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.

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

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?

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

On recently did I learn I have Lupus (SLE). This news is not welcome at any age. I am 77 and am in good condition, except as I expressed to my internist “just lupus”.

Hi

Welcome to the club. Did you know there are just over 1.6 million of us and did you know if you took 10 people with Lupus and put them in a room there would be 9 women and 1 man. So I am upfront I am the 1 man. Have to tell you before going any further, I am proud to be part of such a select group.

I am definitely not an expert nor do I have any answers. I have been diagnosed with Systemic Lupus Erythematosus [SLE] for short. In my studies I have learned we don’t know very much. I can say I at the senior age of 77 will die with it NOT FROM IT.

The biggest challenges I’ve experienced is:

Fatigue

Sensitivity in my hands and fingers

A bluish/red discoloration of my hands and fingers

Lower back pain [from merely noticeable to extreme]

I have practiced yoga for over 20 years. I have taken Lupus on as a challenge. At an earlier point in my life (age 8) I was given a set of York Barbells. I spent the better part of the next 12 years lifting weights.

I am no expert but I have some ideas on movement that may help you and all my other Sisters and Brothers in this Elite Unit.

Namaste 🙏🏻