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Discussion Starter · #1 ·
Hi all , was diagnosed with fibro 4 years ago, and now after two years of rashes after exposure to the sun they seem to think i have lupus. I gave birth to my 3rd child 7 months ago and was wondering whether being pregnant with lupus will cause her any to have any problems. Also my 15 year old is complaining of muscle pain! Are my children predisposed to any of the conditions that i have. I am adopted so do not know much about my family history , however the little i do know is as follows: my natural grandfather was severely disabled with rheumatoid arthritis and my natural grandmother had kidney problems and was on dyalisis for years ,when she finally passed away due to kidney failure. I am concerned that it may be hereditary, can anyone shed some light on this for me please?
 

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Hello Mumof3and welcome!

I'm sorry to hear what brings you here.

Being pregnant when one has lupus doesn't affect the baby. It can, sometimes, lead to more diffciult pregnancies, especially for those who suffer from another condition, APS, along with their lupus.

It is very difficult to say to what extent family history is linked to lupus. There is definitely a genetic element or predisposition but it is not the most common "cause" of lupus. I say cause like that because that's the whole point, no-one really does know what causes lupus.

I personally do have a family history of autoimmune disorders. It made me more aware of what was going on and helped me to get a diagnosis (though that still included a lot of pushing). I got treatment a lot earlier than my Mum or her mother which makes a huge difference. Despite her late treatment my Mum is a pretty "healthy" 70 year old. She was never put on some of the newer drugs that we are fortunate enough to have now. Although there is not yet a cure for lupus, the treatment provided today will, for most people, make a big difference to their life.

Worrying about whether or not your children may have a predispostion will certainly not help. It is helpful to be aware of what you have (if it turns out to be lupus) and keep an eye on things.
The genetic side of this in my family only affects the girls, so far, all the men (and there are a lot) are right as rain.

I hope you enjoy being here with us and find this site as wonderful as I have.
bye for now,
Katharine
 

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Welcome to the forum !

Sorry about your diagnosis though and I hope your lupus won't affect you badly. When you start on medicines you could well be feeling much better within a few months. Start finding out about your own case of lupus by getting test results and a good basic knowledge. That way it doesn't seem so bad and you can discuss better with your doctors.

I have nothing to add about the familial predisposition that Katherine mentions. Not even both identical twins necessarily develop lupus so it definitely isn't hereditary in the usual sense. I feel sure that the likelihood (5%-10%) can't be greater than that of anything else befalling our children.
I think we all keep a very close eye on them but one thing is sure, we aren't going to brush off and dismiss any health complaints as happened to so many of us
It's a question of finding a fine balance between reasonable concern and undue unhealthy anxiety that, to be honest, children can take advantage of. See if in fact behaviours are very different if the young person stops favourite activities has difficulty with normal physical activities goes off food sleeps a lot and so on. Of course it's tough with teenagers who often do have odd behaviours despite perfect health !

I hope you'll find the forum very useful. Just let us know how we can help you

Bye for now :)

Clare
 

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Dear Mum of Three, Clare has given you good advice. I have Lupus, so does my Daughter but I could certainly tell she had problems as she is very limited in what she can do. Wakes in pain, has to cancel things she was looking forward to.
You will know if there is a big problem, but please don't worry too much.
x Lola
 

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Hi mumof3,

Welcome to The Lupus Site. I am glad that you have found us. This is a great place for support, encouragement and information. What medications have your doctors started you on?

I wonder if your teenager is responding to seeing you being ill for so many years now. I know that my son became overly concerned that every little thing he did could cause the most severe reactions. We talked through his being too focused on things going wrong in his body and he has truly gotten much better about it. I am not saying this is what is happening with your daughter just that it is a possibility.

Does your daughter know about your Fibro and Lupus? Sometimes we keep things from our children thinking we are protecting them, only they over hear bits and pieces of conversations and begin to imagine the worst for us. For this reason we have taken the stance of telling our son what is wrong with my body, enough for him to know without burdening him with details.

Is your daughter in overdrive to help you out? Is she in a big growing spurt? My son's muscles hurt some when he is in a major growth period. Is something going on at school? I am trying to say that your daughters muscle aches could be from other areas. We have a tendency to jump to the worst possible scenario, I think that is natural for us mothers.

There is no history of auto-immune disease in my family and yet I have it lock, stock and barrel. They still don't know what triggers lupus and other related diseases.

Take care,
Karen
 

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Discussion Starter · #6 ·
Thanks all for the welcome. At the moment I am on cocodamol 30/500 and fluoxetine. am going for session with light machine soon. Just want a final diadnosis so that i know what to expect. My daughter is15 and complains alot about aches, she has given up kayaking as she said she felt she didnt have the strength. I do not want to take her to the doctor unnesicerily- thinki spelt that wrong- brain fog-lol- as they have enough to deal with in listening to all my complaints. but i also want to make sure that she is ok! sometimes i dont know what to do for the best.Mandy.
 

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Hi Mandy and welcome :)

I'm just wondering about this light machine could you explain a bit more please?

love
Lily
 

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Discussion Starter · #8 ·
Hi Lily,
yes, they are going to expose spots of skin on my back to different exposures of sunlight through a machine, I will then have to go back the next day to see how my skin has reacted. I don't know why they are doing this, but the doctor did say that my skin is severely affected, so they need to find out what spectrum of rays I react to.
 

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Interesting and rather curious. Perahps they are doing special investigative studies. Such tests rarely seem to have any practical value since we have to protect ourselves all the same. I sure hope they will start you on medicines very soon which should help a lot with your skin problems.

Cheers
Clare
 
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