Omg pain!!!

[NikkiNicole]

I stayed home yesterday and picked up my prednisone. I was OK yesterday, had a lot of tension and pain in my shoulders and neck and kept finding myself sitting in ways that would aggravate it. I would try to consciously be as limp as possible and not engage any of my joints. It sucked.
I'm back at work today, took the prednisone yesterday (20 mg for 5 days and then taper) and today I have serious aching from my ankles and knees. I've been struggling to eat clean for awhile. There's been so much extra stress on me the last couple weeks I kept giving in to my cravings.
Well, no more ... I have a feeling my weight is only aggravating the ankles that already hurt. So ... enough is enough. I'm on prednisone again and have no idea if I am going to have to be on it for awhile and I want to feel as good as I did when I was eating clean.
I stopped being a trainer at work because it was the part of my job I hated, and it was a HUGE added stress to an already stressful job so ... that's off my shoulders. I am still adjusting to that. I feel a bit like I left my training team short handed but ... that's my supervisors fault for loading us up with trainees and expecting everything to work smoothly. I am sick, I may have more wrong with me then I originally knew so I just can't do that anymore. I want to be happy at work again.

Pain is spreading today! BLAH!

[Pete]

Good luck! Hope the pred kicks in in earnest soon. I think it's good that you gave up the training gig. Hoping all goes well.

[NikkiNicole]

Driving back to work after a break, I started to feel weird. I felt dizzy without the world spinning, if that makes sense. I could feel in my stomach as if I was spinning, and I felt clammy and weird and it just felt like my head isn't right. Everything seems not right. The light outside was bothering me more than normal ... and I can't quite think straight.
Not sure if this is just a side effect of the ol' CellCept, if it's Weg's related at all, or if I have some other weird thing happening. I felt weird earlier, like I was going to eventually have the flu but who knows ...
I'm just all kinds of messed up.

[annekat]

It makes sense, the dizziness without the spinning, they are related. I've been having both lately, and have a history of it since having Wegs but am not sure how related it is to the disease. Meclizine helps a lot, get a prescription or buy Dramamine, a lot more expensive. It's some sort of imbalance in your inner ear. It can take a few days to resolve and then not happen for weeks or months, then happen again. Vertigo (spinning) is the worst, especially with vomiting. An ENT is who to see about this if it continues with no known cause. You could have Meniere's or BPPV, both searchable on web. Neither is life threatening. BPPV is common and involves little crystals, or "ear rocks" that collect in sensitive parts of your inner ear canal. There are exercises for it, to re-position the crystals, can find on web. Vertigo is hard to pin down, you will have docs and sites all saying there is not always a known cause, or that there may be many causes. It's frustrating. I'm kinda messed up right now, too, but without any of the pain you've been having, so I guess that makes me relatively lucky.

[Alysia]

It makes sense, the dizziness without the spinning, they are related. I've been having both lately

. I'm kinda messed up right now, too, but without any of the pain you've been having, so I guess that makes me relatively lucky.

I know its Nikki's thread but I am worried about you, Anne, so if and when you feel like sharing how are, please do... sending my prayers & love ♡

[Debbie C]

Nik,,do you think it might be the side effects of starting the pred up again ?Like Anne said it could be your ears maybe you should put an ent on the list of things to do !
Anne,like Alysia said ,you need to take care of yourself also.

[annekat]

Thanks, guys, I've been through this before and am watching it day by day and taking the meclizine. I had a sudden big dizzy spell when reaching up high for something, about a week ago. It turned into vertigo, with vomiting, but didn't last very long; by the time I took the meds it was already easing up. That sounds more like a positional thing, BPPV, where the calcium crystals in your ear need re-arranging; from what I've read, the episodes are short. I've downloaded and printed three kinds of exercises for that and have been doing one of them. I've stopped coffee, because the caffeine is a trigger, though I still start the day with a little black or green tea. Since that initial episode, I feel slightly dizzy a lot and have had three more short vertigo spells, once before waking up and once shortly after, and once in the evening after coming home from the market. None in the last few days. I take the meclizine but need to taper off it, as it keeps you from recovering from the vertigo tendency. It is normal for it to take several days to recover from an episode. My ENT suggests my keeping a journal of the episodes when they happen, which I'm trying, but if you put it off, it's hard to remember. He has suggested that I could have Meniere's disease, which I think my grandfather had, and is mainly controlled by diet. He hasn't mentioned the BPPV, I'm not sure why, since I read it is fairly common. I did have a CT scan and an MRI last year after having had some serious vertigo, and there was no sign of strokes or brain abnormalities. The ENT seems to feel keeping a journal is the best way for him to tell what is going on. I'll see him if this continues. Thanks for your concerns!

[Alysia]

Thanks, guys, I've been through this before and am watching it day by day and taking the meclizine. I had a sudden big dizzy spell when reaching up high for something, about a week ago. It turned into vertigo, with vomiting, but didn't last very long; by the time I took the meds it was already easing up. That sounds more like a positional thing, BPPV, where the calcium crystals in your ear need re-arranging; from what I've read, the episodes are short. I've downloaded and printed three kinds of exercises for that and have been doing one of them. I've stopped coffee, because the caffeine is a trigger, though I still start the day with a little black or green tea. Since that initial episode, I feel slightly dizzy a lot and have had three more short vertigo spells, once before waking up and once shortly after, and once in the evening after coming home from the market. None in the last few days. I take the meclizine but need to taper off it, as it keeps you from recovering from the vertigo tendency. It is normal for it to take several days to recover from an episode. My ENT suggests my keeping a journal of the episodes when they happen, which I'm trying, but if you put it off, it's hard to remember. He has suggested that I could have Meniere's disease, which I think my grandfather had, and is mainly controlled by diet. He hasn't mentioned the BPPV, I'm not sure why, since I read it is fairly common. I did have a CT scan and an MRI last year after having had some serious vertigo, and there was no sign of strokes or brain abnormalities. The ENT seems to feel keeping a journal is the best way for him to tell what is going on. I'll see him if this continues. Thanks for your concerns!

Thanks for sharing Anne. I appriciate the effort and I am still worried about you.
I remember how scary it is to have vertigo, feeling of loosing ground.
I hope you can have some one to come over if you feel too sick ?
I wonder if its wg connected ? In my case it was. Maybe you should ask your wg doc ?

Time to call my angelic dr. Phil to be in charge of you from above. sending prayers & love. Please take care and update us.

[annekat]

Thanks, Alysia. I do have neighbors nearby who can come over. But it hasn't been necessary, as the vertigo episodes have been short. That part is strange, since they used to be longer, as much as 8 hours one time, even with the meds. I wonder, too, about a WG connection, because I have had damage to my ears, but it is in the middle and outer part, not the inner.... mainly, one ear drum is completely eroded away and there is extra skin growth trying to fill the space. So that ear can barely hear at all even with an aid. The other ear is normal-looking and does very well with the aid. I don't feel like I'm in a flare, but maybe the ENT should look more closely at my inner ears with a CT or MRI to see if there is anything abnormal happening there, or at my brain stem, etc. I have talked to so many people who have had vertigo without having WG, it makes it very hard to guess what it could be. I could see the ENT more often but think I need to keep better journals. I also could try to see some other specialists besides him. Thanks for worrying about me, it means a lot.

[NikkiNicole]

Please keep us posted Anne!! That sounds awful. I haven't had the vomiting yet but I am getting the dizzy spells daily. I can't tell if it's BPPV or just vertigo yet.

I talked with the rheumy again today. So ... here's where we are at. My inflammation markers were high on my blood work so she doesn't want to pursue the fibromyalgia avenue yet. She wants to charge ahead like this is a flare and take the steps to fixing it. I am to continue on the prednisone, go to ENT and have them take a look in my ears and sinuses to confirm if there's any inflammation there (my nasal cavity was inflamed when I saw my rheumy last) so that it's documented by ENT. And then ...

Rituxan.

Before we start RTX, she wants to have all the Is dotted and the Ts crossed with checking everything just because of the potentially dangerous side effects and reactions. I know she's hesitant but she said today that she's tried MTX and CellCept. MTX had too many bad side effects to get by with ... and CellCept is not doing anything to make me feel any better. I can't take AZA or whatever it is so ... we aren't left with many options that don't leave a bunch of nasty side problems.

She still wants to save CTX for big issues.

After talking to her, I started to feel worse again and am once again dizzy, nauseous and feeling like my brain is going to stroke out. It's a very scary feeling to feel as if I am going to just die. Yes, that's how it feels. My head feels like I am fading and I am going to die. But I can't explain that well. I even feel as if that isn't an accurate description.