Im sorry your having a bad go of it with the pain. I have had chronic pain for years.
I don't know about the driving part, although I find sitting in the same position aggravates my hips, so it would make sense that being in a car in a fix position would aggravate things.

I have had new joint pain the past 3 months and the chronic pain(bad fibro) I have had has increase also.

My immuno told me he felt the joint stuff was from the cvid. I will say it has clammed down a bit. I don't know if it has been the ivig or perhaps part of my many infections. My overall body pain increased also. My SED rate and CRP are both very elevated, indicating a lot of inflammation.

I have an appointment with a rheumy to check out the joint new joint pain and increased "fibro" pain.

My pain is not revealed by any over the counter pain meds. I need the hard stuff the chronic pain had been getting worse for a good 6 mos and then like I said the joint pain a bit over 3 mos. My knees have been the worst and I mean through the roof. Even after taking oxycodone, I would have break through knee pain with in 2 hours.
I think with all my infections, it got in my joints.

Weather changes seem to exacerbate almost everything with me, including pain. Especially big changes. I also think altitude contributes.

I know I haven't been able to help much, but wanted to let you know I understand how bad it is.

Im sure others on the board can be more helpful. Hang in there and I am glad you are getting in to see the doctor, not only to get to the bottom of . But to give you some much needed pain relief, as it is very wearing and exhausting. I am also really moody when in pain, Im best left alone. Take care and I hope you get answers soon.
Dianna

Hey Northern friend ....This is what I am battling at the moment . Like a ton of bricks it hit every joint...knees wrists elbows, ankles ... and stiffness, Even my ribs seem stiff ... sitting and trying to get up is hard because my body is in stiff mode .When I get flares like this, it gets my breathing as well, and that horrible cough re surfaces as well. Extremely exhausted.. I cancelled all plans for tomorrow, because I just do not have the energy

It is so funny how one day can be pretty good , and in a matter of a few hours it can change . The cold on my legs bothers me soo much --- tingling sensations ... and they feel like they are swelling...mostly above my knees and hands swell and the inside of my elbows

Stair climbing the most I can dio today is 3 steps at a time , no muscle and what a challenge , between trying to get up them and my beathing . The gym I thought was helping , but again It feels real good when the body is working but a flare hits and it is like you never excercised a day , and have to start all over getting flexible with the joints again, and then the pool becomes your best friend and not the bikes.

We have had a very cold spell here, minus 30 c tonight and the rest of the week cold and I know it affects my joints . I do much better in the warm weather . Phonex here I come :) Lets go Nortthern :)

Dr wants to see me in three months this time , but has yet given treatment , other than suggested voltaren and it has done nothing ...hasn't touched the pain. Celebrex helped but it has a lot of side effects and he told me with my heart and bp I should not take it . I am about ready to scream if I have to deal with this much longer ...at least they should try something ---something is better than nothing!!!

I hope your internist can help find answers ( perhaps fluid from the joints could be analized ? Allergy?

Hizentra vivaglobin ( seemed to aggravate my pain , but I think it was due to the histamine dump ) and/or maybe it was trying to fight off an infection in those joints? who knows what this is, but I do feel for you ....it really is hard to take
am also watching food sources that could be the trigger .

Hope you feel better soon ....Northern
Let us know how the intern doc goes

NorthernElf,

I am all too familiar with your pain. Joint pain is a common condition of CVID, but I believe it is time for you to see a Rheumatologist to see if you have acquired an Autoimmune disease, which is also par for the course with CVID.

Wishing positive thoughts and prayers for energy and that you do not get sick again. I was ill all of January and I am still trying to get the little energy I have back.

Denise

Hi Northern Elf,
I have joint pain too and am going to the rheumatologist towards the end of May. My wrists and knees are the worst, but my elbows, shoulders and ankles don't feel too great either. I also drop things often, especially if they are the slightest bit heavy or awkward. I switched to non childproof lids for my prescriptions because I am unable to open the others. Long drives are awful. I do not drive due to health problems and I find myself squirming a lot during car rides. They not only increase pain but stiffness too. Subq has made a tremendous difference in my pain. I couldn't sleep due to the pain before and now I can. It has brought my winter pain about down to what it is in the summer. That's a huge difference. I don't travel to different elevations, so I can't speak for that. Cold weather, rain and snow make me hurt a lot worse. This winter has been much colder than we are accustomed to in my area and it has been rough on me. I take Celebrex for pain and it has helped tremendously. I didn't realize how difficult it was to do things until it wasn't as difficult anymore. I don't hear the Rice Krispies when go up and down the stairs and my other joints no longer pop all the time. It has helped with the stiffness too. Tylenol, Ibuprofen, naproxen have never touched it. Lortab brought some relief, but it made me feel dopey. Prednisone helps a lot, but I only use it for my lungs when it's absolutely necessary. I hate it, but it helps. The electric blanket set on low is helpful too. I hope you get some answers and much needed relief soon.
Hugs,
Ashlee

Hi there,

Joint pain it a VERY common side effect of CVID (poly arthritis or arthritis in 5 or more places). I developed it literally overnight at 37 yrs old right right before I was diagnosed. My experience with it was that treatment did not help all that much...or so I thought. What I found to be was I was not on "optimal treatment". I was underdosed at 27 grams a month IVIG at the time. It did get better when i switched to subq 3 years later but it wasn't great (it got better because by default your dose is increased usually). Then I had another dose increase due to sinus infections and it got better and then in July I had an additional dose increase and my pain is super controlled with typically just one pain pill per day. Things will aggravate it like you said driving for long distances (they actually sell a mat that plugs into the cigarette lighter that you can sit on and it heats up if you don't have heated seats). Too much walking, too much cleaning, etc. So I guess my lesson here is even if you have good infection control you may need a skosh more to help with you pain. I was at 10grams and had a few sinus infections and my levels were awesome at 1300 when I asked for my last dose increase...and it helped!

Yes, this is what I am battling also. In fact, ever since my last IVIG treatment, my pain has been through the roof. I can only say that I know how you are doing. I can't drive long periods anymore. I used to drive 7 hours to Vermont, but I can't anymore. My fingers hurt and legs and things that I didn't even know could hurt, hurt!

You are not alone, it seems most of us have major joint pain or fibro or some kind of pain. Mine started before IVIG. And I had it before the diagnosis.

Hi Holly, I don't have your experience with painkke that so I can't offer any answers to your questions. I am glad you are seeing an internist and think even a Rheumatologist might be a good consideration as well. Saying prayers for you and this pain getting under control. - Zen

Yes pain seems to be a part of cvid. Many of us have diagnosis on top of cvid related to pain, Fibro, cfs, athro. So its a question of what came first. It stands to reason that our bodies have inflammation that we can't fight off.
I certainly can relate to the pain as many other here have already said. Finding what will work is difficult. Nothing over the counter works for me. Hydrocodone does help temporarily and not for long periods. Use it as a last resort to give myself a break when I can't stand it any longer. Mostly at bed time so that I can lay and sleep. Otherwise the pain can make it difficult. My doctor is paranoid that I will become addicted so he limits my daily dosages. I don't want to become addicted either.
Just in the last couple of weeks have I received some relief for pain. I had steroid shots put in my shoulders and neck and that has helped. But for how long who knows. I also have gotten a prescription for celebrex to try for a couple of weeks. Haven't started yet due to stomach issues going on. Weather and movement definitely makes the pain worse for me. Heat does help some. Don't have to do mountain passes and haven't taken a care trip for long time due to not having the energy to even ride. I think that pain control is something that all of us struggle with. I think what Kelli said about getting your iggies up more would be a good thing to try. Just know that you aren't alone and we feel you pain. Literally. Wishing you the best from the hills of the Ozarks, mo

Ankles, knees and hips for me. Ibuprofen helps to a point. Sitting in a car for long periods of time causes pain and stiffness...I have to stand outside the car to get my legs back...or I'd probably be on my knees on the ground. This winter has been too cold and too long in the negative temperatures for me. I have not started on IVIG. I hope you are doing better. Warm bathes help me.

Thanks for all the replies. I seem to be over the worst of it but I still feel like an old lady this morning !

Sometimes after the worst of the joint pain I feel like all the tendons in my hands & feet are strained, muscles too...it boggles my mind that xrays show NOTHING...that I can have all this pain and feel like crap and a scan shows absolutely nothing.

I went from 5 2g vials of Hizentra to 6 a little over a month ago & thought it helped...now I am not sure, maybe I was just lucky. Grumble grumble grumble....a guess a life of pain is what we're in for ?!?!?!??!?!??!

Hi Northernelf!

I have such similar issues with tendons and arthralgias and stiffness and pain! Yikes! I was initially diagnosed with SLE and shortly after CVID, I could not live without a good Rheumatologist who understands both sides of the cells!! It is very hard when when system is being given the immunoglobulins and the other is fighting it!! So. I completely empathize and feel for your pain!!

Be wellish! Cheers
Andrea