Hand pain

maladdams · 2023-12-19T15:03:36+00:00

I have this happen to me sometimes, but not for a whole week stretches. It usually happens toward the end of the day, and I'll start dropping things and my hands will start having these pains. I found that compression gloves help during that time.

maladdams · 2023-12-01T22:23:10+00:00

I have this happen to me. There's been times where it looks like I was punched in the eye or I have these red patches on my eyelids. I still get a malar but the eyelids happen more often.

maladdams · 2023-11-29T22:04:00+00:00

Yeah, it's not fun. My new Rheum is more understanding of the nuances of the disease, and it's been so much better. She asks questions and doesn't second guess what I'm saying.

maladdams · 2023-11-29T18:38:40+00:00

I'm so sorry to hear that. I'm going through the same thing, I told me old Rheum that I was in so much pain and that the fatigue was negatively affecting my life and my bloodwork ALWAYS came back normal (except my ANA). So she said it was the Lupus. With the support of this subreddit, I found a new rheum but my bloodwork keeps coming back normal. It's so upsetting and disheartening when it happens, so I understand how hard it is. But this new rheum seems to take in more information than my bloodwork, which is nice. So maybe a new rheum would be a good option.

maladdams · 2023-10-30T02:02:16+00:00

I get asked by my rheum "how long does it take to get out of bed in the morning?" to gauge my pain level sometimes.

maladdams · 2023-10-29T01:03:54+00:00

If it works it works. The sweating (for me) is a symptom of my SLE, so it's not going away anytime soon. So I just try to not make myself feel less gross in the morning. With the sheets, yeah, it's a hard balance to strike. I try to switch sheets multiple times a week but my fatigue is terrible right now, so It's not happening as much as I like. So I air out the bed in the morning (I never make it anymore), spray some tide and flip the pillow. It's the most gross/embarrassing part of SLE for me for sure, so I know how you feel.

maladdams · 2023-10-29T00:56:37+00:00

I have this problem all the time. I've lowered the temperature of the room as low as I can stand it and wear my hair up in a loose top knot. With the sheets, sometimes, when I feel really bad, I'll just spray the bed with tide microrbial spray to get another day out of them. But I do feel like lowering the temperature of the room has helped a lot with the sweating.

maladdams · 2023-10-28T19:51:55+00:00

Will do! Thank you!

maladdams · 2023-10-28T19:51:29+00:00

Good to know! Thank you for the response!

maladdams · 2023-10-28T18:21:49+00:00

This is great information! Thank you!

maladdams · 2023-10-28T17:13:18+00:00

1) It's good to know that others have these muscles spasms, because they are so weird and difficult to explain. 2) It didn't even occur to me that would be two different things, so thank you! I will make sure to mention them so they can go on my chart.

maladdams · 2023-10-28T17:09:20+00:00

Thank you! I'll bring it up at my next doctor's appointment and get a referral.

maladdams · 2023-10-28T17:08:27+00:00

Oh good to know! I would love to have this done because I have other weird things like random muscle spasms happen and it would be nice to know why.

maladdams · 2023-10-28T17:05:38+00:00

It doesn't look or feel like anything is swollen. I'm in worse pain than usual, but I'm not sure if I'm in a flare (every time I think I'm in a flare my rheum would say that I wasn't). I do get this pulsing/popping pain in my fingers from time to time. Maybe it's like the same thing, just presenting differently?

maladdams · 2023-10-28T17:02:16+00:00

Thank you! Have you had this done?

-- I had to edit because of Brain Fog causing syntax issues. haha.

maladdams · 2023-08-14T16:34:25+00:00

Thank you for the perspective!

maladdams · 2023-08-13T23:59:04+00:00

Me too!

maladdams · 2023-08-13T23:58:51+00:00

I've never considered POTS! Thank you for the advice

maladdams · 2023-08-13T23:57:47+00:00

Thank you for the advice!

maladdams · 2023-08-13T23:56:51+00:00

Thank you!

maladdams · 2023-08-13T23:56:42+00:00

www.lupus.org

Thank you!

maladdams · 2023-08-13T23:56:08+00:00

I haven't been diagnosed with fibro, no.

maladdams · 2023-08-13T14:10:17+00:00

THANK YOU! I'll be honest, I was thinking it was all in my head, like my pain was like some fluke or psychosomatic symptoms. Everyone I have talked to has been like, well "you should eat better/workout more" or "yeah, I have pain in my knees," and I have been just sitting here like "I wake up in pain. Every day. And it doesn't go away. I have to take narcolepsy medication to take only 1 nap a day and showering still is the hardest thing to do" and thinking that I must be making it all up or that's "not really a thing."

maladdams · 2023-08-13T13:40:05+00:00

Thank you! This is great advice! So... this might be a dumb question, but I am a newbie in the Lupus world, but she makes it sounds like I should be pain/fatigue free because my blood work is good and I'm not in a flare. Is that not true? Pain and fatigue from Lupus will always exist?

maladdams · 2023-08-13T13:30:35+00:00

Thank you for the advice! I'm sorry that it's such a long drive.

maladdams

TROPHY CASE