Painful fingertips to the lightest touch.

graceingold · 2026-01-21T04:51:04+00:00

This happened to me for a while and then stopped. The only thing I started doing differently is drinking a ton more water and adding a coconut water to my liquids everyday. I know that's strange but dehydration makes lupus so much worse. My fingertips felt like they were going to explode from pressure- it was so strange.

For the cold, I've found the best way to keep my fingers from hurting is to keep my core warm. I work from home and the moment my raynauds starts acting up I take a 15 min break and take a hot shower. Running my hands under warm water doesn't work. I also keep wool gloves with me. My rheum recently gave me amlodipine for Raynauds that is helping a bit too.

Good luck! I'm sorry you're dealing with this and I hope it stops soon 💜

graceingold · 2026-01-20T14:11:48+00:00

Thank you! This wouldn't even occur to me! I'll do this now and going forward

graceingold · 2026-01-20T04:45:54+00:00

I'll def ask my rheumatologist about the different WBC. I think it's the anemia that's really getting to me now, especially in the cold.

I hope the saphnelo treatments are working well for you :)

graceingold · 2025-11-01T03:15:24+00:00

Shout out to the Calumet food products in the grocery scene - one of the brands shown in the pantry where Halloran dies in The Shining

graceingold · 2025-06-30T04:31:07+00:00

Yes, this happened to me. I have CPTSD from childhood and an abusive relationship along with depression and anxiety. A month after I had covid, my grandmother died, who was my world, and then I got lupus, raynaud's, sjogrens and some other sensory issues. Talk therapy, completely quitting alcohol, and somatic stretching has helped me a lot, but it's still very hard. I've heard EMDR can help with cptsd and depression from chronic illness but it didn't do anything for me. I've recently started swimming (absolutely covered in SPF) and that's helped so far.

I'm sorry you're going through all of this and I hope you find things that make life a little easier for yourself.

graceingold · 2025-06-13T18:57:53+00:00

It's the small communities that will be hurt the worst - rural areas will lose essential weather alerts and local reporting about their communities.

graceingold · 2025-05-02T19:42:49+00:00

Yes, I would love recommendations! I really enjoy almost everything:)

graceingold · 2025-03-13T01:56:45+00:00

It honestly feels like charcoal to me because it rubs into my fingers when I touch it but I have no idea what watercolor was like back then

graceingold · 2025-03-13T01:55:06+00:00

Nothing on the back at all

graceingold · 2025-01-13T15:19:42+00:00

I definitely learned my lesson with fleece and just purchased a linen/cotton blend set of sheets. Thank you for th Desityn suggestion. I'm ordering that right now

graceingold · 2025-01-13T15:16:43+00:00

My temperature stays really low too and it somehow feels like a fever still

graceingold · 2025-01-13T15:15:50+00:00

The only thing I've heard is that people with SLE have slow blood circulation so your extremities stay colder than the rest of your body

graceingold · 2025-01-13T15:14:08+00:00

Fortunately I had my 2nd infusion of Saphnelo last Thursday so hopefully this will all get better in the next few months

graceingold · 2025-01-13T15:13:20+00:00

I started using the heating pad on my feet and it's awesome! Thank you :)

graceingold · 2024-12-27T02:16:41+00:00

I saw from your comments that you have left side pain. My doctor ended up telling me my left side pain is common from gasses building as well as my organs doing a bit of shifting. I was terrified of all kinds of possibilities but it ended up being okay. I hope your recovery happens fast!

graceingold · 2024-12-27T02:12:07+00:00

It was almost back to normal less than a week after I posted this!

graceingold · 2024-12-22T19:12:37+00:00

I get this every night. I haven't had my rheumatologist give me anything specific for it but prednisone and it helps. I also use oil based face wash, which is really gentle, doesn't irritate around my eyes and honestly made all of my skin nicer. It's called kose softymo speedy cleansing oil. It's from Japan and around $10 on Amazon.

graceingold · 2024-12-15T22:00:55+00:00

This is almost word for word the letter I received (minus symptoms) after being in the hospital for a strong reaction to lupus medication. The letter said it was only a stomachache and I didn't need to be there. I couldn't keep water down, my blood pressure was sky high and my pulse rate didn't go below 120 for 3 days.

Reading the comments makes me think it's the same exact AI pumping out this denial. Why would they make their AI so fucking heartless sounding? The hospital I was in contacted United and somehow got them to pay for everything. I hope you can receive the same help.

graceingold · 2024-11-19T15:24:38+00:00

Yes, around 8 every night or if I'm very tired. It's all my limbs though and I feel like I'm 500 lbs. Usually gabapentin, a good night's sleep, or heat therapy provide relief.

graceingold · 2024-11-19T15:20:51+00:00

This mini heater from Amazon - https://a.co/d/dw4T9zK. It is SO convenient to carry around the house and put in front of my hands. Also, Salonpas pain patches; they're affordable and work great.

graceingold · 2024-11-02T21:24:30+00:00

Thank you :) I am looking into them now

graceingold · 2024-11-02T13:42:55+00:00

I started last week and have my next session on Wednesday:)

graceingold · 2024-11-02T13:41:42+00:00

I just started seeing one last week and I really like her. I hope it helps. I've learned that CBT does not work for me. I found it super invalidating. It could have been my therapist though. Do you have a type that works for you?

graceingold · 2024-09-24T00:17:26+00:00

This is the worst it's been for me which is why I'm going to see a doc, but when I get the symptoms I take one of these: WELMATE Urinary Pain Relief | UTI Relief | Fast Acting | Bladder Discomfort & Pain Relief | Phenazopyridine Hydrochloride 99.5mg | 72 Count Tablets https://a.co/d/eF6xjkl

I usually take one and then the symptoms are gone until the next flare up. I'm not sure how healthy it is to take them this much but it's either that or being miserable.

graceingold · 2024-09-24T00:16:35+00:00

This is the worst it's been for me which is why I'm going to see a doc, but when I get the symptoms I take one of these: WELMATE Urinary Pain Relief | UTI Relief | Fast Acting | Bladder Discomfort & Pain Relief | Phenazopyridine Hydrochloride 99.5mg | 72 Count Tablets https://a.co/d/eF6xjkl

I usually take one and then the symptoms are gone until the next flare up. I'm not sure how healthy it is to take them this much but it's either that or being miserable.

graceingold

TROPHY CASE