Flare up is now calming down

[jaygee]

I think I am at the end of a rather bad flare up, just in time for when I see the rheumy for the first time (private appointment on Saturday).  I am in limbo, but pretty sure I have Sjogrens.

I feel weird.  I have written a list of all the symptoms I have, but they are transient.  For several weeks I have been experiencing a new sympton, which has been really stiff feet on getting out of bed in the morning.  So much so that I limp every morning.  Limp after my drive to work, or limp after sitting for a while.  This has been going on for weeks.  Today that has gone.  No explanation.  My feet are still kind of stiff, and still numb and tingly and uncomfortable but not bad enough to make me limp today.  I am still aware that they aren't quite right, but they're not making me limp today.  I should be celebrating, I suppose, but part of me wished I had this to "demonstrate" to the rheumy at weekend.  Is that wrong?  I am starting to worry I am imaging this, but deep down I know I'm not.

Knowing my luck I will be super-well at my appointment on Saturday, which I know is good, but on the other hand, I am worried they will think I'm a fraud.

So, am taking a list of my symptoms with me, but still feel a bit foolish.

Did you ever feel like this before you were formally diagnosed? 

My list is pretty impressive I suppose - Quadra plugged for 5 years or so now (no-one really mentioned Sjogrens and I am on no meds or regular reviews), dry mouth identified by dentist who referred me to a specialist, who tested my saliva levels by spitting in a cup for a timed period, then chewing gum and repeating the test.  They just prescribed some gel to put in my mouth at night but I admit I haven't used it, just sip lots of drinks throughout the day.  I am so used to having a dry mouth and eyes, it is just the way I am - do you guys understand that?  I know that I get debris in my mouth every morning, my eyes are always crusted over but that is just normal for me.  I have been this way for so long, I am wondering if I am just being mardy?

Various quite serious aches and pains on a regular basis, particularly neck and lower back.  I am ok walking, but I can't stand still for more than say 5 or 10 minutes, with paying a price for it.  I get "stabbing pains in the head" headaches, which make me wince.  Extreme fatigue (wanna lay down and die kind of thing) and am always tired.  For 10 years now I have taken to having a sleep for 3 hours each weekend afternoon, by way of resting, but always thought this was because I am always so busy during the week.  I've had IBS for around 15 years and as long as I avoid bread, I am generally ok but always have either constipation or diarrhoea, and again that is normal for me.  The new tingling in hands and feet (which started this recent journey to the rheumy as trapped nerve has been excluded via MRI) doesn't hurt, it is more of a nuisance.  The "fluttering moth" noises in my ears is new, but again it doesn't hurt.  I have had chest pains on and off for years, too, but it doesn't stay around all the time.  I have, for as long as I can remember, always been a person who feels the cold.  These days I can have one hot hand and one frozen hand, but that is normal for me.  I don't seem to control my own body temperature.

But when I start to say all these things I feel like I am just complaining.  Pointless thread, I suppose.  But feel better for saying all this. 

Thanks for letting me vent.  I guess I am feeling confused at the thought of seeing the rheumy, and a little worried in case it is all in my head.  None of my friends would guess any of this.  They know I have "funny eyes", but I don't really say much else.  I don't know, guess I'm just feeling weird.  Did anyone else feel like this before being diagnosed?   xx

[Stillinlimbo]

Do you, or other ppl with SJS use prednisone for flares?
Thanks
Cathy

[jaygee]

Hi - I'm not on any meds as have not been diagnosed.   

[Dolly Dimples]

 Jaygee, never a pointless thread my dear!  That is the very essence of this site..

                     Everyone on this site will fully understand exactly how things are with you right now..

           Yes, you do have lot's of symptoms that may well be SS. and if so you get right back here, where you will get lot's of tips and sympathy, (no tea)
             
  I do hope use drops for your dry eyes, if not you must do so as they can become scarred..
      Also you should use the gel for the dry mouth, as this can help especially at bedtime..

  You certainly seem to have lot's of issues, so it's no wonder that you feel so at the end of your tether..

             I am glad you are seeing a specialist soon,so please come back and let us know how it goes.
   Very best of luck Jaygee, will be thinking of you Saturday..
                                                                                      comfort hugs, Dolly

[jaygee]

Thanks, Dolly.  I needed that hug.  Sometimes I think I'm going mad, cos no-one can see what I feel like.  I am one of those people who is always busy, and wold hate someone to think I was lazy when I was just having a really bad day.  But some days it is hard to pretend everything is ok, when it isn't.  xx

[Stillinlimbo]

Hi Jaygee
I am not diagnosed either, in fact, my biopsy results today, said NO< NOT SJS. But,my point was, I am on prednisone as an experiment, and I feel worse, but, sionce I dont have SJS, I guess it is a moot point.
THanks, and best of luck to you!
Cathy

[jaygee]

Hi Cathy

Sorry you have not found out what's wrong yet.  It's a nightmare isn't it?  It's weird but, for me, I want somebody to give this a label, so that I feel I am not just moaning about this or that.

[Stillinlimbo]

Thanks, yes, weird, well, no, weird went out the window 1 1/2 yrs ago, now going on my 2nd year with something unknown, I think I'm more at the insane stage and will beg borrow or steal a diagnosis just for closure.
So, to you, I wish the best of luck!
I guess I'm off to another forum to search for similar symptoms? Not sure where though,
Cathy

[Dolly Dimples]

  I do understand Jaygee, that is our biggest hurdle,  getting others to understand that we are not lazy, or malingering..

         It can be so frustrating when one says   "well you look fine to me" if only they knew!!

  You can come here and moan away, we all believe that you ahve  got something to moan about..

      I could scream when someone  goes on for ages about the headache theyve got!!

  I wanna scream, "you want something to moan about", but then I just woulden't as I am too nice to say things like that!!
                               So ignore them is what I say! , Dolly
         
             
           

[Scottietottie]

Hi Jaygee

You are not moaning. This is not a pointless thread. I'm sure most of us have made appointments with our doctors at some point only to find that the 'complaint' has mysteriosly disappeared the day of the appointment.

Having a symptoms diary is a good thing. havining proof that your eyes are dry and that you're not producing enough saliva is also good. There are rheumies out there who will dx on symptoms.

At least with a private appointment you should get the time you need. You are paying for that time so control the time you have!  Note down some questions before you go and go through them and actually note down answers!

I hope the appouintment goes well.  You KNOW this is not in your head and a good rheumy will know that things flare and subside.

Take care - Scottie 

[fluffiebunnie]

Jaygee,

You are in EXACTLY the same position as me.. undiagnosed.. with a list of strange symptoms... and I too feel that no one is taking me seriously as I have no diagnosis.

I started in October and was really sick... which lasted until January.  February and March were good and now April has started another leg of the journey.... new strange symptoms..

I have constant blood test/appointment/bloodtest/appointment and never an answer, I am due an x ray on my neck in June for pains, my stomach is causing me major problems.

On top of that I have the usual SS symtpoms of dryness/tiredness/aches/pains....

I JUST WANT AN ANSWER!!!! NOT ANOTHER BLOOD TEST!!! Its driving me insane not knowing or having any treatment... I know EXACTLY what you are going through.... sending you lots of hugs...x

[Stillinlimbo]

Thanks for the hug,,,,,,,this is an awful spot to be in. For all of us undiagnosed. I am starting to wonder if I really am nuts? So, now? I dont know. I am running out of ideas, and specialists.
And, forums! LOL, was on the MS forum for a year, before the docs said, NOT MS<,,,,,,,,,,then, I researched SJS, and been here, now maybe I'll go to the wacko forum?
LOL
Thanks to all
Cathy

[jaygee]

Maybe if you listed your symptoms, Cathy, someone here could point you in the right direction, as I have learned that a lot of the auto immune problems overlap.

Hope you find some answers soon.  xx