I just don't get this

[DesignerS]

Does this make sense to anyone here?  Every week or week and a half, I go to bed fine.  When I wake up in the morning I have a fever, chills, and excruitiating pain in every joint, muscle, head, glands.  I told the Rheum. dr. about it so he did more bloodwork.  I went to my GP and it was easy for him to say, it must be the SjS. 
Seriously, my lungs are on fire, and I go to the bathroom constantly when I have this happen.  GP did an xray and he thought it looked ok.

Is this familiar to anyone? 

Designer

[Patze]

Hi DesignerS,

I'm sorry, but I don't have what you're experiencing.  I sure hope a more knowledgable member stops by to give you some answers soon.

Hang in there, and I hope that you feel better, well at least hope that this cycle stops soon!

Hang in there and take care my friend -

Patze

[missy1306]

Hi Designer. I like Patze do not have an answer for you but just wanted to tell to keep seeking the answer and don't give up. I am sorry you are going through this.

Love Missy

[DesignerS]

Patze and Missy,
Thank you for the encouraging words.  I think it might be time to go to a university center.  I have put it off, but how can I be positive this is from SjS.  Either that, or someone will answer on here and say they have this problem.  Take care.

Designer

[irish]

Designer, It is very possible that this is your sjogrens flaring up. I know that when I had a lot of joint pain in hands and feet I would go to bed and be fine and when I awoke in the morning my hands hurt and felt as big as a baseball glove and I could hardly stand on my feet. Felt like I had been doing something all night long -- was only sleeping.

The pain, low grade fever, etc is easily explained as sjogrens but I have no idea about the urinating so much. Has your GP done kidney testing on you??? Just curious. I guess if it continues and no one has a clue I would get a referral to another rheumy who might be able to sort it out. Good luck! Irish

[DesignerS]

Thanks Irish:)  I appreciate your response.  You don't seem surprised at all aboutt the fever and pain, which makes me feel "better."  LOL  You know how you always wonder if you are missing something, or if the problems are from something else.  So thank you.  No, the dr. has not done any kidney testing.  He took a sample to look for infection, but I knew that was negative. 
So, I might need to push a little harder with my Rheum.


Designer

[Liz D.]

Hi Designer,

That is exactly how I feel in the morning when my Sjogrens is flaring up -- just like Irish said.  Mornings are the worst for us SJS patients.  Sometimes I am miserable for the day and other times if I just force myself up and get my meds in and a hot shower, I start to feel better.

Liz D.

[missyb]

the thing I would always tell the Dr.s was that i felt like waking up each day feeling as though I caught the flu.

[DesignerS]

Thanks Liz.  Which meds are you taking?  Just saw the dr. and he said its all from SjS and there is nothing he can do.  Now this was the GP, not the Rheum. dr.
Yes Missy, it is exactly like the flu.  In fact, I wait for it to get worse thinking it might be the flu "this time."  But it always feels the same, sometimes just lasts longer.
So off to take my breathing treatment and pretend like its going to help.    Just following directions

Designer

[lovies10323]

I'm pretty new here to Sjogrens, however, not to Diabetes...Urinating alot could signal high blood glucose. Not sure at all if this could pertain to you, but I know thats what happens to Diabetics when their sugar is high. Just wanted to throw that out there.   

[DesignerS]

Thanks Lov.  It is definately a different symptom within the past 3 months.  I just wonder where all of the urine is coming from, I am not a big water drinker.

Designer

[Liz D.]

Designer,

I am on tons of meds - evoxac, plaquenil, prozac, naprosyn (although limiting it now due to stomach problems), protonix, birth control (for ovarian cysts), flonase, levoxyl (for thyroid), and probably more that I can't think of. 

Stress does a lot of damage to us, too, and can get us in trouble with flare-ups as well.  My doctor has also prescribed me Xanax which sometimes helps calm me down.  If I learned to pace myself physically and takes things in my stride, I probably would not have as many flare-ups as I do.

Liz D.

[Katybarstool]

Liz

You are so right about the needing to pace yourself. I've finally relaized that it's the only way for me too.

Interestingly, when I was in Rome with my mum in the spring we made friends with a woman from the Jobcentre, who specilaised in trying to place people with chronic conditions in suitable work. Mum (not being very discrete) decided to talk to her about my health problems, and about the fact that I was still able to work full time. I think the point she was trying to make was that, although I'm 20 odd years younger than her (mum) and they were making adjustments for her on  the walking tours etc, just because I looked ok, didn't mean I was. Anway, I came back to the end of the conversation when this woman said to me, she bet I paced myself  and listened to my body, otherwise she didn't think I would be able to carry on as  do. In fact, she said that is the hardest thing she has to tell her clients, as it's pointless even looking for them work if they do 'boom and bust'. I felt really pleased that she was acknowledging that we Sjoggies do need support, and to be able to rest when we have to. Not many people appreciate that.

Kathyx

[samanddean]

Hi - i was doing some research on some other AI diseases - check out Gardeners Syndrome - it affects your lungs and Kidneys.

[Patze]

Hi samanddean,

Let me welcome you to the SJS World!  Please look around the board when you get a chance, and join us in chat when you have a few minutes.

Can you tell us a bit more about yourself?

Take care -

Patze