HELP!! I feel terrible!!!

[Belsey1]

I posted this in Social Hour but think IShould have posted here.


I have had a rough week with my Sjogrens....pain, weakness, nausea, fog.....but today is the worst..I hurt everywhere.  Deep muscle pain in my arms, legs, hips...I compare it to having tetanus shots in these areas.  My lower back has extreme pain on left side near my waistline.  I feel like when I stand up, I won't be able to move.  All across my back is a burning
Pain/uncomfortableness. I honestly can't phantom how in the world I will be able to get up and get dressed for work in the morning.  I have taken my two a day limit of hydrocodone and do not know where to turn...also have sores on stomach and my parotid glands, or something, feel sore and I think I have a fever...in addition to all this, I have sinus infection, sore throat or something going on. No one at home understands how terrible I feel.  I just want someone who has been there to tell me I will make it.
 

[Linda196]

I'm sorry, but to me, this sounds like more going on than a SjS flare. Maybe you should see a doctor to possibly rule out something like kidney infection.

Sometimes it becomes routine to assume that anything we feel is a result of SjS, and that can lead to missing other things that can happen.

[Luna]

I have had a flare like this before. Quite a few times. Only no sores. That worries me. Please go see the doctor about that.
It is hard when no one in your home understands how bad you feel. Im sorry you have to go through this..

luna

[Belsey1]

Thank you Luna and Linda for your replies.  I was at PC on the 7th and had kidneys checked.  They were fine then, but I do feel like the lower back pain feels kidney or UTI related.  I was at Rheumotolgist on the 20th, but of course none of these symptoms had appeared then or had not progressed to level they are.   Linda, I guess I am asking because, like you said, I don't  want to blame everything to SJS.  I have had this rash/sores on stomach before...again, it was not there Monday when I was at Rheumotologist.  It is like all of these symptoms just appeared or exacerbated over the past 2-3 days... I may call my PC and go back there tomorrow if I don't  improve.

[eyeamdry]

Belsey, not to throw in stuff to make it more complicated, but you may possibly have fibro too.  I went like this after being dx for Sjogrens for several years and finally my rheumy added fibro to the mix and that also added some more meds to help with the extra pain which i believe my fibro was in my muscles most ly.  I already have bad joints including two knee replacements.  Fibro is just something you may ask about.
Lucy

[Patze]

Hi Belsey,

I'll second Lucy about possible fibro as I too had problems like yours, the pain, misery, aching muscles, and brain fog too mention but a few (except for the sores and fever - I've never had chickenpox so I can't speak of shingles).

Can you see your primary to try to figure out what is going on soon?

Take care of yourself and don't forget to update us, okay?

Patze

[smileandbehappy]

Wish I could help you.  It wouldn't be your medication that is causing your sores would it?  Sounds like you should definitely go to the docs whilst everything is as bad as it is.  Good luck.  Chin up.  xx

[A66eyroad]

Wish I could help, also, but I agree with Linda that it sounds like there is more going on, especially if it is something that came on suddenly.

Shingles springs to mind because of the sores, and because it's at your waist in what you seem to describe as a line.

Can you be checked soon? If it is shingles, the sooner you start taking the medicine the better and faster your outcome.

[Belsey1]

In response to all who have suggested Fibro....I did not mention in my original post that I have Fibro..I was diagnosed with that in 1990.  So I have had many flare ups from it, but never anything that felt like this.  However, much of the pain has subsided and now I have a major sinus infection, swollen glands, headache and all the stuff that goes with that.  The rash/sores on my stomach are still there, but have not gotten any worse or any additional breakouts.  I had an appointment for after work yesterday with my PC.  I teach school and have a sofa in my room for reading to the students.  After work, I lay down on sofa to rest a few minutes (about 20) until time to go to doctor and I woke up an hour and fifteen minutes later....too late for my appointment.  I went home and went straight to bed where I stayed all except about an hour and half until this morning.  I guess that is why my pain is mostly gone today. 

I do not know how to add my diagnosis and meds, etc to my posts so I won't be leaving anything out in the future.  If someone can tell me how to do that, I would appreciate it.

Thanks to all of you for your responses and concerns.

[Patze]

I'm with ya Belsey, the more tired I am, the far worse the pain & exhaustion become.

Hang in there and I hope that you can get to your doctor soon.

Take care of yourself -

Patze

[Belsey1]

Thank you Patze.  Encouraging words are always welcomed.

[Patze]

You're most welcome Belsey!  We are all travelers on this path called Sjogren's, and dang it, we all can use a bit of help now and then; I know I sure do!

Take care now -

Patze

[Meld256]

Belsey,

I hope you're feeling a bit better today.    Perhaps you might still be checked out by the pcp? I know how Fibro. can flare up and make us feel absolutely awful, but either a case of shingles would make things so much worse and if you have a sinus infection, those can really do a number on us.

Either way, sending you some positive thoughts and hope you're on the road to recovery soon!

Please keep us updated, and take care of yourself.
Melinda