Mother hood and autoimmune disease

I am new to this site, but I am finding it very helpful.  I actually wanted some advice on how to handle a situation.  I am 33 years old and was diagnosed with fibromyalgia when I was 20.  I have severe sleep and fatigue problems but managed very well with exercise until just recently.  I now have been diagnosed with IBS, Celiac, Ehlers-Danlos (severe joint hypermobility), endometriosis, spondylothesis and now osteoarthritis and Rhuematoid arthritis.  I desperately want to have a child, but everyone tells me it is unfair to me (as I am in too much pain to care for a child) and not fair to the child as they could develop any or all of these.  Sometimes I think they are right, but I really want to be a mom.  Just wondering how everyone feels about having a child knowing they have a high percentage  of developing these conditions. In my case the EDs was first and brought on all the others. There is a 50% chance of developing EDS if a parent has it. 

My significant other has lost compassion for my plight because I am always in pain and developing new dx every year. I am looking forward to having people to talk that know what I am going through.

 

Sweetkygirl,

Welcome! Oh boy, you have really got your hands full. Luckily, you have come to the right place to find people who understand. But how sad that your significant other has lost compassion - when you need it most. (It is hard for them, too, but much harder for us!!) I raised 3 kids with fibro & migraines. Your challenges might be overwhelming, but then again, where there's a will....do you have a good doctor you trust and can work with, and if so, what does s/he think?

I have a 21-yr-old daughter who I think may have fibro and also Ehlers-Danlos. Could you tell me something about your experience with it? She is super-flexible, and we always thought it was no big deal, but maybe not. (She hurt her knee pretty badly just by dancing this summer.)

Debbie

Debbie,

I went my childhood always knowing I was "double-jointed" but was never really diagnosed with EDS simply because I wasn't the most active child. I too danced and suffered from sprained ankles a lot. As I got older I began to work out hard, run and do martial arts. I was diagnosed with fibro in college and that prompted me to become more active. However, two months before my 30th birthday, I was told I had tendonitis in my knee and that my knee cap was strangely loose. I did PT (which doesn't help me at all) and then had a steroid shot. For a year, I felt good in my knee area. Then I had mono and my dormant fibro was reawakened and I have been miserable ever since. I had rotator cuff tendidnitis the next year and that is when they discovered the EDS. I have since sprained my ankles severely and now I am having artiritic/possible meniscus issues with my right knee.

Lucy, KY is beautiful! I love it here! I am a full time graduate student getting my masters is education in hopes of teaching high school english and I have been a nanny so I am prepared for the demands of children. Just don't know if my body can keep up. Last night I took a dose of Mobric and woke up in a lot less pain this morning.

Definitely sounds like me. I remember always struggling with gym class because of strange pains and of course my ankles. I swear the ER people knew us by our first names. the only part of me that isn't hypermobile are my hips. I would at least have her checked out. I was told many kids are hypermobile while they are growing but by adult hood they should grow out of it. I never did and it was the start of all my current issues. Had I known as a kid I would have not done so many physically demanding things that have aged my body even quicker. Getting her checked out would help prolong the damage as long as possible.

I am restricted to yoga, the bike, swimming and very light weights. I can walk my dog but must stop if my knees hurt ( and the usually do). I am not a person who likes to sit. I prefer to be active and working hard. It is frustrating being 33 and consequently not being able to hang with friends very often because I can't be out too late or my sleep cycle will be messed up. I can't eat at cookouts because I don't know when I will be glutenized and don't get me started on the fibro fog! However I will say a diet low in meat and inflammatory foods such as bread has helped tremendously with the IBS and the fibro fog.

I think I do understand why my BF is frustrated with me. In his shoes, it is a lot to take on, a woman with constant pain and restrictions and the possibility of having a child with the same problems. No wonder the poor guy is scared. I still wish he could walk in my shoes for one day.

I have to give kudos to women with small children and fibro. My oldest is 20 and youngest is 10 and I've been suffering for about 3 or 4 yrs with this. My hubby and I are babysitting my two yr old great nephew while is his parents are in field training exercies for the army - today is day 1 (they got here around 2 am). I am exhausted! And really thinking about getting my cane out. I'm not saying you should not have kids but I am saying it's alot more work when you have fibro.