Flare or Exhaustion?

[NikkiNicole]

I have a question for the group!

I have the worst fatigue that I've had since I was undergoing radiation last March/April. I literally feel like just sitting here, like a lump in a chair, staring at the wall, even moving my arms is wearing me out.

Somehow, I was able to walk today, I was able to do my squats and a short plank but it wasn't easy. I probably shouldn't have, but, when you have gained as much as I have with this disease, you can't just sit!!

Anyway, my nose has been bothering me. Aching, burning, throbbing, the air sometimes feels ice cold coming in one side of my nose when it's not cold out? Basically, I'm aware of my nose 24/7.

So now, with the nose stuff and the fatigue, I'm worried there could be a flare starting?

But .... I've also not had a day off since March 27th and I've been doing a LOT of long shifts. So, part of me is thinking this is just exhaustion? I don't know. It seems to have come on in pieces ... my nose started acting up and now WHAM-O, I can barely be a functional person.

Anyway, I'm just curious. I don't want to contact my doctor unless absolutely necessary.

[NikkiNicole]

Oh ... and occasionally ... my ears feel like someone jammed an ice pick in there. Not constantly ... just the occasional very sharp pain.

[Pete]

Could be a flare. Also, have you been checked for chronic fatigue syndrome? You've been talking about fatigue for quite awhile.

Sure hope you get to feeling better soon.

[pberggren1]

Prob flare or infection, get us your numbers hun.

[lag713]

Definitely get checked out. It can't hurt. I hope you feel better in the meantime. Listen to your body. Rest when you need to, make sure you're getting nutritious meals, and be active when you feel you can be.

I've felt the same way and I imagine I will until the meds get it in remission. Take care of yourself!

[darl-p]

Nikki,
I have accepted the tiredness as going along with the disease. From what you say you are doing I definitely would be tired even without Wegeners but I would definitely contact my doc if I was in your situation. He has me on “standing orders” for blood work. If I feel something is not going right I get the blood tests and let the data speak. We always have a phone conversation after a series of tests. The phlebotomists used to call me a “frequent flyer” when this all started. If I was concerned as you are, I would want a conversation with my doc, even if it was just my primary. Let us know how it goes.

[NikkiNicole]

I usually do my lab work every two months and it's due on April 25th. So ... I guess I will be going in a little bit early so I can see what the numbers look like.

[Debbie C]

Its sound like you are doing entirely too much,with not having a day off ( which u do have a stressful job to begin with ) and all the excerise,maybe you should slow down a little and rest. Plus get yr blood work taken earlier !:hug2:

[mishb]

Its sound like you are doing entirely too much,with not having a day off ( which u do have a stressful job to begin with ) and all the excerise,maybe you should slow down a little and rest. Plus get yr blood work taken earlier !:hug2:

I agree.

I'm not going with a flare on this one - just a gut feeling :unsure:

My arms are so heavy and tired at the moment and I realised that I had to carry some heavier than usual bags to work yesterday (full of Easter eggs) and we also had an Audit, so was constantly getting files out for the Auditor.

Planking would do my arms in, in no time flat. I think a day off work and also a day off planking and exercise may help :mellow:
Sleep, sleep and more sleep is required - for me too.
I, however, have two more days of work and then 10 days off. Lots of resting heading my way.
I hope you can also get some more rest.........because, if your body is telling you to, then you should listen :wink1:

[Alysia]

Hi Nikki,
labs every 2 months is too long. I do them at least once a month and I have always the option to do them anytime I feel bad.
do you have fever ? is your nose bleeding ? do you have pains in the ears and fluids ? are your joints aching or red ? do you have other signs of wg-activity ?
I think that you are overdoing anyway, flare or not. listen to your body.
we love you and I bet that the others around you, love you too, no matter what :hug2:

[NikkiNicole]

I just arrived at work after doing my labs. I have to say, and I apologize if this is too much information to share ... My urine sample did NOT look pretty. I feel like I have a urinary tract infection, my head feels weird, like feverish. The back of my ribcage hurts, I'm wheezy, etc. No bloody noses yet, just constant pain.
I've had sporadic shoulder and hip joint pain. It doesn't hang around long, just hurts for a bit and then stops.
I'm off tomorrow, except for a meeting at 6pm. I plan on staying in my pajamas and only really focusing on laundry. Unfortunately, laundry beckons.
Thank you all for your words of wisdom/advice/concern. They are greatly appreciated.

[NikkiNicole]

Update:
As my lab stuff trickled into my in-box, I was getting discouraged. Everything was looking normal. Then, the CRP came back elevated. Not a lot it's supposed to be <0.5 and it was 1.0. Then, ANCA came back and the PR-3 is definitely on the rise. It's supposed to be <0.9 and it's currently at 6.0. Kaiser's charts only go to 8.0 The lowest I've ever seen it was 4.0. I know this can't be used to determine disease activity but ... it's disconcerting to me in general that it's on the rise back up.
Yet, at the same time, I feel like it's justifying how badly I feel.
What will my doctor do? Probably nothing.
Creatinine was fine, I do have a UTI and am taking antibiotics.
Still feel rather lousy and severely fatigued. Had to come to work and go to court today, looking forward to getting my butt home!

[annekat]

The exhaustion is one thing, which could be part of a flare or just exhaustion, but the sharp pains in nose and ears are a concern. You could have an ear infection. When I've had those I haven't felt steady pain, but sharp ones. Also, just ear blockage from allergies or a flare can cause sudden ear pains for me. And the huge chunk of hard, impacted ear wax I just had removed also caused me some pain here and there; the ear feels so much better now that it's gone. The nose pains, I don't know what to say about, since I haven't had them even though my nose has taken something of a beating from Wegs.

[NikkiNicole]

My doctor emailed me that I don't have a UTI because nothing grew on the culture, yet I have all the signs/symptoms. So I wrote her back, explaining I have all the signs including a mild fever. She said to just take my antibiotics and test again when I was done.
I'm getting frustrated. But, at least she's watching when I do my labs.

[pberggren1]

Not much more can be done hun. Just have to finish your course.

[drz]

Infections should indicate a rise in WBC along with CRP. Otherwise I would suspect an increase in Wegs stuff if infections are ruled out. The ANCA scores can follow Weg activity and be useful indicator too for some people. My doctors think I might be one of those lucky ones where the ANCA scores are indicative of level of Weg activity.

My main concern if I start having an increase in possible Weg symptoms is to check for possible kidney involvement since one can lose their kidneys in a few days. I already have lost half my kidney function to Wegs damage. Jack had this experience and often reminded us of this risk of losing kidney function. Thus lab work to assess the kidney function or at least a dip stick test for possible blood in urine is important for peace of mind. My symptoms have always increased during any infection and that is always the most likely cause of any increase in my residual symptoms of Wegs. They have subsided when the infections were resolved. My ANCA scores have remained negative for past couple years but were off the charts four years ago when I was first diagnosed and treated for Wegs.

[NikkiNicole]

Ended up in the ER Tuesday night, another urine sample testing positive for a high volume of blood and white blood cells.

Result?

Kidney infection.

Ugh ......

[KimH]

Oh dang! It just doesn't end. I hope that you have some answers and can get things under control. You deserve a break. Sending well wishes all the way from the other coast.

[annekat]

Ugh is right. So sorry about your never-ending issues that keep cropping up. I hope this can be taking care of quickly and easily.... I know nothing about kidney infections. I just wonder, why you, after everything else.... Hopes and prayers your way for healing and better times in the near future.

[windchime]

Healing vibes coming your way. So sorry you have to go through this Nikkii. Hugs to you. :hug2:

[Alysia]

I am sorry Nikki :crying: I know how you feel. I also suffer from lots of UTI's and how it makes you feel aweful. I am taking cranberry pills although I doubt it helps.
lots of hugs and prayers to you :hug1: it is really time for you to get some vacation from all that illness.
btw, your blog is awesome. you can open a thread for it here too :thumbsup:

[drz]

I am sorry Nikki :crying: I know how you feel. I also suffer from lots of UTI's and how it makes you feel aweful. I am taking cranberry pills although I doubt it helps.
lots of hugs and prayers to you :hug1: it is really time for you to get some vacation from all that illness.
btw, your blog is awesome. you can open a thread for it here too :thumbsup:


I used to have lot of UTIs too but never had another one after they started me on trimethoprim antibiotic. It is the non sulfa part of Bactrim which many Weggies take. I also had a TURP to help me empty my bladder beter which also helped I think. I used to drink cranberry juice too but that is bad for diabetes so it just made things worse for me.

[Alysia]

I used to have lot of UTIs too but never had another one after they started me on trimethoprim antibiotic. It is the non sulfa part of Bactrim which many Weggies take. I also had a TURP to help me empty my bladder beter which also helped I think. I used to drink cranberry juice too but that is bad for diabetes so it just made things worse for me.
thanks drz. I couldn't continue with trimethoprim because it elevated my liver functions.

[lag713]

How are you doing, Nikki? Are you feeling better? Is the infection clear? :hug2:

I hope you've been able to rest up more and take some time for yourself!