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Posted 1/20/2011 7:07 PM (GMT 0)
I often think of times in my life when I could see the beginnings of fibro.

Like when I was 6 years old and had to practice piano each day. The muscles in my ribcage would ache and throb. Mom just said I was trying to get out of practicing.

Before I was in my teens mom would take me with her to the hair dresser to have my hair cut. Of course you start with a shampoo first and for me that was torture. It always felt like she was trying to scald my head! smhair I kept asking her to turn down the temperature but she said it was nearly cold already.

Many time when someone would poke or jostle me it would hurt and I would yell about it. Often the comment back was..."Oh, that can't hurt you!" But it did! I could keep on going but you see what I'm talking about.

{some of my thoughts on this} IMHO fibro beginnings may go back further than we expect. The ramifications of these experiences often go deeper than the surface. I was called a 'crybaby'; was the target of my brothers mean tricks just to get me to squeal; and was accused of acting out just to get my own way. Looking back I think much of this might have been the beginnings of fibro. I could be way off base here and I'm not someone who blames everything in my life on my "miserable childhood"...lol I have just been thinking back over many, many years of events that might have been precursors to this awful disorder.

Does anyone else have these types of things in their past? Things that likely signs of fibro? Feel free to share. I think it's interesting to see how much alike we all are.

Hugs,
Chutzie
Posted 1/20/2011 7:26 PM (GMT 0)
Sorry, can't help you there. I never bruised, played tom boy tough, loved having a very vigorous back scratch, and could stay up all night and still work the next day. NO, almost all my "issues" started about 4-6 years ago and slowly worked up to the fibro diagnosis.
I believe mine all started with insomnia, then came the extreme fatigue, flu like symptoms and pain. My mother and daughter on the other hand both started much younger and both had mental illness also. Maybe that could be the key?

Good question
Posted 1/20/2011 7:33 PM (GMT 0)
I also never had any indications growing up. Never felt "growing pains". Never had problems sleeping - when I was younger my parents used to put mirrors under my nose because I slept so much and slept so deeply (my how I long for those days). Never had problems wrestling, recovering from illnesses, surgeries, traumatic events. One day I woke up with a strange symptom and then wham, wham, wham, they just kept coming on. My Drs. believe it was caused by a virus and went from 0 to Fibro basically overnight. It's not too surprising that I had a predisposition as my dad has RSD and also clearly had some type of predisposition.

I know there are many of people who can trace it back to their childhood but I think there are also people who just woke up one day in a different body... I truly hope that in my lifetime I will see the answers to the mystery condition begin to unfold. While I HATE suffering from it, I do find it fascinating and love to read up on it and the research advancements all the time.
Posted 1/20/2011 7:57 PM (GMT 0)
The only thing I can think of is that I have always been sensitive to touch.  Mom kept my hair long and I had those stupid sausage curls because Shirley Temple was very popular close to when I was born.  Mom would brush my hair and ,as she was brushing, I would be squatting lower and lower to try to "get away" from the brush.  It was like she was pulling my hair out by the roots and I could almost taste blood in my mouth!  She would get upset and usually yell at me telling me to stand up.  I was in tears and I was always a good kid....well nearly always.  wink    Then she would wind my hair around these rubber curlers at night and I would have to sleep on them!  shocked    I practically slept on my nose.  My head is still that sensative. 

 

A playful swat felt like I was slugged as hard as possible, too.

 

I did have the most fantastic childhood anyone could have had, too.  I thought I'd add that because it sounds like my Mom was mean but she wasn't.  She was wonderful.

 

Sherrine

Posted 1/20/2011 8:01 PM (GMT 0)
Hi Chutz, Im with you on this one. I can remember being pain from when I was very young. Early teens if not younger. I know that alot of people just have it appear for no reason but for me I honestly think it was all of the trauma from when I was little. I had 4 older brothers who were very mean to me and my sisters. Im not talking normal brother and sister fighting. My brothers would throw knives at us, make us dig holes in the ground for know reason and one of them tried running over me and my little sister with a tractor. This same brother also shot my pet dog in front of me and believe me that took a long time to heal from. I could go on with more but this is probably to much info the way it is.
Anyhow yes I do remember having pain for a long long time.
Gentle Hugs
Shirley
Posted 1/20/2011 8:40 PM (GMT 0)
Hello Chutz,
Its interesting to look back and try to find a reason/answer/beginning. I had severe arthritis as a kid and had some trauma in my late teens (rape) and then I had both meningitis and diphtheria in my early twenties. I'm not sure if these things were the catalyst for fibro. I do think I have had it for about 15-18 years now (I'm 45 now) but only recently diagnosed. Previously I was diagnosed with arthritis and the docs were surprised at my pain levels in areas other than where the worst joint damage seemed to be. Now, I am free from depression but the other fibro symptoms are pretty clear. I do a lot of mind and meditation training and get my thinking clear and straight before believing my thoughts! Mostly its helpful to remain in the present moment but it might be interesting for a study of fibro patients to be done that focuses on shared histories so that future generations can not only understand the situation better but perhaps find a way to prevent it from invading the body ... whatever 'it' is in its total biology!
Cheers,
Nancy
(and isn't it nice the way Shirley gives gentle hugs? I love that, since we are all in such pain a gentle hug is just so lovely and loving - thanks Shirley!)
Posted 1/20/2011 8:44 PM (GMT 0)
Think way back is pretty far back...I'm 58. I was a squirrelly kid, super active with lots of energy considering I had lots of sleepless nights. I've always had trouble with insomnia.

I also had symptoms of IBS as a child...my mom just told me I had a nervous stomach. Headaches were common and I had some anxiety. An unexpected noise could always make me jump, it still does. I can't say I had fog, but I was a really spacey day dreamer.

Like Sherrine, getting my long hair brushed brought me to tears.
My Mom would set my hair in rag curls and sleeping on those knots were torture...later it was the brush curlers.

I was super skinny, anemic, bruised easily but enjoyed playing tough with all the other neighbor kids. I never really thought I was differant from anyone else. Enjoyed competition and loved team games. When I graduated from H.S. I only weighed 95 lbs and was 5' 6"....gained 35 lbs since and lost 2 inches due to osteoporosis.

I have to say my life is pretty darn good regardless of some crazy symptoms.

Hugs, Robin
Posted 1/20/2011 8:51 PM (GMT 0)
I have had a chronic sore neck and shoulders.....muscle spasms so bed that it felt like a sewing machine running across my shoulders.  I always blamed it on the time my horse fell on the road and I went down with him.  His feet just slipped when we turned....my head (temple area) hit the asphalt.  I don't even remember the ambulance ride, concussion of course....The next time was in 1986,  I totaled my nice little sports car and took out the passenger window with my head.  So I really hit my head hard twice with the exact same type of motion.

I started the chiropractor in 1997 and it took a while  and a lot of money to find a good one named Dr Smith.  Dr Smith actually fixed my muscle spasms in my shoulders and my neck is a lot better but still kills me quite often. 

All this time I would tell my GP about all the pain and muscle spasms and about 8 - 10 years ago he mentioned fibromyalgia but I never really pushed the issue.

2007 in the spring I got diagnosed with Hep C, I did 6 months if interferon which is like chemo and an antiviral pill twice a day.  I cleared the live Hep C virus but I honestly think I got left with fibro.  I think either the virus or the heavy duty drugs that I had to take kick started my fibro on a fast track to where I am today.

WHEW, that was a lot of typing (for me with 2 fingers tongue )

Posted 1/20/2011 9:04 PM (GMT 0)
I had terrible, terrible growing pains when I was 10 or 11. I would just lay in bed at night awake and just cry and cry. The bones in my legs hurt so badly and nothing would take it away. My parents just assumed it was growing pains, but my rheumy tells me it could have been juvenile RA. I had it in my arms and shoulders too, and my hips. Oh, it was awful.

I also had constant sinus infections, strep throats, etc. Terrible bowel problems and I ended up in the hospital with severe malnutrition, and was finally diagnosed with Celiac Disease. Headaches, fainting, many, many problems. But I always had energy. When I started to get sick. this past summer, I always describe it as if someone stuck a big needle inside me and just pulled out all of my energy. It's all gone. All of my old problems are there, worsened, and now I feel like a train ran over me every day.

So yes, I agree. Indicators in childhood, I had those. Never thought about it until recently though. If only rolleyes
Posted 1/20/2011 10:39 PM (GMT 0)
Chutz,

I think I can trace it back, too. I started out with bad colic, on the edge of premature. Like Sherrine and Robin, my scalp was always very sensitive, but my parents figured that was because I'm a redhead and just had sensitive skin. I'd feel "yucky" driving in the mountains, nauseuous and dizzy, (I think they considered me kind of a lightweight in the "just suck it up" department.) I had what could be looked at as kind of an "ocd" thing, where if I did something with one side of my body, I'd feel the need to do it with the other side (and now the 2 sides feel completely different - - hmmm?) I was on penicillin for about a year for repeated bouts with strep throat/scarlet fever.

When I was 13, I got 3rd-degree burns on my back and needed skin grafts...that was very traumatic. In high school, I started having some low-back pain, but nothing extreme. about that same time, I noticed I never had as much energy or stamina as other people, even though I was more conscious about what I ate and loved exercising more than anyone I knew. In other words, I tried very hard to feel good!

It seemed that my first pregnancy was when the weird symptoms really began snowballing. At a New Year's Eve party, the music hurt my ears so bad I had to go into the bedroom where all the coats were and hide under them. It didn't seem loud to anyone else. With each of my 3 pregnancies, I had more problems...migraines, constipation, then BAD muscle pain, sleeplessness, fatigue, sore throats, etc. etc.

One thing I have always been is a space cadet! It's worse now, but I've never exactly been Miss With-it ;)

What's my name? Oh yeah, Debbie
Posted 1/21/2011 1:20 AM (GMT 0)
I think back and do believe that I had symptoms as a child. My mother and I actually had this conversation a few months ago. I bruised very easily as a child, was anemic, and had terrible headaches. When my parents took me to the doctor, the doctors could never find a problem. I remember being taken to the ER around 11 or 12 years old because of a headache. Again, no one could find a problem. I too had a very sensitive scalp. My mother would brush my long hair, and I would just bawl. I would hide my hairbrush and would just walk around with knots in my hair until my mother would chase me down. I had menstrual issues and had laproscopic surgery to check for endometriosis. In my 20's, I went through a very serious bout with depression. After about a year of counseling, I began to lift out of that. My fibro didn't kick into full gear until this past year. I had nasal surgery for a deviated septum and cyst in my sinus cavity in May. My symptoms got really serious around July and that's when I started paying attention to the pain. My husband rushed me to the ER in July because I thought I was having a heart attack or stroke. My entire left side was changing from enormous pain to numbness in minutes. My blood pressure was sky high. I was dizzy and had a blinding headache. Yes, that'll get your attention quick. But, of course, no one found anything wrong with me. Anyway, I do think that it's been building for years and I just turned 35. I'm just trying to keep a positive outlook for the future.
Posted 1/21/2011 1:49 AM (GMT 0)
Very interesting reading your stories. I have similar beginnings.. I HATED having my hair brushed as a kid. My scalp still hurts and can't wear ponytail holders, etc.. it's too sensitive. Very sensitive to wearing riding helmets, hats, anything around my head. Having my hair washed at the hairdressers is so painful!

When I was about 8, my brother pulled me from a tree. I landed on my back on the tree roots and was rushed to the ER as I couldn't walk. Then he galloped over me on a horse (hoofprints across my back)... I wondered if that started the pains... I clearly remember from high school onwards, any time I exercised hard, or not even that hard, I was so sore for days afterwards. I was scared a lot as a kid, people enjoyed seeing the reaction. It was not funny. I couldn't stand being tickled, it hurt, feeling those bony fingers pressing into my sides or neck. I have had the sore neck/shoulders forever. I discovered a chiropractor about 12 years ago who helped. But within 2 days, all the pain and knotted muscles returned. The "adjustments" only worked for 24hrs or less. I have had lower back pain/hip/SI pain for years. I have gone to various PTs, chirpractors, sports medicine drs, etc...

Have had ulcerative colitis for the past 16 years. IBS on top of that too. What's strange is, the only time any dr mentioned I could have fibro is when I was prescribed the amitriptyline for the IBS. Within a couple of days, I suddenly woke with 10% of the pain I was used to having. I mentioned it to a dr who then ordered ANA/RF testing and was sent to a rheumatologist. Before that, I have had multiple surgeries - after each one I would feel so much better while taking pain meds. I hated when that prescription ran out. I took so much Advil to sleep that I flared back up my colitis. The rheumatologist I saw said it's obviously fibro, and amitriptyline is the first drug he recommends for FMS. It doesn't take away all the pain, but makes it more manageable and I can finally sleep.

Those older brothers sure can be mean, can't they?
Posted 1/21/2011 6:02 AM (GMT 0)
Yeah, they can! Mine wasn't all that nice to me, but compared to a couple of your stories, mine would sound mild. He never physically hurt me badly, at least.

Debbie
Posted 1/21/2011 6:05 AM (GMT 0)
I was diagnosed with poly arthritis when I was a kid. I don't remember any of it, my mom told me it started when I was two or three but I wasn't diagnosed until several years later. I don't know why I can't remember the arthritis pain ( probably a good thing). I guess overtime it went away and I didn't start getting joint pain again until a couple of years ago. I started getting the fibro pain a few months ago which is unlike any other pain I've felt. I just turned 32. Sometimes I wonder is this what it feels like to be 30 something? lol.
Posted 1/21/2011 12:40 PM (GMT 0)
I don't recall having pain/fatigue issues as a child or teen. I first started having symptoms about 10 years ago after my second back surgery. Prior to that I had had several other surgeries and multiple, multiple painful kidney stones.

For me, I've always figured that it was triggered by that second back surgery, or it was a cumulative process from all of the pain my body had dealt with (surgeries and kidney stones), and my pain processing center just went haywire. Just speculation, of course.
Posted 1/21/2011 1:19 PM (GMT 0)
My childhood wasn't good...I was raised by two holocaust parents. As a young child I never understood my mother's rages, her emptiness, no nurturing. I had trouble sleeping as far back as I can remember. I had severe asthma diagnosed at the age of two. But I do not remember pain during those times, well, unless I was being beaten, lol. The pain and fatigue began in my early 30s, along with depression. Actually the depression started before that but I can't really say at what age. I know I had severe PMS for a very long time and wasn't treated for it until my late 30s...
Miriam
Posted 1/21/2011 1:58 PM (GMT 0)

I had heavy, long lasting menstrual cycles from the time I turned 13.  The cramps kept me home from school and it seemed like there were only days not weeks in between cycles.  I became anemic many times.  I had a complete hysterectomy when I was 23 due to the enormous monthly blood loss.  I thought the pain would be over...uh, no.  Then the back/shoulder pain started.  I have been taking OTC painkillers since I was a teenager for some pain or another.  I have never been able to wear a barrett or a head band around my hair because of the pain it causes.  No such thing as fibro back then...I was a hypochondriac!

Oh...and you know the little shocks you get from static electricity...clothes coming out of the dryer or touching the metal door handle after scooting out of the car...OMG.  I feel the painful tingle for fifteen minutes.  I hate it when that happens.

Guess I have always been sensitive to pain. smhair

Donna

Posted 1/21/2011 2:13 PM (GMT 0)
I had long hair and was told that I have a sensitive head. I also had a touchy stomach, whenever I was upset about something my stomach would act up one way or another.
Had migraines but don't any longer. If I had pain I was told it was "growing pains" and they would go away.
I had a very bad speech impedament and was tested for IQ also. I may not be the smartest but I did pass all the tests, lol.
I don't remember much of my early childhood but I do remember the tests.
My childhood was a sad one. My mother contracted Polio before I was born. Lost Grandmother, who was my best friend and protector due to my speech, and older brother in an accident, he was 7 and I was 2. My youngest brother was born with a birth defect in his heart, my parents had the RH factor. He had his first open heart operation on his 2nd birthday.
I know that all of this made a difference of who I am and as I'm getting older I wonder if it my be physical along with emotional and mental.
There's so much going on in the world we may never understand.
Posted 1/21/2011 8:55 PM (GMT 0)
I think we all came from the same pod. shakehead   I believe I have had this all my life. I had colic as a baby and it about drove my parents crazy. Skin allergies from Day 1. I was a skinny, sickly child. I would get sick to my stomach over just about anything. I probably have the world's smallest bladder, always running to the bathroom. Insomnia since childhood, never took naps - still don't. I was born w/ a nasty cold.

I was a tomboy, ran until I dropped. Had a hard time in school. I could read, rather well, actually. In our reading group I would read ahead because I couldn't stay w/ the class while someone read aloud - 'D    i   c   k   a  n  d    J  a   n   e. So when the nun called on me I didn't know the place, I was a page ahead. They thought I was stupid and couldn't read.  smilewinkgrin   I was sick alot in school, grade school and H S.

When I got my period, I really got it. I had horribly heavy periods and they would last for 2 wks, stop for a cpl of days and come back for another 2 wks. It was so bad I couldn't go to school. Teachers and guidance would question WHY I was out so much, 'School is so important, you need to take it seriously!'

I was pregnant 3 times, the first baby I lost. During the 2nd preg, I threw up all day, every day till the day they induced labor. I worked each day till a few wks before my son finally came. My last pregnancy, I was home and I bled thru most of the preg and finally put on bed rest. I had tubes tied the day after my 2nd son was born. I didn't think it was possible to bled more than I had all those yrs, but I was mistaken. I had many yrs of hemorrhaging till I finally had my hysterectomy.

That seemed to be the final push into the LIFE OF FIBRO. My back is my constant pain and weakness, but the rest of my body tries to keep the old back company.

I have the strangest memory. I could tell you what I was doing on some random date, what everyone was wearing, who said what. But don't ask me what just happened. You will only get a blank look. shocked   I get lost in my own thoughts and in my own town. I know I'm not stupid, but I give a darn good impression of it some days.

My skin is very fair, my hair was red, until it decided to go prematurely white. I am one delightful ball of sensitivity. My skin, my hair, my eyes, my hearing! I have been told tooo many times, 'You can't possibly be that sensitive!!' Ha Ha HA, Oh,yes I can be that sensitive! Good grief!

I don't like Fibro, believe me, but I was so happy to hear what it was and it was REAL. I'm not crazy - LOL. I was so isolated trying to find some support system locally - nothing! What a happy day when I found HW and in particular the Fibro group. What a blessing!!

We may all have come into this at different times of our lives, but we have found each other and that is a blessing.

God bless.  Alice.

Posted 1/22/2011 12:11 PM (GMT 0)
I think mine started when I was a teenager. I can remember sitting in class one day and my right arm suddenly feeling like it was going to fall off; it turned out to be bursitis and after that I know I was suddenly sensitive to touch; play wrestling hurt like heck and I had headaches all the time. I too hated going to the hairdresser because the shampoo sink hurt my head and neck so bad. It's funny you ask this because my docs nurse asked me about it at my last appointment. And watching my girls grow up, I think my younger two will end up with this dear disease - they seem to ache and hurt more than normal and they both had terrible growing pains when they were smaller. Oh, I also think the fog was there when I was younger and I just thought I was spacey or stupid because I couldn't follow my friends conversations. Interesting...
Posted 1/22/2011 5:40 PM (GMT 0)
It's interesting reading everyone's stories! I think I am one of the ones who can't trace anything back to childhood. Although I do remember being really tired all the time. But I hardly ever had pain. I LOVED getting my hair combed. People said I had a hard head. (physically, not mentally, lol) of course, I was also super cautious so was never much into sports or anything that could make me feel bad. I know I always had a weak lower back which runs in the family. I did put myself through torture when I was anorexic and bulimic, then even after that I was still an avid runner and weightlifter. I never felt pain from that. I just woke up one day and my hip would not stop hurting and then after 7 months of constant hip pain, the pain started all over my body. I did find out I have a bulging disc in my back. So for me, I wonder if it is more physical trauma, and combined with lack of sleep. Ever since my daughter was a baby, I have only been getting 5 or o6 hours of sleep a night.
Posted 1/22/2011 5:41 PM (GMT 0)
oh, and just to add, my mom has Fibromyalgia, so it runs in my family. (and my Aunt has MS which I don't have thankfully)
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