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Sjogrens Topics => Living With Sjogren's => Topic started by: ktfabian on April 30, 2008, 04:22:17 PM

Title: How do you describe "uncomfortable"?
Post by: ktfabian on April 30, 2008, 04:22:17 PM
Hi all,
I've sort of been lurking the past week or so.  After my two rituxan infusions in early March, I started feeling more energetic and have gotten out more.  But as usual, when I start to feel good, I over do. And now I'm feeling...uncomfortable.

So I'm going to the doctor tomorrow, and I want to explain to him how I feel, but I need more than just "uncomfortable".

I have a swollen knee, the joints in four of my fingers have gotten larger and are stiff, and the fingernails are growing out funny.

I have a mild ache all over that at night, or sometimes in the daytime hour, turns into a giant ache.  My back has been grumbling and my pain doctor is blaming it on my Sjs and says there isn't alot he can do.  Over the weekend, when the pain got really bad, his partner increased my Lyrica from 100mg once a day to two a day, but I've had to drop it back  down so I can stay awake to drive tomorrow.

I'm antsy and can't find a comfortable way to sit or stand or walk.  I go to the pool and it's a crapshoot whether I'm going to feel a whole lot better or hurt like h*ll for the rest of the day.

I'm sleeping in the recliner someone just gave us.  It was built for an oversize man and it's cushy and in I can sleep at least 3 hours before waking up and being "uncomfortable" again.

I'm having a terrible time with brain fog...I feel like I barely get through a sentence anymore without losing the word I want to say, and my typing isn't any better.

I'd like to blame all this on the fact that my son is being deployed to Iraq by the end of the year, but all of this started before we got the news. It adds to my discomfort, but more in the way of mental discomfort and tears.  We all are talking openly and often about the deployment and giving each other strength to deal with it.

My eyes, my mouth, my skin are dry and no amount of lotion or drops seems to really help, though I do still have tears to cry.

Oh, and I look like a train wreck.  I have bruises on top of bruises and I can't tell you where most of them came from.  I hate going out because someone always says, "Oh, that looks awful, what did you do!"  I feel kind of funny saying I don't have the slightest idea, but no, my husband doesn't hit me.

I'm just SO stinking uncomfortable, but complaining about these things makes me feel whiney and small. So, what do I tell the doctor?

Maybe I'll just print this out and give it to him.

I'm open to suggestions. 

As always, Thank You.

Title: Re: How do you describe "uncomfortable"?
Post by: salsen on April 30, 2008, 05:49:07 PM
Tracy   LOL   Sounds like a plan to me.  You expressed yourself very well, both your physical condition and your frustration with the situation.  Print it and let the doctor read it.  Can't see how he could miss what is going on with you.   Know what you mean about skin problems.  Every little thing causes issues.   I went to the Urgent Care on Saturday because somehow or another in one days time I had a large infected bump on the back of my neck.  Don't know what caused it but suddenly it has me on major antibiotics to clear it up.  The meds are working but has got me dragging all this week.   Good luck to you   ---  hope the doctor takes the time to listen to you.  Keeping you in my thoughts.
Title: Re: How do you describe "uncomfortable"?
Post by: YICKelly on April 30, 2008, 06:58:30 PM
Tracy I think letting the doctor read it is a great idea.  He won't interrupt you with questions that way! LOL  Will be praying for your son and your family.
Title: Re: How do you describe "uncomfortable"?
Post by: ktfabian on April 30, 2008, 07:11:08 PM
My Thanks to both of you.

After I wrote that, I decided taking it with me was the way to go.  It's already printed and in my purse.

I appreciate the prayers, my son can use all that are sent on his behalf.

Salsen, please make sure that the bump is clearing up.  Keep a very good eye on it.  I had a bump last year that, due to lack of interest on the part of the ER doctor and the residents in my family doctor's practice, turned into MRSA- a very nasty, nasty bug.  I don't want to scare you, just be sure it's going away!

thanks again, Tracy
Title: Re: How do you describe "uncomfortable"?
Post by: lynnmarie219 on April 30, 2008, 08:08:03 PM
Good luck at your appointment tomorrow Tracy! I hope it goes well and the doctor "gets it" from reading your post! Good idea!

Let us know how it goes!
Title: Re: How do you describe "uncomfortable"?
Post by: Pooh on April 30, 2008, 10:43:20 PM
Good luck Tracy.  My prayers and thoughts are with you and your son. 

Let us know how you make out at your appointment. 

Hugs and God Bless,
Title: Re: How do you describe "uncomfortable"?
Post by: Katybarstool on May 01, 2008, 12:17:29 AM
Hi Tracy

Goodluck from me too - and a big sisterly hug.

Title: Re: How do you describe "uncomfortable"?
Post by: ktfabian on May 01, 2008, 09:03:49 PM

After an agonizing 3 hour wait, I got to see the doctor today and I gave him my post...he was a bit surprised and his first response was, "Can I keep this??"

Well, yeah.

Anyway, he hit most of the points. He's made quite a few medication switches, knocking down the neurontin (which I have to run by the pain doctor as he's the one who prescribed it), bumping up the Lyrica, adding Arthrotec - he thinks the problems with my knee and fingers are osteoarthritis rather than rheumatoid arthritis, but he's ordered Xrays of all to make sure.

He bumped up my Arava and lowered my Cymbalta, despite the instant tears when I asked how I can keep the stress of my son's deployment from sending me into a flare (he said we're going to have to watch very carefully for any signs of infection or increased symptoms and feels I should probably keep in touch with my therapist as the time draws near.)

The fact that the Rituxan works for a short while is a good sign that it will work for me, he said, it's just going to take a few more rounds of infusions before we get the lasting affects.  Unfortunately, I can't do another set of infusions til the fall, thus the increase in Arava.

Are you following all of this....actually, he really did address just about everything I wrote about.  I came home with a stack of prescriptions and several orders for tests...I'm just overwhelmed tonight.  I did write everything down so that I remember it all

The brain fog may be made worse by my meds, he said, or it could be the effects of the severe post concussion syndrome I had following a car accident in 2003.  If it doesn't clear up as I make the medicine changes, I'll have a neuropsychological evaluation done.  I had one done after the car accident, so they'll be able to compare.

The wait was awful today because I was so, yeah, you guessed it, uncomfortable.  I finally got up and went for a walk down the street and back because I was getting so sore from sitting.

So, all in all, it went well.  I think taking the post really was the best thing I could have done, because I would never have gotten through all of the issues if I hadn't.

I'm still really uncomfortable tonight, but at least I know there's a plan in place that will hopefully start making things a bit more, well, comfortable.

Thanks so much for the hugs, help and support. There are days when I don't know what I would do without the understanding that I find here.
Title: Re: How do you describe "uncomfortable"?
Post by: Katybarstool on May 02, 2008, 01:29:13 PM

What a wonderful result.  I work in the area of epilepsy, which is the main use in the UK for Lyrica and Neurontin, and many people feel foggy with them, particularly if they are introduced too quickly, or at too high a dose.

I hope you feel the benefit of the changes soon.