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whyus
@whyus

Posts: 8
Joined: May 12, 2017

Systemic lupus erythematosus (SLE)

Posted by @whyus, May 20, 2017

About 3 weeks ago my dermatologist took a skin biopsy. The pathology report came back as a definitive diagnosis of Systemic lupus erythematosus (LUPUS)

I can’t ses an RA Specialist until September. But I just wondered if any of you have experienced any of these complaints of mine:
(1) Tired. I could sleep all day
(2). Burning/itching under my skin. It feels like ants or something. But scratching does no good at all.
(3) have trouble sleeping.
ThNks for sharing with me.

Liked by chinasmom

REPLY

Sorry to hear of your diagnosis , but that’s the same way I feel! Hopefully the Rheumatologist can help with your symptoms! I wish you the best! I will pass on any information that might be useful. When I go to my next appointment .

Hello @whyus and @regeanna, I’m also sorry to hear of your diagnosis. I’m hoping others will join in and share information that may be helpful. I don’t have lupus but do have other autoimmune diseases and understand the uncertainty you may feel. Mayo Clinic does have some information that may be helpful – http://mayocl.in/2qJqF78.

There is also another discussion on Tumid Lupus with SLE Symptoms that you may want to join and ask your questions – http://mayocl.in/2qJpF2Q

In the meantime, I’m tagging others who have mentioned or are familiar with lupus @kanaazpereira @paulamiddleton @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @kdubois @rayhastings @wmoser2613 @buttons @aimeenc, do you have any insight that you can share with @whyus and @regeanna?

Hoping for answers for you soon.

John

John, thank you so very much! I will look forward with eagerness to hear from others.

@regeanna

Sorry to hear of your diagnosis , but that’s the same way I feel! Hopefully the Rheumatologist can help with your symptoms! I wish you the best! I will pass on any information that might be useful. When I go to my next appointment .

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Maybe you and I can struggle Thur this together.

Liked by chinasmom

@johnbishop

Hello @whyus and @regeanna, I’m also sorry to hear of your diagnosis. I’m hoping others will join in and share information that may be helpful. I don’t have lupus but do have other autoimmune diseases and understand the uncertainty you may feel. Mayo Clinic does have some information that may be helpful – http://mayocl.in/2qJqF78.

There is also another discussion on Tumid Lupus with SLE Symptoms that you may want to join and ask your questions – http://mayocl.in/2qJpF2Q

In the meantime, I’m tagging others who have mentioned or are familiar with lupus @kanaazpereira @paulamiddleton @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @kdubois @rayhastings @wmoser2613 @buttons @aimeenc, do you have any insight that you can share with @whyus and @regeanna?

Hoping for answers for you soon.

John

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@whyus, I suffered from drug-induced lupus versus SLE, but one thing was for sure… I was incredibly tired but had a difficult time sleeping due to pain. I hope and pray you find relief soon.

@regeanna

Sorry to hear of your diagnosis , but that’s the same way I feel! Hopefully the Rheumatologist can help with your symptoms! I wish you the best! I will pass on any information that might be useful. When I go to my next appointment .

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Yes, let’s do that! I’m here for you and all luppies and autos!

Hello @whyus i am really sorry for your diagnosis. I have been diagnosed with SLE, fibromyalgia, Hashimitos etc. I know exactly how you feel. However do not give up. We all are with you.
One thing i would like to mention is, keep working out. Even if it is just walking for 20 mins. Try to do it everyday even when fatigue works hard to put you down. Trust me, you will see a difference in a week itself. It won’t take away the fatigue or pain but you will notice a spike in energy. And every single spike counts .
Warm hugs. Stay strong.

Butterfly girl, thank you so much. I can’t express my excitement upon seeing a msg. You all have given me hope. Please stay in touch.
Gifs bkessinfs

@butterflygirl

Hello @whyus i am really sorry for your diagnosis. I have been diagnosed with SLE, fibromyalgia, Hashimitos etc. I know exactly how you feel. However do not give up. We all are with you.
One thing i would like to mention is, keep working out. Even if it is just walking for 20 mins. Try to do it everyday even when fatigue works hard to put you down. Trust me, you will see a difference in a week itself. It won’t take away the fatigue or pain but you will notice a spike in energy. And every single spike counts .
Warm hugs. Stay strong.

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Hello @butterflygirl,

Welcome to Connect. Thank you so much for joining, and I’m certain @whyus and other members in this discussion sincerely appreciate your suggestions.

We have other active conversations taking place in the Chronic Pain group that you might be interested in checking out:

Need some guidance and input!!! (Fibromyalgia): http://mayocl.in/2rYdwGC
Fibromyalgia Pain http://mayocl.in/2hgUGcv
Please feel free to scroll through the discussions, join in with questions and suggestions, and tag members as they have all posted about issues with fibromyalgia, pain management and medications.

@butterflygirl, would you be comfortable sharing a little more about yourself? When were you diagnosed with these conditions and how have you been coping thus far?

I’m sorry I can’t help. I suspect I have this. My dermatologist said I did, then the next Dr. told me I have auto immune disorder. I was tested for allergies. None. So why do my eyes swell? Why do I get hives? Aches & pains? I have given up. I was told to take allergy medication.

Hi @tunkins1,

Welcome to Connect; I’m so sorry to hear about your symptoms. Have you had a chance to check out this discussion about SLE as well:
Tumid Lupus with SLE Symptoms?: http://mayocl.in/2qJpF2Q

@tunkins1, when were you diagnosed? Would you share your insights as to how you have been coping thus far?

@regeanna

Sorry to hear of your diagnosis , but that’s the same way I feel! Hopefully the Rheumatologist can help with your symptoms! I wish you the best! I will pass on any information that might be useful. When I go to my next appointment .

Jump to this post

Hello Whyus, hope this post finds you doing better! I had a lupus flare that was sever two weeks ago. Joint pain, muscle pain, pleurisy, fever, and sever stiffness. The Rheumatologist put me on Plaquenil so hopefully that will kick in, I stayed in prayer those days when the pain was severe, that helped me cope with it, James 4: 8. I hope you and all the other luppies continue to share your stories, it helps knowing we are not alone and can find comfort in one another. Please take care!
Regeanna

Yes. I think the itching is the worst. I had itching on my calves before I was diagnosis
With RA

@oregongirl

Yes. I think the itching is the worst. I had itching on my calves before I was diagnosis
With RA

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Now I have cream Dr gave me and it works. I am I. Calif for weekend, when I get home will post med. I was itching Al over, my back was worse.

@johnbishop

Hello @whyus and @regeanna, I’m also sorry to hear of your diagnosis. I’m hoping others will join in and share information that may be helpful. I don’t have lupus but do have other autoimmune diseases and understand the uncertainty you may feel. Mayo Clinic does have some information that may be helpful – http://mayocl.in/2qJqF78.

There is also another discussion on Tumid Lupus with SLE Symptoms that you may want to join and ask your questions – http://mayocl.in/2qJpF2Q

In the meantime, I’m tagging others who have mentioned or are familiar with lupus @kanaazpereira @paulamiddleton @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @kdubois @rayhastings @wmoser2613 @buttons @aimeenc, do you have any insight that you can share with @whyus and @regeanna?

Hoping for answers for you soon.

John

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Hi. I just wanted to share some information we found out about my sister. She had drug-induced lupus from Inderal. She stopped taking it but was not aware that it caused the drug-induced lupus and a year or so later went back on it or an equivalent beta blocker. She developed symptoms again and I did research and found out the connection and contacted the company. Their response was no one knows how the second exposure 2 one of them will workout. This was many years ago and the second exposure did go into full lupus. I guess I'm just wanting to warn you to stay away from similar drugs that gave you the drug-induced lupus. they may have more knowledge now than they did back then but it is possible to go into full lupus.

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