Several of us have fibro. However I would not accept a diagnosis of fibro unless it is from a rhumetologist, as there are very specific criteria that need to be met.

A lot of doctors are willing to through out the diagnosis, as a "garbage can" diagnosis. It needs to be made by someone who is qualified.

Exhaustion can be from so many things and not really the main symptom.

Hope that helps.

Hi Peggy,

Yes, fatigue and the feeling that something has taken the Wind out of your Sails is normal. My analogy is I am no longer the Energizer Bunny I once was. After, I got really ill in 02/09, I just never recovered, that is what brought my Pulmonary Specialist to discover my low IgG level then referring me to an Immunologist. For 4 yrs, I have stated, I'm tired of being tired......

Do you know your IgG levels? I am in the 880's and my Immunologist stated that I probably will not have more energy until I get above the 1000's.

Like Dianna mentioned, your fatigue can be a combination of your CVID, your medication and everything that you have going on with you currently. I also, think the adjustment to your new home along with needing to find new docs, etc. can be very draining and add to the fatigue.

Have you read The Spoon Theory written by Christine Miserandino, although, she talks about Lupus, it puts what we have into perspective.

I also, have a few other things that contribute to my fatigue, including Hashimoto's, in which my immune system is attacking my thyroid. So, with my thyroid under functioning, fatigue is a common symptom. I was diagnosed in 11/09 with CFS, but felt the Internist just diagnosed me not knowing what else to test for. A year later, I was diagnosed with CVID and consider that my correct diagnoses.

Light and Love,

Denise

I don't have chronic fatigue or fibro, but I do have Hemochromatosis which causes fatigue and lots of pain with the arthritis. I am finding out that many of us with CVID have lots of other ailments that were caused by this and others that aren't.

So we are just a bunch of Gods SPECIAL people who need extra care..

That is why I think God has put so many wonderful in my life like the great people on this site, my husband and my kids..

Let us know what your counselor says..
Many Hugs
Cheryl

Funny my Patient Advacate and I just spoke of this today. Yep its part of it and any Immune Deficiency can cause it. When your immune system is comprromised it has to work harder just to fight every day stuff. She told me it was totally normal. Its one of my complaints to. Mine gets so bad and I dont have Fibro. One night I didnt have the strength to cut a pizza.. That is jacked up. I was going to take it to my rrrhumo doc. I have had luck with complex b vitamins in the past giving me more energy. Also make sure your vitamin D is ok.. HuGS

Fatigue, not necessarily CFS, is a very common symptom of CVID. I suffered for YEARS with fatigue even though I had been on treatment. Some of us can get double or triple whammied with OTHER diagnosis in addition to CVID. For me, its lung disease. It wasn't until I got on optimal treatment that my fatigue improved. That "optimal" is different for everyone. For me, on IVIG, my levels just could not get high enough and the "peaks and valley" or trough was just too difficult. It wasn't until I got subq and my levels were over 1000 that my fatigue gradually improved. Now my levels range between 1300-1600 and I feel pretty good most of the time. Normal? No...Manageable? Absolutely

Thats what I'm trying to figure out. Whether the CVID is what cause the overwhelming exhaustion and pain. Or do I really have fibro and cfs along with cvid.
So I'm in a holding pattern until I see what the IVIG treatments do or don't do. I'm excited, inpatient, apprehensive and hopeful to see.

That was my original diagnosis, Peggy, back in 1989 and I have been to so many CFS docs, etc. I have thought for 25 years that I have CFS. I am not sure. I think I do have something with CFS, I don't think CVID is everything. When you have overlapping illnesses, it's hard to know. Fibro causes fatigue, too, which I also have.

But yeah, I am not sure whether to be over at the CFS website, or here. I still have major fatigue but do hope it will improve, because it became really bad in the last four years, so I am thinking there is a chance it could turn around with the IGG treatment.

I've had an autoimmune disorder all my life, diagnosed cvid 7 years ago, ivig every 3 weeks, the last 2 years the chronic fatigue is becoming disabling, is this normal, any suggestions. Work is becoming increasingly difficult, please help!

How does one justify increasing IGG levels to 1300? Mine troughs on subQ gammagard are 1150., but I'm still too fatigued to lead a normal life. I also just got a bronchitis and a sinus injection after being in gammagard for 6 months, so I've been sick for 2 weeks and antibiotics. I would like to go up on my dose of gammagard to see if it will alleviate the remainder of the fatigue. I'm leaving my job and taking a big step down in my career because of fatigue, but I wish I didn't have to.
I take hundreds of dollars of quality vitamins a month, and have an impeccable diet.
Also have fibromyalgia and endometriosis, and mild asthma. But I could always push through the fatigue in the past. But now pushing landed me with a bronchitis and sinusitis.
Does anyone do vitamin B injections or anything else to alleviate fatigue???
Thank you

I was tired most of the time and my joints and muscles hurt on and off. I have hypogammaglobulinemia (low levels of IGA, IGG, IGM). I was exhausted just going up the stairs at home. I felt like I was in slow motion all the time. Had to take lots of naps. Recently I started Cuvitru infusions Sub Q and my energy has improved and less aches and pains.