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pocotaz posted:
Welcome all new members,

I want you to understand how important it is to be o.k. with coming here to lift your spirits and release your anger--grief in what was--feelings of isolation, pain and disappointments.

Then understand that you can learn from others here who are just like you and get support without being judged. You ill not be devalued here for what you feel is real and as important as anyone elses pain.

This is where you can learn how others manage their life wth FM. Understand that this is not something that you can die from, but something that you will need to learn to LIVE with. What you bring to this FMily is your experiences in living with with FM and in the process you will be helping others.

It is a win-win situation. You learn and give and receive so much more in return. We open our hearts to all who want to embrace our support--comfort--compassion and understanding. You don't need to feel like you have to hide what you go through--because we know.

With that being said, I want you all to know that your loved ones don't know --nor can they understand what you go through because they can't. What you can expect from them is "acceptance" of what limitations you may now have.

YOU also need to accept your own limitations.

This is hard for us-- so expect it to be harder for them. For they do not live in the pain we do. Including tem in your new journey may help-- but if they don't want to try--then do it for yourselves. We all do the best we can to cope and learn all we can to help with our own pain levels.

Teaching each other is so important--that is what this support group has to offer. There are always new things to try that you can learn from someone else and may not have had that information.

We all have good and bad days-- but what helps is having that positve attitude that pushes us forward and gives us inner strength. We will not let FM take over our lives and we can help you stay strong.

There are supplements andmeds available--each one of us is different--so having patience is vital in your search to find what helps you.

I have lived with FM for a short time --yet by being here have fund the support i needed and the strength to move forward in my search. I have learned so much--you will too.

It is up to each one of us to be our own advocate--whether it is tofind the RIGHT doctor or the right combnation of meds. --but WE must stand and make it known.

You have choices-- in how you handle stress or negative responses from those around .

We can hold your hand and walk this journey together--it is a union of sorts-- a bonding that works.

Be FREE of fear and isolation -- come to this FMily.

We offer you hugs and Welocme each and everyone of you.

Hugs............Linda
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niaggi responded:
Thank you for such a welcoming post. I have subscribed to Web MD for a long time but never found this support group. I guess I didn't do enough searching. When I was reading some of the post last night I finally realized I wasn't the only one that felt alone. This will now be part of my daily routine.
 
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pocotaz replied to niaggi's response:
Hi Niaggi,

I am glad you found u and feel welcome--this is a great group of caring and compassionate people.

This new board has some of us lost but hang in and as we get used to how it works--we get better at being the tight FMily that we have always been.

I have never looked back since being here and it was such a great help for me--this is what we all hope to accomplish--a united front in this fight to find better treatment.

Hugs...............Linda
 
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pocotaz replied to pocotaz's response:
Would like to invite any new people to use the other board now and post to that board and let them know you are new here.

Linda
 
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czphoto replied to pocotaz's response:
Hi Everyone,
I am new. It took me the last 6mos to get validation that fibromyalgia was part of my health issues along with being diagnosed with Rheumetoid Arthritis and I am a recovering alchoholic. I had a serious episode of alchohol gastritis ( I used beer and tylonal daily to deal with my pains and was not under any Drs care due to no insurence) June of 2009 and that is what woke me up to dealing with life without alchohol and introduced me to the Health Department. My blood work is fine now but liver enzymes stll high but in the normal range and is still distressed so no medications allowed that can cause further damage to it or addictive behavior. I am having no problem leaving the alchohol alone and have strong family support.This leaves me to Tramadol 1 or 2-50mg 2x a day and 600mg of motrin every 12 hrs as needed and neither seem to do much for the constant ache in my upper arms, tops of hands, back of neck and lower back. I can bearly tolerate putting on shoes or crouching with out becoming unstable and shooting pain. I often have a feeling like I have been hit by a mack truck. Sleep is often fleeting and interrupted I have been trying mild exercise, walking, water aroebics, a few massages, and heating pads that have given me some relief. The Health Department Drs suggested pain management which they don't offer. I have also read about accupuncture. I was wondering how others have found this helpful? We don't have insurance to cover anything so I am hoping to discover some relief at a manageable expense. I have learned most about this disease andtreatment from the internet and books and have had to go over and over the symptoms with Drs at the Health Department. I do not want to go overboard on any medications but it would be nice just to feel semi-normal again.I am a professional photographer, working mostly on location and photojornalism part time for now. I don't notice it while working but sure pay the price afterwards. I have 2 active teens at home as well. This site has been helpful and I thank anyone who takes the time to read all this. I just wanted folks to know where I was coming from and wondered if any had suggestions for me. I have heard about studies on naltrexrone usely used to treat Drug addiction and want to discuss this with my Dr. I have an appontment in 2 weeks. Thanks
Cheryl
 
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czphoto replied to czphoto's response:
Hi, I man to say The Naltrexone study was on its positive effect on women with Fibromyalgia and not to deal with addiction issues

Cheryl
 
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czphoto replied to czphoto's response:
The Naltrexone study was for its possitive effect on Women with Fibromyalgia not addiction issues
Cheryl
 
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pocotaz replied to czphoto's response:
Hi Cheryl,

Welcome-- if you look at the bottom right hand side of the board when you first come here-- look for "Resourses" and click on Member Toolbox.

There you will find all kinds of information that may benefit you-- it is lots of reading but very very informative on what others use to help mage living with FM.

If you'd like other to know you are here and new--please feel free to post on the discussion board.

Hugs and welcome again..........Linda
 
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88Tessie replied to czphoto's response:
Cheryl ( czphoto )

Welcome we are glad that you are here !!

This board is a little confusing to post on the correct link for others in the whole group can read and reply back to you and you wll be able to read all of the other post in real time , I guess we call it the daily post board.....Here is how you get there.................FOR OTHERS FOLLOW THIS TOO IT WILL LEAD YOU TO THE "MAIN MESSAGE BOARD"........

scroll up on this page.......on the right side of this page a little ways down you will see in blue bold print "large caps , Discussions , wait a minute , sorry , I can't delete what I just typed , lets start over.............ok , scroll up this page , look over to *left side of page , in small blue print you will see :
*Whats Happening Now
*See All Discussions
*See All Tips
*See All Rescoures
Click on See All Discussions , this will bring you into the main post page , this is while the whole group of us are posting to each other !! So , come on in and others if you read this come join us !!!! Sorry ths was so lonf , I do not know how to explain better , lol !! ~~Tessie
 
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flowerc13 responded:
WOW, this is cool and thank you for the new comers welcome, a very dear friend of mine tried to get me to go to fibrohugs.com but i never did, then earlier i was reading some info on fibromyalgia then i read further on, so i joined, I was diaginosed in 2000 with the fibro. and then in 1990 I was told that i have osteoarthritis, and thru the years, I have the ringing in the ears, 24/7. but anyhoo, i am so glad that i finally got on here and joined, i have read alot of replys on here, and there is so much support, and understanding. and like you say no one knows how much pain you are in because they cant see it, I also have the burning of the skin. I hope to meet new friends on here, and i do have a good ear also to listen, may each and everyone have a great day, I live in Artesia NM so it is 2:01 am. yes sleeping is another problem for me,, I look forward to making new friends. Liz N.
 
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Tuned2fm replied to czphoto's response:
Hello Cheryl and welcome,

You sure do sound like you sure do have a lot on your plate. I especially want to commend you on kicking the habit for alchohol.

Now I don't do accupuncture but alot of the things you are doing are really good for FM.

I also don't know anything about Naltrexrone lol, but you should learn to pace yourself while working. I know sometimes there is deadline or you need the right lighting but you still need to take some breaks If at all possible.

Again welcome,

Sheila
 
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pocotaz replied to flowerc13's response:
Hi Liz,

Very glad to see you here --not happy you have FM--but glad you found our group. I too have osteoarthritis so we have a double whamy with he pain don't we--but so many others have lots of health issue along with FM --it appears that this is common.

The burning of the skin can be terrible now --i too have had this and it has put me down--- i end up in bed because nothing will help it--My Rheumy says it part of FM and othershere have also experienced it.

You are not alone--and by being her and having other know what you feel and say and understand you is good fo the spirit.

I am glad we are here for you and i know you will be able to help new people who come on board. This is what we are all about--to just be here and offer support with what ever is needed --so jump in and join in any of the postings or post yourself. Vent , cry -- talk about things you want to lift off of your shoulders here-- there is always some one around to answer mots days.

Welcome Liz--..............Linda
 
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flowerc13 replied to pocotaz's response:
Hi Linda, thank you for your reply,I wasnt aware that other people have that burning of the skin, when it is really bad, i wish someone could take my skin off, and put it in ice cold water, and slap it back on....LOL I am seeing a new pain specialist tommarrow, i hope it goes well, everytime i get excited about and new approach, it doesnt turn out the way I thought it would, I have also read up on, it depends on what kind of insurance you have, is how much time they will spend with you at your appt. and is true i talked to me new MD. and he said yes that is the way it goes, but my doctor is really cool, i sure do like him, he very blunt, honest and upfront, which is very well apreiacated, dang i hate the days that i cant spell a word right....so do you know of anyone on here with the tinitus?(ringing in the ears) I have it 24/7 just wanted to know if modern technology has come up anything, i about to the point to ask a doctor, to take out the ear drums or what ever to make this go away!!! wow. sorry so long, sometimes i just get on a roll. thank you again.........Liz
 
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pocotaz replied to flowerc13's response:
Hi Liz,

My mom has the ringing in her ears and they have told her that there is nothing for that.

I want to encourage you to use the ain board--this is seperate from the main board and you may not get as many responses to your questions as you would over there.

When you log on --just hit the discussion and start typing away-- there will be alot more people to read and answer. Glad you are here.

I can't take aspirin and have to limit the amount of Ibuprophin i take as the ringing will happen to me too.

Not very fun.

Hugs...........Linda
 
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doocrafts responded:
thank you linda, and i'm new to this also, today!
i feel the same about this site, been reading for monthes as niaggi did, and never found this discussion.....yay!!!!!!!!!! i won't ever feel alone again
my story......been dealing with issues that have been fibro related for over 10 years. 10 years ago, it was all in our head, and we were told to get counseling, and get on anti depressents.
kaiser!
so it's been esculating since december into a full out war on my body. i now have neuropathy in feet, legs, left arm, and all the discomfort with fibro
i take 2100 mg of neurontin a day,(i probably don't have to say i sleep 2 naps a day) celebrex, and cymbalta, among a few others for cholestrol
i am writing to ask you all, is anyone in my shoes, with fibro/neuropathy? it comes and goes, and mostly stays . i can't possibly explain this to others, its so foreigh, but have been printing out a few for my loved ones to read. i can say, they still don't understand, heck, neither do i.!
i can't do much like i used to and i am so sad about it. i don't dare drive on this medication, so can only drive when i feel sober!
i used to craft, sit here and love the computer, and be a caretaker, i can't do any of it, for any length of time
i should change my screen name to "didcrafts"
i am more than excited about this website, and to read all the posts and learn anything i can.
i care about each and everyone of you! and pray soon they comeout with a miracle for us all
soft and loving hugs to you all
dorene


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