New Member

[Guest guest]

Joan,

I'm glad to be of assistance. There's gotta be something good about having FM

for 29 years. (lol) My website is full of informational resources for FM and

CFS/ME, I wish more people would check it out. (make the effort

worthwhile...lol)

Best Wishes,

Misty

Patient & Owner

FM/CFS/ME Resources

http://fmcfsme.d-3systems.com/

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

My God, I don't know what I would have done without this support! I was so

despairing just yesterday. I spent the whole day here online, reading stories

of FM, notes of support, getting hugs, etc, and it is beginning to sink in that

it is real. Then I must admit I shut the computer down after about 8 hours and

thought " but that's not really me; I'm normal " .

Thank you for reminding me that understanding this is a process...

And I truly apprerciate the time you have spent with me today.

(oddly enough, a good friend/neighbor was rushed to the hospital yesterday, and

I said to God " I have no idea what you are going to do for or about me, but

please take care of him and heal him " ) Today I found this website.

Re: New Member

Joan,

Sure, I understand. Dealing with any illness is difficult at best. But trying

to deal with an invisible illness is even harder. You're constantly in doubt, as

is everyone you come into contact with, as to what's real and what isn't. Coming

to terms with an incurable illness isn't easy, or fast. It takes a long time and

lots of support.

I remember after I moved from upstate NY to S.C. I was talking to my new GP

about the FM, how it made me feel, etc. At that point I'd had FM and CFS/ME for

12 years. Having been diagnosed for only 2 years. I remember my doctor saying to

me that I needed to deal with my illness. I must have had a shocked expression

on my face, I honestly felt I'd come to terms with this illness long before.

when I asked why he'd say such a thing he responded... " you never tell anyone

you're sick. "

He was right. I kept it a secret from anyone I met. I even made my ex-husband

promise not to tell anyone he worked with. I think part of it was I was ashamed

of not being " normal " . I'm not really sure. But I do remember thinking my doctor

was right, I needed to deal with ALL of my illness. So little by little I began

telling people. When we got new license plates for the car I got handicapped

ones. In time I've dealt with it all, but it's kind of like dealing with

death.....there are many stages of grief....and there are many stages of dealing

with FM.

Sorry for the length

Misty

Patient & Owner

FM/CFS/ME Resources

http://fmcfsme.d-3systems.com/

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

Joan,

Trust me, we've all been where you are. Back when I was diagnosed there was

no material online about FM, not even my local library had anything. It wasn't

until we moved to another state that I was able to find any info about FM. When

I got online 10 years ago I decided I was going to do something about the lack

of FM info and help. That's when I created FM/CFS/ME Resources.

It's funny, I've always been a big believer that nothing that happens is a

mistake, that there is a reason for why things happen to us. Usually we never

see the reasoning at the time it's happening to us. It's only days, weeks,

months or even years later that we see a glimpse of the reasoning. I know now

that I'm here to help other people, so they don't have to wander through life

sick and alone.

Best Wishes,

Misty

Patient & Owner

FM/CFS/ME Resources

http://fmcfsme.d-3systems.com/

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

I always belive the same Misty..

Or God uses what happens to us for some good..

I had a brief encounter with panic attacks.. It was

Solved by getting back on Estrogen when I was going

Thru menopause.. But that experience gave me the under standing I need for

what was to come with others..

That is only one example..

I would like to start something local her for support..

There are so many ladies in this area with out support

That have fibro..

By the way I was trying to get on your site again and cant

Are you working on it..

Hugs

Bet

-- Re: New Member

Joan,

Trust me, we've all been where you are. Back when I was diagnosed there

was no material online about FM, not even my local library had anything. It

wasn't until we moved to another state that I was able to find any info

about FM. When I got online 10 years ago I decided I was going to do

something about the lack of FM info and help. That's when I created

FM/CFS/ME Resources.

It's funny, I've always been a big believer that nothing that happens is a

mistake, that there is a reason for why things happen to us. Usually we

never see the reasoning at the time it's happening to us. It's only days,

weeks, months or even years later that we see a glimpse of the reasoning. I

know now that I'm here to help other people, so they don't have to wander

through life sick and alone.

Best Wishes,

Misty

Patient & Owner

FM/CFS/ME Resources

http://fmcfsme.d-3systems.com/

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

Welcome Marilyn!

I can very well picture the similarities between Post Polio Syndrome and

Fibromyalgia. I gather you're in your 50's.....? I'm mid 50's and can remember

those with polio. A good friend of mine growing up had it. Side note----Bless

her heart she bravely had her first and only children (TWINS!) at the age of

50!!!!!!! Thought you'd appreciate that. HeeHee.

Tell us about yourself!

~Jennie

************************************** See what's free at http://www.aol.com.

[Guest guest]

Welcome to the group.. I hope we can help you..

Bet

-- New Member

Hi my name is Marilyn and I recently joined the Group. I do not have

Fibromyaliga but do have Post Polio Syndrome. I joined this group

because it seems to me that there is a lot in common with the two

diseases, brain fog for one. Before I took medical retirement I was

the administrator of a Senior Retirement community that also provided

an indoor warm water pool. I had the pleasure of meeting many people

and became friends with several who live with Fibromyaliga. That's

when I started noticing some common issues. I look forward to

reading, listening, learning, posting and getting to know you all.

Be healthy, safe and pain free

Marilyn

1. While it is wonderful to share our experiences with everyone on the list

as to what treatments do and don't work for us, pls always check with your

dr. Some treatments are dangerous when given along with other meds as well

as to certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't

be afraid to ask for help. It is the first step to trying to make that

situation better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at

the same time when it comes to flares and b/c of that potentially take

something another member says the wrong way. And that includes the things

that one member may find funny (even if it's laughing at fibro itself) even

though we who deal with illness whether one such as fibro or multiple

illnesses try to keep a sense of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls

let us know so that we can do our best to offer our support.

Have a nice day everyone.

[Guest guest]

Hi Diane

http://im.live.com/messenger/im/home/?source=TAGWL_MAY07

[Guest guest]

Welcome to the group diane.

N.

[Guest guest]

>

> -- wrote:

>>

>> Hi there!

>>

>> I'm a new member. Just signed up last night. I've been dealing with chronic

pain for many years now and have been having a real rough time lately.

>>

>> I've had auto immune problems for most of my life, but in late 1994 became

desperately ill with a disease called auto immune hepatitis. It's where your

own immune system attacks your liver. I almost didn't survive because of

misdiagnosis, but my doctor tried prednisone out of desperation in mid 1995 and

I improved immediately and by 1997 was in remission. It's a disease that

doesn't go away, though, so they kept trying to find an alternative to the

prednisone for me.

,

Welcome and this group is wonderful and supportive. Being in pain and

immune suppressed is double whammy that most of us deal with eventially but

hepatitis doesn't leave you alone

though and you seem involved in your health care.

My good friend had this and was on rounds of chemo type medications and

almost a bone marrow transplant but the medications worked. It took her six

months to get through the

medication protocol but she has been in remission for years. She found diet,

stress relief, and putting herself first helps her combat this disease. I hope

you find support here and

get to feeling better soon. There will always be someone that has something

that will encourage you and we all need that . Lets us know how you are doing.

Bennie

[Guest guest]

Welcome to the group Sweet Sister,

Sorry to hear that you are in pain. I hope you find what you are looking for.

Gentle hugs,

Ms.Katurah

wrote:

Hi my name is and I live in the united kingdom. I have had central pain

syndrome for 4 years

[Guest guest]

wrote:

> Hi my name is and I live in the united kingdom. I have had central pain

syndrome for 4 years as my ex husband pushes me over in the garden and I landed

on a wooden pole ever since then I have had a lot of pain and the doctors could

not understand why I had it so I had MRI scans, x rays and dye going through my

veins, finally I went to a pain clinic and she diagnosed the pain syndrome.

Thank you for letting me join your group

>

>

,

I am so sorry about your pain and glad the ex is outta there so no one is

pushing you. Hurting your tailbone carries with it very painful syndrome and my

Sacral Iliac Syndrome wasn't found for seven months. I am so glad you got to a

pain clinic so you can get relief.

The members here care a lot and will encourage you when you not feeling well.

Glad you are here. Bennie in Texas

[Guest guest]

Welcome Bill,

I hope you find what you need among great group of people

Gentle hugs,

Ms.Katurah

>Bill Wiemann wrote:

Hi Group,

New here. Bill Wiemann, US citizen (Minnesota) now living in Hof, Germany.

Anyway, I remember my sister said she had Migraine headaches. This was about 12

years ago. I have not asked her recently about it. I did read once that drinking

more water can help. Did anybody ever try that?

[Guest guest]

Hi and welcome Chris. I am a fellow Pa person (Bethlehem). I am so sorry to

hear about all the pain you are in. I am also diabetic and can not take

steroids. I have an insulin pump and the steroids sent my sugars into a roller

coaster ride!

I have arthritis in my neck shoulders and upper back. I take oxycoden, tramadol

and a muscle relaxer. it controls the majority of the pain. I also do gentle

yoga.

I have had a frozen shoulder. It is awful!!! The pain was off the scale. they

finally put me out and broke the adhesions. Once they did that the pain was

minimal.

this is a wonderful group with great people. another wonderful site you should

check out is butyoudonotlooksick.com I know there are a lot of people there

that are dealing with RSD.

You should reapply for disability. If is not uncommon to be denied the 1st

time. I had to appeal with a lawyer. The court sets the payment amount for the

lawyer once you win. The lawyer is paid from the retroactive money before you

get the check. You will be back paid to your application date once you win. If

you applied and received your denial more than 3 months ago, you will have to

reapply and start all over.

If you go to that web i mentioned above, you can find out a lot of information

on filing and benefits. One of the website owners is a soc sec advocate who has

been helping people getting their benefits for years. She gets up to date on

the requirements. I believe they even have forms and material you can print

out.

Definitely check it out. Looking forward to hearing more from you.

Lots of gentle hugs, Tami

> wrote:

> Hello all! My name is and I am new to the group. I guess I should give

you the rundown about me.

[Guest guest]

Hi..My Name is Maribeth and thank you for allowing me to join and be a member of

your Chronic pain group. I have OsteoArthritis , Fibromyalgia and Auto Immune

Deficiency Syndrome,Depression and Mood Disorder and PTSD. I hope to be a

supportive member of your group and also learn how to cope more

effectively....??

[Guest guest]

Welcome Maribeth, I can understand wanting to cope better. It wasn't till I got

my depression under better control that I could focus on pain relief and not

being stressed out or feeling like giving up every day. I went to pretty

intensive one on one therapy 5 days a week for a year and to chronic pain group

meetings twice a week for a year plus depression group 2 days a week. For that

year I was going back and forth to my therapy but thankfully I was living just a

couple of miles from the facility. Worked out at the right time for me.

Not everyone needs all that time but even going to a therapist a couple times a

week for several month can be helpful in understanding how to relieve anxiety

and some pain. The severe pain I had needed medication but that's what works

for me.

Jennette

> Maribeth wrote:

> I hope to be a supportive member of your group and also learn how to cope more

effectively....??

[Guest guest]

Hi and welcome Maribeth. Glad you joined us! Gentle hugs, Tami

> Maribeth wrote:

> Hi..My Name is Maribeth and thank you for allowing me to join

[Guest guest]

Hi Maribeth,

I'm new to this board. Just signed on today. Like you, most of the time I don't

feel like laughing even though I have always been told that I have a great sense

of humor. I just know that when you in so much pain, there is not much you feel

like laughing about.

I am 57 years old, married with two adult children and two beautiful grandsons.

My family is a pretty good support system, particularly my husband, but I still

find myself wanting to just crawl into a hole and stay there. It is very hard

to make others understand such a painful illness that they can't see. And for

me, the pain is exhausting. I was diagnosed about four years ago, but believe I

had symptoms way back in my late teens. Needless to say, I have spent a good

part of my life trying to convince others that I am sick.

A year and a half ago I fell (something I did quite frequently) and broke my

left femur. It has never healed properly and I now have to use a walker. What

is interesting is that they all saw the broken leg, they see the walker...so

that pain is okay. That is real. They don't seem to understand that I do have

chronic pain from the break, but it is made much worse by the fibro.

I have never had any luck with any of the fibro medications and now only see a

pain management doctor who is wonderful to me. There are two in this office and

I love them both. They not only listen to me, they hear what I say.  They do

their best to understand, but more importantly they trust me. They believe what

I say without being made to feel like a drug addict. That has helped me

tremendously that I don't have to go in feeling guilty because I actually took

those pain pills they gave me.

Pain wise I am not wonderful, but I am better. It is manageable. I just wish my

fatigue, mood and motivation could improve.

I wish you well,

Joanne

>Maribeth wrote:

>Now, and this is the crux of what I wanted to ask what your thoughts were about

laughter. That has become a big issue now and emphasis put on us with chronic

pain. Sometimes or most of the time I don't feel like laughing and when I do

believe me I consider that to be a blessing. I wanted to know what other peoples

thoughts were about this pressure to have more laughter?