Awwww I'm a single mom to a 7 year old girl too! Yes, I feel she got a bum deal with me as a mom. I don't have the issues you do (major arthritis yes) but I have lung disease and have been partially bed ridden for 2 months now...i am living to work until they can figure out our next steps. And my daughter senses something is wrong because never in her life have I come home and went to bed every day for months on end....and we have no help.

All I have to say is don't beat yourself up too bad, hang in there because we HAVE to :)

First of all, Kelli and Tammy, your children are blessed to have you as parents. I am sending you both big hugs--you are both awesome.

Kelli, I am so sorry to hear that you are struggling. Please know that my love and prayers are heading your way.

Tammy, big hugs your way. I too have unexplained soft tissue damage. The tendons in my shoulders and ligaments in my knees are tearing and I have no idea why. Last week, I had a SLAP tear repair and bicep tendon repair in my left shoulder; the tendons in my wrist were inflamed and the ulnar nerve damaged, so I had a box release in my left wrist and the ulnar nerve repositioned, too. I found out that I also need to have this same triple header done on my right shoulder and arm, too. No injuries; just damage. I also have heart valve issues, too--to my uneducated mind, same tissue type. (You know, I should play the Lotto. God knows I won the genetic crap shoot...12 co-morbidities and still counting...) :-(

One doctor suggested in passing that it might be because I have been on steroids for lung issues and IBD.

love to you all, tina

Thank you both so much for the support! Kelli, I'm so sorry to hear that you are feeling so poorly. Huge hugs to you and I'll keep you in my prayers. Too bad we don't live near each other, our daughters could play together. :)

Tina, I'm sorry to hear about your struggles as well. It sucks constantly gettin injured with no idea why. Hugs and prayers your way too! I pray that this is your last surgery. I have heart issues too, but mine is with the lining of my heart. I'm on a low dose of steriods for that as well. I keep thinking in the back of my head that my soft tissue issues are due to that....

Thanks again ladies, you are both wonderful!

xoxo

Tammy

Hi there Tammy.
I also have joint/muscle issues...I get painful, swollen, stiff joints if I'm sick, or I exercise too hard. Some days I feel fine and I'm doing my thing in color guard/dance/working out...and other days (like today) i can barely walk or lift my arms above my head. I've thought for a while I have JRA, but I can't treat it...NSAIDS interact with my heart medicine/steroids and immune suppressors are obviously a bad idea.
Yeah, I have heart problems too. Atrial flutter/Supraventricular tachycardia and irregular blood pressure. I take low-dose aspirin and beta blockers and I'm okay most of the time. It's a complication of myocarditis when I was younger (I'm only 16 now though)...So, maybe it is the same? No one has made a connection, but my mom has brought it up a few times.
Hope you and yours enjoy the holiday, and welcome to the group.
Anna

I am so very sorry tyou are having such a rough time. It is so hard when you have young children. I can't even imagine! Myine are grown so I don't have that issue and my heart goes out to all of you who do.

You know maybe there is a connection between the orthopedic/muscular issues and CVID I had never thought about it before now. I have had 7 back surgeries. 3 of them were spinal fusions and I have had an SI fusion (Sacro-Iliac Fusion) and the other SI joint needs fused but there isn't enough bone to harvest because of osteopenia. I have osteopenia/osteoporosis (depends on the location what the severity is). I have had both knees have been replaced. I am only 58 yeaars old. I have a 20% curvature of my thoracic spine (kyphosis) due to the osteoporosis and I am hunching over already. Tghe doc tried physical therapy on me but it didn't work so they released me and said, "it is what it is." It seems like there just isn't too much they can do for us CVID'ers.

@Faith...I saw where you said your BP was irregular...so is mine...jumps all over the place. I never made the connection there either. I wonder how much of what is going on on my body is related to the CVID?

You are all amazing women and I applaud you for being so strong and just having the strength and resolve to get through each day. You are awesome! :-)

I have been on steroids many many times in my life due to ITP and low platelets, also have been on Antibiotics like Cipro and Levoquin through my life due to infections. I have AVN of the femur, multiple muscle and bone issues, tendonitis several times, neck muscle problems. Herniated disks,, etc etc etc.... These are side effects of prolonged exposure steroids and Quinolones. These drugs are harmful. Our endogenous steroids are just as harmful. We produce cortisol in response to stress and too much exposure to that one steroid causes long term damage to our bones and muscles. Bah. Thats all I have to say about that.

I find that very interesting! I always thought I inherited my degenerative bone disease from my Mother. It makes sense about the cortisol! I would have never thought of it I am loving this forum more and more all the time. I am learning so much about CVID that I never knew before. The pieces of the puzzle are coming together slowly but surely and finally starting to make sense and it feels so good not to feel alone anymore! :-)