Lupus and skin tone

Discussion in 'Fibromyalgia Main Forum' started by ABCDfamily, Jul 17, 2006.

  1. ABCDfamily

    ABCDfamily New Member


    Is it me or has anyone noticed that those that seem to suffer with Lupus are generally fair skinned? Not all but the majority from the research I have been doing?

    I'm pretty new to these boards and I have a strong feeling that I am going to be diagnosed with Lupus on Thursday. I'm scared to death and for the first time once I saw the right DR and 38 tests later I will have a diagnosis.

    Is it normal to feel so angry at our medical profession? At my age and all the years of suffering and loss I have just gone to see a Rheumy. The DR. was a bit stunned himself and seemed as if he was shaming the medical community for missing all of these symptoms. I'm so mad that I am going to find out what my rights are. I find my emotions jumping all over the place. Mostly I'm scared of what would happen to my daughter should something happen to me. I know my son would be loved and cared for but my daughter will end up in the hands of a sociopath.

  2. Jo29

    Jo29 New Member

    I have not noticed, but you might post on the Lupus board and see if anyone else is fair skinned.

    I know the road to diagnosis can be a long one. Most of us who have lupus have been through a few years before diagnosis.

    Has the Lupus already started to attack your body? Are any of your organs involved right now. If that is the case, I know a lady who almost died and that is how they found out she had lupus. She is doing great now! She is even working at a job. She amazes me. So there is always hope.

    Just be glad that you will be put on medication that will probably put you into remission and you will feel so much better. You do still have to take care of yourself and rest, rest, rest. The prognosis for lupus is not what it used to be. You can lead a full life it you take care of your self and take your medication.

    Like I said earlier, you might want to post on the Lupus board also. If you haven't already.

    hugs,

    Jodi
  3. ABCDfamily

    ABCDfamily New Member

    Jodi, THANK YOU for your hopeful words.

    No organ involvement that I know of. I am more scared of how it will progress because no one really knows. I'm not meaning to sound so grim and I have no firm diganosis yet other than CF/fibro (not to make that sound trivial)The waiting is the hardest part but it seems to be leaning in that direction. For years the DR's should have sent me to an RA DR. but did not.

    I'm just really in love with my children and I am scared for what could happen to my daughter should something happen to me. I suppose it's a mothers instincts. I'm a wreck emotionally and I can't even find a good therapist to talk to. I do feel like I am going out of my mind and yet the DR's give you all this info and then tell you not to stress. They say stress makes it worse.

    It's things that we do in life on a daily basis that remind me..............I'm not well. I want to be normal and have a normal life. I have no idea what it's like to go to a weekly soccer game and watch my children play, a weekly poetry class is something I would love but have never experienced, dancing with my New hubby every week, working out on a regular basis or holding a normal 8:30-5:00 PM job. I have NEVER had these things. It's a good thing I have been able to make a decent living.

    I hate feeling sorry for myself and I don't want to live the life of a victim. I'm just so angry at these DR's and I wonder why they are able to go free as they rob peoples lives from not doing there job.
  4. ABCDfamily

    ABCDfamily New Member

    Just wanted to introduce myself. Please check out my profile. I just found this board last week after a DR's visit. It is nice to know that there is some support out here :)
  5. JLH

    JLH New Member

    WELCOME to our online support group/message board!!!

    I have fibro, cfs, systemic lupus, arthritis, osteoporosis (this is all in the rheumy classification! LOL), and much more. (see my bio)

    I was diagnosed with lupus about 10 years ago, but had all the symptoms when I was a child in grade school. I am also very fair-skinned.

    I read your bio, and one statement that you made concerns me .... it is "I am hoping to enjoy what I do have and get pass the fear of dying but then my mind gets in the way."

    Please don't sit around and think you are going to die from lupus if you are diagnosed with it! That happens only in rare cases now. Things have improved from years ago! Make sure you always talk these concerns over with your doctor.

    You do sound like you have some anxiety and/or depression issues. I hope you find a doctor soon that would be able to help you. Why do you think your daughter would end up in the hands of a sociopath if something should happen to you and your son would be loved and cared for?

    Is it normal to feel so angry at our medical profession? Of course. However, we also have to look at ourselves, too, to see if we are partially to blame. What I mean by this is .... if you are going to your GP and he wants to just keep running test after test, etc., there is a time for you to say STOP, and ask to be sent to a specialist. Or, if you recognize that your doc is a dud ... dump him and find another one! Doctors who are not familiar with fibro/cfs/lupus wouldn't know the symptoms to put them altogether and make a diagnosis. It's just sad that some of us have to go through so many doctors, tests, time, and money to finally find out that we have problems that they can't do anything about!!

    I wish you the best.

    Hugs,
    Janet

  6. rigby

    rigby New Member

    Lupus runs in my family some of us are fair skin and others like me are not. It has a high rate in the hospice commmunity. When I worked in the hospital mostly show hospice with really bad cases. Mine is only in the joints and muscle but one cousin has it so bad her liver is shot and another had to have bone marrow transplanted but both still have very normal lifes. I have a cousin that is half hospice and she has had a very rough time now in her lungs. Sharon
  7. ABCDfamily

    ABCDfamily New Member

    Thank YOU Ladies for your support........it's what I need. Yes, I am scared and very depressed and I have informed my DR. I know myself well enough to know that I am not emotionally stable right now. I have questioned autoimmune diseases in the past.

    I have been to many DR's and have been to see an endocrnologist once. I have inquired several times about seeing a specialist and I have been told that there is no need because the baseline tests that my past DR's have ran have come back negative. It's my current DR. that said I need to see a Rheumy Specialist to rule out other things because the base line that the Primary's run are not adequate enough. All of these years I have been told just the opposite.

    MY OBGYN keeps telling me to get a mamogram and I have had three. My point is even my OBGYN never made sure to get my films.....(pause and back up) It is those same DR's that almost allowed me to go home after my daughter was born. I kept telling them I had a blood clot. It's a good thing I refused until they did the doppler. I did have a blood clot. Now back to the mamo. Good thing it's not breast cancer according to the Radiologist/DR that I spoke with but over the last 18 months the pain has gotten worse and my Primary DR. is now sending me back for yet another mamogram. Is it possible to have such breast pain with CFS/Fibro or Lupus?

    The reason I worried about my daughter is very complex. I had no idea I was involved with a scam artist/sociopath until I had a knock at the door right after the birth of my daughter and after the blood clot situation. The things I found out when I began researching were very alarming. He believed he Married into a family with money and anywhere your mind can go from reading this........it all happened. Talk about Lifetime TV. To all the Mom's out there I am sure you can relate when I say "the protection factor of our children is instinctual"

    I have been a fighter/survivor all of my life and it seems that I just don't have a lot of fight in me right now. I feel somehow that I am to blame as the one lady pointed out here. I feel guilty on many levels and had I of known any of this prior to my Marriage I would have waited and not put my hubby through this. He should not need to suffer in misery with me. I love him enough to let him out of this. I don't feel sorry for myself I feel guilty for what this is doing to my family. I'm depressed but not for the reasons you may think but more for my obligations that I am having difficulty meeting.

    It's funny really when you think about it. All of these years I thought I was a Smart woman. I look back now and realize just how stupid I was.

  8. ABCDfamily

    ABCDfamily New Member

    I forgot to ask all of you something. Were any of you depressed when going through a diagnosis?
  9. ABCDfamily

    ABCDfamily New Member

    I figure if I continue to reply to myself I will keep this on the board and you guys will respond.
  10. caroleye

    caroleye New Member

    I'm in my 60's, and was first dx w/CFIDS; then endometriosis, and several other auto-immune illnesses. It took them 15 years to dx my Lupus. And even then, one test would come out negative; the other elevated.

    The symptoms, for me, have been similar to all the auto-immune ones, and I haven't been able to tolerate their meds, and I'm not dead yet!! Ha!! Recent test came out negative again, but I have all the same symptoms.

    And I am fair skinned.

    Just don't think there's one answer to all of these, so don't be scared. Just know that there's a bunch of us out here, who may not be living the lives of 20 years olds, but still alive.

    LIGHT************carole
  11. ABCDfamily

    ABCDfamily New Member

    So it's safe to say that they may never give me a firm dignosis? I'm 37 and have been living in and out of illness my entire life.