Mother hood and autoimmune disease

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sweetkygirl
Regular Member


Date Joined Sep 2010
Total Posts : 29
   Posted 9/10/2010 4:43 PM (GMT -7)   
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.
 
 

sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 9/10/2010 7:02 PM (GMT -7)   
Hi sweet, and welcome to our fibro family, my heart goes out to you right now. I wish I could say that motherhood is a breeze, but it is hard to do when you are in alot of pain. I had 5 children while having fybro and it wasn't easy but I did it. I guess in the end it is going to be your choice no matter what other people tell you. It would be alot easier for you though if you have the total support of your significant other. No matter what you decide we will all be here to help you with any questions, venting or general support that you need. We have a great group here and I hope to here from you soon.
Gentle Hugs
Shirley
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 9/10/2010 7:31 PM (GMT -7)   
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
...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

Sera Smiles
Veteran Member


Date Joined Nov 2006
Total Posts : 671
   Posted 9/10/2010 8:37 PM (GMT -7)   
Hi KYgirl! I love Kentucky- its one of the prettiest states I've ever visited. I can appreciate your desire to be a mother! Perhaps you can do some volunteering with young children, so you can learn about their needs and energy level :) and build your stamina. Good luck with your quest and remember to keep your health a priority.
All you really need is love, but a little chocolate now and then doesn't hurt.
Lucy Van Pelt

Supplements: Protandim, Omega 3s, Vit B Complex, Vit D
Meds: Ultram, Toprol, Cymbalta, Amitriptyline, Trazadone

sweetkygirl
Regular Member


Date Joined Sep 2010
Total Posts : 29
   Posted 9/11/2010 5:11 AM (GMT -7)   
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.

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 9/11/2010 9:29 AM (GMT -7)   
Sweetkygirl,

Thank you for giving me some idea about EDS...I'm beginning to really wonder about my daughter. I hope you don't mind reading some background information for possible red flags? From what you've said, it sounds like a pretty significant problem...and I feel for you!

As a baby, my daughter didn't stiffen her legs when we'd hold her up, like the other kids - they just stayed limp. Doctor said no problem. At about 6, she fell on a ski slope and, according to my husband, her leg turned completely around the wrong way!..then she got up and skiied away. He also accidentally sat on her hand and it bent backwards all the way to her arm. We just thought how lucky that these things never hurt her (and how funny that she could brush her hair with her foot and fold herself practically in half to hide in the closet!)

She was never fast or strong like her sister. She rolled her ankles a lot, and fell down on the basketball court at the least shove, but again, the doctor said no problem. She's now a junior in college, and when she jogs or exercises hard she often gets bad stomach cramps, which is mystifying. This summer, when she injured her knee, she was just dancing normally in a club, and suddenly had to leave the floor in agony, wrapping the knee for a couple of weeks.

High school English - you are brave! I'm a sub and just teach elementary - those big kids intimidate me too much!! Incidentally, my parents were both English teachers. Thanks again.

Debbie
...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

sweetkygirl
Regular Member


Date Joined Sep 2010
Total Posts : 29
   Posted 9/11/2010 10:52 AM (GMT -7)   
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.

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 9/11/2010 2:41 PM (GMT -7)   
Sweetkygirl,

Thanks again. I will definitely make sure she gets checked out. Doesn't it drive you crazy that if someone had taken the time to look into all your symptoms so much pain could have been avoided??!

I hate the passive lifestyle, too. (I was about your age when it was foisted on me because of fibro. At 55, I don't feel as out of sync with my peers but I still resent it.) Sure hope you can juggle everything - good luck.

Debbie
...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

saintsfan
Regular Member


Date Joined Aug 2010
Total Posts : 171
   Posted 9/11/2010 3:34 PM (GMT -7)   
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.
Dx: Fibro, HTN, Depression, IBS, Lupus like symptoms

"The Lord is close to the broken hearted and He saves those whose spirits have been crushed" Psalm 34:18

RedDiane
Veteran Member


Date Joined Jun 2007
Total Posts : 906
   Posted 9/11/2010 7:47 PM (GMT -7)   
I got fibro when my oldest son was 1. Except they thought I had lupus and wouldn't live to see him grow up. Then I had another son. This was 26 years ago. My fibro was not as bad as it is now, although I just found out I have a 7 on the pain scale everyday, but I just ignore it. No pain meds have ever worked for me, and I tried them all. I don't think I had any real trouble being a mom, I just loved it. Of course, I did quit working to be a stay at home mom. I also had great support from my DH. Sometimes, I just walked out the door when he walked in and he had to deal. I couldn't have a young child to take full-time care of now, but I am so glad I did have my two sons. Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea
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