotating the antibiotics. It seems to be kind of a catch 22—if

you take the antibiotics, they might not do much good down the road. But if you don’t take them, you

can wind up damaging your lungs even more.

Personally, I’d like to at least make it to the point that I have

to worry about a resistance factor.

I don’t plan on letting the infections do me in before that. Has your doctor given you advice on how

to clear your lungs? Many of us do

postural drainage (with or without pounding) and/or use a flutter valve. Some of these thing work for some and

not for others but they are certainly worth trying. My doctor also says to keep

exercising. He said that anything

that makes your lungs work hard is good.

(That’s easy for him to say, he doesn’t have bronch.) Oh well, I keep telling myself that

exercise IS GOOD.

You’ll probably never get your old

life back, but life can still be good with broch.

Barb

New

Member

Hi All,

I am a new member to the group. I was just

diagnosed with Bronchiectasis after suffering for approximately 15

years. I was seeing an ENT because my problems began with my

sinuses. I have had 3 sinus surgerys since 1997. Last year, my

infections came with more frequency, about 1 every 2 months and I was put on

antiobiotics 6 times. I also starting experienceing episodes of

breathlessness. And, I lost about 12 - 15 pounds off my ideal

weight. I had one case of pneumonia last year (have had 4 in all).

I saw 2 different pulmonologists, one thought I had Asthma.. the other ran an

ashtma test and said I was fine. Finally, an oncologist I was seeing for

another matter, suggested that I might have something called Bronchiectasis and

I should see a pulmonologist colleague of his. Which brings me to

today. After a number of tests, Xray and CT Scans, I have been put

on Adviar and Singular, yet my shortness of breath has increased. My last

run with antibiotics ended about 2 weeks ago and I think I have yet

another infection, but this time it is in my lungs rather than my

sinuses. My pulm is suggesting that I go on a antibiotic plan

(rotating the drugs for one week each month), but I am

afraid of possibly building up a resistance to antibiotics.

I am frustrated and very afraid. In

addition to the Advair and Singular, I use Nasonex and Grossan (a nasal

irrigator) to keep my sinuses clear. I have also started drinking tea

with eucalyptus. But I am often short of breath and exhaused. Have

any of your tried anything else that has worked? I just want my life

back.

__________________________________________________

Report post · June 5, 2005

Thank you for the information Barb. I hope to get a lot of answers during my next appointment with my pulmonologist. I will share with everyone.

Barbara Erdmann wrote:

Hi ,

I think that climate affects everyone differently. I have visited Denver a couple of times in recent years and didn’t feel any different during my short visits. However, I felt terrible after returning home the last time. I thought that it might have been due to the changes in altitude but who knows. Very humid weather bothers me a lot—that’s why I

use Singulair. It helps quite a bit, but I still have some problems with humidity—especially rain storms.

I’ve had two pulmonologists and I think that they are both very good. The first one thought that my bronch might have been caught early enough and that the damage had a good chance of repairing itself. That wasn’t the case, though, for me. I think that he was pretty aggressive in treating me and that the damage was just going to get worse anyway. After a couple of years, he sent me for a second opinion regarding surgery. My second pulm was very optimistic about avoiding surgery. He started me on inhaled steroids, first Pulmicort and then switched to Advair. When I started culturing Pseudomonas and Aspergillus (a bacteria and a fungus), both my doctor and an infectious disease specialist recommended that the damaged lobe be removed. It took me a while to agree to that, but I’m glad that it was done.

I don’t really have an opinion about using Advair other than I think it’s a necessary evil. I don’t have sinus problems or asthma. My sister uses both Advair and Singulair for her asthma (she doesn’t have bronch) and her asthma attacks have decreased considerably.

I’ve always felt that pregnancy helps your body stay healthy. I’ll be interested to know what your doctor thinks. I had all my kids before I had any problems. Today is my “baby’s” birthday—he’s 18.

Barb

__________________________________________________

Report post · June 5, 2005

Thanks . I just hope to take notes from everyone in preparation for my next visit to my pulm, when he lays out a plan for me. I will keep everyone posted.

eladutko@... wrote:

, you asked for different opinions regarding treatment. I'm not saying my way is the best, but through all these years it has helped me to resist infections. Before I found a doctor who knew exactly what I had, I had suffered through 6 pneumonias within 6 years. When I was diagnosed by the new doctor, he put me on a maintenance program. the medicine he gave me is bactrim ds. I take one pill on Monday and one pill on Thursday. I've been doing this for about 8 years now and I have never had pneumonia again, or any serious infection. I'm not saying I don't suffer with a lot of mucus or that I'm not coughing, I'm just saying these pills have calmed my infections a great deal, and when I do pick up a germ it's usually mild. (I think it's a sulfa type med.) I also use the steam mist to breath in the steam every day and also irrigate my sinuses. Maybe someone else can give you more advice.

-------------- Original message from Ward : --------------

Hi Barb,

I know exactly where Waukesha is. Hello up there. I asked Norma earlier... do you think the climate we live in has anything to do with this disease. Does anyone know if it would be more beneficial to live in different climate, like Denver or anywhere in Arizona, a very dry climate? I have been thinking about this quite a bit lately.

It is interesting that you say that your condition worsened after being diagnosed. Mine definitely has and I have been thinking that the reason may be the addition of either Advair or Singular. Most of my problems have been with my sinuses. Now, since being diagnosed, my sinuses are remaining clear and my lung are getting infected. I just have a bad feeling that the Advair is causing more problems with my lungs. What do you think?

My pulm hasn't discussed PD yet, but my husband and I have read a lot about it and he has been pounding on my back each night before bed. It hasn't been working. I have been interested in the vests that some of the members have referenced. And, I have questions for my pulm about products like Robutussan (sp?) to thin the mucus. I have also read a lot about the benefits of garlic related to lung infections. Do you know much about this? My next appointment with my pulm is on June 22 and I have about 2 pages of questions for him. I appreciate your thoughts on the rotating of antibiotics. I guess my biggest concern is the resistance. The second is that I was hoping to have another child soon. I am fortunate to have one. He is almost 3. I am going to be 39 this year, so time is not on my side. As it is, I worry about being able to have a healthy pregnancy. Any thoughts?

Again, I really appreciate everyone's advice.

Barbara Erdmann wrote:

Hi ,

I live in Waukesha, Wisconsin—just west of Milwaukee. I also use Advair and Singulair and feel that both have helped some. My lungs worsened quite a bit during the first four years after I was diagnosed. I finally wound up have lung surgery. That was three years ago and although I still get infections (I’m fighting one right now), I’m certainly doing better than I was before the surgery. My pulmonologist feels that there’s less chance of building up resistance by rotating the antibiotics. It seems to be kind of a catch 22—if you take the antibiotics, they might not do much good down the road. But if you don’t take them, you can wind up damaging your lungs even more. Personally, I’d like to at least make it to the point that I have to worry about a resistance factor. I don’t plan on letting the infections do me in before that. Has your doctor given you advice on how to clear your lungs? Many of us do postural drainage (with or without pounding) and/or use a flutter valve. Some of these thing work for some and not for others but they are certainly worth trying. My doctor also says to keep exercising. He said that anything that makes your lungs work hard is good. (That’s easy for him to say, he doesn’t have bronch.) Oh well, I keep telling myself that

exercise IS GOOD.

You’ll probably never get your old life back, but life can still be good with broch.

Barb

-----Original Message-----From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of WardSent: Friday, June 03, 2005 12:57 PMTo: bronchiectasis Subject: New Member

Hi All,

I am a new member to the group. I was just diagnosed with Bronchiectasis after suffering for approximately 15 years. I was seeing an ENT because my problems began with my sinuses. I have had 3 sinus surgerys since 1997. Last year, my infections came with more frequency, about 1 every 2 months and I was put on antiobiotics 6 times. I also starting experienceing episodes of breathlessness. And, I lost about 12 - 15 pounds off my ideal weight. I had one case of pneumonia last year (have had 4 in all). I saw 2 different pulmonologists, one thought I had Asthma.. the other ran an ashtma test and said I was fine. Finally, an oncologist I was seeing for another matter, suggested that I might have something called Bronchiectasis and I should see a pulmonologist colleague of his. Which brings me to

today. After a number of tests, Xray and CT Scans, I have been put on Adviar and Singular, yet my shortness of breath has increased. My last run with antibiotics ended about 2 weeks ago and I think I have yet another infection, but this time it is in my lungs rather than my sinuses. My pulm is suggesting that I go on a antibiotic plan (rotating the drugs for one week each month), but I am afraid of possibly building up a resistance to antibiotics.

I am frustrated and very afraid. In addition to the Advair and Singular, I use Nasonex and Grossan (a nasal irrigator) to keep my sinuses clear. I have also started drinking tea with eucalyptus. But I am often short of breath and exhaused. Have any of your tried anything else that has worked? I just want my life back.

__________________________________________________

Report post · June 5, 2005

Danelle,

This is great. Thank you for taking the time to lay this out for me. My pulm had requested a few of these tests prior to making the bronch diagnosis. I have had 2 CT scans (one before and one after a run of antibiotics - he was checking for any changes after antibiotics), the sweat test for CF and blood tests to make sure that my antibodies are at normal levels. I can formulate some questions from your daughter's plan. I hope she is doing better.

I will share my plan after meeting with my pulm.

Thank you.

Danelle Fortune wrote:

-- this is all new to me too (my daughter was diagnosed last month). We just had our first appointment with our pulmonologist since the chest CT, and this is what he prescribed:

-Pulmozyme (it's an enzyme in the nebulizer that breaks down & thins the mucus)

-An Acapella (you blow into it to "shake" the mucus off the sides of the airways so you can clear it)

-Chest P.T (we use these cups on her back and chest and side to do the same thing -- the respiratory therapist said that the chest p.t. is what we do when she's sick because she won't really be able to do the Acapella. she said usually one or the other but we're to do both for right now so that I can get good at the p.t. before she's sick, rather than having to learn it WHEN she's sick).

-All kinds of blood tests to test for immune deficiencies, make sure she's responded to her vaccinations appropriately, and to make sure she has no infections we can't see (that's the CBC-reactive protein test -- he said if the numbers look good, they'll serve as a baseline for future tests when we need to see if she has an infection somewhere)

-a sweat test to verify that she doesn't have cystic fibrosis

-she does her Xopenex neb twice a day, at least

-Flovent inhaler

-he sent her to the gastroenterologist because often reflux plays a role with bronch. we know she has reflux but now we need to get more aggressive in seeing if we can fix it so it can't cause future further damage

I think he's a pretty aggressive guy, which works for me. I'd rather not have to wonder on down the line , if she gets worse, if I should have done something that I had chosen not to do, you know?

So -- there's an idea of what we had on our first visit after diagnoses. It was a little overwhelming, so be prepared for that! You might take someone with you to take notes, think up questions, help you remember what he says, etc.

Good luck!

Danelle Fortune

RE: New Member

Hi Barb,

I know exactly where Waukesha is. Hello up there. I asked Norma earlier... do you think the climate we live in has anything to do with this disease. Does anyone know if it would be more beneficial to live in different climate, like Denver or anywhere in Arizona, a very dry climate? I have been thinking about this quite a bit lately.

It is interesting that you say that your condition worsened after being diagnosed. Mine definitely has and I have been thinking that the reason may be the addition of either Advair or Singular. Most of my problems have been with my sinuses. Now, since being diagnosed, my sinuses are remaining clear and my lung are getting infected. I just have a bad feeling that the Advair is causing more problems with my lungs. What do you think?

My pulm hasn't discussed PD yet, but my husband and I have read a lot about it and he has been pounding on my back each night before bed. It hasn't been working. I have been interested in the vests that some of the members have referenced. And, I have questions for my pulm about products like Robutussan (sp?) to thin the mucus. I have also read a lot about the benefits of garlic related to lung infections. Do you know much about this? My next appointment with my pulm is on June 22 and I have about 2 pages of questions for him. I appreciate your thoughts on the rotating of antibiotics. I guess my biggest concern is the resistance. The second is that I was hoping to have another child soon. I am fortunate to have one. He is almost 3. I am going to be 39 this year, so time is not on my side. As it is, I worry about being able to have a healthy pregnancy. Any thoughts?

Again, I really appreciate everyone's advice.

Barbara Erdmann wrote:

Hi ,

I live in Waukesha, Wisconsin—just west of Milwaukee. I also use Advair and Singulair and feel that both have helped some. My lungs worsened quite a bit during the first four years after I was diagnosed. I finally wound up have lung surgery. That was three years ago and although I still get infections (I’m fighting one right now), I’m certainly doing better than I was before the surgery. My pulmonologist feels that there’s less chance of building up resistance by rotating the antibiotics. It seems to be kind of a catch 22—if you take the antibiotics, they might not do much good down the road. But if you don’t take them, you can wind up damaging your lungs even more. Personally, I’d like to at least make it to the point that I have to worry about a resistance factor. I don’t plan on letting the infections do me in before that. Has your doctor given you advice on how to clear your lungs? Many of us do postural drainage (with or without pounding) and/or use a flutter valve. Some of these thing work for some and not for others but they are certainly worth trying. My doctor also says to keep exercising. He said that anything that makes your lungs work hard is good. (That’s easy for him to say, he doesn’t have bronch.) Oh well, I keep telling myself that

exercise IS GOOD.

You’ll probably never get your old life back, but life can still be good with broch.

Barb

-----Original Message-----From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of WardSent: Friday, June 03, 2005 12:57 PMTo: bronchiectasis Subject: New Member

Hi All,

I am a new member to the group. I was just diagnosed with Bronchiectasis after suffering for approximately 15 years. I was seeing an ENT because my problems began with my sinuses. I have had 3 sinus surgerys since 1997. Last year, my infections came with more frequency, about 1 every 2 months and I was put on antiobiotics 6 times. I also starting experienceing episodes of breathlessness. And, I lost about 12 - 15 pounds off my ideal weight. I had one case of pneumonia last year (have had 4 in all). I saw 2 different pulmonologists, one thought I had Asthma.. the other ran an ashtma test and said I was fine. Finally, an oncologist I was seeing for another matter, suggested that I might have something called Bronchiectasis and I should see a pulmonologist colleague of his. Which brings me to

today. After a number of tests, Xray and CT Scans, I have been put on Adviar and Singular, yet my shortness of breath has increased. My last run with antibiotics ended about 2 weeks ago and I think I have yet another infection, but this time it is in my lungs rather than my sinuses. My pulm is suggesting that I go on a antibiotic plan (rotating the drugs for one week each month), but I am afraid of possibly building up a resistance to antibiotics.

I am frustrated and very afraid. In addition to the Advair and Singular, I use Nasonex and Grossan (a nasal irrigator) to keep my sinuses clear. I have also started drinking tea with eucalyptus. But I am often short of breath and exhaused. Have any of your tried anything else that has worked? I just want my life back.

__________________________________________________

Report post · June 5, 2005

Thank you Sandy. I am taking your advice and eliminating eucalyptus tea from my routine, for now. I switched to green tea this morning. I will keep you posted.

sandy taylor wrote:

Hello Kim, welcome to the group.I am only on here for a few minutes and will be back later, just to let you know, that many herbal teas, whether home grown and made or purchased are wonderful for bronch, sinus etc, but if you suffer shortness of breath, whether its the bronch , or asthma, you may find the eucalyptus used as a tea, could be aggrevating the wheeze or causing the shortness of breath.I use all there is to use literally for my bronch, asthma , the bronch I havent had a problem with for many years, but asthma flares up when I have to be out there where smells, coughs and colds, smoke etc are.As a rule I keep my distance from any thing that triggers my asthma, but sometimes its impossible especially when i am in a hospital setting many times a week.I se eucalyptus oil for washing floors, infused for sinus( not needing

to do that much either nowadays), I use it for all cleaning etc, and also use a drop in stews too.But being asthmatic, I find it takes my breath away when in tea form, while I,m not well, with asthma or just chesty.It really could be causing the extra shortness in breath,There are lots of great teas to be made, and you can usually tailor one for different ailments, as I do.I use all my natural remedies( my potions) as an everyday thing now, never looked back as far as infections.I truly can tell you I haven,t had any kind of infection since my spinal op 3 years ago, and that infection caused me to die, but thankfully I here to tell the story, but that was immediately after surgery.I eat and drink all kinds of natural , herbal, etc.Just routine now, garlic, onions, chilli, ginger, potatoes, leeks, sweet potato etc.Try something different in tea form just to see.Elimanate the eucalyptus oil for a day or 2

,Marmalade teas, cammomile, peppermint, can be put together with almost anything, as can rosemary, or lemon balm, lavender etc.Give it a go to see if its not the eucalyptus oil thats the worry.Once you find out, you can reintroduce it to cleaning etc, then go from there.Welcome once again,Sandy T.( sillysandy) Australia, 59 yrs

Yahoo! Mail Stay connected, organized, and protected. Take the tour

Report post · November 16, 2006

Don't let anyone operate on your neck or carpal tunnel until you get your

symptoms

under control.

Tests said I had spinal stenosis and carpal tunnel in both wrists. I didn't.

Cleared up immediately when we got the fluid back into them.

You sound like an Overly Acidic Fibro like I am.

Annie

new member

Hi I am new here too. I was diagnosed 3 years ago with fibro. They

thought it was RA at first with the high factor in the blood. The dr

did a second work up and found that I didn't have it. So they said it

was fibro. Some days are good while others are really bad.

The Chiropractor really helps the headaches etc. Just found from the

exrays today that I also have a pinched nerve in the neck going down

the arm to the carpel tunnel. It is slowley getting better.

I have tried taking different anti flamatories and found that voltaren

works best for me. I can't eat things acidity either as my refux is

acting up due to the medication.

I am slowley changing my eating habits to multi grain foods foods with

low sat fats etc. More flax seed in foods etc.

What is everyone else doing for diet and pain management

Doreen

Report post · November 16, 2006

Hi Doreen,

If you feel your diet plays an important role in your pain maybe the book

'eat right 4 your type' is something for you. In that it explains why people

with different bloodtypes do better with different diets.

When I looked up what would be best for me, I found out that (without being

aware of this whole theory) I already ate 80% of what was best for me. And

the stuff I was advised not to eat, doesn't do well in my digest system.

Like whole milk and meat; they might work great for other bloodtypes though.

Maybe that's worth looking at..

Chiara

_____

From: fibromyalgiacured

[mailto:fibromyalgiacured ] On Behalf Of Anne Hillebrand at

www.FibroFix.com

Sent: Thursday, November 16, 2006 10:23 PM

To: fibromyalgiacured

Subject: Re: new member

Don't let anyone operate on your neck or carpal tunnel until you get your

symptoms

under control.

Tests said I had spinal stenosis and carpal tunnel in both wrists. I didn't.

Cleared up immediately when we got the fluid back into them.

You sound like an Overly Acidic Fibro like I am.

Annie

new member

Hi I am new here too. I was diagnosed 3 years ago with fibro. They

thought it was RA at first with the high factor in the blood. The dr

did a second work up and found that I didn't have it. So they said it

was fibro. Some days are good while others are really bad.

The Chiropractor really helps the headaches etc. Just found from the

exrays today that I also have a pinched nerve in the neck going down

the arm to the carpel tunnel. It is slowley getting better.

I have tried taking different anti flamatories and found that voltaren

works best for me. I can't eat things acidity either as my refux is

acting up due to the medication.

I am slowley changing my eating habits to multi grain foods foods with

low sat fats etc. More flax seed in foods etc.

What is everyone else doing for diet and pain management

Doreen

Report post · November 17, 2006

I have secondary parathyroid which affects my calcium.

My pain doctor that I went to yesterday said she

thinks some or maybe all of my bone pain is coming

from calcium levels. Something with the metabolism.

Strange she said that because i had just read about

this at www.ezorbonline.com and click on fibromyalgia.

I ordered some. I was on it for a month but stopped

and i think I should have given it more time, I know I

should have.....Tonya P.S. Hope everyone feels better

soon. I do believe there is a cure for us all by

getting our colons where it needs to get for better

absorbtion,etc. and getting the nutrition that we are

deficient in.

--- " Anne Hillebrand at www.FibroFix.com "

wrote:

> Don't let anyone operate on your neck or carpal

> tunnel until you get your symptoms

> under control.

>

> Tests said I had spinal stenosis and carpal tunnel

> in both wrists. I didn't.

>

> Cleared up immediately when we got the fluid back

> into them.

>

> You sound like an Overly Acidic Fibro like I am.

>

> Annie

>

> new member

>

> Hi I am new here too. I was diagnosed 3 years ago

> with fibro. They

> thought it was RA at first with the high factor in

> the blood. The dr

> did a second work up and found that I didn't have

> it. So they said it

> was fibro. Some days are good while others are

> really bad.

> The Chiropractor really helps the headaches etc.

> Just found from the

> exrays today that I also have a pinched nerve in

> the neck going down

> the arm to the carpel tunnel. It is slowley

> getting better.

>

> I have tried taking different anti flamatories and

> found that voltaren

> works best for me. I can't eat things acidity

> either as my refux is

> acting up due to the medication.

>

> I am slowley changing my eating habits to multi

> grain foods foods with

> low sat fats etc. More flax seed in foods etc.

>

> What is everyone else doing for diet and pain

> management

> Doreen

>

> [Non-text portions of this message have been

> removed]

>

________________________________________________________________________________\

____

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Report post · May 18, 2007

On Mon, 07 May 2007 03:23:18 -0000, " deborahblacksher "

wrote:

> I hurt everyday. I never know from one day to the next. I've been

> asked to participate in a new study at Vanderbilt University. I'm

> trying to keep my job but don't know how long I'll be able to.

> Recently the worst thing has been the fatigue...God it's horrible.

Hi Deborah,

I know what you are talking about because I went through all this and

more... I suggest that you visit my Web site where I have reported what

I have done to cure myself. I ensure you that since more than two years

now I am totally cured from Fibromyalgia. It was difficult, especially

because I had no support from no where, the doctors all told me that

there is no cure, so I investigated myself and then I tried several

things. You will read about it...

The most important and this I will tell you now, is that I was

meditating since many years and this gave me the inner strength to not

depend on the medical system and to go on, investigating myself and then

just doing what felt right.

So as the most important I suggest that you start with an easy exercise.

I call it 'Stress Release Exercise'. I have described it in:

http://falconblanco.org/release/ You can start with it right now just

from the given advice. If there is a doubt or difficulties showing up,

you can ask me.

My testimonial about the Fibromyalgia is much more complicate and you

will need some energy to go through all this and then start to do

something. You need to use your intuition and also listen to your body

carefully. But you can have the trust that you get out of this. Be aware

that your healing from this disease is a transformational process where

your whole being is involved and as long the medical system is limited

to treating symptoms, it is better to be very critical...

You are responsible for yourself, get out of dependence!

Namaste

BeiYin

- -

BeiYin's Testimonial:

http://falconblanco.com/health

Report post · February 20, 2008

,

I've had Fibro for 15 years now and have never gotten blisters

nor have I heard of that happening and I've researched a lot. I think you

should get that checked out.

I'm working on getting SSI and it's a pain. I find myself just

wanting to hide out in my bed and wait till it's all over. Of course that

doesn't work and I'm not doing that but I want to. And no one gets what I'm

going through. I get platitudes of 'you'll get better' and such. No, I

seem to be getting worse. I can't do anything I used to do and loved. My

life has changed drastically and my poor husband suffers from who I've

become, too.

Hugs,

Jane

******************************

Subject: New member

Hi my nanme is

one thing I do every month is get a B12 shot. It helps me with my

pain. I know when I am late with my shot because the pain comes back.

I'm not saying it takes all the pain away, but it sure does help. I

have suffered with fibro for 21 years. It took years of test to find

out what I had. It started after the birth of my last child. I first

thought I had the flu, but it would not go away. So after 5 years of

test and ruling every thing out they came up with fybro. By 1999 I

could no longer work and now I am on SSA. The worst part is family

and friends don't understand. I wanted to know if anyone gets small

blisters on thier body. I don't know if this is part of fybro.

Thank you

in advance

Report post · February 20, 2008

--

I find this really interesting. Because even though your was 21 years ago, mine

started 8 years ago. And like yours, mine started right after childbirth. Weird.

I just wonder if it has something to do with hormones like Ive heard.

--

****************************************

Blessings from ~a

Proud Mommy ~ to ~

Nickolas 10 (2/4/98)

Brenden 8 (1/12/00)

http://www.simpliessential.com

****************************************

-------------- Original message ----------------------

> Hi my nanme is

> one thing I do every month is get a B12 shot. It helps me with my

> pain. I know when I am late with my shot because the pain comes back.

> I'm not saying it takes all the pain away, but it sure does help. I

> have suffered with fibro for 21 years. It took years of test to find

> out what I had. It started after the birth of my last child. I first

> thought I had the flu, but it would not go away. So after 5 years of

> test and ruling every thing out they came up with fybro. By 1999 I

> could no longer work and now I am on SSA. The worst part is family

> and friends don't understand. I wanted to know if anyone gets small

> blisters on thier body. I don't know if this is part of fybro.

> Thank you

> in advance

>

Report post · February 21, 2008

I DO BELIEVE FIBRO MAY HAVE SOMETHING TO DO WITH HORMONES ALSO. MEN GET IT

TOO THOUGH, NOT AS OFTEN AS WOMEN. BUT MINE STARTED AFTER A HYSTERECTOMY.

BIG TIME. AND THERE ARE OTHER HORMONES, LIKE THYROID, INSULIN,

TESTOSTERONE, PREGNELONE, 3 TYPES OF ESTROGEN, ETC. TO BALANCE THOSE IS A

REAL TIGHT WIRE ACT.

MY DOCS HAVE TRIED MANY HORMONAL THERAPIES AND THEY ALL MAKE ME WEEPY, GAIN

WEIGHT AND DON¹T RELIEVE HOT FLASHES OR SLEEPLESSNESS. I HAVE MADE MY OWN

CONCOCTIONS FROM TRIAL AND ERROR.

ALSO, MEDITATION SETTLES HORMONES. A LOT!!

THERE IS A BOOK THAT IS ABOUT TEN YEARS OLD NOW WRITTEN BY ALICE BURMEISTER.

ITS ABOUT USING YOUR OWN HANDS TO HEAL YOURSELF. ITS CALLED THE TOUCH OF

HEALING.

I AM AMAZED AT THE RESULTS. YOU CAN DO IT WATCHING TV, RIDING THE BUS,

LYING IN BED ETC. I JUST FEEL SMOOTHER, LESS UPSET AT EVERYTHING, MORE

RELAXED ETC. AND YOU CAN DO IT YOURSELF, WHENEVER YOU WANT AND ITS FREE!!!

HOPE THIS HELPS SOMEONE LIKE IT DID ME.

ROSEMARIE

On 2/20/08 5:16 PM, " shawnascott@... "

wrote:

>

> --

> I find this really interesting. Because even though your was 21 years ago,

> mine started 8 years ago. And like yours, mine started right after childbirth.

> Weird. I just wonder if it has something to do with hormones like Ive heard.

>

> --

> ****************************************

> Blessings from ~a

> Proud Mommy ~ to ~

> Nickolas 10 (2/4/98)

> Brenden 8 (1/12/00)

> http://www.simpliessential.com

> ****************************************

>

> -------------- Original message ----------------------

> From: " " <shortshiz2000@... <mailto:shortshiz2000%40yahoo.com> >

>> > Hi my nanme is

>> > one thing I do every month is get a B12 shot. It helps me with my

>> > pain. I know when I am late with my shot because the pain comes back.

>> > I'm not saying it takes all the pain away, but it sure does help. I

>> > have suffered with fibro for 21 years. It took years of test to find

>> > out what I had. It started after the birth of my last child. I first

>> > thought I had the flu, but it would not go away. So after 5 years of

>> > test and ruling every thing out they came up with fybro. By 1999 I

>> > could no longer work and now I am on SSA. The worst part is family

>> > and friends don't understand. I wanted to know if anyone gets small

>> > blisters on thier body. I don't know if this is part of fybro.

>> > Thank you

>> > in advance

>> >

>

Report post · February 21, 2008

I've never heard or read that Fibro has anything to do with hormones but yes

on stress. Though it's a natural occurrence, pregnancy is stressful on the

body. I never had kids but took care of my mom for 16 years and got totally

stressed even though she was the most wonderful person in the world. I was

always a sicky kid and have also always been sensitive. Women tend to be

more sensitive than men and there's a much higher rate of Fibro in women

than men. Now, this is just me summarizing but it could be a precursor to

why we get Fibromyalgia. I don't know. But mine started with little weird

symptoms, well not that little. The first one I remember was when I was

coming home from class and had to take the bus that day. I felt a bit odd

but nothing I could put my finger on. When I tried to walk the rest of the

way home I felt like I couldn't breathe. We lived up a steep hill but I

hadn't even gotten to the hill part. It was really scary and I got lucky

that a nurse saw my with my hands to my throat, the universal choking sign

(I didn't even think about it at the time) and she gave me a ride home,

though she wanted to take me to the hospital. That happened for years. A

weird symptom that would go away and come back not as bad. I'd go to the

doctor and be told I was fine or what ever. I went through that for 10

years before I figured out what was probably going on and went to a

rheumatologist who confirmed my suspicions. The excessive pain didn't come

until after that. I'd say it got really bad about a year after I was

diagnosed. But, I started having seizures a year before I was diagnosed.

It's been a rough ride and no matter what I do or try nothing helps 100% by

any means. Some things help but I'm so tired of being like this. Now, I'm

trying to go on social security because I can no longer work. Truth is, I

can't do anything I used to love to do, things that define who I am. I no

longer feel like the same person yet that person is laying in me always

wishing to come out again and be free. It's no wonder we get depressed.

Well, enough for now.

Hugs and have a decent night's sleep,

Jane

_____

From: fibromyalgiacured

[mailto:fibromyalgiacured ] On Behalf Of

shawnascott@...

Sent: Wednesday, February 20, 2008 2:16 PM

To: fibromyalgiacured

Subject: Re: New member

--

I find this really interesting. Because even though your was 21 years ago,

mine started 8 years ago. And like yours, mine started right after

childbirth. Weird. I just wonder if it has something to do with hormones

like Ive heard.

--

****************************************

Blessings from ~a

Proud Mommy ~ to ~

Nickolas 10 (2/4/98)

Brenden 8 (1/12/00)

http://www.simplies <http://www.simpliessential.com> sential.com

****************************************

-------------- Original message ----------------------

From: " " <shortshiz2000@ <mailto:shortshiz2000%40yahoo.com> yahoo.com>