Rheumy appointment.(Losing strength to keep fighting.)

[Shani]

Hi everyone,
I have just returned from my Rheumy appointment.

I went there because I was having a lot of pain and nothing showed up in my recent urine sample.
While I have all the symptoms of an UTI, especially lower tummy pain.

He examined me well and asked what issues I'm having.
Told him about the joint complaints, fatigue, malaise/flu-alike feeling, rashes that disappear on the same day.(which he said to take pictures from whenever I get one)

He can't find anything like inflammation that is present on my joints.
Does make me wonder why some are swollen and have redness?(To me it does, same when mom looks at it)
I certainly don't understand.

He says he's pleased about the lab results and believes me if I say that I have pain.
Tells me that I tend to worry whenever I get a new symptom or notice any change(not a positive one that is).
Which I do admit is true, told him that aswell.

He said he understands it's not easy, with the two years of being told 'it's in your head' and having this disease itself isn't fun either.
But I cannot stay forever in this 'cycle'.

It's just frustrating me that I'm hurting so badly and they don't see anything.
Nothing when phyiscal examining (such as inflammations etc) and nothing showing up in samples for the tummy/bladder pain.

He was saying that if you're a bit stressed etc you tend to flex your muscles more which obviously makes them hurt a lot more.
I do believe that but I don't just have muscle pain, it's also jointpain.

I know he know that it's that too.
But as I said I just am lost at the moment and feel really upset about nothing really showing up.
I'm only 17 soon and is this how my life is going to be?

Yes, I'm a very positive minded person and I always smile.-
But this time I just kind of collapsed when I got out of his office and was on my way home with mom, started to cry.

Rheumy said he doesn't want to add any medications at the moment.(Uusally he does that at the more specialised hospital, which I go to next week.)
He did copy all the papers of my recents results such as Neuro, the biopsy from a skin rash back in July, recent papers of whenever I visited him etc. -
To take it to the more specialised hospital which I go to next week (for children untill 18 only)

On one of the papers I read he is planning to put me on a different antimalarial/hydrochloroquine.(from my visit two weeks ago that is)

I mean, yes that's great..
But Plaquenil did not help me at all with jointpain or however.
Only with mouthsores and rashes, which are the least annoying issues to me.

It makes me wonder: What about things like DMARDS, other options for pain relief?
I didn't ask as this time as I just wasn't really sure what to think and was listening to him.
i know I need to pull myself together and fight this, be pleased about the Lupus being rather 'calm' as the blood shows.
But I just can't at this time.

He's  great Rheumy but I really don't want to be a 'plant'(basically lifeless and not being able to do anything) for the rest of myself.
And really would like to know if there's options for me to try, I know that some people are on certain drugs for pain relief.(Other than Steroids, Nsaids, painkillers)
Even when it are just joint issues and not really organ involvement.

I was fine at the office as I was smiling, but my Rheumy just is too funny and was trying to make me smile and saying I need to be strong and talking to me so I just didn't want to start cry.
Maybe I should have instead of hiding how I really feel about things.
But that's ok I guess.

Aswell he is getting my bladder checked out on the same day as my Rheumy appointment in the children Rheumatology hospital.
It's called 'Uroflow' and it's to see the functioning of my bladder.
He think it's possible that I have 'Bladder spasm' or something like that.

Also need to do a 24 hour urine sample.
I guess we'll see what it will say, I'll know the results next friday.

I already told mom to ask about meds next week and what his plans are.(regarding treatments/med options)
I'd really finally would like to know.

I'm trying to stay strong and wait untill what next week will bring.
But it's getting really hard to do that at the moment.  

[Cheryl]

Shani,
I'm so sorry to see that you are discouraged.   As you mentioned, you are always a positive person, and you are a strong encouragement to all of us.  There is a cause for your pain, and it will be discovered when the right test is done.  I hope you get that information and the help you need very soon.   Maybe the new urine culture or the change in meds will be just what you need. 

In the meantime, come in here and vent any time you feel like it. Everyone has "down" times.  I hope talking about it helps your frustration.   We know that your pain is real, and you are not a complainer!
Hugs
Cheryl

[cremer]

I feel so sorry for you, seventeen is no age to be going through the symptoms this nasty syndrome brings.  

You seem to have a caring Rheumy who I think would love to help you more, but unfortunately his hands are a little tied if he cannot spot this inflammation and other problems you have.

How about bringing your mum along next time to stress how bad this making you feel, it might also help for some moral support. Also show your feeling s a little more, shed a tear or two and you never know it might work.

Keep us posted

Mick

[mink]

My dearest Shani,
    I'm so frustrated for you! (couldn't help but shed a few!)  
I've been in and out of the hospital myself the last couple of months because the pain gets so unbearable and I really don't know what else to do. Just like yourself the swelling is present yet they find nothing in my blood except for a high wbc . I went to a pain management doctor today in the hopes that he could tell me different. He asked me a whole bunch of questions while writing in his notebook, examined my swollen hand and asked me what were my symptoms when I first got diagnosed....I told him the same thing and he basically said then there you go it's all part of sjogrens .He said I was just gonna have to take the percocet until my flareup died down. Well so much for crunching my hope bubble! !
So sweety I feel you when you say U R losing strength and I guess we all kinda get like that sometimes in our search for answers. But what I like to do when that happens is think about the people around me that are fighting right along with me and draw strength from them (in your case your mom) .
I think  sometimes and say to myself maybe, just maybe if I throw myself on the floor and start crying like a baby then they'll realize in how much pain i'm in!! But I always lose my nerve and smile just like you honey lol Your pain is real and we understand that here in this forum.
Hopefully you'll get some sort of relief soon, plus i'm sending strength, good vibes, hugs and  :-*down your way
You be sure to keep us posted  

PS: I never looked at your age before so I didn't realize how young you were. you are so mature for your age but none the less should 'nt have to be going thru this

[Bucky]

(((Shani))),

I'm sorry you are hurting so and the doctor can't seem to pinpoint your problem.  It has got to be discouraging to know something isn't right and they can't find it.

I don't think a lot of x-rays, MRI's, CAT scans etc. are good for us - but, some times you just need to have that done to see what's going on inside. 

We should have been born with two layers of skin.  One would be a see-through kind that covers our veins, etc. - the other would be our skin, like we have now.  Then, they should have thrown in a zipper . . . so, the doctors could un-zip our skin to see what's going on inside.         OK . . . maybe not!  LOL

Hang in there Shani - at almost 17 (when is your birthday?), you have had a lot to deal with in your short life and I think you have handled it extremely well.  You are wise beyond your years!

I hope you find some pain relief soon and the doctors can figure out what to do for you to help keep the pain manageable for you.

Hugs,
Bucky

[Shani]

Thank you Cheryl, you're too sweet.

I just kind of feeling a little disappointing as I've already spent two years of my youth-
Visiting doctors to figure out what's wrong.
And now that I know, I am still in a lot of pain.
I'd just love to try different medications and see if one of them would work for me.
I know they all heave their own side-effects but I'd be willing to try and have a better life quality.

I will try to wait untill next week and see what it will bring, especially regarding the Uroflow test and the 24 hour sample.
Fingers and toes crossed it will show something that explains my bladder pain already.


Thank you for your sweet response Mick.

I always bring mom to all of my appointments as support+advocate.
We just tend to hide how we feel(especially me) instead of really showing it.
It's not always very easy to talk about your feelings when labs for example are excellent-
And the physical examination seems good+overall 'good in shape'.
Then I just felt a bit like: Oh well, just leave it I guess and smile...
But I'll try to tell him how I feel next week about certain things he might say/suggest.



Thank you for your response and sharing your experience Mink.

Feels good to know that i'm not alone struggling with all of this.
I try to think of all the people that are there for me and care about me aswell.
It hurts me to see them upset because I am sad.
But sometimes I just can't hide it any longer and I'd rather show it than let it build up on the inside.

Just wish people would be able to stand in our shoes for a day.(Especially doctors)
It'd open their eyes for sure.
Thank you for the good vibes, strenth and hugs.
I'm sure they'll help me on my appointment next week.


Thank you Bucky.

Your posts always make me smile somehow.
I love the idea of having a skin with two layers LOL.
It does sound a bit freaky tho.
Might scare them to see what's going on inside there!

All of the testing does get quite exhausting, especially if nothing shows up every time.
Of course it's not fun if soemthing does show up but I'd rather know than having to just ignore it and try to live with it.
I think we already have enough things to cope with, oh the 'pleasant' surprises Sjogren brings us!
Thank you very much again and I'll make sure to keep everyone posted.
My birthday is on the 18th of April.
I'm an Easter baby.

[dbab]

Hi Shani,

I'm so sorry you are going through this.  It breaks my heart that it is happening to you at such a young age.  We tend to take our youth for granted when we are at that age.  You are so strong but you need to realize that you do have your support system, we are here for you but most importantly is your mom.  She is there and she is your strongest advocate.  You are trying so hard to be so strong in those appointments I know, I have been there and even my age as a grown woman I have broken down many times in the doctor offices so do not be ashamed at all to do that.

Please tell your mom that you want her to convey all the feelings, pains, trials, and complications that you are going through to your doctors.  Sometimes its just easier.  Being in the doctors office, it does get overwhelming and a bit intimidating.  Once we start talking, we sometimes lose focus or the conversations start going in other directions and we miss important points.  With your mom there, you can make sure that you cover everything.  Have all things written down, and make sure you check it all off as you bring it up and cover it with the doctor.  If you are not satisfied with an answer, keep asking.  You have a right to know what is going on with you.

The doctor may be, unconsciously, treating you differently because of your age.  He may be handling you very cautiously.  You need to let him know that he can be honest with you about what is going on and that you would appreciate that.  This is something that will affect you for the rest of your life and you are wanting to take charge of your health.

I hope it gets better for you Shani... we will always be here for you!

[Shani]

Thank you for your response Dbab.

I agree 100% to everything that you've said and adviced.
Me and mom definitely are going to put on our 'bad shoes' if it's necessary.(Hopefully not though)
We just want to know what the plans are regarding future, treatment and why or why not he may not try certain things.
It's important to have a good relationship with your doctor and one of the main things in that is: Be able to talk about everything in a honest way.

It definitely isn't easy to talk about how you feel, but mom makes it easier as she knows me very well.
I do think it's time to do something about all of this and know what the plans are.

[flutterfly]

OH NOES...MY LIL' PIXIE SIS...this just WON'T do!!!

okay i will start that sjogrens ^body suit^ so we can slap it on rheumy!
that way he can feel the joints 4 HIMSELF!
it might take a smidge due ta my snowday hands!

U NEED TA NOT FAKE IT WHEN UR IN THERE! STOP IT! "CAUSE I SAID! (yes i yelled that)!!!
more like SCREAMED...ECHO...ECho...Echo...echo!!!  

but sweets they don't know how bad it is...we can't put "em in ur pocket & take 'em home w/us!

'member luv...it took 10 years 4 this pixie ta break the ^F^ DOWN!
now looky...answers galore!!! (not that i want ta deal w/any of it)!!!

don't wait 'til u go ^postal pixie^ on their tushes!!!    (but it does work)!!! tehehe!!!  

does ur mama speak up in appointments?
(i'll cum next time if u want) i'm told i got the LOOK!

it's called sero~neg & like we talked b4...sumtimes u looky like the healthiest kid on the block on PAPER...
but thats when ya feel the worst on the insides!!!

YOU DON'T HAVE TA KEEP A STIFF UPPER LIP 4 US!!!

my mama used ta call the friends that only stuck 'round 4 the good times...
FAIR^WEATHERED FRIENDS! & i for 1 will be there through the worst storms that life can throw @cha!

u are so dear ta me bright^eyed pixie sis!!!

leroy can stay longer sweets!!!

when u start feelin' a touch better i'll catch ya up on my sh#t^storm!

(((ME))) hugglin' (((u)))!!! here's sum pixie kisses 2!!!      

~*flutterfly...lookin' @ finners darin' them ta not work while i start on sjogrens ^body^suit!!!*~

edited ta ask...what happened ta jaw surgery?
wasn't that suppose ta be on the 18th? or did i get that all sideways?!? (could be me)

[Crymeariver]

I guess all I can say is that you don't need a specific diagnosis for every ache and pain to feel like total and utter rubbish.  With an AI disease you just get to feel like trash here, there and a little bit of everywhere    But it can and does get better with the right treatments.  

My problems started out when I was 17ish too with an overactive thyroid. Have they checked your thyroid? I remember a lot of abdominal pain and being scoped and stuff at the time. Barium enema. Ugh.  Later in college I would have inexplicable joint pain while in air conditioning that would disappear.  I was never able to step aerobics without knee pain and I was super skinny.  Not exactly overloading my joints back then.   Now I know in hindsight I was also developing Sjogren's and RA.  The eye docs and dentist would comment about the viscosity of saliva or eye problems through my twenties but never put 2 and 2 together.

I do believe the doctors are tailoring treatment due to your age.  The stronger drugs can have very serious long term side effects.  I've been on low dose steroids for only 7 years and I already have early osteoporosis.  Remember this is a marathon and not a sprint.  Be sure to give medications time to work.  Plaquinel can take 3+ months to be effective but it worked for a lot of us.  I know, I remember three months is FOREVER at that age    

You are at a good time to try things like ice/heat, stretching, yoga, joint conservation techniques, diet ... to help how you feel.   Look at all your daily activities and see if the backpack over the shoulder, the shoes, the short skirts freezing your knees (from personal experience lol) and whatever else and determine if they are contributing to any physical symtoms.  You probably feel you aren't able to do anything right now as it is but you are still possibly doing too much, putting too much strain on joints etc.  It's a fine line though because getting physically de-conditioned from lack of exercise and moving feels bad too.

I hope you find some balance between medical intervention and proactively managing your own health/disease.  

[shortstuff]

Shani,

I'm sending you some hugs and praying for you.  You are much too young to be dealing with this and I hope somehow you find relief soon.  I'm wondering if your bladder/tummy pain is a symptom of Interstitial Cystitis.  I have urethral syndrome, which is basically an offshoot of IC.  It causes burning in my urethra and feels much like a UTI but my urine always comes back clean.  It's strange when you wish for a stupid bladder infection figuring at least they can give you antibiotics and it'll go away, and very sad when that's not the case.    There are medications and treatments for this if you are diagnosed.  I also had a uroflow (urodynamics).  It showed the doctors what is going on in my bladder and will absolutely confirm if you are having spasms.  If so the doc can give you medication and possibly physical therapy, which has helped a lot of women.

Anyway, I wish you the best an I really hope that your doctors find a combination of medications that will put you on your way to better days. 
Take care, sweet girl!
Shortstuff

[tired of it]

Hang in there,, I wish I could tell you it gets better, but I;m not so sure myself anymore,, there is no cure, they treat symptoms, and it seems everyday one symptom just overshadows another, till you get to the point you just almost feel like giving up, dont give up though,, just have to fight it the best way you can,,

[Madison Granny]

Have they tested you for overactive bladder.  Before I  knew I had mine it felt like I had a constant bladder infection.  It's hard for a person with SJS to take the medicines for OAB.  They seem to dry you out even more.  I finally had to have an Interstim implanted to help with mine.  Sending you all the best wishes in the world.  Hope you find out what is wrong soon.

[Shani]

Thank you Pixie Sis.
You always just know what to say.
Hug
I told myself I wasn't going to put on the brave face again if I don't feel lie it.
Yet, I did it again.
I think it's just some kind of exhaustment and frustration that you just don't bother going into a 'discussion' about it or however.
I know that it took you 10 years to figure out what's wrong, meaning you were pretty young too.
I'm happy it took 2 years by me but even know that I know-
It still feels as if it's some kind of long search and waiting game in order to really start feeling better.

Me and mom will put on our 'bad shoes' next time and keep the medical books in purse if needed.
About the Jaw surgeon, I cancelled it because I am developing a cold that is automatically going to my sinuses.
Making them all icky and stuffy.
So I didn't feel it the mood to let them take picture of my face etc.
It was on suggestion of Gp because I already felt not great the day before my Jaw surgeon appointment.
So I now have my appointment on the 22nd of February.
Love ya very much.

Thank you Crymeariver.
I totally agree on that.
AI disease are no joke and aren't pleasant at all.
That's a quite young age aswell, mine have started since I was 14.
Also the issue with my Thyroid appeared at first but it wasn't really that bad to be put on meds yet or that it was really affecting me.
At the moment that is stable aswell and I do need to go back to my Endocrinologist to get my Thyroid levels checked.
My Neuro has checked the recent bloodwork and it seemed ok as far as she can check up on Thyroid levels.

I always knew I was developing something like Sjogren, but I had never heard of Lupus and was thinking I had something like RA.

I do try to think that it's due to my age that he's wanting to avoid the strong drugs for as long as he can.
I know they have a lot of side-effects just like all of the drugs do sadly.
But it's just sometimes frustrating to continue waiting for 'improvements' and get disappointed each time because even when finding things that work like I found my painkiller at the moment-
It seems as if it just always has to be something popping up sooner or later, making the pain worse and make the relief less or anything alike that.

I guess I could try and hope that the new Hydrochloroquine brand that he'll put me on next week most likely-
Might give some relief in jointpain hopefully.
I know it takes a few months to work, Plaquenil took 6 months and then I had to quit it due to Polyneuropathy issues caused by the Plaquenil.(Atleast that's what they think most likely, but never know with the sneaky AI disease)
It can also take months to go away but it's at the moment the least annoying thing to me and only tends to get a bit annoying at night when I am wanting to sleep.

My Rheumy said that overall I'm pretty good in shape.
Well not like I can run the 5 mile but it's not that I'm cripple basically.
I do have very weak muscles and am very skinny, not a lot of strenght.
I get phyiscaly therapy twice a week but am considering to buy some fitness gear like a home bicycle to train on.
So I can hopefully work on geting fitter a bit.


Thank you Shortstuff
I've had a few episodes on and off that I kept have frequecy to urge and always little bits only.
Or else I had to get up 40 times each night to go pee.
Aswell it burns when I do.
I had about 3 times that I had that and suddenly it disappeared a bit again for a while.

Now all of the sudden it started with an UTI most likely but when I quit the antibiotics-
Only less than a week and the pain in my lower tummy area-bladder spreading out to my genitals has returned.
I do think it's pointing to IC or anything alike that.
Most likely something chronical or well atleast something that will require more drugs.
Thank you again for your sweet wishes and help.


Thank you Tired of it.
I'm trying my best to do that.
i can totally understand how you feel because I'm sure many of us will agree on what you just said.
It's all very complicated and definitely not easy to avoid stress from all of that.

Thank you Madison Granny.
Yes Rheumy mentioned a 'spastic bladder' which is basically an overactive bladder.
Said in my urine sample before the one I did last week (showed no UTI etc)
But the one before that showed a bit of proteins and white bloodcells?
Not sure if that would say anything or means anything.
But he is makin me do a 24 hour urine sample so I got this can thing with me and need to pee whenever I have to in it during a day and then bring it back.
Aswell he's making me do the Uroflow test for the bladder functioning next week.
I really hope something will show up, although I know it might requires more meds that have their own side-effects once again.

[Sha]

Shani~I am sooooo sorry you have been struggling this much lately!! 

You always have such a good outlook on things, so when I see you say you're losing the fight...I really worry about ya cuz if you're saying that...it has to be BAD!!

Please keep positive cuz somewhere....someone is going to have that AAWWWWWW MOMENT and find the right thing that works for ya and can give ya all the answers! I believe it will probably come in pieces if ya know what I mean

I know it is hard not to get discouraged, but ya have to be your own advocate and stand up to those who won't listen...or find someone who will! you and mom need to discuss whether ya need to change docs if they are ho humming while you are in pain!!

Love ya bunches!!

Sha