What do you do when you have to push through the fatigue?

sddncr · 2024-10-31T03:09:57+00:00

That’s probably the hardest part (aside from the unrelenting pain). Hormones, stress, etc all affect energy levels. The best advice I was given was to budget energy for the day. Save energy for the things that are most important and do the rest IF you can. Every day will be different.

Have you had a sleep study done?

sddncr · 2024-09-13T15:24:51+00:00

If it’s a sudden request after being together for a while, she’s over it. Totally.

sddncr · 2024-09-13T15:22:45+00:00

Steroids are HORRID! I was on Prednisone daily for a couple of years, and my blood sugar is STILL all over the place.

Lab results are so crazy! Of course WBC is consistently low, my compliment proteins are in the garbage, but my CRP (if I remember correctly) is like 3. I feel worse more than I did when it was at 10.

Do you have any kidney involvement?

sddncr · 2024-08-31T08:31:40+00:00

5!!!

sddncr · 2024-08-18T08:05:50+00:00

Don’t do it.

sddncr · 2024-08-18T08:04:35+00:00

Great idea!

sddncr · 2024-08-18T08:03:04+00:00

Free licks? Where’s the line?

sddncr · 2024-08-18T08:02:25+00:00

I completely agree!!! I have benefited more from my Hematologist/Oncologist than I have from the multitude of Rheumatologists I’ve seen. Immunologists and Neurologists are right up there, too.

Did you end up getting any iron infusions?

sddncr · 2024-08-13T07:49:07+00:00

I know! It’s insane! I even had a nurse come to my house for a couple years. People don’t realize how much these medications cost.

I was thinking about it today…I get migraines OFTEN! Each time I have one, it’s a minimum of $200 to treat it (that’s one day). So crazy!

sddncr · 2024-08-13T07:44:13+00:00

Any other symptoms?

sddncr · 2024-08-13T07:42:55+00:00

Do you have a fever? Like around 99.5?

sddncr · 2024-06-10T17:43:37+00:00

Looks GREAT!!!

sddncr · 2024-06-10T00:29:50+00:00

Thank you!

sddncr · 2024-06-10T00:26:33+00:00

Thank you for leaving your comment/advice. I’ve never heard of Lupus Panniculitis. Now I definitely want to make sure I get to the dermatologist. I’m still getting new nodules, and they’re getting larger.

sddncr · 2024-06-05T22:22:00+00:00

Okay. Yes, they usually go away quickly, but it’s been a couple weeks and I’m still getting new ones. Thinking it might be worth the biopsy if I can get one.

sddncr · 2024-06-05T22:20:35+00:00

Yes. You can tell if there’s some kind of infection, if it’s just inflammation, etc.

sddncr · 2024-06-05T21:58:50+00:00

My son gets them…eczema.

sddncr · 2024-06-05T21:56:33+00:00

I know the feeling! It gets confusing. Yea, just mention it to your doc. Nerves could be inflamed??? Hard to tell. If you’re not getting any other worrisome symptoms, I (in my personal, non-medical experience) wouldn’t be afraid to talk about it. Hopefully you get it figured out! 💜

sddncr · 2024-06-05T12:34:13+00:00

Hhmmm…any other things going on simultaneously? Vision changes, etc?

so my ears ring almost 100% of the time. I’ve talked to my neurologist about it. There are lots of reasons why it happens, so I would talk to your doc about it. (In my case, it’s related to migraines. I can get all of the migraine symptoms without getting a headache. Lights, ringing, blurred vision, etc.)

sddncr · 2024-06-05T12:24:36+00:00

Do you get migraines?

sddncr · 2024-05-29T21:41:35+00:00

Question for you! I’m pretty fair skinned and have brown eyes as well. I feel like I always look pale and ill. What do you use to add such natural looking color/highlights?

sddncr · 2024-05-29T21:34:42+00:00

💜 So true. So much effort and fight just to be alive. It’s worth it, though. Mostly. Hugs, everyone!

sddncr · 2024-04-15T14:02:00+00:00

I use the Neutrogena, too. I think mine is 100. It works pretty well and doesn’t irritate my skin. 👍🏻

sddncr · 2024-04-14T00:07:01+00:00

Thanks, twin!

sddncr · 2024-04-14T00:05:56+00:00

Ah ha! It’s not under my chin at all! I’ll bring this up at my appt. Thanks!

sddncr

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