The worst flair I've had

Ha!!Ha!!, you sound like me-taking so many pills , I wouldn’t care if i took anymore (if it was up to me , I would not) , am so tired of taking so many, just to make it through the day, man will this ever end???..Beverly L.

Yes, I get that all the time. This past 4 days I've had the swelling along with the rash like welts all over my body. Very itchy and irritating, sometimes painful. It will start to subside in the next couple of days. Not being treated with meds yet, go back to Doc next week.

Don't panic with the swelling, it will go away in a few days.

I also have swelling of the hands, feet and face. My fingers are like sausages, can't wear rings anymore :(

Hi, sorry to hear this !! You are having a serious Flare , when my body has all these going on at the same time I Really shut down for a couple of days. Rest is always helpful for me , also take you meds., make sure that your household understand what is going on at that moment and it would be helpful if they make sure you are able to go through this moment with you !!! But also call the doctor nurse to let them know what is going on at the moment. Write this down to help you to remember , include everything…Beverly L.

Yes. My hands swell randomly every day and feel like they will split like a sausage casing. My feet swell as well. They are a 6 1/2 but often swell up a whole size, and I have to wear flip flops. My feet go numb when I am on them for very long.

I have it very often! I am on diuretics and still get it almost routinely. I have found that sleeping with a pillow under my feet seems to relieve much of the lower swelling over night...however...and this seems odd I know; I have also found that walking a fair distance...like a half a mile or so...also seems to relieve the swelling quite a bit. I can't always walk easily or without discomfort...but when I make myself...the swelling is diminished by the next day. Good luck with this. It is MOST annoying I know. Sometimes I can only wear one shoe...or boot...of a pair...and have to find something else to wear on the worst of the swollen feet.

Hello Dobby,

Sorry i'm late on replying back...got good old Lupus mimicing tennis elbow now, christ it never ends with one issue after another and that's my RANT mate. lol

How are you now after passing out as you want to be careful as there's many reasons for that occuring and seeing a neuro for your nerves is good as i've told many members to get it checked as i have nerve damage but i will say this it does'nt help in many issues.

Love Terri xxx

Dobby said:

Thanks Terri. I'm actually going to see a neurologist to check on my nerve involvement with my SLE. I passed out Monday from simply trying to work from my home office instead of my bed where I have been working the last few weeks while I have been flaring up. My rheumy was very concerned.

Tez_20 said:

Hi Dobby,

Definitely Raynauds and the colour changes happen when the blood vessels shut down and when our hands do get slightly warm they open back up and that's where the redness comes from but the white patches is where the vessels have'nt opened enough.

Dobby it's also important to have a nerve test done to see if you have nerve damage at all, i was tested twice years back and i have nerve damage which makes it even worse, it's worth asking about.

Terri :)

Dobby said:

I do feel a sort of numbness, it is more often a burning pain for me and my palms get hot. In the winter I have severe numbness in the tips of my fingers. They turn completely white where I have no blood flowing to tips of my fingers at all. I took a picture to show my doctor how bad it was. I'll attach it. This has been from my Raynauds syndrome. My doctor had me increase my procardia dosage and it has helped with the numbness.

MrsQ said:

Do either of you experience numbness in your hands?

Hi Terri!

I have actually not been doing too well. :o( My lupus symptoms seem to be under control with the prednisone, but I continue to have chest pain, gasping for breath and dizziness. My hemoglobin & hematocrit levels are high as well as white blood cells now high. I can hardly have a conversation without getting out of breath. All very scary!

My rheumy had me come in immediately after my worst episode of chest pain/shortness of breath on Monday morning when I walked from my car to the hospital for my heart echo test. Of course by the time I laid down and had the test, heart was back to normal rhythm and nothing shows up on tests. I have an appointment with a cardiologist and an oncologist on Tuesday to try to figure out what is going on with me. I live alone (all of my family is out of state) and my boyfriend has been working out of town, so I have been trying to continue working from home, rest enough to have the energy to drive myself to my appointments and not collapse in the meantime! It is exhausting!!!!! I'm praying for some answers very soon, because I can't stand being so weak & lifeless. Sorry to whine, but it has been a rough couple weeks! Hope you are feeling better soon!

-Dobby


Tez_20 said:

Hello Dobby,

Sorry i'm late on replying back...got good old Lupus mimicing tennis elbow now, christ it never ends with one issue after another and that's my RANT mate. lol

How are you now after passing out as you want to be careful as there's many reasons for that occuring and seeing a neuro for your nerves is good as i've told many members to get it checked as i have nerve damage but i will say this it does'nt help in many issues.

Love Terri xxx

Dobby said:

Thanks Terri. I'm actually going to see a neurologist to check on my nerve involvement with my SLE. I passed out Monday from simply trying to work from my home office instead of my bed where I have been working the last few weeks while I have been flaring up. My rheumy was very concerned.

Tez_20 said:

Hi Dobby,

Definitely Raynauds and the colour changes happen when the blood vessels shut down and when our hands do get slightly warm they open back up and that's where the redness comes from but the white patches is where the vessels have'nt opened enough.

Dobby it's also important to have a nerve test done to see if you have nerve damage at all, i was tested twice years back and i have nerve damage which makes it even worse, it's worth asking about.

Terri :)

Dobby said:

I do feel a sort of numbness, it is more often a burning pain for me and my palms get hot. In the winter I have severe numbness in the tips of my fingers. They turn completely white where I have no blood flowing to tips of my fingers at all. I took a picture to show my doctor how bad it was. I'll attach it. This has been from my Raynauds syndrome. My doctor had me increase my procardia dosage and it has helped with the numbness.

MrsQ said:

Do either of you experience numbness in your hands?

Hello, keep resting as much as possible , try to let a neighbour know to check on you from time to time when you are at home alone , or a close friend . It is always good for you to have a back up person, well plan when that happens , just in case something serious happens never just be alone !..Beverly L.

Hello Dobby,

Sorry i went off lastnight when you replyed but i was tied and it was late here.

Well i am pleased your Lupus symptoms are under control with the prednisone as you need it by the sound of how your health is otherwise.

Well come Tuesday i hope they can finally sort out what's causing this...as i suffer with breathlessness but i have Lung disease which does'nt help besides bronchitis bad and they want to run furthur tests and i cancelled it...it's way to dangerous for me regarding my organs.

I've been looking at what you've mentioned and it maybe a cause of your oxygen levels being down and i also looked up what you stated also - (My hemoglobin & hematocrit levels are high as well as white blood cells now high) and this link may help you more on understanding why.

http://ic.steadyhealth.com/high_hemoglobin_and_hematocrit.html

Plus regarding breathing etc and not finding the problem, this link explains about all heart conditions linked to Lupus.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroom.aspx?articleid=291&zoneid=8

I am sorry your in this way and my thoughts are with you deeply and DON'T get over doing anything.

Your loving friend Terri :) xxx



Dobby said:

Hi Terri!

I have actually not been doing too well. :o( My lupus symptoms seem to be under control with the prednisone, but I continue to have chest pain, gasping for breath and dizziness. My hemoglobin & hematocrit levels are high as well as white blood cells now high. I can hardly have a conversation without getting out of breath. All very scary!

My rheumy had me come in immediately after my worst episode of chest pain/shortness of breath on Monday morning when I walked from my car to the hospital for my heart echo test. Of course by the time I laid down and had the test, heart was back to normal rhythm and nothing shows up on tests. I have an appointment with a cardiologist and an oncologist on Tuesday to try to figure out what is going on with me. I live alone (all of my family is out of state) and my boyfriend has been working out of town, so I have been trying to continue working from home, rest enough to have the energy to drive myself to my appointments and not collapse in the meantime! It is exhausting!!!!! I'm praying for some answers very soon, because I can't stand being so weak & lifeless. Sorry to whine, but it has been a rough couple weeks! Hope you are feeling better soon!

-Dobby


Tez_20 said:

Hello Dobby,

Sorry i'm late on replying back...got good old Lupus mimicing tennis elbow now, christ it never ends with one issue after another and that's my RANT mate. lol

How are you now after passing out as you want to be careful as there's many reasons for that occuring and seeing a neuro for your nerves is good as i've told many members to get it checked as i have nerve damage but i will say this it does'nt help in many issues.

Love Terri xxx

Dobby said:

Thanks Terri. I'm actually going to see a neurologist to check on my nerve involvement with my SLE. I passed out Monday from simply trying to work from my home office instead of my bed where I have been working the last few weeks while I have been flaring up. My rheumy was very concerned.

Tez_20 said:

Hi Dobby,

Definitely Raynauds and the colour changes happen when the blood vessels shut down and when our hands do get slightly warm they open back up and that's where the redness comes from but the white patches is where the vessels have'nt opened enough.

Dobby it's also important to have a nerve test done to see if you have nerve damage at all, i was tested twice years back and i have nerve damage which makes it even worse, it's worth asking about.

Terri :)

Dobby said:

I do feel a sort of numbness, it is more often a burning pain for me and my palms get hot. In the winter I have severe numbness in the tips of my fingers. They turn completely white where I have no blood flowing to tips of my fingers at all. I took a picture to show my doctor how bad it was. I'll attach it. This has been from my Raynauds syndrome. My doctor had me increase my procardia dosage and it has helped with the numbness.

MrsQ said:

Do either of you experience numbness in your hands?

Yes your not alone... I go threw that a whole lot esp. during major flares. I use a lot of ice packs heating pads and Epsom salts. along with my meds. I would let your doctor know as soon as you can. Hugs friend.

Erica