[raggedyann1]

I have written various times the past few months in my quest to find out what is causing my edema and then my flaring since the beginning of January. I had an appointment with a cardiologist this week and of course all my records did not get to him, not sure who to blame for that. I had a echo-cardiogram(sp?) in November so he didn't know why my rheumy wanted me seen. Since the Pulmonologist told me my heart was fine. Blamed my edema on my meds and venous insufficiency. I wonder about the venous insufficiency since my edema improves everytime I am on Prednisone.

I am glad of course that my heart seems fine and my lungs are fine. My kidneys seem to be fine as the urine and bloodwork all come back negative. My joint pain is only some worse so I am quite confused. I really am trying to pace myself but I tire real easily. This afternoon I was all prepared to come to boards after I did a bit of quilting. A bit of quilting was maybe 35 minutes. I found myself so tired I couldn't focus my eyes so off I went. It was dinnertime before I was awake again.

As many times as I have flared over the years I have never dealt with exhaustion this severe that I can't accomplish much on any given day. I have always had to pace myself but never this bad.

Fortunately I see my rheumy on Monday so we will see what the next plan of attack is. I have a feeling I will be referred to another Cardiologist and my rheumy will explain why to me. Hoping for more prednisone but not counting on it knowing my rheumy as I do.

Thanks,
Karen

 

[Lyn57]

Hello Karen,

I am so sorry that you are feeling so unwell and so tired. :hugbetter: Sometimes we just have to vent to someone who will / can understand and that is certainly the case here.

The only thing I can suggest is to try not to expect too much from youself while you are having such a bad flare and to be kind to your body, if you need to sleep then sleep.

I know it feels dreadful not achieving things, because that is they way I am right now too. Even holding your arms up to type on the computer keyboard is exhausting. But fingers crossed this will pass.

I hope your visit to the rhuemy goes well and he gives you something that can help.

Sending you lots of hugs (gentle ones) and good vibes too.

Lyn x :give_rose:

 

[ALWIN]

Hi Karen

Just wanted to sympathise.

I have no good words of advice,but i'm sorry you are not well. I think these weary tired bouts are awful. Sometimes i seem to get like that when my aches and pains are no worse than usual, but i can barely keep my eyes open.

I went back to bed at 1pm yesterday and did not wake up until 7pm when the telephone rang. I then slept all last night as if i'd never been to bed, where as other times, after sleeping in the day, i would feel shattered, but not be able to sleep the next night.

It's really perplexing.

I hope you get to the bottom of the oedema thing soon.

Hang in there and take care of yourself

 

[lin]

Hi karen, i think it all stinks, im so sorry your feeling so fatuiged, i know how you are feeling

its so horrible this desease is really it is, i hope your rhuemy can help you tomorrow though, you know funny how we say we cant understand this? when i say this to my friend she says you know why, the lupus, but i sometimes thinks surly it cant always be the lupus?

Karen im not much help am i, but i am thinking of your bad days hun, i have been of work now for some months i just cant get going too, with legs and fatigue


((((((((((((Hugs)))))))))) Lin xxxxxxxxxxx:there: :kiss:

 

[Katharine]

Hi Karen,

I'm sorry to hear that things are so bad right now and that you seem to be going around in circles with the docs and any solution to this. It is so frustrating.

I know exactly what you mean about that tiredness. I mean it is kind of common to feel tired with this disease but that "other" degree, the one where you find yourself falling asleep anywhere and not being able to wake up - even if the phone goes or the doorbell rings - that is awful. It feels almost like one would expect a comatose state to feel - ARRRRGGGGGHHHH
I have been feeling that way the last three weeks following the problems I had breathing. I think it is beginning to improve slightly but am staying on a nice easy schedule today as I have to be up tomorrow morning.

sending lots of strengthening hugs and hoping that you will find some kind of answer soon,

:grouphug2:
Katharine

 

[Joandublin]

Hi Karen

Im really sorry to hear how fatigued you are:sad: and I hope the Rheumy can provide some relief for you or at least some insights. The difficult thing is not finding out any 'apparent' cause. I think you need to impress on your Rheumy how debilitating this is for you. I know it's prudent to limit prednisone but you have to balance this with quality of life and it sounds like your quality of life is very compromised right now :hugbetter:

Let us know what happens on Monday. In the meantime all you can do is sleep - you dont have any other choice really.:hug: I hope the family are behind you and helping out.

Much love
Joan:rose:

 

[JudifJ]

Hi Karen

Just sending my love and ((((((hugs)))))) to you as I am thinking of you. Hope you get some answers tomorrow.

Take care

Judi xx

 

[sushi]

raggedyann, i hope everything goes well for you on your appt.

i hope you can find relieve soon, i know exactly how you feel. i went to the mall with my family last night and as soon as i got there the fatigue started acting up i could nt do anything we had to leave about 1/2 hr. after we got there i felt so bad for my family. when i got home i just cried myself to sleep.

I think that i probably did too much in one day and paid for it at the end.
i dont feel guilty if i cant get something acomplished i just go with the flow because i know whats going to come next. feel better soon.

 

[LoopyLoo]

Hi Karen, :hugbetter:

It's rotten you are feeling so rough right now and the Cardiology appointment must have added to your frustration. I'm pretty new to the fatigue thing and I'm still not sure how best to deal with it myself.

The rheumy I saw last week admitted that the biggest problem he sees in Lupus patients is the fatigue and how difficult it is to manage. Good luck for tomorrow and I hope things get easier for you soon.

Hugz, :hug:

Pam xxx

 

[Maia]

What medications did the cardiologist think were causing the edema? Any idea? Probably not able to change them anyways... but something to ask the rheumy about.

It is soooo frustrating to feel so awful and just not have any answers for it; moreso to not have any solutions. I have been in your shoes, and it's a terrible feeling. It happens to people not diagnosed yet... but will also happen sometimes even after you're diagnosed. It's almost worse then!

I hope you have a good appt on Monday and get into see a better cardiologist if that is still considered necessary by your rheumy. Take care, and (((big hugs))).

 

[Salopsally]

Hi Karen,
I too am sorry you are feeling so bad. Although I am also encouraged that it is not just me.
This fatigue thing is so hard to live with. When I was in a flare I was so bad.. well you are just ill and thats it.. but now.. the flare has subsided.. but the fatigue still stays. I also have very swollen legs.. presume that is oedema. (not sure how you spell that).
I used to love to shop till I dropped. Now I drop after about 30 mins.. hardly long enough to shop.
Ive changed my shopping habits to smaller easier stores to get to and get round. Its very boring.
I feel very guilty because I need to sleep a few times most days. I just think I must be a fat lazy old lady these days.
Im not sure how to cope with this either. I look ok. I look a strong healthy lady how is it is have the stamina of a gnat.. well they look like they have more energy than me.
The thought of going for a walk daunts me. My feet hurt always in shoes.. my legs are weak and I get out of breath after a few steps.. Nothing wrong with my lungs so what is it. I have no answers... wish I did.
Hope you get to feel better very soon. I did have 7 years respite from this so Im wishing that for you too.
Luv Sal x

 

[confused1]

Hi Karen, just wanted to add my voice to those wishing you well and sympathizing. When we have symptoms that seem to have no connection to anything else the frustration just grows. Fatigue is the worst. It robs us of time with the activities that usually get us through difficult days.

I hope you find relief. I'm really glad your heart and other vitals are in good shape. Although we all want answers (and fixes!), sometimes it's better to keep living with a mystery than to find something worse.

Hugs,
Sunny

 

[keebler]

Hi Karen,

I have been wondering how you are. I was hoping and praying you were feeling better. I am sorry to hear that you aren't.

I was wondering if you ever had your thyroid checked. The T-4 is the test I am talking about. Here is some informations about it.

This test measures the amount of thyroxine, or T4, in your blood. T4 is one of two major hormones produced by the thyroid gland (the other is called triiodothyronine, or T3). The thyroid is a small, butterfly-shaped gland located just below the Adam's apple. This gland plays a vital role in controlling the rate at which your body uses energy.

My T-4 was very low, I was so very tired. My doctor increase my thyroid med. until it got up in the high end of normal range. It has helped some. I still have that fatigue but it is better.

I will be thinking of you tomorrow for your rhumey app.
Take care.
Love & Prayers.
Lyn

 

[Clare.T]

Good Luck for today's visit Karen. I suppose they would have picked up some sort of anemia. It seems foolish to suppose they wouldn't have but you never know, like my hubby seeing urologist but the diabetes not being checked for so not identified as the cause of the probs that had him go to uro in the first place

Many hugs
Clare

 

[Christine UK]

Karen good luck today..

hope it is a succesful appt.

 

[cath]

Hi Karen,

Sending gentle hugs your direction. I hope the appointment goes well and they can do something helpful for you:hug:

X C X

 

[bugsy]

Hi Karen :hug:

I am so sorry to hear that you are having such a rough time of it. The exhaustion is something that only someone who suffers from lupus can understand. Its way behond the tiredness that i had ever dealt with previously, so i totally sympathise with you and hope things improve for you real soon.

I will be keeping my fingers crossed :fingers: for you and hope that your rheumy visit works wonders for you.

Take good care of yourself, :hug: Jo :hug:

 

[runnergirl]

Hi Karen,

I just wanted to send more hugs and healing vibes.

I hope you get some asnwers soon and that your appointment goes well today. I know it can be life can be difficult went you can't seem to function. Even though the pain can be bad...sometimes the fatigue is even more disturbing.

 

[karen.w.]

Hi karen

I was wondering how you were...I'm sorry you're having such a bad time :worried: you must be feeling disheartened with it all :sad:

good luck with your appointment today :luck: will keep my fingers crossed for you.

sending you gentle,healing hugs :hugbetter: :goodvibes:
take good care..karen x

 

[Soundy]

Wishing you well at your appoitment...

I have edema problems and put through ringer by rheumy
and cardiologist and urologist and still no cause found ...
kidneys went blinky for a while but are back to normal ...take
dyazide daily to keep fluid down or my joints ache...just have to
make sure I am near a bathroom for 3 or 4 hours after taking it

Good Luck