Neck problems #lupus #ra #stillsdisease

My neck has been bothering me for a few months, but it’s been especially bad this past month. I’ve had some arthritic flare that makes me have headaches that make my neck, jaw, teeth, and nasal passages hurt. I get vertigo when I look down with my neck. It’s been going on for the same amount of time as my neck pain, and is definitely related, because when the pain is bad, so is the vertigo. My neurologist insists it could be a problem with my eyes but I don’t get vertigo when I look down with my eyes, I get it from bending my neck downward. The pain and vertigo have been pretty difficult to deal with. I got vertigo from looking down at records at a record store, and I had to leave. I get it at the library when I’m looking down browsing books. It’s really hard to be on the computer, and I definitely can’t look down at a book. When I get my infusions, I get bored because I can’t look down to read. I lose my balance sometimes because of it. I haven’t fallen yet but I worry about it.

I know the vertigo is partly related to my neck pain because when I wear a neck brace, it makes it feel better. Some doctors believe you can get cervical vertigo, inflammation in your neck that presses on nerves and makes you dizzy. That’s how it feels to me.

I can’t wear the neck brace all the time because it makes my back and jaw hurt.

It’s hard to do stuff when you’re all wobbly. Sometimes I catch myself “holding on” like the room is spinning. It makes me feel lightheaded and it’s been especially hard to concentrate lately. It’s also been hot here which seems to make it worse.

Sometimes walking makes it feel a little better. I think sitting is the worst for it. I usually feel better if I can lie in bed on my side.

I have the headaches with it, and those by themselves are bad enough. I’ve had a lot of nasal pain lately, which could be a side effect of the Actemra. Sometimes it’s impossible to find a comfortable position to be in.

I’m pretty tired of the pain and the spins. I have it every day, for most of the day. Right now I’m kinda just doing the wait-and-see-if-the-actemra-works thumb twiddle.

I’m bored sometimes. You don’t realize how many things require looking down until you can’t. I want to do some painting and drawing. I tried to crochet yesterday. I can play video games alright despite the vertigo, as long as I prop myself up a certain way. I can watch TV usually. I’m on the computer less. Doing anything for too long can be bothersome. I’m trying not to get too frustrated about it. Some days are better than others.

Some of my other joints are flaring too. My feet are bothering me a lot. They ache and they get a fever rash that really makes my skin burn. My knees are bothersome too. My hips have a fever most of the time. I have some skin discomfort sometimes. I still have the daily fevers which bothers me whenever the ibuprofen wears off, which is morning, 4pm, and before bed. Sometimes they bother me even when the ibuprofen hasn’t worn off. Summer isn’t helping either.

My power was out for a couple hours today. It made the house hotter than usual. A water pipe broke and flooded one of those sidewalk grates that houses electrical stuff. These guys had to get out all the water with a vacuum thing. When the power went out, my house went dead quiet, and it scared my dog and he ran outside. He wouldn’t come in for a while. I sat outside for a while just to be in the cooler air. Everything is fine now. I hope it doesn’t go out in the night because I won’t be able to sleep.

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6 Comments

  1. Hello my name is Chelsea. And I also deal with a lot of pain with my lupus. Here is two things I take on a daily basis that tend to help me with my pain. Flaxseed oil six a day and I take glucosamine three times a day. Hope this helps. And I’m also wondering if you would be interested in writing something for my blog. The blog is called lupus my invisible companion. I hope to hear from you.

  2. Your vertigo might be caused by your blood not being pumped back up from your legs. When you’re sitting down, try to adjust the seat all the way to the lowest position, cross you legs onto the seat, or put your feet up on the desk – this might make things better. If sodium isn’t contraindicated in your diet by your physician, I might try to incorporate a little more salt and fluids into your diet. Does your blood pressure fluctuate a lot? Hang in there~

    • Thank you, good point. When I am sitting, my feet are always up. I’ve had to eat a low salt diet because of High BP. My BP is regulated pretty well with medication but salt still makes it shoot up. I noticed when I take a migraine med like fioricet it makes the headache as well as the vertigo better. Such a strange connection between the 2. Will definitely try to keep my legs up, can’t hurt.

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