Is this a strange question?

[smac]

Hi,

I've been in and out lately, but I have a question.   There are a lot of days that I feel 'sick'.  It is very hard to explain other than I just feel 'sick'.  Joint pain - yes.  Fatigue - big time.  But other than that, it's hard to explain.  Shaky and weird.   Oh, and another thing,  I have really weird headaches.  ?

I would appreciate it if someone would say that they know exactly how I feel, because it is difficult to explain.

smac

[Scottietottie]

Hi Smac 

I certainly have days when I feel worse than others. I've never totally managed to pin it down to SjS in my case. I had three things all flare up at the same time plus the menopause and any of them could cause the symptoms.

I get a kind of feeling that starts off quite low down somewhere and then rises in an unpleasant way and causes me to break out in a sweat from the chest up - except sometimes there's no sweat - it just feels like there is. It sort of comes in waves - and I can't really explain it, but I don't like it. Remarkably little exercise can bring this feeling on, on a bad day. Even rummaging in handbag can do it!

That's probably not the same feeling as you at all - but I think we all have our 'off' days. I just really try to keep my mind on other things and get by that way.

What are you taking for joint pain? It should be possible to dull it down to bearable.

Take care - Scottie 

[Chico]

Smac,

Shaky and weird for me usually means I'm reacting to a high sugar level. Last time was a baked potato with sour cream on Sat.  Since I've tried to eliminate sugar for many SjS symptoms so this doesn't happen very often. 

I'm not diabetic just overly reactive to it, have been since I was a child.

Chico

[Chana M]

Hi Smac

I think a lot of us feel generally unwell with SjS, as with all AIs.  Sometimes it's hard to differentiate between a flare, or the side effects of a med, or one symptom trying to outdo the others!

Does this 'feeling sick' come at the same time as the weird headaches, or separately?  Could you tell us more about the headaches?  Are they in one part of your head?  Do they last long?  Do they affect your sight/hearing/sense of smell or taste?  I have some really odd headaches and some which are so debilitating I can't function for days.  No pain meds come close to touching them.  Prednisolone seems to have helped a little but they seem to be related to the central nervous system aspect of SjS ... although my neurologist still isn't convinced that that's the cause!

Keep posting and tell us how you are doing.

Take care

[irish]

Feeling "sick" is pretty much how we all describe it as we really are hard pressed to find a good way of explaining it to others. When I feel really "yukky" , a word I have used a lot to describe how I feel, I find that I also tell people that it is like having a bad case of the flu 24/7 and it varies from one hour to the next.

Can't say I have had the shakes except for low blood sugars. It may be that you are experiencing anxiety which goes along with the autoimmune diseases. Anxiety and depression are common in people with sjogrens and usually have to be treated to help us cope with our illness and get better sleep.

Over the years I have had joint and muscle pain, weakness, extreme fatigue, sweats that cover the trunk of my body with pins and prickly feelings on my arms. Sometimes my arms will get a little flushed at these times. Spacey, hard to concentrate, trouble with balance when walking especially in the dark, nausea every morning upon awaking. The list goes on but I can't remember everything at the moment.

It is not in your head. If you are experiencing different symptoms it is very real to you and doctors need to listen. Pretty much all the symptoms we have seem to wane and ebb and don't all happen at the same time. They don't make any sense and that is why the docs need to be aware that we might have autoimmune issues. Generally with other ailments the symptoms can be explained and attributed to something. Good luck. Irish

[ktfabian]

Hi Smac-

I get that shaky, yucky feeling from time to time.  Like you've said, I just can't quite find the right way to describe it.  Fortunately for me, it doesn't happen that often any more.

Headaches, YES!  I can go through a month of headaches every single day then one day they stop for a week, then they're back.  My rheumatologist has told me that they are Sjs related.  I get Rituxan infusions - a medication used for RA - every 6 months, that really help with the headaches.  I'm WAY behind on getting the second infusion in the series of 2.  I had the first one in late Nov. and was supposed to go back 2 weeks later, but I've been sick and then recently had knee surgery, so this Friday I'll finally get the second one.  I really hope it helps knock down the flare I've been in since surgery last Oct.

There are so many ways Sjs shows up in our daily life and it's probably a bit different for each of us, but I do know what you're talking about. If it doesn't let up, I'd talk to your doctor about it so she can rule out anything else it might possibly be.

Feel better, Tracy

[Epson]

I never feel good, but some days are worse then others, kind of like getting over the flue, not real sick, but sick enough that you don't want to leave the house.

When I wake up in the morning I don't know if I feel nausea or hunger and normal don't eat much for breakfast, then there is the aches and pains in the joints and muscles, never know what is going to happen or for how many days.  Right now it's my shoulder, I can barely shift gears in the car, without pain and something popping in my shoulder, next week it will be my feet and hands, knees always hurt.

As far as shaking, that only happens when I see my urologist on Wednesdays.

[wednesday mc haggis]

until a few weeks ago i woke at 6 am everyday feeling nauseated, then sorry for the graphics  , id be sick, id not be again rest of day, but felt seedy all day and mildly nauseated on and off, thnakfully thats settled down.

no your not alone in it , ive had shakes, hands tremoring, muscles twitching , eye lid twitching , but i do notice the shakes are apparent when my temperature control is off , days im shaky im also going between, shivering cold and sweating hot, yet my temperature is unremarkable .  Dont have the answer to it, but were all much of a muchness around here

T x

[ruby52]

Boy do I know what you mean.I just told my DH last night that I came really close to calling him home yesterday morning.I did a few household chores and suddenly felt really weak,exhausted,on the edge of collapse.I took laundry upstairs and fell onto the bed.I was scared and thought I would only make it through the day if I crawled under the covers but that wasn't an option.After a bit I came downstairs feeling weak but at least I could function again.I was sure I was getting the flu or a virus.That is a scary feeling and so hard to describe.Sometimes it hits out of the blue and then ebbs away.Weird stuff.
                                                                                                 Ruby

[Liz D.]

Hi smac,

I know EXACTLY what you mean!!  I feel like that often and there is no word to describe it to people, especially when you look normal.

I have been in bed the last three days with a terrible headache and all those joint pains and fatigue you spoke about.  I think they are both Sjogren's and perimenopause related.  It can be very discouraging when you realize that this is what life with SJS is like.  But then somedays, I wake up feeling like nothing is wrong with me!!!

Anyway, my yearly physical is the 25th of March and I hope to find out more. 

Liz D.

[smac]

Hi.  Thanks so much for all of your answers .   I have trouble even discribing to people what I feel like, and on those days when it is worst, I can hardly move around, but the minute I sit down, I feel like I cannot move again.  I wasn't sure if I had something else going on, but now I think not.  I do also get the flu-like symptoms where you would swear that you are really getting sick, it will last 2-3 days, and then almost (but never entirely) goes away.

Also, as far as the headaches, I have suffered from migraines all of my life, and I have to be careful that any headache I have doesn't turn into one.  But these are really sometimes incapacitating in that I feel really disconnected from everything when I get them. Like I have a vise on my head and my eyes don't want to open.   Yes, I have had a brain MRI and there were no abnormalities.  Sometimes, I feel worse right after I get up in the morning.   My head hurts, my joints hurt, and I can hardly walk.  I force myself to move around because I am still working full time.  Eventually, with pain meds, I can get
going, but then I never really feel good that particular day.

I have an appointment with my rheumy in 2 weeks.   I now will come with a whole list of complaints that I now know goes along with SS.

Thanks for listening. As you all know when you try to talk with some of your friends, they all look at you like you are a hypocondriac.

My sister-in-law has RA, but because she has a dry mouth she thinks she has SS.   I told her that she hasn't  a clue.
That didn't set well.

Thanks again.

smac