CVID and chronic pain

[bobkitten]

I am wondering if there are other's out there with CVID (Common Variable Immune Deficiency) that suffer with chronic pain.  My pain level averages about a 7 on a scale of 1-10.  Sometimes it feels like a 15!  I live with it constantly.  I have osteoarthritis and osteopenia, too.  The pain is systemic.  It feels like every cell in my body hurts.  It's so hard to move around and be functional.  Also, does anyone else get headaches after their IVIg infusions?  I get one almost every time.  I have one usually for 2-3 days after every infusion.  I also feel an increase in pain each time.  I would appreciate any reply.  God bless you all.

[JT0105]

Yes, lots of pain in arms and hands. Sometimes in legs and feet. One knee at a time often hurts too. Fatigue is a given most days. My lungs are now filling with granulomas, so this may be fatigue reason? Fevers daily and sed rate averages 50. I am a 38year old man who makes no igg3. 5 pneumonias in a year and a half, all new each time according to ct scans. Only had two ivigs so far with flu like side effects the day of and the day after. No pneumonias in two months now though. Still not sure Drs found everything wrong.

[Pammy5511]

I can relate with both of you, about the pain.Does it feel like either one of have flares?  I've also been diagnosed with osteoarthritis and osteopenia, but have every symptom of rheumatoid.  I've been told fibromyalgia also, but I don't have but a few "tender points." It's because of the times that I have felt like someone has beaten the crap out of me. The nurse who does the infusion said that my knuckles hurting like they do, does not sound like osteo; I know that a person can have both.

[Laurens13Zebras]

I have CVID that took eighteen years from just physical onset to get properly diagnosed. I'm thirty eight and just had my third round of IVIG. I HAVE...before my physical tearing I call it been a nearly professional athlete and I didn't see fit to mention the chronic infection life I can go back to recall about age ten. My dad said we had prefect noses cute and Basque therefore small nasal passages....Who knew..I have every collection of degenerative disease in my spine, full blown literal my wheel of disease none of which made sense and the very real creature one day they'll nab also as a central nervous system autoimmunity FIBROMYALGIA. I'M disgusted the FDA has stated opiate relief so yay I get the six on my typical day on the pain scale five if I'm really swinging and ten with flares and fevers galore and tears...I have been laughed at even asking one M.D.along the way if in fact I was going insane...did that physically hurt? My body has been without its own defense therefore invaded then turned against me it's very owner. I have type II bipolar disorder and anxiety so that on my chart of total honesty and nothing less has also been a massive roadblock to my correct diagnosis and the prognosis is yet to be unveiled. I have three entirely different experiences with the life-long treatment 35grams of my IG chosen according to the many created by my specialist and I'm finally in the best hands of really a team I created here in the medical mecca unknown which is....San Antonio, Texas!!! Here we actually have if there could be such a thing "Dr. House" and he's become a great friend and oh after eighteen years yes he saw me twice did two labs a vaccine and I actually am pretty damn smart the gift of being touched by fire and curse for memorizing everything I had to read along my journey from locked out for insurance to thrown cash darts at guesses to finally having insurance then losing gaining etc and all the while we as patients truly wonder if we're crazy. You're wearing scrubs....oooh that means you're holy...um NO actually it means you can't feel it you don't live it you don't care unless it touches you not your loved ones just you...so say goodbye to family and the friends that run just let go stop harming yourself like I did expecting a new sudden wave of love and support because so sick many times to the point of not even walking well,I myself never stop serving others and stay there in that state everyone.

Did you know the awareness ribbon of CVID is a zebra?

That's right you're a zebra not some idiot who created a saying that kills people delays and subjects us to massive humiliation "if you hear horse hooves don't go looking for zebra."

Hello. I'm a zebra and those folks also tell people despite having St. Judes that "you're too young to have cancer" also a lethal unfathomable belief.

You'll need to learn to fire the **** outta the docs who are not highly vested in their education and those who stay current. I'm sorry sub par wasted many of my years and you have to let it all rinse off your feathers so to say and be a duck or sink.

FIBROMYALGIA alone causes twenty eight percent of suicides in the USA currently. But don't worry...I've arrived on the scene and I'll be advocating for you and subjugation I'll handle for me because I know more than many simply because I live it and I'm a humble servant but not a damn doormat. Plus I like myself.

Before you do anything else, stop reading and go look into your eyes in the mirror. Say to yourself out loud...I like me. I am not defined by illness but I am surviving the conditions known or unknown by a baby medical community that only a bit over one hundred years ago killed most women birthing and guess how?

By not washing their hands.

So we're dealing with real rocket scientists here woohoo.

I have a ratio of my experience that pretty much even if they didn't nail the central cause you're called crazy for as you seek it when strong give up take the meds when you feel well, I'm just a lemon until you feel like NO there's surely an answer and I don't give a rip who thinks what about me. I have no idea how many cycles of that I've gone through but the final push wasn't even my own and it was finally THE central cause of why I look like a nut job filling out every box in a new patient intake sheet.

My boxes and check marks I thought were significant well...they were!

For lunch break laughter and they can line up and blow me right? I'm more concerned with patients less fierce and direct than myself going home after being the butt of that final round of jokes and killed themselves. Oh that hurts my soul and I'll truly be coming out like a lion to stand up for us zebras and I'm sure we'll all find how many more there are and still find ways to tailor our lives around the unique and individual ways this primary disease/genetic flaw has stripped so much from us. It's not so funny for us right?

So, meanwhile who knows if I'm allowed to give out an email I made strictly to enlist my fellow zebras and march ahead together becoming the family many of us lose and those friends who run because we couldn't go to the party anymore.

That's too bad because hey...

We're the party. I have no doubt in that and no ambition greater; next to being a black belt mother,then to gather our zebra farm and herd us into a positive den to heal and have the love we deserve. But first things first...hard too...gotta loose the chip we truly deserved to have on our shoulder but know what? Nah give it back or hand it over to the idiots who didn't catch you or know you or care enough to send you to a smarter colleague...those are the losers not us.

We're rare GORGEOUS ZEBRAS and everything is going to be ok when we create our home and join together but not to commiserate, let's waist no time with that. Let's comfort and encourage those still entirely run down and link arms to be herd lol get it?

Tuesdaylauren13.  @   gmail. com

String all that together any eyes who arrive on my tiny first post as I'm about to literally be in television, you'll see....I don't back down. You don't either!

I don't have the solution beyond the certainty that we need one another. We'll then go from there kids.

Please write me and know many hands make light of this beast of burden....let's focus on becoming the family many of us lose along the harrowing journey to get the elusive non existent central cause without accepting the stamp of humiliation. I have decided in the great wise words of Clark W. Griswold that those in our way should kiss your ***, kiss his ***, kiss their ***, happy Hanukkah...

And Merry Christmas beautiful ZEBRAS!2017 is the year of our reckoning and gaining back what's been stripped and instead learning about our zebra stripes and that's far different from strips....

Truly,
Tuesday Lauren

I hope to hear from everyone!

Hope has handles so hang on tight

[TheLightSeeker]

Tuesday Lauren, this is an old thread-
over 5 years old and all the people involved, only posted once and have never posted again in any of the MedHelp forums!
And now your post sits at the bottom of
this thread.
I'm not sure this is the best way to reach
CVID patients.
Anyway, best wishes!
Niko

[hurtingmom]

I have high levels of pain too with my CVID.  They try to claim fibromyalgia but it just doesn't fit.  I used to get the headaches after my infusion but now the nurse gives me 50mg IV benadryl, IV fluids during the infusion and slowed down the infusion rate just a little and no more problems afterwards.