Discussion in 'Fibromyalgia Main Forum' started by petsrme, Jun 23, 2005.

  1. petsrme

    petsrme Member

    I have been meaning to post this for the last couple of days but have gotten distracted by other posts. I may not be able to write all of what I want, but will come back tomorrow when my hands are feeling better. I am very worried and sickened by something that is happening to my 16 year old daughter. I am not sure if I have told you (I probably have since I have such a big mouth) that my lupus/fibro problems started when I was about 16-18 when I started to get hives and raised patches on my chest when I would be in sun. That was my first symptoms and what later led me to believe I had lupus when I looked in library medical book for what causes hives. That description said lupus and it fit me so well.

    I never got those hives until I was a teen. I had been in sun all my life. My daughter was out in the sun Monday and her chest broke out in the terrible hives. It is one big patch covering her chest and is about the size of a saucer. It is itching her like crazy. It looks exactly like mine used to. I haven't had it in a couple of years because I keep my chest covered if I get in sun or even go swimming.

    My daughter began a few years ago to have joint pain and growing pains for several years. I took her to a orthopedist a couple of years ago because she had terrible shoulder pain. They tested her for lupus, cancer and several other things because of my history. All was negative. Her pediatrician, who was my doctor until 1998, when he quit seeing adults (he is now fully retired) told her that she had to take care of herself and exercise because it was likely she could get my problems since she is already having joint pains at age 12. He was wonderful, but could scare you occasionally. I kind of wish he was around now though because he would keep testing her until he found something now that she has these hives. He would not go by ANA tests only.

    My fear is that she now will develop full blown lupus one day. She may even have it now. My mother took a drug called DES when she was pregnant with me to keep from losing me and they have now found this drug is causing multiple problems in the children and their children too. It can cause cancer of cervix, fertility problems and now they think it causes autoimmune problems like arthritis and lupus. I truly think one day they will find out that it has caused the epidemic of fibromyalgia. The drug was given to millions of women between the 1940's and 1971. It was given to prevent miscarriage and as a vitamin type thing. The CDC is studying it now and doing research on it. I put a post a long time ago on here about it.

    I am just afraid that the reason my daughter is having identical problems to me is because my mom took this drug. The CDC has found that third generations are now becoming known to be effected too. I think it is called DES daughters and third generation DES. It is rare for a child to also have lupus if their mom does. I just think she has the chance because of the findings they have found and because of this clear sign of my first symptom. I have never in my life seen anyone who gets hives like this. My friends and family hadn't either. They always thought I was a freak. It was so embarrassing. My daughter is worried because she remembers this happening to me and saw it for years and knew it was why my doctors kept testing me at first. I am trying to tell her that it is probably means nothing. I wish I believed that.

    Sorry for being so long and incomprehensible. I hope I made myself clear. I have to go now. My hands are not too god.

    Thanks for your patience
    [This Message was Edited on 09/26/2005]
  2. CanBrit

    CanBrit Member

    I read your previous post on DES. My mother had 7 miscarriages in between four live births. I well imagine that she was given some kind of drug. I was born in 1956.

    I too had cervical dysplasia which resulted in having a cone biopsy done. 8 years later I had a hysterectomy.

    My daughter has a tipped uterus (uterine abnormalities was mentioned in that article). She also suffers from many of the FMS symptoms.

    I know you have great concerns and are worried for your daughter but there is really nothing you can do. However we all came down with these diseases/syndromes doesn't matter now for us and our offspring. We can only hope that future information will show how to protect and/or prevent future generations from the same.


  3. victoria

    victoria New Member

    I know how you feel! My 17yo son started mirroring many of my physical symptoms this past year (I have CFIDS) along with problems with anxiety/depression prior to that. . . I was really worried about what to do with him, he was in massive denial anyway.

    But just found he has chronic lyme, he was positive on tests, so he can't be too much in denial at this point. But this is so much harder to have to see him go thru this than to deal with these DDs myself, as he hasn't had much of a life really and I was 'lucky' to not have major symptoms til recently, altho my problems started at 18. (I probably have lyme too, as I've been on a different protocol and been herxing with it)

    so, while I am grateful we have a dx as quickly as we did for him, and a protocol at this point for him, it is so painful to me that he has to deal with it at all. . .

    all the best,
    [This Message was Edited on 06/24/2005]
  4. petsrme

    petsrme Member

    Thank you for your replies. I really always appreciate your help. I am calling her doctor Monday and talking to them about what is going on. She also is now having terrible period cramps like I did at her age.

    Victoria I am so sorry your son is having symptoms at such a young age. Is there a treatment or cure for lyme? My doctor has putten that as a possible diagnosis in my records. I didn't know there was a test for it. I would assume he would have given it to me but I guess he didn't. I hope that your son will get some relief from it. He is too young to be sick also. It is so hard to see our children feeling bad. Best wishes for you both.
  5. foxglove9922

    foxglove9922 New Member

    I would highly recommend you see a good physician or rhuematolgist to rule out any autoimmune disorders for you daughter.

    I suffer from CFS and my daughter started showing signs of it at age 14. She's now 17 and suffers terribly with CFS.

    I too get raised rashes on my chest and back when I go in the sun. I had them biopsied and it came back Sub Acute Cutaneous Lupus Erythmatosis (the skin form of Lupus, not Systemic). I now am on Plaquenil and use a sunscreen 75.

    Apparently alot has been written and said about genetics and autoimmune disorders. They tend to run in families so I would not hesitate having your daughter evaluated by a good physician.

    Best wishes to you and your daughter and please do keep us posted..........foxglove
  6. CarolK

    CarolK New Member

    I find this thread most interesting... and heartbreaking at the same time.

    My mother passed away in 1996 so I never had the chance to ask her if she was given DES. I know she had one miscarriage. She had three children and one miscarriage that I know of in the 1940"s. She ened up getting diabetes and died from kidney failure.

    As a young girl I suffered greatly from leg pains (which they called "growing pains")and had hives everytime I took a shower.... warm water seemed to bring on hives. I did have two miscarriages but thank God I had no other "female problems". I began to have signs of FM and CFS in my late forties... which I just attributed to menopause.

    By age 50 I was having daily headaches, constant sore throats and tender glands in my neck... along with fatigue and unexplained aches and pains everywhere. Shortly after I got the diagnosis of FM and CFS.

    Now my two daughters have Raynauds disease... another auto-immune disease and one of them has very painfull menstral cramps.

    Anyway... I just thought I would add my two cents to this thread. Could it be that the EPIDEMIC of FM and CFS are due to this horrible drug/hormone DES?? I wish I could ask my Mom if she took it. My sister passed away at age 49... she did have Polio when she was a baby and had many complications from that... as for my surviving brother... well he has had heart problems and a cancer in his salivary gland.

    Blessings to all... CarolK
  7. susabar

    susabar New Member

    I can't imagine anything worse than witnessing this un-fold in your child. You must be heartbroken. I cried for two days when my niece was diagnosed with migraines at age 12 because like me she will be in for a very difficult life. There really is nothing of comfort I can say except your daughter will triumph from her illness and develop character and compassion unsurpassed in others. This will amke her an extraordinary person indeed. As a mother myself with a daughter who has CFS, I can only tell you how helpless you sometimes feel. Give it to God or your higher power.
    Lot's of Love;
  8. victoria

    victoria New Member

    There are tests, but the longer one has it, the more likely you are to get a false negative. There is a growing number of people showing up with it previously dx'd with CF/Fm, also other diseases like lupus and MS.

    As for a cure, no one knows if you can really get rid of it or just put it in remission. Right now my son is doing a protocol of abx that changes every month; if no or little improvement by mid August, they'll likely prescribe IV abx. Altho this month he seems a little better, who knows how he'll be when the abx are changed again in 2 weeks.

    If your daughter has painful periods, has endometriosis been considered? This is something many of us with CF/FM have, myself included. I was dx'd with severe endo, and was able to have little to no pain by doing the candida diet for many years, so happily never had to take any of the heavy duty RX drugs.

    I hope you can get some answers!

    all the best,
  9. pgfnch2

    pgfnch2 New Member

    DES? My mother passed away in 1971, and I have no way of knowing what went on! I just wandered what you mean by DES?
  10. petsrme

    petsrme Member

    Hi, I am so sorry but I can't remember how to spell the full name. If you will click on my name and look for the post that says "Did your mother take DES to keep from misscarrying you?" that will explain it all to you. It is also probably on the 2nd or third page of posts. Let me know if you can't find it and I will either bump it for you or repost it with your name in title.
  11. petsrme

    petsrme Member

    Thank you Victoria. I wish the best for you and your son.
  12. petsrme

    petsrme Member

    Bumping for person who asked about DES
  13. Sue50

    Sue50 New Member

    I have often wondered if my problems are caused by my mother taking it for 7 months while she was pregnant with me. I have never been "normal", I had cervical dysplasia, my uterus is "flatened" (DR Terminology), I had 2 miscarriages, I also had a mole pregnancy which turned into a cancerous growth, and my only child (a son) had Kawasaki's disease when he was two, which is a disease that the cause is unknown and no cure, Thank God he survived it. I have been tired and achey all of my life, never able to keep up with others. I also have a mental illness-Bi polar
    This is an interesting thread, just how many of us are DES dtrs, and 2nd generation?
    [This Message was Edited on 09/27/2005]

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