Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
It's been so quiet here...thought I'd add a topic !!!
Anyone out there been diagnosed with Fibro ?
I have been on Hizentra for 2 years, low IgG..but for almost 5 years I have been looking for answers for major joint pain, pain that has progressed so much from when I started. I have modified my life, my work a lot. My docs thought Lupus but I just saw a rheumatologist who says fibro. I do get some fibro symptoms and the diagnosis sorta fits...for my symptoms the last 6 months or so. However, joint pain is my main issue. My doc put me on Lexapro which is supposed to kick in in a couple of weeks...instead I am in a major flare - knees, feet, ankles, elbows very painful.
I live in Canada but my last two trips to sunny US (San Diego in July, Az in February) brought on lots of pins & needles in my arms, legs, and more from being in the sun. Huh.
Anyway, just curious if anyone else got this diagnosis. It seems sort of a catch all one when they don't know what is wrong - ie. there is not test for fibro, rather other conditions are excluded.
Anyone out there been diagnosed with Fibro ?
I have been on Hizentra for 2 years, low IgG..but for almost 5 years I have been looking for answers for major joint pain, pain that has progressed so much from when I started. I have modified my life, my work a lot. My docs thought Lupus but I just saw a rheumatologist who says fibro. I do get some fibro symptoms and the diagnosis sorta fits...for my symptoms the last 6 months or so. However, joint pain is my main issue. My doc put me on Lexapro which is supposed to kick in in a couple of weeks...instead I am in a major flare - knees, feet, ankles, elbows very painful.
I live in Canada but my last two trips to sunny US (San Diego in July, Az in February) brought on lots of pins & needles in my arms, legs, and more from being in the sun. Huh.
Anyway, just curious if anyone else got this diagnosis. It seems sort of a catch all one when they don't know what is wrong - ie. there is not test for fibro, rather other conditions are excluded.
It's good to hear from you. I was diagnosed last year with Fibro through a Rheumatologist, but like you, I have trouble accepting a diagnosis that does not have any form of testing to confirm the diagnosis.
Before getting diagnosed with CVID, an Internist diagnosed me with Chronic Fatigue Syndrome and I knew it was something more and was persistent with finding out what was really wrong with me which lead to my diagnosis with CVID 21 months after onset.
My issue is the same as yours, major joint pain. I have major pain in all of my bones 24/7 and it really gets to me. Especially in my elbows, wrists, knuckles, hips and knees. I frequently wear tension bands on my elbows and wrist guards. In fact, googling joint pain lead me to this website 1 1/2 years ago.
I have not yet found a solution, but I have an appointment with a new Rheumatologist that is highly recommended by my new Immunologist who really understands CVID. I have needed to get a new team of doctors since I moved from beautiful Hermosa Beach, CA to Las Vegas.
As a side note, it may not have been the sun that increased the pain, but the change in altitude and climate (humidity) which I have found to be challenging going from sea level with humidity to high desert, over 2000 ft. elevation above sea level and a much drier area.
Hold your ground and be persistent until you find what will get you the relief you deserve.
I hope that somewhat helps.
Love and light,
Denise
My dr gave me anti-inflammatories n muscle relaxers.
Nothing else has been discussed.