I also experience this. The weakness/pain seems to wax and wane, however, it seems the pain is always there but to a lesser degree. I have not found anything to help at this time, but do take ibuprofen several times a day which seems to keep the severe pain away.

So sorry you are having aching joints. We are all different, and what helped me may or may not help you, but after I was diagnosed with Celiac disease my life changed. I encourage food allergy testing and celiac testing to be done prior to diet changes. That way you and your Dr will know for sure what food allergies and or food sensitivities you may have. I do encourage you to pursue diet changes. An elimination diet is a good way to start too. I hope you are able to get some relief.

i have had joint and muscle pain since childhood. it was discovered along with cvid i have RA and sjogren's. we do tend to get auto immune issues i would see a very good rheumo that has knowledge of cvid. my daughter with cvid also has many joint and muscle issues which tend to be better or worse. throughout my life things have been better at times and worse....i call them flares, same with my daughter.

I actually developed Poly Arthritis about a month before diagnosis literally overnight. I woke up one morning and couldn't open my hands. I had no warning signs. In the back of my mind I've always wondered if they would have diagnosed me earlier if it would have prevented the arthritis. That being said, infusions didn't help me with the pain at all. I take pain meds daily just so I can function (its in my hips). It does get worse at times. When my lung disease flares, I have extreme pain everywhere, its bizarre, but its not joint pain. In the winter, my arthritis is really bad, like now. My boss let me buy an electric throw blanket since we do not allow space heaters. There are lots of rheumatology meds, but my doc won't give them to me because they lower your immune system. My advice is "does the benefit outweigh the risk". The ONLY thing I have ever found that helped me was exercise. I hate exercising and was doing it to lose steroid weight but I noticed it cut down my pain meds by HALF. Thats a lot. I probably would have kept it up if it actually made me feel better energy wise but man its hard to get up at 4am :(

I was exercising like crazy, then I started to get so tired, it was like I couldn't do anything. I will force myself into ti more though. I normally fence, but I know that's not often enough during the course of the week to help out enough. Exercise and I have a love hate relationship. I prefer to play guitar and cook, but I think my body prefers to sweat :)

Haha Tina that's me too. I agree Exercise helps...yoga and swimming in particular are super helpful. Heat helps.I'm now in my 4th year dance and love it. :)

I love warm water exercise class. They are hard to find but these classes offer the best pain control I know. The other wonderful part of the classes is that almost everyone has arthritis and are extremely supportive of each other.

I know someone who did have fibromyalgia and she used a book called eat Right 4 Your Type... basically it looks at the blood types and where they originated from, and what foods were natural to that people. When we continuously eat outside those ingrained foods we produce an allergic/inflammatory response that taxes our systems and causes a stressed immune system and joint pain. For example, I am an A+. I am not supposed to eat much meat. If I eat it every day, my allergic response is chronic - however I can eat it once in awhile like three times a week and it has no effect - because it's cumulative. The diet plan in the book is therapeutic, meaning you can do it strictly for about ten-twelve weeks, and then you can start adding the other foods back in, on an occasional basis. The lady I know changes her entire life with this book - in the beginning she had so much pain she couldn't do any housework. By the sixth week her pain had lessened to where she could do her housework AND go for a walk to the corner. That was ten years ago. Now she goes to water aerobic classes for arthritis. As you can tell, I am deeply impressed by that book. I have done it myself for autoimmune reasons and was spared a splenectomy. That was about ten years ago too, and I've fallen off the wagon. I need to do it again myself.

I had aching joints too, so much so that I couldn't get through without painkillers. My immunologist increased my IgG and my joint pain disappeared entirely after about 2 months (I am on subQ so it takes a bit longer for my levels to respond to an increase in IgG). He told me that sore joints are quite common with CVID especially if our levels aren't high enough. Once I hit an overall IgG of about 1000 the joint pain stopped. He also explained to me that the IgG level/dose that you need to avoid infection is lower than that which is required to avoid autoimmune responses. Btw I sometimes get mild joint pain the day before my infusion but I can live with it, so I haven't bothered increasing my dose further. Good luck with it!

my igg has hovered around the 1200s for the past several yrs, i still have achy joints/muscles so not always a fix for everyone....

I will try to get in and talk with my immunologist and see if the dosage can be raised. I am going to keep exercising more and see if it helps me out. I drop things a lot more these days, and my hands feel weak quite often...has anyone experienced that as well?
My pain isn't just in my joints, it's in my shins, forearms, stomach....I feel like a voodoo doll some days :)
Thanks to everyone for the comments and advice. I have heard of Eat Right For Your Type, and I will get a copy of it, and see where that takes me as well.