Re: Welcome to Fibromyalgia-CFS

April 24, 2002

Age range: 23

Male/female: Female

What are the symptoms? You name it, I have it. Fatigue, insomnia, mood swings,

extreme pain, irritable bowel, skin pain, extreme depression...it's easier to

list the things I don't have. I've developed severe carpal tunnel in my left

arm as well. My doctor is looking into testing to see if surgery is needed. I

also have a foot longer large intestine than normal, which was found in a

laporoscopy when I was 16, my kneecaps are grown more to the side and tend to

dislocate and I have problems with my ankles. One has osteochondritis and

they've both had so many sprains that there's been permanent damage.

Has you illness been diagnosed? Yes, for around six or seven years now.

How long did you suffer before you got help? I was always sick, starting from

when I was very young. I had severe stomach and ear pain, which my doctor wrote

off as just wanting to get out of school. Later it was found I had symptoms of

TMJ and trigger points throughout my body.

Is there a time that you can remember when it started? When I was 14 or 15 the

extreme fatigue, depression and pain started.

Some of us have found lack of exercise we are overweight. Have you found this to

be a problem also? Yes. My joint problems and leg pain makes it almost

impossible.

Are you on disability? No, though I need to be. I'm living off of my parents

and things are getting very tight.

If you are any pointers for others trying to get on disability?

What have you found that helps ease the pain, warm baths, medications etc.? I'm

on birth control to keep my periods regular, vicodin for pain, Ambien for sleep

and now prednisone to take the swelling from the nerves in my wrist. Nothing

else has worked. Anti-depressants make my mood swings and personality

drastically change and they've tried close to every class.

Do you have sleep problems? How do you deal with it? I take one 10mg tablet of

Ambien every night.

Do you have family that understands your illness? They try, but sometimes it's

hard for them to understand how I can do some things, but others cause pain.

Some have found certain foods causes problems with CFS or Fibro, have you?

Bananas make my stomach pains worse. And sitting in some booths at restaraunts

seems to set off my IBS.

What type of Doctor have you found that has helped you the most? My regular MD

seems to want to try to keep me comfortable, which is the most any doctor has

done.

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

April 28, 2002

> Age range: 37

> Male/female: Female

> What are the symptoms? Fatigue, blurry vision,

severe migraines, pain (esp.in neck, wrists and lower

back area), vertigo, fibrofog, numbness in both arms.

> Has you illness been diagnosed? Yes in 2001.

> How long did you suffer before you got help? About

10 years.

> Is there a time that you can remember when it

> started? Yes, after a bout with Mono. Never fully

recovered and always chronically ill afterwards.

> Some of us have found lack of exercise we are

> overweight. Have you found this to be a problem

> also? No, I have struggled with weight since 1995,

but even when I am thinner and exercising, fibro is

still there.

>

> Are you on disability? No, but currently trying to

get it.

>

> What have you found that helps ease the pain, warm

> baths, medications etc.? Warm to hot baths

(sometimes), moist heat packs, pain medications (when

the pain hits a 9 or 10).

>

> Do you have sleep problems? How do you deal with it?

> Yes, I do not sleep more than 4-5 hours a night.

Have lots of trouble falling and staying asleep. I

seem to sleep in two hour stretches. I try to get

extra sleep when I can, but its not easy.

> Do you have family that understands your illness?

Have supportive husband. The rest of the family is

very unsupportive, esp. mother-in-law and sister.

> Some have found certain foods causes problems with

CFS or Fibro, have you? Yes. I know I will flare if

I eat beef or have milk or milk products.

> What type of Doctor have you found that has helped

you the most? Right now I am searching for a new

set of doctors. Primary care doctor just wanted to

keep prescribing pain meds rather than referring me

to appropriate specialists. I would love to have

physical therapy at this point.

Cari

__________________________________________________

May 25, 2002

Moderator -owner > wrote:

Hello,

Welcome to the E-mail list.

SEND POST TO: fibromyalgia-cfs

Would you share any or all of the things below? Your answer might just be a help

to someone else in some areas.

If you answer any of these questions please cut & paste it to your email, and

make a double space ( enter twice) between each question so they will not all

run together.

Age range: 39

Male/female: female

What are the symptoms? running fevers, achy joints, diarrhea, muscular pain,

chronic iritis- which is blinding me. hypoglycemia, peripheral neuropathy, very

painful/ overly sensitive spots on my body, also arthritis in the lumbar region

Has you illness been diagnosed? yes

How long did you suffer before you got help? was diagnosed 3 years ago. I am 39,

and figure I have had it since at least as far back as my teens

Is there a time that you can remember when it started? not really...I had a

tumultuous childhood...I seem to remrmber always being sick

Some of us have found lack of exercise we are overweight. Have you found this to

be a problem also? Yes, just yesterday, I weighed 343 pounds

Are you on disability? Yes., I am on SSI

If you are any pointers for others trying to get on disability? perservere!!!

I had to keep goung back everyday for a week

What have you found that helps ease the pain, warm baths, medications etc.?

sleep, Sleep, and more sleep. I have found several severe food allergies.

Eliminating them,has helped me a LOT!!

Do you have sleep problems? How do you deal with it? Yes, depending on yhe

severity, benadryl, hydroxizine, or alprazolam

Do you have family that understands your illness? no

Some have found certain foods causes problems with CFS or Fibro, have you? Milk

products, and shellfish

What type of Doctor have you found that has helped you the most? A pain

specialist....internist

If you want to leave a bio you may go to the groups page at www.yahoogroups.com,

log in to the file area, and make a folder. There you can leave a picture of

yourself, be sure to click to notify the list. You can also leave a bio by

making text file then bio.txt

Post are in text only not html codes.

SEND POST TO: fibromyalgia-cfs

May 25, 2002

Moderator -owner > wrote:

Hello,

Welcome to the E-mail list.

SEND POST TO: fibromyalgia-cfs

Would you share any or all of the things below? Your answer might just be a help

to someone else in some areas.

If you answer any of these questions please cut & paste it to your email, and

make a double space ( enter twice) between each question so they will not all

run together.

Age range: 39

Male/female: female

What are the symptoms? running fevers, achy joints, diarrhea, muscular pain,

chronic iritis- which is blinding me. hypoglycemia, peripheral neuropathy, very

painful/ overly sensitive spots on my body, also arthritis in the lumbar region

Has you illness been diagnosed? yes

How long did you suffer before you got help? was diagnosed 3 years ago. I am 39,

and figure I have had it since at least as far back as my teens

Is there a time that you can remember when it started? not really...I had a

tumultuous childhood...I seem to remrmber always being sick

Some of us have found lack of exercise we are overweight. Have you found this to

be a problem also? Yes, just yesterday, I weighed 343 pounds

Are you on disability? Yes., I am on SSI

If you are any pointers for others trying to get on disability? perservere!!!

I had to keep goung back everyday for a week

What have you found that helps ease the pain, warm baths, medications etc.?

sleep, Sleep, and more sleep. I have found several severe food allergies.

Eliminating them,has helped me a LOT!!

Do you have sleep problems? How do you deal with it? Yes, depending on yhe

severity, benadryl, hydroxizine, or alprazolam

Do you have family that understands your illness? no

Some have found certain foods causes problems with CFS or Fibro, have you? Milk

products, and shellfish

What type of Doctor have you found that has helped you the most? A pain

specialist....internist

If you want to leave a bio you may go to the groups page at www.yahoogroups.com,

log in to the file area, and make a folder. There you can leave a picture of

yourself, be sure to click to notify the list. You can also leave a bio by

making text file then bio.txt

Post are in text only not html codes.

SEND POST TO: fibromyalgia-cfs

May 25, 2002

Moderator -owner > wrote:

Hello,

Welcome to the E-mail list.

SEND POST TO: fibromyalgia-cfs

Would you share any or all of the things below? Your answer might just be a help

to someone else in some areas.

If you answer any of these questions please cut & paste it to your email, and

make a double space ( enter twice) between each question so they will not all

run together.

Age range: 39

Male/female: female

What are the symptoms? running fevers, achy joints, diarrhea, muscular pain,

chronic iritis- which is blinding me. hypoglycemia, peripheral neuropathy, very

painful/ overly sensitive spots on my body, also arthritis in the lumbar region

Has you illness been diagnosed? yes

How long did you suffer before you got help? was diagnosed 3 years ago. I am 39,

and figure I have had it since at least as far back as my teens

Is there a time that you can remember when it started? not really...I had a

tumultuous childhood...I seem to remrmber always being sick

Some of us have found lack of exercise we are overweight. Have you found this to

be a problem also? Yes, just yesterday, I weighed 343 pounds

Are you on disability? Yes., I am on SSI

If you are any pointers for others trying to get on disability? perservere!!!

I had to keep goung back everyday for a week

What have you found that helps ease the pain, warm baths, medications etc.?

sleep, Sleep, and more sleep. I have found several severe food allergies.

Eliminating them,has helped me a LOT!!

Do you have sleep problems? How do you deal with it? Yes, depending on yhe

severity, benadryl, hydroxizine, or alprazolam

Do you have family that understands your illness? no

Some have found certain foods causes problems with CFS or Fibro, have you? Milk

products, and shellfish

What type of Doctor have you found that has helped you the most? A pain

specialist....internist

If you want to leave a bio you may go to the groups page at www.yahoogroups.com,

log in to the file area, and make a folder. There you can leave a picture of

yourself, be sure to click to notify the list. You can also leave a bio by

making text file then bio.txt

Post are in text only not html codes.

SEND POST TO: fibromyalgia-cfs

May 29, 2002

> Age range: 46

>

> Male/female: female

>

> What are the symptoms?

pins and needles, very tired and weak, etc.

>

> Has you illness been diagnosed? Sort of....

>

> How long did you suffer before you got help? Still suffering

>

> Is there a time that you can remember when it started? Cfids Jan 1999

>

> Some of us have found lack of exercise we are overweight. Have you found

> this to be a problem also? Yes!

>

> Are you on disability? No, but I am applying

>

> If you are any pointers for others trying to get on disability? share info.

>

> What have you found that helps ease the pain, warm baths, medications etc.?

> Pain medication

> Do you have sleep problems? How do you deal with it? Yes, I deal with it

> by taking medications

>

> Do you have family that understands your illness? No

>

> Some have found certain foods causes problems with CFS or Fibro, have you?

> ? ?

> What type of Doctor have you found that has helped you the most?

> rheumatologist

> If you want to leave a bio you may go to the groups page at

> www.yahoogroups.com, log in to the file area, and make a folder. There you

> can leave a picture of yourself, be sure to click to notify the list. You

> can also leave a bio by making text file then bio.txt

> Post are in text only not html codes.

>

May 29, 2002

> Age range: 46

>

> Male/female: female

>

> What are the symptoms?

pins and needles, very tired and weak, etc.

>

> Has you illness been diagnosed? Sort of....

>

> How long did you suffer before you got help? Still suffering

>

> Is there a time that you can remember when it started? Cfids Jan 1999

>

> Some of us have found lack of exercise we are overweight. Have you found

> this to be a problem also? Yes!

>

> Are you on disability? No, but I am applying

>

> If you are any pointers for others trying to get on disability? share info.

>

> What have you found that helps ease the pain, warm baths, medications etc.?

> Pain medication

> Do you have sleep problems? How do you deal with it? Yes, I deal with it

> by taking medications

>

> Do you have family that understands your illness? No

>

> Some have found certain foods causes problems with CFS or Fibro, have you?

> ? ?

> What type of Doctor have you found that has helped you the most?

> rheumatologist

> If you want to leave a bio you may go to the groups page at

> www.yahoogroups.com, log in to the file area, and make a folder. There you

> can leave a picture of yourself, be sure to click to notify the list. You

> can also leave a bio by making text file then bio.txt

> Post are in text only not html codes.

>

May 29, 2002

> Age range: 46

>

> Male/female: female

>

> What are the symptoms?

pins and needles, very tired and weak, etc.

>

> Has you illness been diagnosed? Sort of....

>

> How long did you suffer before you got help? Still suffering

>

> Is there a time that you can remember when it started? Cfids Jan 1999

>

> Some of us have found lack of exercise we are overweight. Have you found

> this to be a problem also? Yes!

>

> Are you on disability? No, but I am applying

>

> If you are any pointers for others trying to get on disability? share info.

>

> What have you found that helps ease the pain, warm baths, medications etc.?

> Pain medication

> Do you have sleep problems? How do you deal with it? Yes, I deal with it

> by taking medications

>

> Do you have family that understands your illness? No

>

> Some have found certain foods causes problems with CFS or Fibro, have you?

> ? ?

> What type of Doctor have you found that has helped you the most?

> rheumatologist

> If you want to leave a bio you may go to the groups page at

> www.yahoogroups.com, log in to the file area, and make a folder. There you

> can leave a picture of yourself, be sure to click to notify the list. You

> can also leave a bio by making text file then bio.txt

> Post are in text only not html codes.

>

May 29, 2002

Hello..

I am not sure of your name..welcome…

do you mind further elaborating on “””sort of “”” diagnosis….maybe if

there are more symptoms or whom you have seen it might shed more

light…and how are you managing the medications you are taking…where are

the pins and needles specifically??

I want to welcome you but not sure what kind of help you are needing the

most right now to hone in on to make your welcome more helpful…

I hope the group is able to shed some light on your situation

Sincerely

Re: Welcome to

> Age range: 46

>

> Male/female: female

>

> What are the symptoms?

pins and needles, very tired and weak, etc.

>

> Has you illness been diagnosed? Sort of....

>

> How long did you suffer before you got help? Still suffering

>

> Is there a time that you can remember when it started? Cfids Jan

1999

>

> Some of us have found lack of exercise we are overweight. Have you

found

> this to be a problem also? Yes!

>

> Are you on disability? No, but I am applying

>

> If you are any pointers for others trying to get on disability? share

info.

>

> What have you found that helps ease the pain, warm baths, medications

etc.?

> Pain medication

> Do you have sleep problems? How do you deal with it? Yes, I deal with

it

> by taking medications

>

> Do you have family that understands your illness? No

>

> Some have found certain foods causes problems with CFS or Fibro, have

you?

> ? ?

> What type of Doctor have you found that has helped you the most?

> rheumatologist

> If you want to leave a bio you may go to the groups page at

> www.yahoogroups.com, log in to the file area, and make a folder. There

you

> can leave a picture of yourself, be sure to click to notify the list.

You

> can also leave a bio by making text file then bio.txt

> Post are in text only not html codes.

>

May 29, 2002

Hello..

I am not sure of your name..welcome…

do you mind further elaborating on “””sort of “”” diagnosis….maybe if

there are more symptoms or whom you have seen it might shed more

light…and how are you managing the medications you are taking…where are

the pins and needles specifically??

I want to welcome you but not sure what kind of help you are needing the

most right now to hone in on to make your welcome more helpful…

I hope the group is able to shed some light on your situation

Sincerely

Re: Welcome to

> Age range: 46

>

> Male/female: female

>

> What are the symptoms?

pins and needles, very tired and weak, etc.

>

> Has you illness been diagnosed? Sort of....

>

> How long did you suffer before you got help? Still suffering

>

> Is there a time that you can remember when it started? Cfids Jan

1999

>

> Some of us have found lack of exercise we are overweight. Have you

found

> this to be a problem also? Yes!

>

> Are you on disability? No, but I am applying

>

> If you are any pointers for others trying to get on disability? share

info.

>

> What have you found that helps ease the pain, warm baths, medications

etc.?

> Pain medication

> Do you have sleep problems? How do you deal with it? Yes, I deal with

it

> by taking medications

>

> Do you have family that understands your illness? No

>

> Some have found certain foods causes problems with CFS or Fibro, have

you?

> ? ?

> What type of Doctor have you found that has helped you the most?

> rheumatologist

> If you want to leave a bio you may go to the groups page at

> www.yahoogroups.com, log in to the file area, and make a folder. There

you

> can leave a picture of yourself, be sure to click to notify the list.

You

> can also leave a bio by making text file then bio.txt

> Post are in text only not html codes.

>

May 30, 2002

Hi, I'm and I've been around for about a week, so maybe I'm not 'new' but

I'm still 'newish'. For some reason, I can't find my questionaire that people

are mailing in. I'll blame it on my current drugs :-D So I took a form and

filled it out. Maybe I already filled one out, but, if so, I can't remember.

So here it is:

/ Louisville, KY

> Age range: 37

>

> Male/female: female

>

> What are the symptoms?

Extreme fatigue; headaces; pain in all extremities (it got too long to list);

extreme, sharp pain, burning, cramping, and tingling in toes and feet; shin

pain (very sharp); hip and leg pain when walking; extremely tender and sore low

back; and depression. Also, which sounds weird, but I'll list it, I've noticed

a change in my magnetic field. I turn street lamps off or on simply by being

near them and I melt watches. I have found this actually listed in a

fibromyalgia book or I wouldn't have thought of it as related. I've been doing

the light/watch thing since I was 14. My friends used to laugh about it.

>

> Has you illness been diagnosed? Yes, 10 years ago, 2 years ago and a couple

of weeks ago. Hey, maybe it went away! It doesn't hurt to check.

>

> How long did you suffer before you got help? About 6 months before I was

initially diagnosed. Then I was still suffering because most of the HMO doctors

didn't believe in fibromyalgia. They would insist I had arthritis or I just

needed to lose weight. In the past two years, thanks to a terrific doctor, I'm

getting some relief.

> Is there a time that you can remember when it started? I injured my back

1/92, and never really got better, but I think I probably had it before then.

>

> Some of us have found lack of exercise we are overweight. Have you found

> this to be a problem also? Yes, and we'll just leave it at that, okay? :-D

>

> Are you on disability? No, but I am applying

>

> If you are any pointers for others trying to get on disability? share

info.

I have always heard it is best to get a lawyer on contingency from the very

start, and if you are denied, take it to court. Oh, I've also always heard that

a psych diagnosis usually gets in on first pass, but a medical diagnosis will be

more likely denied on the first pass.

>

> What have you found that helps ease the pain, warm baths, medications

etc.?

Currently on neurotin and baclofen (pardon the spelling and lack of dosages,

but I'm upstairs and the bottles are downstairs) and I'm also on a duragesic

pain patch. I finally have a doctor who gives medicine that actually works.

> Do you have sleep problems? How do you deal with it?

I have sleep apnea and I'm also an insomniac. Currently on a C-Pap machine with

no relief. Was on ambian before my insurance company decided that it worked and

they didn't want to pay for it.

> Do you have family that understands your illness? No. My cousin suggested I

" just take some aspirin and get moving " and even though my family promises to

help, I don't feel I can count on them. It also was one of the underlying

causes for my 7 year relationship to break up.

>

> Some have found certain foods causes problems with CFS or Fibro, have

you?

MSG and I just don't get along. Other than that, fried foods, onions, spicy

foods, and pizza upset my stomach.

> What type of Doctor have you found that has helped you the most?

My family doctor. I lost her once, but finally found her new office (no

competition clause in her contract). You know, it took almost a year to find

her, and I'm not driving almost 25 miles one way to see her and I don't mind a

bit.

I would like to add that I'm really unsure of what is fibromyalgia and what is

my ulcer/esophogitis or my extra herniated lumbar disk or my asthma or holdovers

from TB I had 14 years ago or what is my fibromyalgia.

I still have hopes that this will all improve and I can have a life again. I

had one once and I rather miss it.

~ :-D

May 30, 2002