Further evidence for FM from birth

Discussion in 'Fibromyalgia Main Forum' started by Jeweller, Aug 28, 2002.

  1. Jeweller

    Jeweller New Member

    I was speaking to my mother about my FM over the weekend, and she revealed a couple of things which strengthened my conviction that I've had FM from birth.

    I am sure I inherited it from my grandmother, through my father. I find that I can't tolerate anything too acid, particularly orange juice. My stomach rebels, and if I persist in drinking orange juice, my joints let me know it isn't a good idea! My father has the same symptom and so did my grandmother. The interesting thing is that apparently I refused orange flavoured things from the age of 6 months onwards, and SO DID MY FATHER! My father doesn't display many of the symptoms of FM, certainly not enough for a formal diagnosis, but I am becoming more and more convinced that he has proto-FM, for want of a better word. Maybe sub-FM would be appropriate.

    The thing which first suggested to me that I might have had this from birth is that I thought the tender points were supposed to be tender! That implies to me that I've never known anything different.

    I know Mom/Lynda reckons she's had this from birth, but does anyone else?

    Ros
  2. Jeweller

    Jeweller New Member

    I was speaking to my mother about my FM over the weekend, and she revealed a couple of things which strengthened my conviction that I've had FM from birth.

    I am sure I inherited it from my grandmother, through my father. I find that I can't tolerate anything too acid, particularly orange juice. My stomach rebels, and if I persist in drinking orange juice, my joints let me know it isn't a good idea! My father has the same symptom and so did my grandmother. The interesting thing is that apparently I refused orange flavoured things from the age of 6 months onwards, and SO DID MY FATHER! My father doesn't display many of the symptoms of FM, certainly not enough for a formal diagnosis, but I am becoming more and more convinced that he has proto-FM, for want of a better word. Maybe sub-FM would be appropriate.

    The thing which first suggested to me that I might have had this from birth is that I thought the tender points were supposed to be tender! That implies to me that I've never known anything different.

    I know Mom/Lynda reckons she's had this from birth, but does anyone else?

    Ros
  3. BonnieQ

    BonnieQ Member

    How are you this morning? And the approaching wedding coming up, all set? Anyways, Yes I also believe I have had it from birth, even though I wasn't "officially" diagnosed until my mid 20's. Then it was called fibromyositis, same thing. I just always accepted the symptoms as part of this dd. I had terrible allergies as a young girl, colds, coldsores, etc. It wasn't until I read a book given to me by the arthritis assoc. that I read all the symptoms and said "That's ME!" Back when I was diagnosed, they didn't give any information about fibro , I was just told it was inflammation of the muscles. I even had a muscle biopsy! Over the first years, it would come and go. Not like now when there are few days it goes unfortunately. My brother shows signs also of this dd. Both of my parents have passed away so I don't really know for sure if they ever had the symptoms of this dd. Have a great day!!
    Bonnie
  4. Jeweller

    Jeweller New Member

    Wedding all set and ready to go thanks!

    I had the same thing - I read a book before I got diagnosed and came to the "fibromyositis" section and identified with every symptom! In fact, I think that I was even diagnosed with that. It was only when I started researching that I realised no one calls it that any more!

    Ros
  5. Cactuslil

    Cactuslil New Member

    I was always regarded as "tired" or fatigued easily. I sitll move slow! And pain! As a child/teen I did not experience much pain except for immunizations and a bout w/kidney stones/gravel but to me, the 'ouch' seemed to be awesome.
    *
    Once I started making good money and used it to make my life and my daughters' life easier, seemed my energy level automatically went up! Now that I've been on the down side, to put it mildly, my energy level went down and thus after much trial and tribulation, I reached the point where a diagnosis of FMS/MPC was made.

    I just had a thought as I was responding to this...my parents are looking at 80 and are go-getters.....they both look 65, normal to slim in build, have no signs of mental deteriation; father still plays in a band, a 4-hr gig! So

    that leaves environmental factors...perhaps that will be our common denominator....we have been exposed to various and sundry agents in the air, in food grown in soil that is contaminated by air pollutants such as solid emmissions (which I fought about 2-years ago), formaldahyde (sp) that is shot in the air by night to fall on the fertile soil north of where I live....I could write a book on the subject but no one here atleast, would not listen until it is too late. Now the folks are "mumble-mumble-mumble" but I feel researchers will find out something concrete, now if they will just release the correct information. Love Lil'
  6. sarah

    sarah New Member

    Ros,
    This is interesting as I have been wondering the same thing. My first memory was at the age of two when I felt bad and very fluey and foggy. My circumstances improved soon after that memory and so did my health, but it was often just in the background. My mother was taking things she shouldn't have, before I was born and I was checked for withdrawal symptoms etc after I was born. They were smoking cannabis after I was born so the environment would not have helped either. I know I'm intolerant to cannabis. It's as if those unhelpful situations were the cause of my symptoms and I've been trying to overcome them ever since.
    BW,
    Sarah.
  7. thereseuk

    thereseuk New Member

    I,m convinced that I have had this since birth. Of oars like most people if you grow up with it you think that it is normal. But mine became much worse after my periods started at 14 so I believe mine has a hormonal element to it.
    The thing is though my mum was always ill and all the family including me thought she was a hypochondriac. This was in the 70s. I feel guilty about that now. I believe it was passed to her from her father and in term from his mother. I also think one of my brothers has it. You would think he had alzeimers his memory is so bad plus he also has mood disturbances. He refuses to accept it though.
    This is why I,m so desperate to find answers since I have 5 children.I just wish the medical proffession would wake up and that some serious research is undertaken. There should be some type of genetic marker which would at least allow the possibi;ity of gene therapy for future generations.
    I live in hope
    love therese
  8. Shirl

    Shirl New Member

    I did not have Fibro when I was a child, I was extremely healthy, did not even get the general childhood diseases, or head colds etc. I did not know what being sick was, and surely no pain. I had pneumonia in my thirties, and that was the beginning of the pain, after that I had never been without pain in one part of my body or the other.

    But I do believe it could be hereditary. My Grandfather had what was called; Fibrositis, so did his two sons. They were big strong men, but had pain that would put them in bed for days at a time. They were Dairymen, and worked hard, they were not sick, but full of pains.

    My Mother, Father and Brother did not have anything like this.

    I recall a thread we had on this board over a year and a half ago that many of our family members that were of French decent had some form of what seemed to be Fibro. My Grandfather was second generation from France. I started doing a genealogy search, and found that many of this side of the family had some sort of ailments that related to this kind pain.

    My Father's family were second generation from Germany and Ireland, they never complained about pains in anyway, I am still doing a search on the German and Irish side, but so far they did not suffer from anything of this nature.

    I don't know if this has anything to do with it. But it was interesting.

    The German side mostly worked as University professors, office workers etc. But the French side worked with animals and many were farmers, one great grandfather had a plantation.

    Many of the men served in the Armed Forces during both wars. I don't know if that has any connection either. But I am still searching.

    Its interesting that all of you were not able to eat oranges or citrus fruits. I can't eat grapefruit, it will make me deadly sick, but I can eat oranges in moderation.

    If we keep at this, someday one of us will come up with the 'why', then maybe the 'wherefore' of these illnesses!

    Congratulations on your coming wedding. I hope the sun shines brightly on your special day!

    Shalom, Shirl

  9. sedgewarbler

    sedgewarbler New Member

    You may be interested to know that I and many colitis sufferers cannot tolerate fructose.

    It seems to set off the inflammatory process which is also accompanied by temporary arthritis. In a bad colitis flare my knees have been so swollen I couldn't bend them and barely walk.

    As a result I eat no fruit at all.

    It also appears that in the States all their sweets (candy) contain fructose whereas in Europe our sweets are made with sucrose which doesn't cause the same problem.
    Also in the States corn sweetener (containing fructose) is used in soda pop, pastry, cereals, coffee creamers, salad dressings, sweet pickles and ice cream and many many other foods.

    It seems that some people may have an inability to convert fructose into glucose and it is therefore not absorbed into the blood.

    A surgeon has been quoted as saying:- "I have had ulcerative colitis patients drink a glass of orange juice while I examine the insides of their colons with a proctoscope and I could see their bowel linings become inflamed right before my eyes"

    Interesting.

    Love Vicki
  10. Jeweller

    Jeweller New Member

    I didn't know that about fructose/sucrose. I don't have a problem with most fruits, just the citrus ones normally, so I think it's the acid that is causing the problems for me. I also have an odd sympathetic nervous reaction (I think it's sympathetic not parasympathetic) where ingesting or even smelling organic acids brings me out in a hot flush. I can be sitting next to someone eating a packet of particularly strong salt and vinegar crisps (potato chips) and boom - hot flush time! It made working with organic acids in the lab quite interesting...

    However, I don't eat a lot of fruit, so maybe there's something going on with the fructose too. I did wonder why my IBS was so bad during the week we spent in New York.

    Ros
  11. dlizard

    dlizard New Member

    that I've had this since I was a kid! at the age of 12, the doctor told me I had growing pains... LOL and now I know it doesn't hurt to grow!!!! I do beleive that there are two kinds of this stuff... the obvious inherited kind... and the kind you get after an accident, illness, stressor. I can remember being "exhausted" after PE in school! I used to use that word and my mother said" get real and grow up"...so I did until I was in college! Then after a bout of 6 months of illness I dropped out of nursing school cause I just couldn't do it! About 2 months after I quit, my hemoglobin was 2!!!!!!! I was 18!!!! I hadn't bled anywhere and the doctors were stumped. Several years later this happened again.... but the doctors listened and my hemoglobin was 8! It's happened several times since. I was diagnosed with lupus in the 80's but it never fit as a diagnosis.... then finally this year!!!! (I'm 41) I got the fibro diagnosis..... and it all made complete sense!!!! soooo have I had it since birth? you betcha!!!!!!!!! Good luck!
  12. thereseuk

    thereseuk New Member

    Proffessor Hooper who does the research into autism and related disorders had sosmething on his site that mentions that people like us have problems with citrus fruits.
    Hes a medicinal chemist and did name the substance. I,m thinking it might be phenolics. Does that ring any bells.
    I know that word is mentioned in relation to some foods but it might be in relation to something else. It also mentioned aspirin in the same group so you might be able to work it out.
    love therese.
  13. pamelasng

    pamelasng New Member

    Hi Ros, just thought I would add my bit, I was diagnosed in my thirtys but both our daughters were born with FM, they are now 15 and 16 but were having tests since they were two for irritable bladder and bowel, mouth ulcers, ect,ect,ect. They were diagnosed only about five years ago because our GP would not do dot to dot with their symptoms,and no one thought of FM as genetic no one we consulted anyway..bye for now Pamela
  14. herblady

    herblady New Member

    i've had something since i was small. i think it was the palindromic rheumatism. i remember having joint pains so bad i would cry. mom said it was growing pains. yeah right, it doesn't hurt to grow. cindi
  15. PAT

    PAT New Member

    I am positive I have had FM all of my life. I remember being 5 yrs. old and sobbing in bed at night because my legs and hips hurt so bad.I never slept well as a child, and at times,my Mom would come looking for me after school, and would have to carry me from the bus stop, my hips hurt so bad. From about the age of 5 my family called me "the little hypochondriac" How's that for a kid's self esteem? I wasn't officially dx till in my 20's and also had the "fibromyositis" dx. Very interesting about the orange juice!! I have NEVER been able to tolerate it. I have a 12 yr. old son who I KNOW has FM, and can't get a single doc to agree to it. "Kids don't get FM" is what I've been told!! Drives me nuts, he will have to live without treatment it until he's finally dx as an adult! Patti G
  16. PMangels

    PMangels New Member

    This is an excellent post and I'm sure learning a lot from it. I have read a couple articles somewhere where they are thinking this could be hereditary. As a child I remember having such leg pain that I would cry. Of course I was told it was growing pains too. I do have a daughter who is having a few symptoms that I have so we'll see. And it is true to this day when a doctor can not find anything wrong with your test they think you are dreaming it up. I don't know anyone specific in my family who had FMS or if they had it the doctors didn't know what to call it at that time. I do know that I had a couple aunts and a grandmother who complained about their "jumpy legs". I wonder if they had RLS. I've been diagnosed with that also. My rheumy has given me a medication to help but so far I've not had to much relief. Maybe it takes a while for the meds to kick in. In the meantime I am keeping my eye on the research that is being done. And my wish for everyone is that someday they will find a cure.

    Arlene