Fibromyalgia Support Group

Hi melrose516. I am happy to share a little about my story with you.

At this time, I am pretty much doing the things I want to do and also the things I need to do like work. Last year (before taking some medication), I had such a terrible flare, I was in the ER 2 times in 3 days. I was very freightened and I was unable to do anything, but think about the pain. I took a week off from work (could have used more), and during that week, I thought I would never be able to do anything, including work, again. So my life has changed, in that I am taking multiple medications daily, I'm using pain relievers daily and so far every night a sleeping pill. I've had sleep issues for many years before I got DX'd with my illnesses. My issue was that I did not sleep much, which is different than, is seems, most people with fibro.

I also know that I have to walk and do yoga regularly to try and keep getting healthier... no slacking off like before.

My family is supportive, but it's tough really not having them understand about the different kinds of pain I have. I don't bother to try and explain, but I do wish they could understand anyway. I guess it's one of those things, "you have to have been there".

Hope this is helpful for your insight and awareness searching.

Have a good day.

I'll answer......Before fibro, I was a happily married, healthy 26 yr old mom of two, aged 3 and 10 mos.....I could get up early, work all day as a stay-at-home mom, do all the errands, laundry, cooking, etc.....be up some at night if needed with the baby....go have fun all weekend with family, active in church and other activities...

A severe bout of the flu preceeded the onset of fibro....then came the severe numbness, tingling, fatigue, where you feel like a truck hit you....For months, I spent hours on the couch, with family helping with the kids.....It took me 20 yrs and dozens of doctor visits and all kinds of tests to be diagnosed....

Over the years, I've learned to manage the symptoms through a variety of supplements, meds, exercise, pacing, diet, etc.....I never "overbook" my calendar, always leaving down time to rest.....On a great day, I can do about 60 - 70% of a "normal" person's activities....on a bad day, maybe 30%......every activity must be weighed in regard to its toll on my body....Priorities are quickly set for me.

As a for instance, before fibro, I could swim for an hour or so, and then go do whatever else that day.....now, if I swim gently for half an hour, I have to go rest for an hour.....stinks!1

Hope this helps, and you get some good info!

Since I am a cautious person on the net, I'll be a little vague - but also in the hopes of spreading the word, I'll try to help.

Doctors can be so encouraging - or equally discouraging. I think the more they understand, they can see us as the healthy rational persons we were, that are now really knocked down by the doggone disease....and how much we need their help.

It's a battle. Some mornings I say "ouch" before I even am fully awake and opening my eyes. That's when I know it's going to be a really tough day.

Other mornings I am up and getting ready...and the energy just begins to drain right out of me. No matter how much I wanted to do something - or had my heart set on it - on a day when the fatigue takes over, there is nothing I can do about it. And I used to have my doubts about what that kind of chronic fatigue was....but having experienced it - I find it is hard to use the right words to adequately explain the utter helpless fatigue that can come over a seemingly healthy person on one of my good days. But it happens.

I was a very happy wife and mother of four -- I put all my heart ane energy into whatever I do....so I loved homemaking and having dinners on the table and chatter around that table as we gathered. Now....I cook as simply as I can and only once or twice a week at the most. Other nights we have the leftovers - or carry in food. I don't feel like going out to a restaurant very often. How sad...*sigh* The battle of dealing with the pain and discomfort throughout the day also exhausts me.

I was soccer mom and chauffeur and did my best to be super mom. I loved the gift that God has given me in my children - and treasured every opportunity we had to enjoy life together. I still treasure that - but am thankful they are grown - so that they don't need me to be as active, because I just can't.

I was leader of whatever group I volunteered to assist - many church functions - many roles there and at my kids' schools. Now I cannot commit to so many tasks outside the home -- my body fails me -- and I don't want to have to keep calling to reschedule at the last minute -- so I enjoy my home and more quiet activities. I've recently taken up jigsaw puzzles - to try and keep my brain active (and its helping disburse the foggy brain feeling) - plus when my kids stop by, or a friend, it's something they can join in and we chat. It is shared quality time :)

My family is awesome - and my church - I am rarely ever questioned in a way that makes me feel challenged - but moreso in ways by friends who just want to understand and help. My husband does more grocery shopping than I do now. I still work a lot of hours - but have adjusted them to work at home duties - mostly online - and holding meetings here, rather than agreeing to go elsewhere - and so that I can keep flexibility in my routine. That is essential.

Honestly - I function at less than 50% of what I used to be able to do. It fluctuates - but for sure it is less than 50% maybe even more like 30%. It is a battle and hard to fight - unless you have support around you - and even then, you just get tired of having to struggle to move...and wonder whether you'll be able to complete a task once you start.

This has changed my life as enormously as having four kids did -- but this is painful and far more hindering.

What helps? Hope. Thinking that someone who says they are doing research might actually be able to make some connections that bring some answers.

And hearing my doctors speak with understanding about what we are experiencing -- and having them acknowledge that this is valid. This is real. Whether are brains are mis-signaling our nerve-endings or there is some other explanation - the pain is just as real as if we were being tortured...and we need help.

My doctors call this a syndrome -- fibro alone is usually not a single diagnosis. Most of us have other conditions that go along with it - that are also influenced by stress and related to nerve endings. One thing triggers another in my body. And so having that acknowledged, gives me hope that they are beginning to have deeper understanding - so maybe we are making some progress at working together towards a better life.

Thanks for listening - and for asking.

Fibromyalgia .. I wish I had Never heard the Word.Before this Entered my Life I was a Living, Breathing Human who Rarely went to Dr.s and when I did, I got Help... I was Someone with PLANS...Someone who Could Be Relied on...

Since being diagnosed with this However, I have been Disrespected, downright Ignored, and One Dr. even had the Audacity to have a Bit of Fun with me, by Increasing my Anxiety..adding in some Health Anxiety I had never had before.

Fibromyalgia is about Pain..and Alot of it, Threatening Pain that Seems to have No Cause, No Reason..it Not only makes you Look Like a Hypochondriac, it makes you Feel like one. The Intense Pain can Arise Anywhere within your body you have a Nerve...hope that gives you a Clearer Picture..

I Know what Pain is Supposed to Feel Like, I was always a Ruff and Tumble Tom Boy...Pain ? Never gave it Much thought. Til I got a True Understanding of What Pain Really Is.. and am AmaZed at just How Much the Body Can in Fact Take, and Survive.

But Do we Really Survive ? As People, Friends, Family, Dr.s, Strangers all Make us Feel like we are Just Over Exaggerating, making it up, and I would suppose someone Could make this up, since there is no Clear test, no Xray, bloodwork to be done, Except to rule out other conditions that May Mimic FM...There HAS to be some test somewhere that they Just have Not Discovered as of yet, because this is as Real as It gets. and When that test is developed I will be right there Front and Center to Look at all the People with EGG on their Faces, Accepting Apologies for the Blatant Disrespect I have had to Endure.

I am Hypersensitive to Everything...from Heat, to Chemicals, Noise, Light, Pain, TOUCH, Smell, Stress, Meds, Changes Within Me, Creating Anxiety that will Overwhelm the Strongest Minded people.

This can Make Life not so much Fun...if it were Intermittent, perhaps the Depression would Not be a factor, but it does become one..Imagine feeling Sick everyday...Flu like Achiness...Intense Nerve pains flashing thru you, stalling you out completely..really Difficult to Keep going...but I Try !! Always Searching !! Cause WHAT Choice do we have ?

The Affects on those You are around everyday can Also be Overwhelming, when this First got to be an Issue for me I was Terrified as to What was going on !! One day you have Crushing Pain in your Chest, another day it may be in ur Legs, Head...Abdomen...just cycles around...Who can deal with Someone who Complains All the Time ?? How Annoying !! and the Very LAST thing I Ever wanted to be when I grew up was a Burden, yet you begin to Feel like One..
But it IS Scary !! and Ya never know IF you should go in to see ur Dr....or is this just the FM...I mean HOW long do you Ignore a Pain ?? I have had Pains last from Minutes to Months !! SEVERE Pain...the Kinda Pain that Makes you Feel Like Ending it All..and No, as a matter of Fact I am NOT exaggerating..I have ZERO Reason to, I WANT my Life back, I cannot Tolerate the Meds they give, Nope, not even the Meds FOR the Nerve Pain, for General Pain, Not the Sleep Meds, Nor the ADs or AAs...nothing...hell, I cannot even Tolerate Caffeine anymore Not Ibuprofen...I am STUCK...yea, so NO Reason to Exaggerate.. cause at THIS Point, nothing can Help me much anyway..

Impact...take ur Life...go Completely Against it...see where you end Up...then you will get a Glimpse..Reach out and Pinch urself HARD Random Places every so often, have someone Beat the Crap out of you...Fight back Hard so you get REALLY Stiff and SORE..then perhaps you will have a Moments idea of what we Feel EVERYDAMNDAY...but you will get past that...you will Heal...we Don't Heal...

You Become Unreliable, Inconsistent...Moody, Depressed, Anxious, Whiny, Dependent, ALL the Things I am NOT...but Oh yes I am...I am NOW..

Memory lapses...Ohhhh...this is SO Special...take the Nerdiest Kid in ur Class...and Feed him a "Dumb Pill"...The Pure Frustration that Arises from NOT being able to Articulate what You Know you KNOW...OMG...Knocks ur Confidence Right into the Dirt...after awhile you just start to Avoid any Social interactions all together...I think they call it {AHEM} "FIBROFOG".. then you get that special label of being "Anti social".

And WHY ?? What has happened to us to have to be this way ? What went Wrong ? Every Test I have EVER had suggests I should be able to go run a damn Marathon !! Healthy !! Healthy ?? If I am Anything...Healthy is NOT it.

{ Has this Helped you ?} Perhaps Others will give a Clearer Picture.

Wow, I just want to thank all of you so much for sharing your stories with me. I truly appreciate it, and it has helped me so much in gaining a better understanding of the personal impact of fibromyalgia. I think too often physicians lose focus on the real impact this disease has on the patients and their families as well. Again, thank you so much for sharing! This has been so helpful in helping us better understand this disease and to come up with some good ideas for educational programs that will hopefully be able to help you, as well as your physicians in the future!
Thank you so much and good luck to all of you! xo

My life 12 years ago and now are dramatically different. I started with the extreme fatigue and heavy, numb tinling feeling in my limbs. Many doc visits and all sorts of tests and a vague diagnosis of MS or chronic fatigue. Felt and still do like a guinea pig while the docs try all sorts of meds on me. Some are the "gold" standard for fibro supposedly but NONE of them have worked. I endured major side effects while I tried to see if the meds would help me. Got a diagnosis of fibro and lupus 5 years after first symptoms. Unfortunately two of the rheumatologists I had from 03 to 08 left area.
Now I have a new rheumatologist who tells me yoga and visualization of me being healthy are the way to go. He did prescribe plaquenil for the autoimmune stuff but still doesn't know if its lupus in addition to now a sjogren's diagnosis.
Prior to this thing that consumes by body and energy I worked full time, took care of my home and had a full schedule of activities.
Now I am on a social security disability, can hardly get through a day without my pain level being at around a 7 or higher. I need help driving, shopping, housekeeping, etc. I rarely attend any activities because the pain is too great. I do go to church and have a wonderful group of folks who give me moral and physical support. I do all the things asked of me by drs. like exercise, eat healthy, attend support groups, etc. but the pain is still prevalent.
I am still on a quest to find a dr. who will address this extreme pain so I can have a better quality of life than I do now. If I have meds to lessen the pain I can cook, wash laundry and participate in activities like a craft group and such.
My attitude despite the pain is hopeful. I pray, read, watch tv/movies and surf the net to keep my mind off the pain. I am not depressed person even though I know depression can sometimes aggravate fibro patients (anti depressants make me a raging witch and so do the sleep meds they normally prescribe). This thing effects relationships in all areas because of the things it robs us of doing.
Lucky for me I have a caring, loving family who supports me and stands by me and who advocate for me.