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Common Variable Immune Deficiency Disorder & Fibromyalgia
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Suz1229 posted:
Hi, I'm new here and was dx this past year with CVID, a primary immune deficiency disorder which is rare, one in 50,000 people. I was dx with fibro 20 yrs. ago. Does anyone else on here have CVID and get intravenous gamma globulin infusions monthly or Sub-Q? Dr. P, in your opinion would CVID cause fibromyalgia? Has it been determined that fibro is an "autoimmune" disease? Thanks for your assistance.

SuzC
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angelldakota responded:
Hi SuzC... Your best bet to get Dr P to answer this is to copy it and put it in another post with "Dr P" in the subject line...

I am not knowledgeable in CVID or what it does to you... but I do know that I have alot of things wrong with me and they get active and so does my FM... I don't believe they caused my FM... but they trigger it... I believe that being ill, injured, traumatized physically or even mentally, are just a few things that may cause FM... but I am no expert and no scientist... lol... I just live with FM... And listen to my friends talk about their experiences...

One thing I can tell you... Even if no one here has CVID... We are all connected... We all live with the dragon... AKA FM... and you are not alone...

please come back and share with us how you have dealt with your FM for 20 years... and read the resources and tips to the right of this... also it is wise to have your vitamin d checked and you usually have to ask for the test... Dr's don't normally run it... Low vitamin D can make you hurt worse...

I hope I made sense here lol... it is 3 am and I just can't sleep but I am a bit in a FM fog lol... I am going to google CVID to see if I can understand it...

you take care... bless you... and have a good day...

oh yeh hun... the board is sorta quiet during the weekend... I hope you will paste it for Dr P so it can be brought to his attention easier...

bye now... luv... jan/angelldakota
 
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annette030 responded:
I have no problems with my immune system. I rarely get sick with colds, flu, infections, etc.

I am not aware of FMS being labeled as an autoimmune disorder.

I am sorry you were diagnosed with CVID, sounds terrible on top of FMS.

Take care, Annette
 
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An_199340 replied to angelldakota's response:
A CVID diagnosis is not th end of the world. I was diagnosed in 1982 and had over 300 IViG infusions.

I have had a successful career, marriage and two great kids, both of whom have CVID also.

Many CVID patients complain of fatigue although it is not a documented side effect. Most say that when they are on a high enough dosage of IViG much of the fatigue dissipates, although it may take several months of infusions. .

Good luck.
 
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markincleveland responded:
You may want to visit the immune Deficiency Foundation website, primaryimmune.org.
 
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RGJJ100 replied to An_199340's response:
Hello,
Your post caught my attention because Im in the process of getting dianognosed and based on my symptoms and long research, Im sure its CVID.

I also have little ones and my biggest fear was that a diagnosis of CVID would be the end...knowing that you were diagnosed so long ago gives me hope. I have so, so many symptoms especially with my lungs that Im so scared it will be terminal.


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