Reading information on this site makes me realise...

Discussion in 'Fibromyalgia Main Forum' started by bubblesgirl, Oct 13, 2005.

  1. bubblesgirl

    bubblesgirl New Member

    Before I found this site, I thought that my symptoms began three years ago, Now I realise that is not the case and I am beginning to realise that I have had the symptoms even in childhood.
    Many of the symptoms described as growing pains etc I recognised, but the one that shouted to me most was the soft spot on the head.
    I have always hated having anyone touch my head, because I thought that my bones must be thin, because the slightest touch would send me into spasm and my brain would literally hurt.
    I have never mentioned this before because I thought it was me just being silly.
    Now I am thinking I have had this condition for years and looking back recognise many of the symptoms occuring at various stages of my life.
    Has anyone else discussed their whole life symptons with a GP,because I am wondering if we are missing the link somewhere. I am thinking about childhood diseases such as chicken pox are they doing more damage than we realise?
  2. DLsGroovyMoM

    DLsGroovyMoM New Member

    to listen to your life syptoms? I have tried as I have known from very young...that I was somehow different and that my "growing pains" were just not normal. There is a post about a new symptoms list from writer Devin...so many of them I have had all of my life and some are just now coming up. I too think there is a link somewhere I just don't see a doc spending that much time with people...I would like to see the person who put that list together, as I could talk for days about life long symptoms...and I hardly ever mentioned most of mine to anyone as I didn't think they were realated. until now.
    Amy
  3. Mikie

    Mikie Moderator

    My FMS was triggered full blown about six years abo following an auto accident. My CFIDS was triggered full blown 16 years ago following a mycoplasma infection. I partially recovered but was never the same again. Still, I can look back into my 20's and remember hip and leg pain so bad that I went to the doc who could find nothing wrong.

    Now, if I look back into early childhood, I can see signs of these illnesses and I know I've had them all, or most, of my life.

    No one know what causes our illnesses. There are a number of triggering events. Seems we can recover from some of them but if enough of them pile up, they can bring us down.

    Most researchers now believe we are genetically predisposed to these illnesses and any number of triggers can cause us to get sick or, at least, display symptoms. I believe there is a genetic component which may explain why mostly women are affected and why our illnesses run in families. My Mom had FMS, I have FMS and CFIDS, and both my daughters have FMS. One also has intersticial cystitis and vulvadynia which are both common in those with these illnesses. I have cousins who also have been sick with strange conditions which seem to be related.

    There are likely multiple genes affected and that would explain why we are not a homogenous group and why treatments do not work for all of us. Recent research in Scotland has revealed multiple genes in PWC which are upregulated. This is likely going to lead to treatments for CFIDS. I'm guessing that similar research into patients with FMS will reveal similar results. I'm also guessing that some of the same genes are upregulated in both illnesses which would explain the overlap of symptoms.

    My guess is that early childhood diseases and viral infections can trigger symptoms in us but that those are not the cause of our illnesses.

    Love, Mikie
  4. Bruin63

    Bruin63 Member

    I have had that same Sore spot on my head all my life.
    It's a Chronic Myofascial trigger point, that causes mine.

    I can't wear my hair up to high or the roots hurt when I take it down.
    I have always been tender headed and hated the way Beautican's would be so rough with your hair when cutting or styling.

    My Sister, the youngest, was a Hairdresser, and she was the worst on me, lol, The sad part is that she also has FMS, too, and she is in such a flare, that she cut all her hair off, and went bald.
    I just visited with her, and she actually has a nice shaped head, so it looks nice, instead of weird on her.

    So far, nothing has taken that tenderness away, so I avoid all Beauty shop's, except for one, place where the girl is great about my problems, and takes it easy on me.

    This was the Symptom that, made me Believe my dx of FMS/CMPD.
    Glad I know what it is, as I too had it from childhood, but it sure, doesn't make it go away.

    I Run almost hot water in the kitchen sink and hold my head under it when it gets real bad.

    Hug's,
    sharonk
  5. bubblesgirl

    bubblesgirl New Member

    Thanks to you all for responding to my comments. I also believe that there links in the genetic make up of families. I can remember my family being bemused that my grandmother always seemed to have a bit of bandage wrapped around her somewhere, she was always rubbing herself and saying she had a pain.
    The interesting thing is my brothers have similar health issue's to me and one of my neices has developed Chronns Disease. My son is also complaining of feeling tired all the time and has stomach and bowel problems.
    We all live in various parts of the uk and so have different GP's but if we all lived in a village and shared the same GP I think there would be a different approach.

    For me that is one of the problems, as families we have become so diluted that genetic links are not being followed and in turn our very real conditions are being seen in isolation and not as a whole.
    I hope that something positive comes from all the information on this site.
    I am forever an optimist its the one thing I have that doesn't hurt!! LOL
    regards to all Sandy
  6. orachel

    orachel New Member

    I keep saying I "got sick" 4 mos ago...but I was CHRONICALLY ill as a child. Had pneumonia 6 x by the time I was 8....had to get 3 allergy shots weekly. Most of my memories of holidays as a child are sitting inside being sick and being frustrated that I couldn't play with other kids. I also had awful growing pains in my tweens. Also was always told that I had an "asthma like" condition...small bronchial tubes. Worried about my step son, as he has AWFUL pain in his back...he's just turned 7..praying he doesn't end up with something like this, but at least there's no genetic link...so that's a good thing in his favor.

    Also, I knew my mother was a vegetarian till I was about 6, but my godmother just told me that she and my mom (who passed away long ago) used to get into arguments because my mom raised me veg, but did not supplement my protein needs in any way...no soy, tofu...nothing. My godmother really thinks though my diet was mostly whole grains and veggies as a child, I was quite malnourished. Its sure possible. My mom was also the ultimate flower child, baked me homemade baby biscuits and used cloth diapers...but did smoke thru her whole pregnancy with me and even while nursing. This was in 75, so they knew it was bad, but not nearly as much as now.

    I then started thinking about how I've always gotten strep throat at least once a year, and always had chronic sinus infections and headaches. I've never been "fired" for performance of any job (I'm quite good at what I do if I do say so myself! LOL....but cannot do it anymore, clearly...) I have either resigned or been asked to resign 2 jobs due to excessive sick time (even doctor excused). I don't know how the heck none of this ever added up before, but then last year I had a horrific experience with a boss...ended up with me in major depression and ptsd (first time for both of those in my life..never went thru anything like that before!). Took a leave of absence while my company did a 6 mo investigation into my abusive boss' actions, and finally he was demoted and fired. I was unpaid during that time, but dilligently going to therapy to work thru my issues. Gradually got better, and finally, in January, I was juuuust about my old self, and went back to work (did take a step down just to minimize stress and have less than 50 hr workweek)....Everything going along swimmingly, then
    BAM!!!
    June 14th, woke up and couldn't move.

    So yeah, one could say that I got sick 4 mos ago...but I'm quite positive that this has been with me in one form or another since early chilhood. I just never bothered to notice it. Ok....MESSAGE RECEIVED LOUD AND CLEAR! I understand that this is my big "wake up call!" . Now I just need to get my health stabilized to the point where I can really get to work on my wellness!

    Good post idea!
    Hugs.
    Rachel

    And yes...don't know abt childhood illnesses, though I did read that history of mono occurs often in people with fm....I had chicken pox, mono, chronic pneumonia, scarlet fever (yes...people do still get it! lol), and a ton of other chronic allergies and infections...and no...have not discussed this with my "doctor" because neither of the ones I've seen for primary care of my FM have listened to a word I've said, it seems....hunting for a new doc, hopefully that will change! LOL Oh, also had the ptsd and 2 "minor" traffic accidents that I was involved in...read that that can set off onset as well.
    [This Message was Edited on 10/14/2005]
    [This Message was Edited on 10/14/2005]
  7. jennypee

    jennypee New Member

    I had lots of symptoms growing up that my mom and I explained away. Headaches all through my childhood. The awful growing pains. Fatigue that would last for days. Terrible insomnia that drove my parents crazy.

    I think they were easy to explain away because they came in flares. Haha. Into my teens it got worse, especially the headaches. That's also when the IBS and back pain started. I thought I was just eating poorly and staying up too late.