Checking in

[acesew]

Hey I was just checking in on everyone.  I haven't had a real good week but will get over it. I have been battling the fatigue, soreness, and not been able to keep a lot of food down.  Meds aren't always seeming like they are helping.  Most of the time, I am still swelling up like a balloon.
I just wanted to see how y'all were doing, and here I am going on about me.  I hope all of this pollen hasn't been giving y'all too much trouble.  We are suppose to be getting rain today.  Yea!!! We need it to wash it all out of the air.  Well I better go.  Take care everyone.

Stephanie

[acesew]

thanks and I keep all of y'all in my thoughts and prayers also.  Hope y'all are doing okay.

Steph

[tonyad]

   Hey there!
I have been thinking about you and how you were doing.
Reading your recent post....that sounds miserable!
i keep you in thought and prayer. Hopefully this will clear soon.

Take Care,
~Tonya

[acesew]

I know how you feel.   I went to the doctor today and told him about the bad swelling.  He noticed it because I gained 7 lbs in a difference of 2 weeks of being in to see him.  My big thing is I am swelling so much this time that I am having to my new jeans for work and have bought several sweat pants to wear at home.  And then my breasts are swollen so bad that they are very swore and hurt.  I can feel the skin being stretched to its max.  So I had to buy new shirts because of this too.  I am having to spend too much money just because of some swelling that will disappear later.  I hate it.  And then the dr I went to today basically told me that he was in over his head and didn't know what else he could do.  He did give me a shot of lasix which has helped some.
I am just ready to find someone who cares about helping me.  It is crazy.  I am glad your kidneys are okay.  My swelling usually comes and goes also.  It is just this time it has stayed for a while for some unknown reason.
Keep me informed.  I will also keep y'all posted.  Thanks and take care of yourself too.
Steph

[karinosa]

Hope you are feeling better, I know that Lupus can be quite hard to deal with, my brother has it and when it is active there are days he cannot even move without being in pain, I was tested for Lupus but came back negative.

I also got my results from the doctor and my kidneys are working just fine, she doesn't know what the cause of my swelling is.  Now my swelling comes and goes, I get it around my nose and cheek bones, my hands, my feet and lower part of my legs and that's it, it is just frustrating not knowing why, I'm kind of thinking could it just be yet another POTS symptom?  I don't know.

Anyway I thought I would check in on you and let you know I have results but don't know why the swelling.  If I find out more I'll make sure to post.

Take care,

Karin

[tonyad]

   Well you rest as much as you can.
Wondering why you can not get a grasp on the
pain?  Does this happen periodically with you?

<>
~Tonya

[acesew]

I am doing okay today.  I am kinda tired.  I still can't get the pain under control, but I'll deal with it.  Hope you are doing well.  Steph

[tonyad]

  Just checking in with you ton see how you are doing.
Been thinking about you. Hope your weekend goes well

Hugs,
~Tonya

[evo123]

You are in my thoughts and I hope that they figure this out for you soon.  You have enough to deal with x

Let me know how you get on with this x

[acesew]

that is something I am going to talk to my dr about next week.  especially since i keep having UTIs.  All I know for sure is i am almost constantly swelling.  even my chest cavity swells fairly regular.  I am still learning about this and my mother has been diagnosed for several years and we still don't know everything.  oh well.

[evo123]

Hiya,

Sorry to hear you are having a bad week, maybe it is the air as a lot of us here seem to be having a hard time with this lately :( x  This said it's nice to see you on the forum.

I have read that it is not adviseable to take a diuretic when one has an illness with the autonomic nervous system when there is a posibility of low blood volume involvement.  Taking these would make you much more symptomatic and as you experienced dehydrate more so.  I would definately steer away from those.  

I do not know much about Lupus, so I may be TOTALLY off track here, but isn't swelling from lupus found in the connective joints, i.e. elbows, knees etc, and when swelling is found in the face, arms , legs etc, Lupus Nephritis is tested for?  Has this been ruled out for you?  After initial urine tests are done, if it is supected then doesn't a kidney biopsy have to be done?  As I say I may be so wrong , but if this hasn't been looked into it would be worth asking about x

[acesew]

They tell me the swelling is from the Lupus.  Basically my body is full of inflammation.  I have tried diuretics, but seem to dehydrate when I start them.  My hands and legs swell the most often.  My face will swell quite a bit too.  It is actually kind of funny when my face swells.  I can tell it is happening, but my coworkers will look at me and ask if I have been stung by something.  It gets that bad....I have also noticed that the more I exercise, even just walking, the more I swell.  Go figure.

Karin--Keep me up to date with what you find out. I am on a or a couple of anti-inflammatories, but they don't seem to help and cortisone doesn't help either.

[karinosa]

Hi Stephanie!

That is not good that your week is not going well, I know how you feel, there are days that I cannot cope as well as others, I know a lot of these symptoms are here to stay and for the most part I just deal with them as they come, but there are some days that I am just so tired of feeling sick or something new appearing!

It made me curious you mentioning about the swelling, for the last 10 days or so I have started having some swelling too and my doctor can't explain why it is happening, it comes and goes, it is mostly on my hands, my legs and feet but only from the knee down, and my face - mostly my nose and around my cheek bones.  

They have tested my thyroid, and now they are testing my kidneys, no meds for the fluid retention as they are not sure if that's what it is.

Would like to hear if you know what causes your swelling.

Here hoping that you are feeling better soon!

Karin

[tonyad]

   Sorry that your week has not been going well :(
The fatigue is about to kick my butt too.  I have had the
same feelings before where it seems as though my meds do not work as well on
some days than others. I wonder why that is??  Anyone else have that feeling?

     Why are you swelling so much? Do you take diuretics also?
So glad you checked in but sad that you are having an oFF day
Hope your night goes better and your tomorrow is even better.
Hugs to you,
~Tonya