Skip to content
Question: Why did you come here? Take long to find it?
avatar
booch007 posted:
Good morning.

I was wondering why did you all set out to find this board? How long did it take to actually get here and begin sharing your thoughts or questions?

I came 9 years ago after I began trigger point injections and I was told this is FOREVER. That I had FM and not CMP (which is not true) I have CMP.

The neurologist said I better find a support group, and I was crying after the session of injections...had a few of them (not sure where the tears eminated from....loss or pain or both)

I came to learn tools to be better.

I came to see what else I could find out and gain from the crowd here. I found that my path was so close to theirs (the elders) but I gained the memory foam mattress right away! I gained friendships I still have......

I gained a place to go and dump the crap, share a story or cry if I need to. It is open 24/7 and if no one responds it used to bother me (no one cared or liked me) now I am here long enough to know....no one had a thought to add...knowing I just needed to dump it out.

Pain is a great motivator for some, but a collapse into self for others. Here the strong can lift the weak. The tools we share for ourselves are so helpful to create a life and NO ONE....can I repeat that...NO ONE knows this road more then us.

The waxing and waning (coming and going) of symptoms can be so dramatic. One day feeling in tune and the next, down with pain in the legs or back won't release...and it holds the whole day back.

This home for us can show the lives we carve out....always in pain but struggling with the doctor issues and med changes and failings of a choice we thought would work.....

So, why are you here? How did you know to come? How long did it take to find this site?

I am just interested to know. Thanks, NancyB
Reply
FirstPrevious12NextLast
 
avatar
fontanille responded:
Hi Nancy.

I came because I couldn't understand what fibro exactly was, and what was going on with me. I thought the dr. had it all wrong.

so I went looking for answers and this is where I came and have learned alot.

although I don't post much I do read here several time a day.

Donna Fontanille
 
avatar
angelswife responded:
Hi Nancy,
I stumbled across this group in late 2010, after I finally got a Fibro dx. I was relieved to know what I had, but also confused, scared, and wrestling with the "chronic" label. I needed some answers on how to deal with this because I didn't have a clue...I knew, though, that I wanted to manage it naturally for as long as I possibly could. I didn't want to use drugs just to function, and that seemed to be the only solution.

I say "stumbled" because I truly don't remember how I came here. I think I was on Google. I had started with a different support group, but there wasn't a lot of interaction like there is here. Some support, but a lot more "why me, it's not fair" type stuff. I was so glad when I came here, because Mimi's post was one of the first ones I read; and I was so relieved to know that managing the Fibro naturally could be done. It felt like a load was lifted to know I wasn't alone in this challenge. Needless to say, I have been here since.

This group has been a Godsend...you all have become my FMily. I can come here and say I'm having a bad day and I don't need to explain myself. I can share the good things and have people celebrate with me. Most importantly, I am with people who understand this dragon we call Fibro...If I feel like I'm the only one I can come here anytime and be reassured that I am not alone. That has saved me more than once as I learn to live with this.

So...a huge, soft hug and a huger "Thank you" to all of you for being here. I may not say it often, but my gratitude for the FMily is heartfelt. Thank you so much for becoming a part of my life.
 
avatar
dollbug responded:
Hello Nana B....good topic....at one point and time (before we switched over to this board) I knew when I came here...don't remember now...since the date changed...(wish I had saved this somewhere)...I was searching for information and trying to find anything that would help me cope better...

I remember though that MeMe and I had the same *start date*....because we posted about it one time.

I think this is the *best FM support groups* that is on the internet....so blessed to have not one, but two doctors on board...do not think I have seen this anywhere else.

In the beginning, I explored other support groups as well...but did not find any to be better than it was here..

I know that a lot of people join, stay a while, post a while, and then disappear....perhaps they find what they are looking for...or maybe they are looking for something different...I do know some get mad for this or that reason...and then there are the oldie goldie who continue to support this group...GOD BLESS THESE PEOPLE...as we are the *backbone here*...along with Caprice and the other Web MD people here.

I often wonder about those who joined and we no longer hear from them...how they are coping today and what they have found that has helped them.

I laugh when I think about bringing up the subject of Vitamin D....as I think I have said before...it is my mission to make sure that everyone is at least aware that Vitamin D might help....I know just how much this helped me...and I wanted to reach out and help others as well...I am sure that there were a lot of FMers who thought I was *a bit crazy*....(and I just might be)....but I continued my mission...and I am still on this mission...of trying to make sure that anyone who post here will at least be aware of Vitamin D...

I enjoy posting every day....whether I have anything to say or not...there are not many days that I do not post...unless, of course, I have no internet...this place has become a part of my life...and it keeps me positive...as I think is so important for all of us FMers...

If I have helped only one person, every now and then....then I think it is worth my effort to be here...

I would hope that everyone would experience something positive about this unique FM support group...I have made many friends...and I have gotten a lot of good information here...

As you say....we are open 24/7....and it is FREE....
A person can not get much these days for FREE....and some of the information is better than what we pay for....

We are FMily....and many thanks to those who have been here for a long time.

I look forward to reading what other people's responses will be.

Take care and thanks for sharing...


MiMi

IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
avatar
Teelady1 responded:
Not sure how long ago it was that I found this group. Last summer when my Dr first suggested FM, I didn't know much about it and was searching for information. I found the FM info on this site and I clicked on the "community" link - and here I am!

I consider myself very lucky and blessed to have found this FMily! Everyone has been such a help to me!

Thanks!
 
avatar
Caprice_WebMD_Staff responded:
LOVE this discussion!

I know I'm the mod here and have been here for a long time, but I'm also someone with FM and I've learned so much for each of you and from our wonderful experts. I gain as much as anyone who comes here. You are an AMAZING support group!
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
avatar
xperky responded:
Hi FMily! My life has been enhanced since becoming a regular here. I get to be a part of a wonderful group of people, all sharing how they deal with a debilitating chronic illness.

The knowledge here is vast. I can 'search this site' for a medicine, symptom, vitamin, herb, etc and learn a lot. So many of you have shared comfortable home treatments I now enjoy. Thanks.

I believe I found this site while Googling an FM topic. I liked what I saw and lurked for a while. I finally got up the courage to introduce myself and have met some great people since.

It's so nice not to feel alone with this illness.
With Compassion,
Margaret
 
avatar
schrode replied to xperky's response:
Hello All! I found this site while reading about FM on WebMD. I think it was almost two years ago. I come and go and I lurk sometimes.

When I found this site it was a blessing to have others that understood what I was feeling. When I was diagnosed with FM I felt that I had received a "life sentence". That I had been sentenced to a life of pain and exhaustion that would keep getting worse.

I still grieve my previous "healthy" life sometimes. I still shake my fists at the sky at the unfairness of it all somedays. But for the most part I am better than before I was diagnosed. I certainly have found a strength in myself that I never knew existed.

I come here to remember that I am not alone in my fight against the dragon. I come here to vent. I come here to see how others are coping. This is a special place and I am grateful to have stumbled upon it.

Soft hugs,
Deb
 
avatar
booch007 replied to schrode's response:
DEB,

You keep shaking that fist at the sky. Though it takes energy to be mad, I really think it helped me moving forward in this.

It helped me to keep looking for a better solution and honing the tools I use to be better.

I was told by a physiatrist....DON"T get SAD, GET MAD....and use it to fight. I have. I am more at peace this year then ever....but I am dealing with new challenges as life changes. It is a constant re-invention of self.

I am glad for good comments from some, thought I would see more. The lurkers who don't post, the anonymous ones who stay in the shadows.

I came to get tools and I stayed to share them and maybe help someone. This was before Dr P. which they made a GREAT MOVE to find hima nd him to say "YES"......we are so lucky.

Well, being alone makes this 10 times worse, so I hope many find us and stay and share their path. I have learned from all...some have showed me a warning, not to be like that and others GREAT teachers...........Take care, Nancy B
 
avatar
greenwitch68 responded:
Hi,
I've only been here a short while( 2 months or so), but so happy I found this place.
I really came to make sure I wasn't a little nuts. It so nice to read a post and then go-"Oh ok some other people have that(symptom) as well, it's not just me." For so many years I've dealt with skeptical Drs and even family and friends, I started to question what I knew to be true, a little affirmation can go a long way.
I heard of WebMD so this was actually the first site I came to.
Of course now that I'm here I've discovered all the other great things about our FMily. I appreciate it all, THANK YOU!!
Kath G
 
avatar
1wareaglefan responded:
I came here several years ago, when I was going through a really bad flare. Actually it was the first time my fibro "reared its ugly head" in such a dramatic way.

I'd tried a support group here in town, but it met at night, and I never felt like going anywhere at night! So I googled fibro support groups, and here I found you!

This group made such a difference in my life, b/c I knew I wasn't "crazy" or alone in the way I was feeling.

I haven't been on much lately, b/c I've been recovering from total knee replacement, and that's had me consumed with therapy (brutal!), and searching and connecting with people who've had it done.

Now that it's past the horrible stage, I'm noticing my fibro again, so here I am. Even though I don't post all the time, I still enjoy reading.

Thanks everybody for being here!

Elizabeth
 
avatar
foreversore replied to booch007's response:
I can't really say how long I have been in this community as I too lurked for a very long time before posting. I had a chiropractor and an MD that I worked for mention in an off hand way that I likely had FM. It was very casual and not charted. Now the MD has passed away and the chiropractor has moved to IDK where. Now I see a different MD and several specialists. Thanks to MiMi I had my Vit D level checked and I was SEVERELY deficient. I took 50,000 IU for 12 weeks and take a calcium D supplement that gets me 800 IU per day. I was recently retested and am now within limits so They gave me 1,000 IU pills to take along with my supplement so I am getting 1,800 IU a day they will recheck me in a few months to see if that will be sufficient. So far no one has said FM although they do say I have moderate to severe spinal and multiple joint arthritis (they seem to ignore my muscle pain). ANA and rheumatoid factor are both negative. I did test positive for the Epstein-Barr virus even though I have never been diagnosed as having mono. The ortho doc thinks I have something autoimmune going on despite my lab results so they are sending me to a rheumy who I will see later this month.

So MiMi's relentless Vit D sermon definitely helped me and I try to use other tips and tricks too that I have learned here. I do come here several times a week to read and If I have anything new or supportive I can come up with I will post providing that the fatigue and brain fog will allow me to put a coherent thought together. I do enjoy being here and I have learned a lot in my time here. I mostly wish I could be more helpful as I do have a medical background...but the fog wipes out memory at times.

Hope everyone is as well as they can be and gentle hugs to all.
 
avatar
TDXSP08 responded:
I was here on the boards that existed pre WEBMD for about 4-5 years and then i have been here since WebMD bought the place and has redone it multiple times over the years,if memory serves right i have been coming to this place since 1994-95 so this is like 18 years i have been coming like a moth to a flame to this site.
 
avatar
fibroinsd responded:
Great post, Nancy..

I sure can't remember how long I have been here..but a few years..hard to believe..time goes by so quickly...

I can't remember how I found it either ! ...But I do remember that my doctor diagnosed me with it..and I must have been looking around for information on it..and somehow ended up here. I remember one of the first people that responded to my request for information was someone named Jan that lived in Colorado..and she had some family things happening and couldn't come on here much any more..but she did make me feel so much more like I wasn't alone or crazy with this..

I can't tell you that one thing or the other has helped me the most...but I do think that taking the Cymbalta at first was really helpful..but then getting the vitamins..and yes..especially MImi's advice on vit D...and getting some other ideas on coping..were so so helpful..and today, for the most part, most people wouldn't guess I have this..but I do know it is still there..I just manage to do much more than I did before..I couldn't walk upstairs without being in pain when I came on here..and now I walk a treadmill..pretty amazing..

I do have to say..that being able to come here and vent has probably been one of the best things for me. I do worry that since this is the internet, that somehow it will come back to haunt me...but the benefit for now is immeasurable...If I told most people that just going out is stressful, they just wouldn't understand...but I know that here, you all do...so I do thank you all so much for your love and understanding..

I also know that we have gone through our ups and downs with people that have a fit over one thing or another..and it is sad to see people leave...but I chalk most of it up to people being in such pain that they cannot take any stress, so they think they need to leave..or maybe it is because they get better and are able to handle things on their own...but I am again grateful to people like you...the ones that hang in there, for being here for me and for all the new people that need a place for understanding..just like I did.

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
avatar
gdsjoy responded:
I think I first found this site around the fall of 2005, but I can't remember for sure. Then I lost contact and recently decided to blog about my journey. It is therapeutic to see how far I have come. Emotionally and physically. This group, the one that was here then, helped so much. The blog entry I posted today, I speak about advice coming from others who have been there is welcomed advice, I am talking about this site!
my journal... so far...
http://tmwoodsbooks.com/blog/?s=fibromyalgia


Helpful Tips

Living Well with Fibromyalgia
Greetings! I have learned patience and a positive attitude is key to my pain management. I developed Fibromyalgia after a hysterectomy in ... More
Was this Helpful?
196 of 213 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.