I am bad off! Can't wait for my husband to get home

536 Views 17 Replies 15 Participants Last post by ColleenT, Jun 9, 2008

LBH

Discussion Starter · Jun 5, 2008

:worried: God help me! That is all I got to say. This is a bad bad flare. Just called my Rheumy but another doctor was on call and all he did was tell me to take 20mgs of extra prednisone tonight and call my Rheumy in the morning.
I had a flare like this after having a nerve biopsy several several years ago and that flare landed me in the hospital with CNS Lupus. Not too mention it took two years for me to actually get out of that one.
This morning I had numbness and tingling all over my body. Arms, legs and my joints feel like they are on fire. Burning sensations and feel very hot to the tough so there is indeed inflamation there going on. Been popping pills all day like candy.
Let's just say an after surgery lupus flare that is attacking my nervous system along with the flare itself. The nerves in my body right now are going balistic! Even getting the parkinson shake in my left arm like I did many years ago.
If I would have known this before that surgery I would have never gone through surgery at all. I know one thing, if I am no better tomorrow or get worse off tonight while my husband is here. It's the ER tonight. But hope I can survive the night and shake this mess off with the meds I am already on. I was down to 5mgs of prednisone too and already took 20 mgs this morning before talking to the doctor. Took another 10mgs right after that. So I guess we shall see what 50mgs does.
He told me to take 20 because I was on 5! Okay! I did that this morning. So then I took another 10 before calling him and now he is telling me to take 20 tonight. Already took my other meds for lupus this morning, afternoon and now we are going on evening.
I'm saying some words right now but surely not placing them on the forum. Following the rules! I hope:hehe: My knees are swollen, my hands are swollen and they very seldom swell. I normally just get the nasty joint pain. Sweats popping off my face. Probably have a fever because I feel like it's one there but can't find my thermometer and I am seeing spots on the walls.
Not a good day. And I was getting so excited about healing up after this surgery and getting out of my house and finally having a half way normal life. Well there goes my thrill! Looks like I'm going to be prisoner in my house again a bit longer than I had hoped for. How depressing. I'm so depressed right now and want to cry. I hate lupus! I really hate it. This disease gets nasty!

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confused1

· #2 · Jun 5, 2008

(((((((( LBH))))))))) Hun, you are truly and well sick. If you can, go to bed and try to rest somewhat. I know how hard that sounds and how impossible it may be. Definitely, if you need to head for the ER, go. That's what emergency care is for. The depression is, of course, part of the flare. And it's that same old, same old feeling that all of us know of recognizing a bad place because we've been down that road before.

Don't despair. This isn't the other flare, it's THIS flare and nobody knows if it will be shorter or longer than anything that's happened before. Give your poor mind a little break and do some easy breathing and try not to worry any more than you have to.

Keep us posted. I'll be sending you prayers and good wishes and healing thoughts. I understand how alone you feel right now, and how betrayed by your own body. It stinks. But remember, that body holds YOU and that makes it valuable and wonderful, no matter how bad it hurts.

Hugs and much care,
Sunny

ALWIN

· #3 · Jun 5, 2008

Hi ((((((LBH))))))

I am so srry you are in this state. You sound as though you are climbing the walls. It is so long sice iwas in anything like that kind of pain I cannot remeber it - just thank goodness I am not there right now.

I really hope you can at least get some sleep atsome point. Even exhausted sleep is better than none.

If you need ER you go asap. Nothing owrse than uncontrolled pain.

Sorry about typing.

sending you all the best I can muster.

:hugs: :hugs: :hugs:

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LBH

Discussion Starter · #4 · Jun 6, 2008

Seeing my Rheumy this morning

Good day friends! Getting dressed early this morning so I can go see my Rheumy today. Plan on getting in that office before the weekend gets here. Surely don't want to go to the ER this weekend because I didn't get seen today. Still flaring something aweful. I noticed alot of folks have their names in here so I placed my name on the forum instead of my initials. I use my nickname of Lynn but my real name is Lynette!
Will let everyone know how things went. Hopefully they will give me something a bit stronger than what I have been taking before. That pain can get you down. Thank-you so much for sharing and caring with me. The support here is wonderful. :hehe:

LBH

Discussion Starter · #5 · Jun 6, 2008

LBH;510720 said:
Good day friends! Getting dressed early this morning so I can go see my Rheumy today. Plan on getting in that office before the weekend gets here. Surely don't want to go to the ER this weekend because I didn't get seen today. Still flaring something aweful. I noticed alot of folks have their names in here so I placed my name on the forum instead of my initials. I use my nickname of Lynn but my real name is Lynette!
Will let everyone know how things went. Hopefully they will give me something a bit stronger than what I have been taking before. That pain can get you down. Thank-you so much for sharing and caring with me. The support here is wonderful. :hehe:

Lynette Harrison Diagnosed 1992 CNS Lupus & Vasculitis

pennylp

· #6 · Jun 6, 2008

Hello Lynette,

I am so sorry you are going through such a bad flare... I hope you get some help at the rheumatoligist today... I just wanted to let you know that I thinking of you....

Love Penny

LolaLola

· #7 · Jun 6, 2008

Dear Lynn,
Hello! I have CNS flares too and they are bizarre. I can really sympathise with you. Let's hope the extra steroid knocks it into shape.

Meanwhile try to stay calm. I know it is hard.
Hugs, x Lola

flutterbye

· #8 · Jun 6, 2008

Lynette, I am sorry that you are in such a bad way. I hope that you did see your rheumatologist today, and that they are able to help with what you are going through. Hope things improve for you very soon.

Hugs xxx

lazylegs

· #9 · Jun 6, 2008

Hi Lynn,

Everybody reacts differently after surgery. I felt great after my last one. Sorry to hear you weren't so lucky. Hopefully the doctor can help you.

Take care,
Lazylegs

LoopyLoo

· #10 · Jun 6, 2008

Hi Lynn,

Just wanted to stop by and say that I hope you feel better soon.

Hugz, :hug:

Pam xxx

karen.w.

· #11 · Jun 6, 2008

Hi Lynn

I'm sorry you are feeling so rotten :sad: How did it go with your rheumatologist?

I hope you feel a lot better soon.
sending you gentle,healing hug's :there:
love karen x

neongirl

· #12 · Jun 7, 2008

Lynn,
I hope that by the time you read this you have been seen by the Dr. and recieved helpfull treatment. Maybe they can get this flare stopped quickly, and then your recovery can go full steam ahead again

Sending you hugs and good thoughts.

LBH

Discussion Starter · #13 · Jun 7, 2008

Still flaring!

Hi friends! Well I did actually get to see my doctor and my last labs before my surgery were showing a flare then also but not as bad. He ordered more labs and decided to keep me on 50mgs of prednisone until I see my Rheum on Monday. They could not fit me in on Friday so I had to see my regular doctor.
Actually like the regular doctor better because he listens and this Rheumy I have seems to never take the time to listen. Alway's goes by labs and I test negative alot. But I tested positive so I am pretty sure I'm in a nasty flare. I also tested positive for Rheumatiod Arthritis and my regular doctor decided to do that test several weeks ago after doing an Xray on my foot and he noticed pretty bad arthritis going on and was concerned about me having Rheumatiod. And yes I do! Another diagnoses just to add to my list of problems.
I still feel like a skunk today. And very fatigued. So sleepy and tired and the pain is just as bad. No relief in sight just yet! Day 3 of the Lupus flare! Yippee!

And not helping much with our heatwave. It got to 103 degrees in my area today. That is hot hot!
Too hot! My husband was so sweet though. He cooked dinner this evening and has been helping me all day. Most of the time, I do all the cooking. But since our children are no longer around as much he has been enjoying being a cook in the kitchen. And he see's I have been sick.
Maybe tomorrow will be better. I hope! We shall see! Wishing you all a great weekend and hope many are feeling good and not poorly!

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lefty3369

· #14 · Jun 8, 2008

Hi Lynn,

Sorry to hear you are in such a bad flare. I hope things get better for you. If not, by all means go to the ER.

Take care
Lori

macfamily53

· #15 · Jun 8, 2008

Hi Lynn

I just wanted to let you know that i am really hoping that this stinken flare goes away real soon((((husg)))).I agree with you about this painful disease but sometimes i sure am glad i did meet the sweetest people in here though so i guess if i had not had lupus i would not of had the great friends i have

.Just trying to be a little postive anyway.Hang in there and i sure am hoping it is a short flare for you((((hugs)))).

Tammy

Jirel

· #16 · Jun 9, 2008

Hey Lynn, hope you feel better soon. Sorry I haven't been able to post much - take it easy.

kjoyinri

· #17 · Jun 9, 2008

Hope you're feeling better.

Hi Lynn, Just wanted to add my well wishes to everyone else's. I sure hope you feel better soon.

Kathy

ColleenT

· #18 · Jun 9, 2008

Hi Lynette,

How are you feeling today? I am so pleased you have such a supportive husband.

When I read this thread I realised that you had so kindly replied to my new thread somewhere else. I wish i'd known then that you were having such a tough time at the moment!! I want you to know that I'm thinking of you and I hope you see some good improvement really soon!

Please keep in touch and let us know how you're doing. We all have our ups and downs and sometimes when the downtime comes we have to let others do the supporting. Good old Bob Dylan sang in "Forever Young":

May God bless and keep you always
May your wishes all come true
May you always do for others
And let others do for you.

Its your turn to let others do for you now!!!!! Rest and rest and rest.

I wish you enough!
Colleen

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