Re: Chronic Fatigue Syndrome / Fibromyalgia & Autonomic Dysfunction

April 25, 2002

Pam, thanks a lot for posting this info! I have Fibromyalgia and I am always looking for something that might help me deal with it better. Al is in advanced stages of MSA, and I am his caregiver, or as Annette says, his love giver. But there are days I feel like I need a caregiver! You are so much help with the sites and articles you us! Hugs, Pat in OK

April 25, 2002

Pam, thanks a lot for posting this info! I have Fibromyalgia and I am always looking for something that might help me deal with it better. Al is in advanced stages of MSA, and I am his caregiver, or as Annette says, his love giver. But there are days I feel like I need a caregiver! You are so much help with the sites and articles you us! Hugs, Pat in OK

April 26, 2002

Hi there, I hope you don't mind me emailing you. II saw your email in the shydrager site and could not resist speaking to someone with a similar problem, because I sometimes get to feel so isolated, with this problem. I have been watching this site for a little while now, as I was quite surprised to find how many of the symptoms these people talked about, were the same as mine. My name is Bill Pilgrim. I live in Ipswich, Queensland, Australia and have been diagnosed a long time ago, first as CFS then later as Fibromyalgia. I am 67 years old and have had a couple of lots of Coronary Arery Bypass Surgery. My Doctor put me on Kapanol SR (Morphine Sulphate Slow Release) about 7 or so years ago for the pain, which was unrelenting. Recently the GP I see started to change me over to Physeptone or Methadone (I think that is correct). My Wife and I have been married 45 years this 16th November, and have 4 Children. The Older Son Lawrence died last year, 42 years, from a massive heart attack. The youngest Son Brett, has also been diagnose as having Fibromyalgia, and I suspect my elder Daughter, also has the problem, but she does not want to know about it yet. We have one Daughter, Donna, the third child, who seems to have escaped, so far. I also have a Nephew, My Older Brother's Son who has also been diagnosed. I am afraid it may be something else that we have, as Fibromyalgia is not supposed to be heridetary.

I guess if you have the thing yourself, I don't need to tell you the symptoms. I am going to see a Respiratory Specialist next week to see if he can shed any light on my breathing problems.

I guess I have already gone too far if you don't wish to be emailed, so I will quit now before I overdo it too much.

Regards from Bill Pilgrim bpilgrim@...

Re: Chronic Fatigue Syndrome / Fibromyalgia & Autonomic Dysfunction

Pam, thanks a lot for posting this info! I have Fibromyalgia and I am always looking for something that might help me deal with it better. Al is in advanced stages of MSA, and I am his caregiver, or as Annette says, his love giver. But there are days I feel like I need a caregiver! You are so much help with the sites and articles you us! Hugs, Pat in OK If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

April 29, 2002

Hello again Everybody.

I have receivede several mails from various people with explanations to try

to assist me in understanding. I must say thanks, even if I am not smart

enough to know just what is wrong with me. I am still ploughing my way

through, trying to get results and explanations from Doctors. I have been

chasing the Medical Profession, for something like three years with

breathing problems. I have been sent home several times, once from Hospital

after being taken in by Ambulance, because I was having severe difficulties.

The GP took a Cardiograph and ihe said it was so odd he wanted me in

hospital, even though I went in for my breathing problems. Each time I was

sent home again, I was told to take, and given tranquilisers to fix my Panic

Attack. Today I visited a Respiratory Physician, and found out I have

moderate to severe Asthma, with my Airways reduced to less than 1/2 their

normal diameter. After three years, even if Asthma is not the best thing to

have, at least I know and at least it is not the worst thing I could have.

I have to go back to the Respiratory Physician again as he has not seen the

results from the Lung Scansyet. One more Question. I've had a look at the

results on the lung scans, while I am waiting for my next appointment. It

talks about " linear fibrotic changes suggesting post inflamatory scaring and

multiple enlarged lymph nodes " . Does this ring a bell for any symptoms

anyone has come accross.

Once again thanks for the responses. Bill P.

Chronic Fatigue Syndrome / Fibromyalgia & Autonomic

Dysfunction

> These are the sites I remember reading that said autonomic dysfunction is

> often a symptom of Chronic Fatigue Syndrome:

>

> Chronic Fatigue Immune Dynsfunction (CFIDS) -- also known as Myalgic

> Encephalopathy (ME) and Chronic Fatigue

> Syndrome (CFS)

>

> ME (CFIDS) Being Misdiagnosed as Multiple Sclerosis

> http://www.ncf-net.org/forum/Misdiagnosed.html

> (This lists a bunch of symptoms, many of them are similar to Multiple

System

> Atrophy)

>

> National CFIDS Foundation

> http://www.ncf-net.org/

> The National CFIDS Foundation, Inc. was founded in February 1997 by two 14

> year activists of the movement. The goals of the Foundation are to help

> fund medical research to expedite a treatment and eventual cure, to

provide

> information, education, and support to those people who have Chronic

Fatigue

> Immune Dynsfunction (CFIDS) -- also known as Myalgic Encephalopathy (ME)

and

> Chronic Fatigue Syndrome (CFS) -- and related illnesses such as Gulf War

> Illness.

>

> National ME/FM Action Network

> http://www3.sympatico.ca/me-fm.action/

> The National ME/FM Action Network is a registered, charitable, non-profit

> organization dealing with Myalgic Encephalomyelitis/Chronic Fatigue

Syndrome

> and Fibromyalgia (ME/FM)--offering support, advocacy, education and

research

> into the many, varied, anomalies connected with these illnesses

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

April 29, 2002

Bill,

Several questions come to mind, have you been a heavy smoker?

Is this in addition to autonomic failure (low BP)? In what part of

Australia do you live? Is it extremely humid there? What kind

of work did you do, were you around many chemicals such as industrial cleaners,

pesticides or herbicides? Are you overweight?

It sounds as if they may be treating you for high BP. I think

your doctors seem to be working on the problem, are you carefully following

their instructions?

The lung/lymph node stuff sounds as if you are recovering from some

sort of infection - probably pneumonia. However, I am not a doctor.

If you had pneumonia in the last year, you may need to get into some sort

of respiratory exercise treatment.

Take care, Bill Werre - Virginia, USA

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

Bill Pilgrim wrote:

Hello again Everybody.

I have receivede several mails from various people with explanations

to try

to assist me in understanding. I must say thanks, even if I am

not smart

enough to know just what is wrong with me. I am still ploughing

my way

through, trying to get results and explanations from Doctors.

I have been

chasing the Medical Profession, for something like three years with

breathing problems. I have been sent home several times, once

from Hospital

after being taken in by Ambulance, because I was having severe difficulties.

The GP took a Cardiograph and ihe said it was so odd he wanted me in

hospital, even though I went in for my breathing problems. Each time

I was

sent home again, I was told to take, and given tranquilisers to fix

my Panic

Attack. Today I visited a Respiratory Physician, and found out

I have

moderate to severe Asthma, with my Airways reduced to less than 1/2

their

normal diameter. After three years, even if Asthma is not the

best thing to

have, at least I know and at least it is not the worst thing I could

have.

I have to go back to the Respiratory Physician again as he has not

seen the

results from the Lung Scansyet. One more Question. I've

had a look at the

results on the lung scans, while I am waiting for my next appointment.

It

talks about "linear fibrotic changes suggesting post inflamatory scaring

and

multiple enlarged lymph nodes". Does this ring a bell for any

symptoms

anyone has come accross.

Once again thanks for the responses. Bill P.

May 1, 2002

Thanks Bill W.

Yes I smoked until 1980, but never really heavy. I think I would burn more than I smoked, as I could never leave a cigarette in my mouth while I worked etc. I am not too sure what you mean when you ask is this as well as Autonomic failure (Low BP). I live in Ipswich, which is West or South West of Brisbane and inland about 30 odd miles. It is somewhat humid and gets anything up to 5 degrees C hotter and 5 degrees C cooler than Brisbane. I think many people in Australia my age would have been in contact wiyh Herbacides and Pesticides as the Government was continually trying to tell us that 24D and many of the Organo chlorides were perfectly safe for many years. We even had stupid people showing how safe they were by drinking the stuff. I was at Amberley Air Base in 1954 - 55 when I did my National Service Training and there are a few rumours regarding chemicals and Radioactive materials being there at that time ( I believe some of the Aircraft that took part in Nuclear testingin Southern Australia were with us). My weight has gone up to 110 kg over the last few years (The specialist I was seeing until recently said that was because my metabolism was wrong, and I would improve when I got better) and I can't seem to get it down. I would like to be about 85 kg. I am just a bit under 6 ft tall. I have a lot more confidence in the doctor I am seeing now, but I was repeatedly sent away after being told I had "Panic attacks". Unfortunately the Medical Profession in this country, generally treats any person as a Psychiatric case if CFS or Fibromyalgia is mentioned I could have a small rise in BP, but normally my BP has been about 125 /65, but that depends on the circumstances. They put me on PB tablets immediately after my last Bypass Surgery and said they would help my heart. I was an Electrician most of my life, but changed to Teaching after my first Bypass Surgery and TIA at 50 years of age. I studied and obtained a Diploma of Technical Teaching in about 1986. Ever since then, until I was made redundant, I taught, and loved every minute of it. About two years ago now I was a mess with Pneumonia and had about 10 days in hospital. I think it was from the Mycoplasma bug.

Bill you seem to know what you are talking about. I think my Asthma problems which I was told about last week is exacerbated by a nursery supply place which has expanded opperations in our area, abou 3oo meters away from our home. They turn over large quantities of Mushroom compost. I don't know why the Local Council allowed them to start. I am sure that the WHO would have standards that would not allow this, if only I could find out. I will ask my GP if he can advise regarding respiratory exercises. This could start me on the way to being able to tolerate more physical exercise. I had better keep out of hospital here at present, It would appear that our Doctors are stopping work, because they don't have any insurance.

Again, many thanks for your input.

Regards from Bill P.

Re: Chronic Fatigue Syndrome / Fibromyalgia & Autonomic Dysfunction

Bill, Several questions come to mind, have you been a heavy smoker? Is this in addition to autonomic failure (low BP)? In what part of Australia do you live? Is it extremely humid there? What kind of work did you do, were you around many chemicals such as industrial cleaners, pesticides or herbicides? Are you overweight? It sounds as if they may be treating you for high BP. I think your doctors seem to be working on the problem, are you carefully following their instructions? The lung/lymph node stuff sounds as if you are recovering from some sort of infection - probably pneumonia. However, I am not a doctor. If you had pneumonia in the last year, you may need to get into some sort of respiratory exercise treatment. Take care, Bill Werre - Virginia, USA -------------------------------------------------------------------- Bill Pilgrim wrote: Hello again Everybody. I have receivede several mails from various people with explanations to try to assist me in understanding. I must say thanks, even if I am not smart enough to know just what is wrong with me. I am still ploughing my way through, trying to get results and explanations from Doctors. I have been chasing the Medical Profession, for something like three years with breathing problems. I have been sent home several times, once from Hospital after being taken in by Ambulance, because I was having severe difficulties. The GP took a Cardiograph and ihe said it was so odd he wanted me in hospital, even though I went in for my breathing problems. Each time I was sent home again, I was told to take, and given tranquilisers to fix my Panic Attack. Today I visited a Respiratory Physician, and found out I have moderate to severe Asthma, with my Airways reduced to less than 1/2 their normal diameter. After three years, even if Asthma is not the best thing to have, at least I know and at least it is not the worst thing I could have. I have to go back to the Respiratory Physician again as he has not seen the results from the Lung Scansyet. One more Question. I've had a look at the results on the lung scans, while I am waiting for my next appointment. It talks about "linear fibrotic changes suggesting post inflamatory scaring and multiple enlarged lymph nodes". Does this ring a bell for any symptoms anyone has come accross. Once again thanks for the responses. Bill P.If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

May 1, 2002

Thanks Bill W.

Yes I smoked until 1980, but never really heavy. I think I would burn more than I smoked, as I could never leave a cigarette in my mouth while I worked etc. I am not too sure what you mean when you ask is this as well as Autonomic failure (Low BP). I live in Ipswich, which is West or South West of Brisbane and inland about 30 odd miles. It is somewhat humid and gets anything up to 5 degrees C hotter and 5 degrees C cooler than Brisbane. I think many people in Australia my age would have been in contact wiyh Herbacides and Pesticides as the Government was continually trying to tell us that 24D and many of the Organo chlorides were perfectly safe for many years. We even had stupid people showing how safe they were by drinking the stuff. I was at Amberley Air Base in 1954 - 55 when I did my National Service Training and there are a few rumours regarding chemicals and Radioactive materials being there at that time ( I believe some of the Aircraft that took part in Nuclear testingin Southern Australia were with us). My weight has gone up to 110 kg over the last few years (The specialist I was seeing until recently said that was because my metabolism was wrong, and I would improve when I got better) and I can't seem to get it down. I would like to be about 85 kg. I am just a bit under 6 ft tall. I have a lot more confidence in the doctor I am seeing now, but I was repeatedly sent away after being told I had "Panic attacks". Unfortunately the Medical Profession in this country, generally treats any person as a Psychiatric case if CFS or Fibromyalgia is mentioned I could have a small rise in BP, but normally my BP has been about 125 /65, but that depends on the circumstances. They put me on PB tablets immediately after my last Bypass Surgery and said they would help my heart. I was an Electrician most of my life, but changed to Teaching after my first Bypass Surgery and TIA at 50 years of age. I studied and obtained a Diploma of Technical Teaching in about 1986. Ever since then, until I was made redundant, I taught, and loved every minute of it. About two years ago now I was a mess with Pneumonia and had about 10 days in hospital. I think it was from the Mycoplasma bug.

Bill you seem to know what you are talking about. I think my Asthma problems which I was told about last week is exacerbated by a nursery supply place which has expanded opperations in our area, abou 3oo meters away from our home. They turn over large quantities of Mushroom compost. I don't know why the Local Council allowed them to start. I am sure that the WHO would have standards that would not allow this, if only I could find out. I will ask my GP if he can advise regarding respiratory exercises. This could start me on the way to being able to tolerate more physical exercise. I had better keep out of hospital here at present, It would appear that our Doctors are stopping work, because they don't have any insurance.

Again, many thanks for your input.

Regards from Bill P.

Re: Chronic Fatigue Syndrome / Fibromyalgia & Autonomic Dysfunction

Bill, Several questions come to mind, have you been a heavy smoker? Is this in addition to autonomic failure (low BP)? In what part of Australia do you live? Is it extremely humid there? What kind of work did you do, were you around many chemicals such as industrial cleaners, pesticides or herbicides? Are you overweight? It sounds as if they may be treating you for high BP. I think your doctors seem to be working on the problem, are you carefully following their instructions? The lung/lymph node stuff sounds as if you are recovering from some sort of infection - probably pneumonia. However, I am not a doctor. If you had pneumonia in the last year, you may need to get into some sort of respiratory exercise treatment. Take care, Bill Werre - Virginia, USA -------------------------------------------------------------------- Bill Pilgrim wrote: Hello again Everybody. I have receivede several mails from various people with explanations to try to assist me in understanding. I must say thanks, even if I am not smart enough to know just what is wrong with me. I am still ploughing my way through, trying to get results and explanations from Doctors. I have been chasing the Medical Profession, for something like three years with breathing problems. I have been sent home several times, once from Hospital after being taken in by Ambulance, because I was having severe difficulties. The GP took a Cardiograph and ihe said it was so odd he wanted me in hospital, even though I went in for my breathing problems. Each time I was sent home again, I was told to take, and given tranquilisers to fix my Panic Attack. Today I visited a Respiratory Physician, and found out I have moderate to severe Asthma, with my Airways reduced to less than 1/2 their normal diameter. After three years, even if Asthma is not the best thing to have, at least I know and at least it is not the worst thing I could have. I have to go back to the Respiratory Physician again as he has not seen the results from the Lung Scansyet. One more Question. I've had a look at the results on the lung scans, while I am waiting for my next appointment. It talks about "linear fibrotic changes suggesting post inflamatory scaring and multiple enlarged lymph nodes". Does this ring a bell for any symptoms anyone has come accross. Once again thanks for the responses. Bill P.If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

May 1, 2002

Bill,

Remember that I am not a medical person at all, I am an engineer and

draw on my personal experiences to offer suggestions. These suggestions

are aimed at communicating with your personal doctor to get the best care.

Living near a nursery with a large compost heap in a humid area could

well affect you if you are allergic to mold. You should mention that

to your doctor and that friends have told you it could be allergies.

Pneumonia does leave scarring in the lungs, I don't know how long. And

lymph nodes swell usually if you get any type of infection. As long

as your doctor knows about them, they can offer the best course of action.

Keep talking to your GP about what is going on as communicating with them

seems to be your best bet.

Note I am going to be in Southport, QLD, which must be somewhat near

you from May 15 to 21 visiting the Pledger's (Anne and Tony). Maybe

we can meet one day, if you are interested, write me directly at

mailto:

Take care, Bill Werre

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

Bill Pilgrim wrote:

Thanks

Bill W.Yes I smoked until

1980, but never really heavy. I think I would burn more than I smoked,

as I could never leave a cigarette in my mouth while I worked etc.

I am not too sure what you mean when you ask is this as well as Autonomic

failure (Low BP). I live in Ipswich, which is West or South West

of Brisbane and inland about 30 odd miles. It is somewhat humid and

gets anything up to 5 degrees C hotter and 5 degrees C cooler than Brisbane.

I think many people in Australia my age would have been in contact wiyh

Herbacides and Pesticides as the Government was continually trying to tell

us that 24D and many of the Organo chlorides were perfectly safe for many

years. We even had stupid people showing how safe they were by drinking

the stuff. I was at Amberley Air Base in 1954 - 55 when I did my

National Service Training and there are a few rumours regarding chemicals

and Radioactive materials being there at that time ( I believe some of

the Aircraft that took part in Nuclear testingin Southern Australia were

with us). My weight has gone up to 110 kg over the last few years

(The specialist I was seeing until recently said that was because my metabolism

was wrong, and I would improve when I got better) and I can't seem

to get it down. I would like to be about 85 kg. I am just a

bit under 6 ft tall. I have a lot more confidence in the doctor I

am seeing now, but I was repeatedly sent away after being told I had "Panic

attacks". Unfortunately the Medical Profession in this country, generally

treats any person as a Psychiatric case if CFS or Fibromyalgia is mentioned

I could have a small rise in BP, but normally my BP has been about 125

/65, but that depends on the circumstances. They put me on PB tablets

immediately after my last Bypass Surgery and said they would help my heart.

I was an Electrician most of my life, but changed to Teaching after my

first Bypass Surgery and TIA at 50 years of age. I studied and obtained

a Diploma of Technical Teaching in about 1986. Ever since then, until

I was made redundant, I taught, and loved every minute of it. About

two years ago now I was a mess with Pneumonia and had about 10 days in

hospital. I think it was from the Mycoplasma bug.

Bill you seem to know what you are talking about. I think my

Asthma problems which I was told about last week is exacerbated by a nursery

supply place which has expanded opperations in our area, abou 3oo meters

away from our home. They turn over large quantities of Mushroom compost.

I don't know why the Local Council allowed them to start. I am sure

that the WHO would have standards that would not allow this, if only I

could find out. I will ask my GP if he can advise regarding respiratory

exercises. This could start me on the way to being able to tolerate

more physical exercise. I had better keep out of hospital here at

present, It would appear that our Doctors are stopping work, because they

don't have any insurance. Again,

many thanks for your input. Regards

from Bill P.

Re: Chronic Fatigue

Syndrome / Fibromyalgia & Autonomic Dysfunction

Bill,

Several questions come to mind, have you been a heavy smoker?

Is this in addition to autonomic failure (low BP)? In what part of

Australia do you live? Is it extremely humid there? What kind

of work did you do, were you around many chemicals such as industrial cleaners,

pesticides or herbicides? Are you overweight?

It sounds as if they may be treating you for high BP. I think

your doctors seem to be working on the problem, are you carefully following

their instructions?

The lung/lymph node stuff sounds as if you are recovering from some

sort of infection - probably pneumonia. However, I am not a doctor.

If you had pneumonia in the last year, you may need to get into some sort

of respiratory exercise treatment.

Take care, Bill Werre - Virginia, USA

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

Bill Pilgrim wrote:

Hello again Everybody.

I have receivede several mails from various people with explanations

to try

to assist me in understanding. I must say thanks, even if I am

not smart

enough to know just what is wrong with me. I am still ploughing

my way

through, trying to get results and explanations from Doctors.

I have been

chasing the Medical Profession, for something like three years with

breathing problems. I have been sent home several times, once

from Hospital

after being taken in by Ambulance, because I was having severe difficulties.

The GP took a Cardiograph and ihe said it was so odd he wanted me in

hospital, even though I went in for my breathing problems. Each time

I was

sent home again, I was told to take, and given tranquilisers to fix

my Panic

Attack. Today I visited a Respiratory Physician, and found out

I have

moderate to severe Asthma, with my Airways reduced to less than 1/2

their

normal diameter. After three years, even if Asthma is not the

best thing to

have, at least I know and at least it is not the worst thing I could

have.

I have to go back to the Respiratory Physician again as he has not

seen the

results from the Lung Scansyet. One more Question. I've

had a look at the

results on the lung scans, while I am waiting for my next appointment.

It

talks about "linear fibrotic changes suggesting post inflamatory scaring

and

multiple enlarged lymph nodes". Does this ring a bell for any

symptoms

anyone has come accross.

Once again thanks for the responses. Bill P.

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

May 1, 2002