ongoing flare

[wifey1]

Anyone else feel like they're in a never ending flare?

I've been in one for over a year now, and it has been one thing after the other!  For example, out of the blue last week I had trouble moving my left arm.  I've had nerve/sensory involvement for the past year but never anything motor related.  Being able to not use a fork, lift my arm above shoulder level, etc was scary!  Saturday rolls around and my arm worked perfectly fine...and all my joint pain was back worse than ever!  Can't win...

I'm getting ready to see a new neurologist and a new rheumatologist in the next few weeks.  I'm hoping and praying that they'll work well together!  That's part of my problem with my current docs - the neuro won't touch anything relating to my Sjogren's, and the Rhuem keeps saying it's Neuro that knows the nerve related stuff better.  Tired of being turfed back and forth!

I don't know whether to push to be treated more aggressively?  I'm only 32 and have small kids.  This ongoing flare seems like it can't be doing good things for my long term health...?  But then, I know the more aggressive treatments carry plenty of risks themselves. 

[Carolina]

Oh, wifey, perhaps you are in more than a flare? 

Sometimes our conditions do add symptoms, and sometimes our conditions invite other conditions to join them!

If that is the case, surely one of your doctors will help you decide if you need to add to your treatments.

And sometimes a short course of Prednisone (or other corticosteroid) will interrupt the cycle.  You might ask for a brief course of Prednisone, like a pulse pack or whatever they are called?

You don't list your medications, so I don't know what you're already taking and hesitate to offer ideas.

As with most of us there is a combination of being patient to find the right doctors and right treatments, persisting in that course, and then accepting that to some extent we aren't going to be 'perfectly well' again.  Whatever condition of health we 'took for granted' before Sjogren's is unlikely to return completely.

As far as worry about the complications of various medications:  WE are all different, react differently, and need a certain amount of trial and error to find what will work for each of us.

And doctors do find it very difficult to treat complex cases and manage what they do with other professionals.  Have you been to a teaching hospital connected to a research medical center yet? Doctors there are often more collaborative and less 'turf sensitive' and also often more aware of the 'blended' nature of autoimmune related conditions at University hospital centers.  Sjogren's problems vs neurological problems really isn't a clear line, and there's no point in trying to draw one.

Relaxation and meditation techniques help me with the 'can't win' aspect of my conditions.  I do understand that being 32 with small children complicates your life, wifey.  It's a wonderful life and you want to be able to enjoy it and be there for everyone and yourself, as well.

Be gentle with yourself and your body.  It's doing the best it can, wifey. 

Hugs,  Elaine

[wifey1]

Ohh, sorry, meant to list my meds.  If I remember later I'll add them to my signature, but in the meantime:

Hydroxycholorquine (400mg), Lyrica (450mg), Lamictal (200mg), Methotrexate (20mg), Prednisone (5mg - routine), Protonix, Restasis, Evoxac, Dulera 200/5 (yay, autoimmune asthma), sumatriptan.  I also have tramadol and dilaudid for pain, but I try to stay away from them when I can, especially the dilaudid which I rarely take.  I take some other odds and ends (vitamins etc) but that's the big guns.

My current rheum mentioned the possibility of switching to the methotrexate shots.  The methotrexate makes a big difference but it seems like right around the time my body adjusts to the side effects, so does my joint pain and we have to increase it.  I don't care about giving myself shots - did it a lot when I was pregnant - but trying to figure out if there's an advantage to it.

As for research institutions, yes.  I live in the Baltimore area and connected with Dr. Birnbaum a few months ago.  But, he's only willing to act in a consultative role for my "regular" specialists, not take over my care.  I totally understand - it lets him continue to research - but it doesn't help much!

Usually when my joint pain goes out of control like this, I end up on a prednisone taper, but I'm trying to avoid that right now if I can.  Been on too many rounds in the last few months for my comfort level...

I have had blood work redone for lupus and other autoimmune stuff.  Everything other than Sjogren's has been negative, except my thyroid autoantibodies.  But since my TSH is ok, they're just keeping an eye on that - considered basically an incidental finding for now.

Fortunately I have an amazing support system that is allowing me to rest and take care of my body as best I can!  Don't know where I'd be without them!

[Ripvanann]

I was going to ask about your thyroid and then you mentioned it in your second post. You know this can cause all of your symptoms. Even the neuro stuff. Sometimes treating the thryoid is the way to go.

Also,  do you take a lot of folic acid with the methotrexate? I couldn't tolerate methotrexate,  but I do know that more folic acid helped with the aches. The injections are supposed to have much less side effects.  I would push for those.

I've had the same problems with neuro and rheum. My rheumy is at least, as frustrated as I am. All of my specialists push me back on him. He says that he's tired of it. They all tell me that the cause is SjS so treat the SjS.  Blaaah! Yes, definitely push for someone to wake up. You can't function like this.

Elaine is right, flares don't last a year. I used to think the same thing. When people would talk about flares, I would think "I feel that way all of the time, I must be in a constant flare." I wasn't,  I was simply not getting the proper treatment.

I'll be praying for you.

Grace and peace,

~Andrea

[Carolina]

Ok, wifey, you are already doing any and everything I would even remotely suggest.

You are in a very difficult place, and there's no two ways about it. 

I wish I could wave a magic wand.

I would highly recommend some work on alternative ways to deal with pain.  I know that sounds so 'touchy feely' and it really never appealed to me.  I've found it works, up to a point, meditation and relaxation.  I have to really refine my practice, wifey, because when the going gets really tough, it's hard to relax and meditate the pain away, I've found.

And yet, I know that we can focus our minds away from pain, and that it does work.  Still, I am so much older and have so many fewer demands on my time.  My heart grieves for you.  And yet again you must deal with what is in your life.  You have no choice.

I suggest the book How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers  by Toni Bernhard.  It isn't a be mystical and weird, it just uses great principles for thinking about what is going on......

And still I think of your age and your family............This just is what it is. 

Please let us know how you are doing, wifey.  We want the best for you.

Hugs,  Elaine

[wifey1]

Andrea, yes on the folic acid.  Shouldn't have left that off the list!  I take 1mg, which I don't know if thats a lot or a little, but more than I took when I was pregnant.  Thanks for the prayers - greatly appreciated, and very kind for someone you don't know!

Elaine, thanks for the book recommendation.  I'll check it out.

I agree with you guys - this is "more than a flare".  I'm just not sure how to describe it anymore!  I definitely have "acute flares" in the midst of this general decline.  But if this is just general decline...never mind, not going to go there!

Fortunately my kids are a pretty effective distraction.  I definitely notice more pain when I'm not so distracted.  And really, I've had a substantial peace in the midst of this.  But life with a chronic illness is HARD...and while I've seen that professionally, it's an entirely different thing to experience.  I've found being grateful for little things helps my perspective a lot.

Tonight the burning nerve pain appears to be back...but I'll just be grateful my arm still works!

[KRNLMBCH]

YES! YES! YES!  In a "flare" for a little over a year now?.with maybe two breaks each lasting no longer than three days in a row.  I agree with one of the other responders?.it's not just one long flare?it's unwanted company that keeps dropping in and never leaving. 
I know how you are feeling and I hope you get some relief and soon.

[wifey1]

...it's unwanted company that keeps dropping in and never leaving. 

I LOVE that description!  Perfect...but sorry you know exactly what I'm talking about!  Hope you get some relief soon too...