ANyone have all these symptoms at once???

[irish]

I have been feeling pretty yukky lately and finally took "inventory" as it seemed like the symptoms were starting to pile up. I have figured that I am having a down time due to stress from hubby's illness, etc.

Actually, I thought that it had started after having my cardiac stress test on Dec 7th, but then hubby went to ER on the 10th so it is hard to tell. Started with pain and stiffness in both thigh muscles. Bad in morning and takes almost all day to loosen up. Like having muscles spasms and pain at the same time. Soon after both achilles tendons got painful and tight to be followed by both wrists and my left breast pain.

This was weird, it is my breast that has the swelling related to the sjogrens. I had what seemed to be neuropathy pain in my breast and it was darn miserable. Finally, I placed one of hubby's clean handkies under the left bra strap and in about 3 days it started to calm down. I figure that this is related to the carpal tunnel in my left wrist as my left wrist has been bad and fingers on both hands have had pain and numbness. I do need to have the left carpal tunel surgery..For the record, my right carpal tunnel was accompanied by bad nerve pain from shoulder/back down my arm and a hanky placed under bra strap relieved the pressure on the nerve and decreased the nerve pain to a certain degree. I had that carpal tunnel surgery in 2004.
                                                 

Then the parotid glands swelled up and spasms in face from parotid ducts, ulcer on floor of left nostril that was really miserable, sinuses painful but no colored drainage, cartiledge in nose where it attaches to the hard palate at base of nostril above lips (have had this before and documented by ENT),nausea, chills occasionally but not terrible, sweats at times but no terrible, aching all over and generally feel ill, stiff neck on occasion, dizziness and last but not least my stools change when symptoms increase.

I made an appt with ENT in the area just to make sure that I don't have a sinus infection cause how in the heck do you know when there is not much drainage. The inside of my nostrils are sore and feel swollen at times which goes with the autoimmune junk.
Just checking to see if others ever have this constellation of symptoms together. Irish

[slccom]

I haven't, but I sure hope these pass quickly for you!
Hugs, Sharon

[Myshkin]

Your legs sound exactly like mine. They're driving me absolutely crazy! Mostly because I can do nothing to make it better. Pain killers do very little.

My breasts are fine, but the rest. Yeah, sounds like me. Add to that some horrible inflammations in the vulva tissue. Auch!

I have been taking some iron supplements and I think they have caused my inflammation to go up. Docs are also talking about stopping the Plaquenil I have just started. I don't know...

[MaryBee7]

Irish, thank you for bringing up the neuropathic-type breast pain, as I have experienced that lately and put it in the farthest corner of my mind in order not to deal with yet something else.  The "tricks" we must come up with to alleviate pain/other is probably our best medicine...as with using cloth under bra strap to relieve pressure.  Can you imagine a doc saying "have you tried putting a hankie in your bra?"       Am certainly not laughing at you, just sending you love. 

S-t-r-e-s-s  ..... !  And what it does to us still amazes me.  No doubt your husband's illness has exacerbated and increased body response.  Since there is no Sjoggie Spa located in any of our towns and cities...designed exclusively for us to flee to before a Stress Cycle hits, we have to come up with our own.  Has anyone experimented with saline rinses for the nose ulcers, for instance?  I'm thinking saline may soothe and rinse the irritated tissues and help heal?

I had sinus surgery years back before dx ... and now glad I did ... hoping it means I headed off some of what you are going through, Irish.  Is your ENT well educated about SjS?  And hoping, empathetic as well! 

Probably The Worst "constellation" of symptoms I had took place during a move from apartment to house, in 95 degree heat, with helpers who did not want to be there ... and everyone was Super Crabby.  The month leading up to the move and a month beyond it ... I was really sick and had no idea why.  Hives, weight loss, blepharitis & conjunctivitis, chills and low grade fever, stomach upset and my legs were killing me.  Looking back I know brain fog and cognitive problems were so bad then...that I just couldn't piece things together or even spend too much time wondering why I got sick like this.

This is too long of a chapter, sorry.  Hope more will share, offer suggestions, and encourage you today, Irish!

[Linda196]

While I've never had those particular symptoms gang up on me, the first thing they triggered in my none too reliable brain was liver symptoms. I'm sure you are followed closely with your IVIG, but when did you last have bloods for a liver panel?

Granted not all the symptoms fit, but don't you find that when you feel "yukky" all the other things that may have been there but ignorable come crashing to the surface? Almost everything with the exception of the symptoms directly focused on the parotids, on the could be a result of changes in liver function.

Please let us know what the ENT says, and I hope you soon feel better.

[Joe S.]

To paraphrase Mark Twain, "It's not the same but it does rhyme". I got very sick the end of December and have been having similar problems since we came home. I just went to ER this week with left chest pain that shot into my hands and fingers. The cold weather has affected my butt and thighs making them stiff and hard to move. I love my big heating pad. It also helped with my left side pain.

A quick trip in the car and I have to spend 1 to 3 hours with my heating pad so I can move better.

Added stress has triggered other issues for me. So I would understand that it could have an impact on others.

[sjenny]

Symptoms sound like a really bad flu virus, but could any of this be related to side effects from meds?

Could you throw on a few shirts and just go without a bra for a time?  I'm pretty busty and I've done this and yes, I try to stay out of the public eye, so to speak, when I do.

Are your stools clay colored?  That could indicate liver problems.

[Bucky]

(((((Irish))))), I don't have any of those symptoms you mention - but, just wanted to send you a hug and hope you feel better real soon.

Hang in there, Irish.

Hugs,
Bucky

[Tivia]

Gosh Irish, you sound like me, a plethora of problems and stymied doctors

[Scottietottie]

((((( Irish )))))

I sorry you are feeling so poorly. I KNOW stress makes everything worse and you are under a lot of stress. You need some serious pampering but that's not very realistic.

You need to rest up and ride it out. Easier said than done.

I hope your symptoms ease up for you soon. Look after yourself as much as you can.

Take care - Scottie x x x

[irish]

THanks for all the input.

First of all, my "boob" has recovered miraculously. The old hanky trick did its job, I think. No clay stools. I just had all my blood panels done and liver function is fine.

I have always had the problems with tendons throughout much of my illness the past 15 years or so. I even have swelling above my left heel on the inner aspect that no one has even been able to figure out.I finally came to the conclusion that it is inflammatory process in the soft tissues around the tendons. It never changes---just is there!!!

I am having some neuropathy in the back of my neck and it seems to be related to the face pain. Years ago I had about 8 hours straight of severe face pain, spasms that was almost unbearable and at the time I had no clue what it was from.

I imagine I will complain and whine and by the time I get to the ENT everything will have settled down. This darn disease can be so fickle and make it look like we are imagining the pain, etc.

Back in the 70's I had made a long distance move, painted, sanded, stained and varnish a 4 bedroom house along with taking care of the house, hubby and 3 kids. The 2 sets of inlaws and 2 sets of BIL/SIL came and stayed for some days--not all at the same time, but in about 4 weeks time. By the time they left I had diarrhea that last that lasted almost 6 months. Lived on potatoes, poached eggs, dry toast and rice but never lost any weight. It stopped one day and that was the end of it. Stress, you say?? You are darned tooting. Irish

[eija]

I even have swelling above my left heel on the inner aspect that no one has even been able to figure out.I finally came to the conclusion that it is inflammatory process in the soft tissues around the tendons. It never changes---just is there!!!

Back in the 70's I had made a long distance move, painted, sanded, stained and varnish a 4 bedroom house along with taking care of the house, hubby and 3 kids. The 2 sets of inlaws and 2 sets of BIL/SIL came and stayed for some days--not all at the same time, but in about 4 weeks time. By the time they left I had diarrhea that last that lasted almost 6 months. Lived on potatoes, poached eggs, dry toast and rice but never lost any weight. It stopped one day and that was the end of it. Stress, you say?? You are darned tooting. Irish

My horse has a swelling like that Although hers is better with regular steady-level excercise.

And it's just the way you said: Fickle. I too feel stupid complaining problems that have ceased by the time I get to the doctor - only to start again the very minute I walk out of the door.

Hoping your stress will ease up and you'll feel loads better really soon!

[eyeamdry]

It's a little late, Irish, but check your private messages.

[irish]

Lucy, Saw them earlier. Thanks for the info. Irish

[slccom]

The muscle pain sounds an awful lot like fibromyalgia.

I hope you are continuing to feel better!
Sharon